We followed up with Kara's allergist last Tuesday, which meant another trip to the cities, less than two days after getting home from there! I had called the allergist's office on Monday morning to let them know what happened over the weekend and they wanted to see her the next day, so, back we went!
I didn't have records or anything yet but the doctor and I talked about the circumstances of everything that happened. We decided to RAST test Kara for apple, due to the reaction and the hives, as well as RAST test a few other foods. I explained that I wanted her tested for corn. If Kara simply (ha!) had an IgE allergy to corn, that would explain so much! The reaction, the eosinophilic colitis, the swelling all of late summer and fall...I mean, EVERYTHING! She chose a few foods to add since we were doing blood work anyway, and then repeated the iron labs (Kara's iron saturation has been low in the past). She began asking about some other labs and what her results where from her inpatient stay. She asked about her TSH and I explained that I wasn't aware of Kara ever having that test ran, so that was added to the list as well.
We discussed future food trials and with that, Dr. Ott decided that we needed to re-trial chicken for two weeks since we were fairly certain it wasn't chicken that caused the reaction and then she wants us to re-trial the apple again. This is really scary, in case it was the apple that made her so sick, but if it wasn't, it would be a nice food to have back in her diet. I can only hope that we can recognize symptoms before they get that bad, if that's the case. After those two, it was suggested that we trial spinach. We shall see...
Dr. Ott called a few days later and let us know that Kara's TSH levels are very, very low. She called Kara's primary doctor and it was suggested that she now see an endocrinologist. Add one more specialist to the list, I suppose, but MAN, this has gotten just crazy. This does explain a lot of Kara's symptoms so I can only hope that this finding will help us out. We are waiting on hearing back on an endo appointment but for now, Kara will be going back to the clinic tomorrow for a bunch of lab work that the endocrinologist wants done before we go. Wonderful...
With the holiday celebrations behind us, we gave chicken a go tonight. Kara was so excited to have chicken with the rest of us. She took one bite and that was it. She covered her mouth with both hands if we said the word "chicken". It's hard to do a food trial when she won't eat the food! As we were cleaning up supper, she walked back to the table and took a few more bites on her own time. She's a bit stubborn that way! We are at the two hour mark and things are ok. I hope our night goes ok, chicken would be great to get back in her diet!!!
Wednesday, December 28, 2011
Wednesday, December 21, 2011
Reaction!
While Brian was gone at the store getting Kara's benedryl, Kara started getting really fussy and was in obvious pain. We had made plans for some family to come down to the hotel to have pizza with us and hang out so they were on their way and I was holding Kara, rocking, on the bed waiting for Brian to get back. She had a very obviously bloated tummy and I was getting really nervous. She finally had a full diaper of nasty, rotten diarrhea. It amazed me at how much and how sick it was making her. I was just finishing cleaning up when Brian walked back to the room. He called the front desk for air freshener, a clean bed sheet and comforter, and extra garbage bags. After this is all a little bit of a blur, other than knowing that something wasn't right. Brian's brother and his family got to the hotel and we went downstairs to wait for our pizza. Kara was snuggling on my lap and started getting really urpy. I thought for sure she was going to throw up so Brian helped me up to the room to get settled with her while Brenna stayed with Jon and Laura. Up at the room Kara continued to have diarrhea, over and over again. I called Brian and told him that she was really sick, if we were in our hometown that I would have had her in the ER already and that I had NONE of her records. They all came back upstairs, got ready to go and we started making plans. Luckily Brian has an Aunt and Uncle that live only minutes away from we were staying so his Aunt came and picked Brenna up and we packed a bag for Kara. At this point, Kara was nearly in shock, not really with it, at all, just SICK. I was waiting in the lobby for Brian to get Brenna settled in the car and Kara had another diarrhea episode, all through her onsie, pants, everything. I had her wrapped in a big blanket, didn't bother with shoes or a jacket, so luckily I was able to just re-wrap her in that. we hopped in the car, I held her in the back seat to try and keep her awake. We got to the ER and rushed in.
The nurse took us back and triaged us immediately. It was crazy busy in the ER at Children's that night. She said to take a seat and within a matter of minutes we were back in the room with the nurse, and the doctor in immediately after. Everything happened so quickly. The doctor came in, asked what our usual treatment is for these reactions and with that, the decision was made to be admitted and the nurse was back in starting the IV. Kara continued to have diaper after diaper in the ER. I had never seen anything like it. Not too long after the fluids were started, her tummy started to slow down a little bit and she was able to rest. We waited in the ER for what seemed like forever (probably because I just wanted to get up to a bed and get some rest!) and then were finally wheeled up to the room. They explained they were busier than they had been all year that night!
We got up to the room and the nurse did our admission and explained the process. Kara still needed to have an abdominal x-ray but they were hoping to be able to have it done with the portable up in the room. The resident would be in to do her admission and then the pediatrician would come in when she got a chance after that. I was told in the ER by the doctor that I would really like the pediatrician and that she thought I'd find that we really had a lot in common. I wondered what she meant by that as I snuggled Kara!
The resident came in and had a million questions for my tired brain to try and answer. I then had a million questions for her. I would start with "this is probably a question for the GI team tomorrow, but..." and she amazed me by being able to answer nearly every one of my questions! She finished things up saying that the doctor would be in at some point and apologized for how busy they were that night!
We finished up the admission with the RN, had Kara's x-ray done (in the room!) and she slept through everything. As we were finishing up, another person came in the room, introducing herself as the Pediatric Hospitalist. She apologized for being so late and that she had been trying to get in there all night, sicne she found out the reason we were being admitted. She pulled the chair right up to me in the bed and said "I know exactly what you are going through. My eleven year old son is on Elecare. I've been through all of this and know what it's like!" I was SHOCKED. She said her resident on that day was thisclose to graduating and being a doctor and she was lucky to have her that night because she was so good. Being that the resident and I got everything nearly cleared up, this gave the Pediatrician and I some time to talk. I can't even explain how good it felt to talk to a DOCTOR who knows what we go through! She was my life saver that night. She said she wished she was on for the entire weekend because she considered Kara "hers" and wished us the absolute best.
Kara and I slept until about 8:00 the next morning, since it was basically four a.m. before I fell asleep. We had a day of doctors and nurses and the GI team come in. The day pediatrician was amazing as well. He reminded me of one of my Uncles, who absolutely adores little kids! He let me know to let them know what we need, that I was running the show. She could try a bottle later on in the afternoon if she wanted to and we would see how she did throughout the day. We rested, colored pictures, played in the bed a little bit and rested some more, as well as had a little bit of company. Kara had a few more icky diapers but her tummy settled down pretty good. By Saturday evening she had taken her second bottle, drinking about half of each one. She continued to have a few minor episodes but I was fairly confident we could go home the next morning. She tends to need about 24 hours of nothing by mouth and then we seem to be able to slowly add formula and then foods again.
Sunday morning the GI doctor came in adn said she was probably ok to go home. He explained that we may see some diarrhea here and there as she continues to get better so not to be alarmed. They paged the peds team to come in and discharge us, and we were out of the hospital at 11:00. Kara was so excited to have her IV out, and get to go home and see her Brenna!
The nurse took us back and triaged us immediately. It was crazy busy in the ER at Children's that night. She said to take a seat and within a matter of minutes we were back in the room with the nurse, and the doctor in immediately after. Everything happened so quickly. The doctor came in, asked what our usual treatment is for these reactions and with that, the decision was made to be admitted and the nurse was back in starting the IV. Kara continued to have diaper after diaper in the ER. I had never seen anything like it. Not too long after the fluids were started, her tummy started to slow down a little bit and she was able to rest. We waited in the ER for what seemed like forever (probably because I just wanted to get up to a bed and get some rest!) and then were finally wheeled up to the room. They explained they were busier than they had been all year that night!
We got up to the room and the nurse did our admission and explained the process. Kara still needed to have an abdominal x-ray but they were hoping to be able to have it done with the portable up in the room. The resident would be in to do her admission and then the pediatrician would come in when she got a chance after that. I was told in the ER by the doctor that I would really like the pediatrician and that she thought I'd find that we really had a lot in common. I wondered what she meant by that as I snuggled Kara!
The resident came in and had a million questions for my tired brain to try and answer. I then had a million questions for her. I would start with "this is probably a question for the GI team tomorrow, but..." and she amazed me by being able to answer nearly every one of my questions! She finished things up saying that the doctor would be in at some point and apologized for how busy they were that night!
We finished up the admission with the RN, had Kara's x-ray done (in the room!) and she slept through everything. As we were finishing up, another person came in the room, introducing herself as the Pediatric Hospitalist. She apologized for being so late and that she had been trying to get in there all night, sicne she found out the reason we were being admitted. She pulled the chair right up to me in the bed and said "I know exactly what you are going through. My eleven year old son is on Elecare. I've been through all of this and know what it's like!" I was SHOCKED. She said her resident on that day was thisclose to graduating and being a doctor and she was lucky to have her that night because she was so good. Being that the resident and I got everything nearly cleared up, this gave the Pediatrician and I some time to talk. I can't even explain how good it felt to talk to a DOCTOR who knows what we go through! She was my life saver that night. She said she wished she was on for the entire weekend because she considered Kara "hers" and wished us the absolute best.
Kara and I slept until about 8:00 the next morning, since it was basically four a.m. before I fell asleep. We had a day of doctors and nurses and the GI team come in. The day pediatrician was amazing as well. He reminded me of one of my Uncles, who absolutely adores little kids! He let me know to let them know what we need, that I was running the show. She could try a bottle later on in the afternoon if she wanted to and we would see how she did throughout the day. We rested, colored pictures, played in the bed a little bit and rested some more, as well as had a little bit of company. Kara had a few more icky diapers but her tummy settled down pretty good. By Saturday evening she had taken her second bottle, drinking about half of each one. She continued to have a few minor episodes but I was fairly confident we could go home the next morning. She tends to need about 24 hours of nothing by mouth and then we seem to be able to slowly add formula and then foods again.
Sunday morning the GI doctor came in adn said she was probably ok to go home. He explained that we may see some diarrhea here and there as she continues to get better so not to be alarmed. They paged the peds team to come in and discharge us, and we were out of the hospital at 11:00. Kara was so excited to have her IV out, and get to go home and see her Brenna!
Tuesday, December 20, 2011
Family Fun
I've been meaning to get on here and update over the last few weeks but Kara had been doing so well, that I really didn't have much to update on! No news is good news, right? We made it about three weeks with no travelling and Kara was successfully able to tolerate potato and sweet potato! We had a wonderful Thanksgiving and most recently, made a trip to the cities for a fun, family trip.
We received a gift certificate from the local Holiday Inn Express for our family down in the cities to use for a trip down there for fun when they donated water park passes to Kara's benefit. Realizing earlier last week that it expired at the end of the year, we decided that last weekend was the perfect time, before the crazy holidays start, to take this trip! We had our shopping done early, Kara had been doing great, and we were ready for a little family vacation!
We left Thursday afternoon. We got a later start because everything was taking longer than I had anticipated. We finally were able to pick the girls up from daycare and head out! We were about ten miles down the road when I realized I forgot the girls swim suits and we had to run back to the house. We turned around and not too much after that Kara threw up! She ended up fine, I figured it was from her sticking her fingers in her mouth and gagging herself. (she ALWAYS has her fingers in her mouth!!) We ran in the house and got her cleaned up and then once we were convinced she was ok, got back on the road again.
Friday we had a wonderful day. We got to the Children's Museum right as the opened and spent a few hours there. I think we all had a lot of fun there! The girls were pretty amazed at all the cool things there was for them to do! After that we decided to go to Mall of America. Both girls napped in the car during the short ride there but it was enough to rally them for the next stop! We walked around and decided to go to Nickelodeon Adventures first, to wear them out. We were checking out the ride prices and a guy stopped us offering us a ticket with 100 points on it for less than a quarter of the price so we took him up on it! Little did we know how long it would take us to use up 100 points! The girls went on ride after ride, loving all of it! We used up our tickets, finally, and decided to go back to the hotel. I think Brian and I were more tired than the girls were!
We had a great time and created lots of memories that day. We were thinking about heading to the Holidazzle Parade or just staying in and ordering pizza. We were all pretty wiped out and Kara was feeling a little off and clingy but seemed ok. She barely had an aappetite all day so that was a little concerning and we were noticing her bright red cheeks, but with how sensitive her skin is, it doesn't take much to flare it up. We got back to the hotel and our sleepy girl was pretty lethargic. We laid her down on the bed to change her diaper and I noticed that her eczema looked awful. I had no bendryl with me (will I EVER learn???) and set her up to watch Caillou on the computer while Brian went to find a Walgreens to pick up some Benedryl. Little did we know what the rest of the night was going to bring!
We received a gift certificate from the local Holiday Inn Express for our family down in the cities to use for a trip down there for fun when they donated water park passes to Kara's benefit. Realizing earlier last week that it expired at the end of the year, we decided that last weekend was the perfect time, before the crazy holidays start, to take this trip! We had our shopping done early, Kara had been doing great, and we were ready for a little family vacation!
We left Thursday afternoon. We got a later start because everything was taking longer than I had anticipated. We finally were able to pick the girls up from daycare and head out! We were about ten miles down the road when I realized I forgot the girls swim suits and we had to run back to the house. We turned around and not too much after that Kara threw up! She ended up fine, I figured it was from her sticking her fingers in her mouth and gagging herself. (she ALWAYS has her fingers in her mouth!!) We ran in the house and got her cleaned up and then once we were convinced she was ok, got back on the road again.
Friday we had a wonderful day. We got to the Children's Museum right as the opened and spent a few hours there. I think we all had a lot of fun there! The girls were pretty amazed at all the cool things there was for them to do! After that we decided to go to Mall of America. Both girls napped in the car during the short ride there but it was enough to rally them for the next stop! We walked around and decided to go to Nickelodeon Adventures first, to wear them out. We were checking out the ride prices and a guy stopped us offering us a ticket with 100 points on it for less than a quarter of the price so we took him up on it! Little did we know how long it would take us to use up 100 points! The girls went on ride after ride, loving all of it! We used up our tickets, finally, and decided to go back to the hotel. I think Brian and I were more tired than the girls were!
We had a great time and created lots of memories that day. We were thinking about heading to the Holidazzle Parade or just staying in and ordering pizza. We were all pretty wiped out and Kara was feeling a little off and clingy but seemed ok. She barely had an aappetite all day so that was a little concerning and we were noticing her bright red cheeks, but with how sensitive her skin is, it doesn't take much to flare it up. We got back to the hotel and our sleepy girl was pretty lethargic. We laid her down on the bed to change her diaper and I noticed that her eczema looked awful. I had no bendryl with me (will I EVER learn???) and set her up to watch Caillou on the computer while Brian went to find a Walgreens to pick up some Benedryl. Little did we know what the rest of the night was going to bring!
Saturday, November 19, 2011
Two Years Ago
We will be heading up to work the fire departments turkey bingo very soon and it's this day that once again, is bringing me back to day one of our FPIES journey. Sadly, not much has changed and we've actually gone backwards from where we were a year ago but Kara has been happy today, absolutely full of spunk and energy and is looking better than she has in months lately! We have learned so much and continue to learn more with each day about what is going on with her body. Sometimes its one day at a time but thankfully, she is thriving.
Please read last years post to see the first reaction and where we were at both one and two years ago. Today is bittersweet.
Please read last years post to see the first reaction and where we were at both one and two years ago. Today is bittersweet.
Potatoes!
Kara has a food! We continued our food trial for a good 16-17 days until we felt comfortable saying it was a pass. She loves potatoes and they seemed to love her too! She does have tummy pain here and there but I believe that is related to the eosinophilc colitis, simply causing her pain because everything that comes out of her is consistent with her baseline! :)
The other night we were ready to start something else, as Kara was getting pretty tired of potato every single day. I had some pureed sweet potatoes in the house so we went ahead with those as our next food trial. She's loving them and we are on day four of them and so far, they seem to be agreeing. My thought process as the what food to try next went from one food to the next, with no real rhyme or reason and sweet potatoes wasn't even one I was considering. I'm not real sure what happened, in a weak moment, I just decided we should go for it! I watched the clock that night like a hawk. Each little burp and fuss I questioned but Kara slept through the night that night! We'll do at least 14 days of this trial as well, which is good - hopefully I'll have done a little more prepping in the "what shall we try next" list!
The other night we were ready to start something else, as Kara was getting pretty tired of potato every single day. I had some pureed sweet potatoes in the house so we went ahead with those as our next food trial. She's loving them and we are on day four of them and so far, they seem to be agreeing. My thought process as the what food to try next went from one food to the next, with no real rhyme or reason and sweet potatoes wasn't even one I was considering. I'm not real sure what happened, in a weak moment, I just decided we should go for it! I watched the clock that night like a hawk. Each little burp and fuss I questioned but Kara slept through the night that night! We'll do at least 14 days of this trial as well, which is good - hopefully I'll have done a little more prepping in the "what shall we try next" list!
Biopsies
Last week, while down at Mayo, I received the much anticipated phone call from Kara's Children's GI Doctor. The news we received has pretty much left me at a loss of words on so many levels.
We found out that Kara's esophagus showed mild, but chonic esophagitis, consistent with that of reflux. The plan for this? A trial of preferably Prilosec, but Zantac would be ok too. I discussed how we'd trialed Prilosec in the past but Kara didn't seem to tolerate it very well. I said, at the time, that I was ok with trialing it again since we have both at home in the cabinet. Since then, I chickened out, and we are doing Zantac. At least until we can get in and see the doctor and discuss all of these findings and a plan for the upcoming months.
The middle parts of the scope were clear, in fact, looked great. It was the bottom half, the results of the sigmoidoscopy, that has put me in this pretty much silence as I try and process what has happened in the past, where we are at presently, and what is to come in the future. Kara's biopsies show Eosinophilic Colitis. I can't get a good handle on what this means, however, this is what we were supposed to be RULING OUT. This is exactly what I had in mind all those months when I begged and pleaded with the doctors at the U of MN to please scope my child so we can rule out every possibility of why she was having so much pain. All those months, they neglected to listen to me, neglected to take me seriously, neglected to take care of my child, other than pumping her full of fluids and then sending her home.
As each day passes, I'm reading a little more about this, trying to understand it. On Monday sometime, her GI doctor will be calling me to hopefully help me with these results a little further. Kara also has an appointment with the GI Nurse Practitioner on Wednesday so we will further develop a plan. Until then, we are just taking things day by day trying to get a handle on these newest findings.
We found out that Kara's esophagus showed mild, but chonic esophagitis, consistent with that of reflux. The plan for this? A trial of preferably Prilosec, but Zantac would be ok too. I discussed how we'd trialed Prilosec in the past but Kara didn't seem to tolerate it very well. I said, at the time, that I was ok with trialing it again since we have both at home in the cabinet. Since then, I chickened out, and we are doing Zantac. At least until we can get in and see the doctor and discuss all of these findings and a plan for the upcoming months.
The middle parts of the scope were clear, in fact, looked great. It was the bottom half, the results of the sigmoidoscopy, that has put me in this pretty much silence as I try and process what has happened in the past, where we are at presently, and what is to come in the future. Kara's biopsies show Eosinophilic Colitis. I can't get a good handle on what this means, however, this is what we were supposed to be RULING OUT. This is exactly what I had in mind all those months when I begged and pleaded with the doctors at the U of MN to please scope my child so we can rule out every possibility of why she was having so much pain. All those months, they neglected to listen to me, neglected to take me seriously, neglected to take care of my child, other than pumping her full of fluids and then sending her home.
As each day passes, I'm reading a little more about this, trying to understand it. On Monday sometime, her GI doctor will be calling me to hopefully help me with these results a little further. Kara also has an appointment with the GI Nurse Practitioner on Wednesday so we will further develop a plan. Until then, we are just taking things day by day trying to get a handle on these newest findings.
Friday, November 11, 2011
Mayo GI
We have been way too busy the past couple of weeks with way too much travelling. This week brought a week down at the Mayo Clinic for an additional set of eyes on Kara, since we've had so much trouble with finding a reliable GI doctor in the past. We were unsure of how our new GI team was going to be so with our family doctor, decided to keep these Mayo appointments since they were scheduled two months ago!
Monday afternoon Kara, Grandma Cindy (Brian's Mom) and I headed to Rochester, a four hour drive south of us, for the week. She had an early Tuesday morning appointment with a GI doctor and a Thursday noon appointment with allergy.
Tuesday morning, we arrived at GI and I was very impressed with Dr. Grothe, who understood exactly why we were there and had the same questions I did as far as why the U of MN did things the way they did and why they failed to scope Kara despite months of her being in pain, having symptoms, and us basically begging them to, along with our allergist. I let Dr. Grothe know that we had very recent luck in finding a new GI team, and she was just recently scoped, yet we didnt' have biopsy results back yet. It was very relieving to know that Dr. Grothe was on the same page as we were, as far as wondering what the heck was going on in the thinking of the care we received at the U, and that she would have done things the same as Children's (New GI team) had done. We heard basically the same things that we already knew, Kara is growing and doing ok on the formula, and unfortunately, there is not much else we can do right now, but she was very interested in hearing how the biopsy results came out. She gave me her email and requested I email her the results as well as let her know if we had any questions.
We got our foot in the door, so if Kara needs additional care, from what Children's can give us, we will have Dr. Grothe available, which is a relief, despite it being so far away. It is still closer than Cincinnati is, and we are still on a stand still with them, waiting to see if we need to go or not. I was trying to stay positive that Kara's scope LOOKED ok, from the human eye but reminding myself that the biopsies will be the true test of what we have to come.
Monday afternoon Kara, Grandma Cindy (Brian's Mom) and I headed to Rochester, a four hour drive south of us, for the week. She had an early Tuesday morning appointment with a GI doctor and a Thursday noon appointment with allergy.
Tuesday morning, we arrived at GI and I was very impressed with Dr. Grothe, who understood exactly why we were there and had the same questions I did as far as why the U of MN did things the way they did and why they failed to scope Kara despite months of her being in pain, having symptoms, and us basically begging them to, along with our allergist. I let Dr. Grothe know that we had very recent luck in finding a new GI team, and she was just recently scoped, yet we didnt' have biopsy results back yet. It was very relieving to know that Dr. Grothe was on the same page as we were, as far as wondering what the heck was going on in the thinking of the care we received at the U, and that she would have done things the same as Children's (New GI team) had done. We heard basically the same things that we already knew, Kara is growing and doing ok on the formula, and unfortunately, there is not much else we can do right now, but she was very interested in hearing how the biopsy results came out. She gave me her email and requested I email her the results as well as let her know if we had any questions.
We got our foot in the door, so if Kara needs additional care, from what Children's can give us, we will have Dr. Grothe available, which is a relief, despite it being so far away. It is still closer than Cincinnati is, and we are still on a stand still with them, waiting to see if we need to go or not. I was trying to stay positive that Kara's scope LOOKED ok, from the human eye but reminding myself that the biopsies will be the true test of what we have to come.
The Scope
Last Thursday Brian, Kara and I headed to Minneapolis to prepare for Kara's EGD and Sigmoidoscopy the next day at Children's Hospital. Her procedure was scheduled for 12:15 with a 10:45 arrival time which meant no formula from 4:45 on. We figured it was going to be a long mornng, which it was.
Kara woke up at 3:30 for a bottle which is about her usual time, then went back to sleep. When she awoke for the day, around 8:00, she was not a happy camper about not getting anything to drink! We fought this battle pretty continuous until they took her back for her procedure!
We arrived at Children's and were visited by many members of the surgical team. With each person, we discussed Kara's past anesthesia history to make sure everyone was aware. We signed paperwork to have additional records faxed over before the procedure and spoke at length with the GI, Anesthesiologist Nurse Anesthesist. The plan was to do the procedure with as little meds as possible since we are still unsure of what caused her scary cardiac reactions last year.
Kara ended up napping and woke up right before they were ready to take her back. I was able to carry her back to the OR again and hold her in my arms as they put the mask on her to put her to sleep. She wasn't happy and was fighting it with screaming, which only makes the medicine work better! Within seconds, she was sound asleep and I was on my way back to wait. Thirty minutes later, Dr. Aru met with us to let us know that our girl is just as cute on the inside as she is on the out! He said her insides looked good, meaning there was no visible inflammation but final results would be pending the biopsies. He explained how difficult FPIES is but again, we are doing everything we can possibly do for Kara right now, despite how frustrating the process is right now.
Kara's heart behaved itself with her pulse not rising above 150. Quite the acheivement, considering after her first scope she was in the 200's while sleeping! I rocked her and tried to console her, watching those monitors like a hawk, but she continued to do just fine, impressing everyone. The recovery went well and despite thinking we were going to have at least a one, if not two day stay after the procedure, we were on our way home at 3:00!!! We were told we'd be called later in the week with the biopsy results.
Kara woke up at 3:30 for a bottle which is about her usual time, then went back to sleep. When she awoke for the day, around 8:00, she was not a happy camper about not getting anything to drink! We fought this battle pretty continuous until they took her back for her procedure!
We arrived at Children's and were visited by many members of the surgical team. With each person, we discussed Kara's past anesthesia history to make sure everyone was aware. We signed paperwork to have additional records faxed over before the procedure and spoke at length with the GI, Anesthesiologist Nurse Anesthesist. The plan was to do the procedure with as little meds as possible since we are still unsure of what caused her scary cardiac reactions last year.
Kara ended up napping and woke up right before they were ready to take her back. I was able to carry her back to the OR again and hold her in my arms as they put the mask on her to put her to sleep. She wasn't happy and was fighting it with screaming, which only makes the medicine work better! Within seconds, she was sound asleep and I was on my way back to wait. Thirty minutes later, Dr. Aru met with us to let us know that our girl is just as cute on the inside as she is on the out! He said her insides looked good, meaning there was no visible inflammation but final results would be pending the biopsies. He explained how difficult FPIES is but again, we are doing everything we can possibly do for Kara right now, despite how frustrating the process is right now.
Kara's heart behaved itself with her pulse not rising above 150. Quite the acheivement, considering after her first scope she was in the 200's while sleeping! I rocked her and tried to console her, watching those monitors like a hawk, but she continued to do just fine, impressing everyone. The recovery went well and despite thinking we were going to have at least a one, if not two day stay after the procedure, we were on our way home at 3:00!!! We were told we'd be called later in the week with the biopsy results.
Tuesday, November 8, 2011
The Benefit
Saturday, October 29th, some of the most amazing friends and family we could ask for held a benefit for Kara and our family. The response received surpassed all expectations as our small communities came together in support. With the help and direction of two wonderful women, our fire department, which Brian is a seven year member of, and auxilliary, this event included a silent auction, bake sale, raffle, and spaghetti dinner.
The funds we received from this benefit have taken a huge weight off of our shoulders as we are able to pay off the last two years of maxing deductibles and out of pockets, traveling expenses since Kara's specialists are all two and a half hours away, and covering daily expenses since my days home with her seem to be increasing more and more lately!
The timing of this event was wonderful as Kara went back on her elemental diet and failed her first food re-trial. What we have in our small, wonderful community is more support than we ever could have asked for.
The funds we received from this benefit have taken a huge weight off of our shoulders as we are able to pay off the last two years of maxing deductibles and out of pockets, traveling expenses since Kara's specialists are all two and a half hours away, and covering daily expenses since my days home with her seem to be increasing more and more lately!
The timing of this event was wonderful as Kara went back on her elemental diet and failed her first food re-trial. What we have in our small, wonderful community is more support than we ever could have asked for.
Sunday, October 30, 2011
On the News!
On our way home from the cities on Thursday, I received a text from Lori, one of the gals who was coordinating Kara's benefit. "Call Shane with Lakeland News..."
Holy crap. News? We had an amazing crew putting together a benefit for Kara that was on Saturday. More on that in another post, or two. It's processing in my mind still, the wonderful support we received over the weekend. Anyway, back to the news.
We waited and waited for the girls to calm down, settle in and fall asleep before I got on the phone to call Shane. Of course, the girls were boycotting falling asleep. Go figure. I finally was able to get on the phone and he asked if he could come and interview our family about Kara and the benefit the next day. Yep, absolutely! Yep, we'll see you at 11:00!
They were at our house for a while and there were parts of the interview that I mastered and parts that I really stumbled on. Of course, it seems the parts they played of me talking are the two parts that I struggled with. Go figure! Anyway, we made our few minutes of fame! Here's a link to the segment, but keep in mind, this is a local public broadcasting station! :) Kara Nelson Benefit (I'm being an awful critic of myself, but Kara was adorable and that's all that matters!!! I need some R&R!)
Holy crap. News? We had an amazing crew putting together a benefit for Kara that was on Saturday. More on that in another post, or two. It's processing in my mind still, the wonderful support we received over the weekend. Anyway, back to the news.
We waited and waited for the girls to calm down, settle in and fall asleep before I got on the phone to call Shane. Of course, the girls were boycotting falling asleep. Go figure. I finally was able to get on the phone and he asked if he could come and interview our family about Kara and the benefit the next day. Yep, absolutely! Yep, we'll see you at 11:00!
They were at our house for a while and there were parts of the interview that I mastered and parts that I really stumbled on. Of course, it seems the parts they played of me talking are the two parts that I struggled with. Go figure! Anyway, we made our few minutes of fame! Here's a link to the segment, but keep in mind, this is a local public broadcasting station! :) Kara Nelson Benefit (I'm being an awful critic of myself, but Kara was adorable and that's all that matters!!! I need some R&R!)
Scope Update
Friday morning Abby called me. She realized that they had scheduled Kara at the outpatient surgery center in Minnetonka for her scope and because of Kara's history, she'd need to be scoped in the hospital and need to be kept over for observation. She was able to speak with Dr. Aru, who is actually going to be on hospital service this week, and he said he'd put her into the schedule. This actually works out great because he will be the doctor that will be following then, when she is there after the scope. She let me know that we wouldn't be able to meet him until the day of the scope, but that he'd be calling me later that day when he was done in surgery to further discuss.
Wow. In the last six months at the U we got nothing but the runaround and in one appointment with the new GI, we get what Kara needed, what the Allergist had been wanting, and it's goign to be done in under a week from the first appointment. Simply amazing.
Dr. Aru called around 5:00 on Friday. We spoke briefly about what's currently going on with Kara. He gave us the OK to start our next food, potato, if we wanted, but that was perfectly fine if we wanted to wait, too. It really didn't matter either way. He said scheduling will be calling us Monday morning and she will most likely be scoped Wednesday or Thursday morning.
Another busy week awaits us but as long as we have progress, I'll take it! :)
Wow. In the last six months at the U we got nothing but the runaround and in one appointment with the new GI, we get what Kara needed, what the Allergist had been wanting, and it's goign to be done in under a week from the first appointment. Simply amazing.
Dr. Aru called around 5:00 on Friday. We spoke briefly about what's currently going on with Kara. He gave us the OK to start our next food, potato, if we wanted, but that was perfectly fine if we wanted to wait, too. It really didn't matter either way. He said scheduling will be calling us Monday morning and she will most likely be scoped Wednesday or Thursday morning.
Another busy week awaits us but as long as we have progress, I'll take it! :)
Allergy and GI
Monday morning I called MN Gastro, the group that the new GI is through. I was able to talk to the Nurse Coordinator, who was wonderful. She had notes that the Dr. had written on Kara and let us know that they were able to get Kara in to see their Nurse Practitioner on Thursday of last week or one of the other GI's the next day. I let her know that I wanted to go with Dr. Ott's suggestion on Dr. Aru and after discussing Kara's care and their processes, agreed to have Kara see Abby, their Nurse Practitioner. In this phone conversation I was able to go through with the nurse, what our experience had been with the U and was able to ask her what their processes are with care. Everything from this conversation made things sound very promising and gave me hope.
Kara saw Dr. M, her primary doctor, on Wednesday for labs, a height and weight check, and just a general check in of how the last few weeks have been going. Kara was SOOOOO excited to see Dr. M, squealing and ran right to her when she walked into the room. She sat right with her on the chair during the appointment! Kara's weight has dropped just slightly, which wasn't all that surprising since she's only been on formula. She went from 26.4 pounds to 26 pounds even. She is 32 3/4 inches tall. That's 22% for weight and 13% for height at almost 2 1/2 years old. She's hanging in there, having gained a little on the height curve and dropped a little on the weight curve but for the most part she's been maintaining her own little curve on the growth chart and that's all we can ask for at this point.
Dr. M. mentioned her paleness right away. I let her know that Kara actually looked pretty good that day, as she had pink in her cheeks but was still very puffy. We discussed labs, since Kara's had some off iron labs in the past and agreed that those would be run. She also had some additional labs done to check other levels that might give us an idea on some nutrition issues.
We headed to Minneapolis Wednesday night, as Kara had an 8:30 appointment with Dr. Ott the next day. I had made this appointment to follow up with Dr. Ott following Kara's reaction the week before and also as a prep to our new GI appointment. As usual, Dr. Ott impressed us, spending lots of time with us, encouraging us that we will get help and will get this figured out. Kara has some upcoming appointments scheduled at Mayo in a week now, and I let her know this. We have both a GI and Allergy appointment so I wanted her to know that, as they Ave been on the calendar for over two months now! I let her know that I don't think we need allergy, as we have her on our team and she's been amazing. She asked who we are seeing, let us know that that doctor is a colleague of hers and that she would love for us to see her and to see what her take is on Kara, to see if she has any additional ideas regarding her care. She strongly suggested we keep both of these appointments since we already had them made. She checked over Kara's labs, which surprisingly came back pretty good, with the exception of her liver function tests. She's said she'd let GI handle that, since she wasn't quite sure what to think since they were elevated. With that, we left, knowing that we have her and her office's full support in Kara's care.
We headed to St. Paul for Kara's appointment with Abby at MN Gastro. We gave a full history and I had very brief notes about Kara's history from her first food fail, to save us some time because these history parts of the appointment are SO time consuming and confusing! Abby came in to the room and Kara was so welcoming, liking her from the beginning. She reviewed Dr. Ott's notes and we basically pleaded to her that we needed them to help us, explaining how things have gone at the U. She basically said "Dr. Ott wants a scope? Then we'll scope her!" Dr. Ott, at this point, feels that we could be completely missing something digestively that we are blaming on food. Since Kara had corn safe for so long, or so we thought, and upon re-introduction, failed it, we are all completely puzzled at this situation. Abby wasn't too sure either, but made it sound very promising that they would get to the bottom of it, and if they couldn't figure it out after exhausting their efforts, they'd send us to Cincinnati in a heartbeat, but at this point, there's no sense to go there when there is so much we can rule out here first. (THANK YOU.) I'm still so confused at what the deal is/was with the U and really feel like they were just done, had no interest, therefor did nothing to go out of their way to help us. It sucks, and we essentially wasted A LOT of time, energy, and emotion trying to get through this with them.
We left this appointment with a scope scheduled, two weeks away with an appointment the day before meeting the doctor. I was perfectly satisfied with the way this appointment went, and breathed a great sigh of relief, a weight of 10,000 pounds finally lifted off my chest. Abby said she'd be in touch after speaking with Dr. Aru on Monday with further instruction, as far as whether or not we could begin food trials again, or to wait for the scope.
Kara saw Dr. M, her primary doctor, on Wednesday for labs, a height and weight check, and just a general check in of how the last few weeks have been going. Kara was SOOOOO excited to see Dr. M, squealing and ran right to her when she walked into the room. She sat right with her on the chair during the appointment! Kara's weight has dropped just slightly, which wasn't all that surprising since she's only been on formula. She went from 26.4 pounds to 26 pounds even. She is 32 3/4 inches tall. That's 22% for weight and 13% for height at almost 2 1/2 years old. She's hanging in there, having gained a little on the height curve and dropped a little on the weight curve but for the most part she's been maintaining her own little curve on the growth chart and that's all we can ask for at this point.
Dr. M. mentioned her paleness right away. I let her know that Kara actually looked pretty good that day, as she had pink in her cheeks but was still very puffy. We discussed labs, since Kara's had some off iron labs in the past and agreed that those would be run. She also had some additional labs done to check other levels that might give us an idea on some nutrition issues.
We headed to Minneapolis Wednesday night, as Kara had an 8:30 appointment with Dr. Ott the next day. I had made this appointment to follow up with Dr. Ott following Kara's reaction the week before and also as a prep to our new GI appointment. As usual, Dr. Ott impressed us, spending lots of time with us, encouraging us that we will get help and will get this figured out. Kara has some upcoming appointments scheduled at Mayo in a week now, and I let her know this. We have both a GI and Allergy appointment so I wanted her to know that, as they Ave been on the calendar for over two months now! I let her know that I don't think we need allergy, as we have her on our team and she's been amazing. She asked who we are seeing, let us know that that doctor is a colleague of hers and that she would love for us to see her and to see what her take is on Kara, to see if she has any additional ideas regarding her care. She strongly suggested we keep both of these appointments since we already had them made. She checked over Kara's labs, which surprisingly came back pretty good, with the exception of her liver function tests. She's said she'd let GI handle that, since she wasn't quite sure what to think since they were elevated. With that, we left, knowing that we have her and her office's full support in Kara's care.
We headed to St. Paul for Kara's appointment with Abby at MN Gastro. We gave a full history and I had very brief notes about Kara's history from her first food fail, to save us some time because these history parts of the appointment are SO time consuming and confusing! Abby came in to the room and Kara was so welcoming, liking her from the beginning. She reviewed Dr. Ott's notes and we basically pleaded to her that we needed them to help us, explaining how things have gone at the U. She basically said "Dr. Ott wants a scope? Then we'll scope her!" Dr. Ott, at this point, feels that we could be completely missing something digestively that we are blaming on food. Since Kara had corn safe for so long, or so we thought, and upon re-introduction, failed it, we are all completely puzzled at this situation. Abby wasn't too sure either, but made it sound very promising that they would get to the bottom of it, and if they couldn't figure it out after exhausting their efforts, they'd send us to Cincinnati in a heartbeat, but at this point, there's no sense to go there when there is so much we can rule out here first. (THANK YOU.) I'm still so confused at what the deal is/was with the U and really feel like they were just done, had no interest, therefor did nothing to go out of their way to help us. It sucks, and we essentially wasted A LOT of time, energy, and emotion trying to get through this with them.
We left this appointment with a scope scheduled, two weeks away with an appointment the day before meeting the doctor. I was perfectly satisfied with the way this appointment went, and breathed a great sigh of relief, a weight of 10,000 pounds finally lifted off my chest. Abby said she'd be in touch after speaking with Dr. Aru on Monday with further instruction, as far as whether or not we could begin food trials again, or to wait for the scope.
Saturday, October 22, 2011
Losing Hope
On Wednesday I left a message for Kara's doctor to call me. Kara is looking very pale (had somewhat concerning iron levels a few months ago that we were going to keep an eye on) and with all that had gone on I thought it would be important for Kara to be seen by her. It had been a while. Not to mention, we are in need of a weight and height check, a flu shot, and a few other things that need to be taken care of. Her doctor was out of the office for the rest of the week and her schedule for next week is booked solid. Her nurse assured me she would talk to her on Monday and they would do everything they can to get Kara in. Dr. M is the only one who has seen Kara in a long time and we need her, not starting our story over with someone new. I'm holding onto hope that we can get her in soon.
On Thursday afternoon I left a message with the nurse from Cincinnati letting her know that I was beginning to wonder if Kara was going to be reacting to corn. I heard nothing back and called right away Friday morning to let her know that yes, Kara was for sure reacting to the corn. You know, just in case they could by some chance get her in Monday morning, we would fly out Sunday. I was prepared for anything. They want to see her reacting? Now was the time! As I said in my previous post, yesterday, Friday, came and went and I heard nothing back from them. I am beyond disappointed and have given up hope in them.
I called Kara's allergy office on Thursday letting them know that I was wondering if Kara was starting to have problems with the corn, after having her first large slime diaper, going from baseline to that - no middle ground. Her allergist simply said that one episode isn't concerning to her at this point but to keep them updated and of course, to watch for blood in her stool. I called them right away Friday morning when we woke up to let them know the details of our night and how she was definitely reacting to the corn. She spoke with the doctor and her info was that she wants us to either contact GI and let them know, knowing what a pain in the butt the U of MN is, or we can see what we can do about getting in to the other GI group they recommended. I asked let them know what? "I'm not sure, I guess. I know your trouble with GI. You know what? I'm going to just have Dr. Ott call you, that will be a lot easier." Dr Ott called me a short time later and said to tell GI simply this: You put us on this plan, two week food trials after four weeks of an elemental diet. We did what you wanted, and it's not working. What's next?" I hung up and promptly called and left a message on the nurse coordinator's (UGH!) voicemail. In that message I let her know that Dr. Erickson GI, had said to leave Kate, nurse, a message when we got through our foods to have Dr. E call me and then said I needed to talk to Dr. E because Kara is reacting to the first food. (pretty much clear that I didn't want the nurse, I needed the doctor...)
Dr E called as we were napping. I got up and tried to pull myself together to talk to her. Kara woke up in the middle of this conversation, having yet another nasty, full diaper. I'm trying to talk to her while changing Kara, explaining what was happening. There was nothing even sympathetic in her voice. Kara laid on the floor in front of me with her clean diaper on, fussing as we continued to talk. Dr. E said "well, then pull the corn. She's having an allergic response to it, don't feed it to her." I said "This is our FIRST food trial, corn used to be safe, everything use to be safe, we just need to figure out what is happening to my baby!" With that, Kara filled her diaper again as Dr. E said "Move on to the next food. I don't understand what the question is." I said "well, we went through a menu of four foods to try, we'd do potato next but what about what is happening now? Do I wait, do I do potato, the elemental diet again right away?" Her reply? "I think we should skip those and go to rice." GASP. RICE? REALLY? I told her absolutely not. I explained that RICE put Kara into SHOCK. She said "well what kind of rice was it? I said it was rice cereal, plain old rice cereal at five months old. She said "well, it could have been cross-contaminated with oat, or wheat and that was the problem. I would give it a try." I was livid. "Absolutely not. It doesn't matter. Rice was BAD and she had shock from oat as well." We won't be trying those for YEARS at this point. I have never, ever wanted to hang up on someone so bad in my entire life as I wanted to hang up on her at that moment. She had an attitude, and she clearly had ABSOLUTELY NO CLUE WHAT THE HELL SHE WAS TALKING ABOUT. This confirmed right there that does not know FPIES.
She kept saying "well, is there anything else?" to which I answered "Yes. You are the physician that recommended we travel to Cincinnati. We have a plan with Cincinnati to come there when Kara is reacting. They said there wasn't much sense in coming down if she's doing well on an elemental, they want to see her while she is reacting and do testing at that point." She said "That sounds like a good plan." At this point, I think I gave up all hope on this doctor, and got off the phone with her as soon as I could, making plans to call her in a few weeks after we had passed a few foods. Ha.
Dr. Ott's office called during this conversation, to which I called them right back. Dr. Ott called the other GI in the group she had recommended and was able to speak with him about Kara. He expressed interest in seeing her next week. We have gone round and round about this, not wanting to start all over but clearly we need something as our current situation is far from ideal. They will be calling hopefully right away Monday and we can head down to the cities for this appointment. I am finding it incredibly difficult to be hopeful in this, anymore. I am SO thankful that our old GI at the U of MN found Dr. Ott for us. If it weren't for her, who knows where we'd be. For Kara being a very new, and very complex patient of hers, she has worked incredibly hard for us.
The more I think of what we've gone through yesterday, the angrier I get. I hold my girl, who is hurting, and I hurt right along with her, although in a completely different way. I have my four year old begging for Mommy time because Kara is taking it all lately and my heart just hurts. I don't know what our answers are. Brian and I are trying to stay strong, stay calm, and get ourselves through this, trying to make rational decisions but at this point , who knows what is right and what is wrong? Corn was supposed to be safe. Wait, kids with FPIES are supposed to have grown out of FPIES by now, or well on their way, not reacting to everything that goes into their body!
I sure hope that something a little more positive comes out of next weeks appointments. We sure need it around here!
.
On Thursday afternoon I left a message with the nurse from Cincinnati letting her know that I was beginning to wonder if Kara was going to be reacting to corn. I heard nothing back and called right away Friday morning to let her know that yes, Kara was for sure reacting to the corn. You know, just in case they could by some chance get her in Monday morning, we would fly out Sunday. I was prepared for anything. They want to see her reacting? Now was the time! As I said in my previous post, yesterday, Friday, came and went and I heard nothing back from them. I am beyond disappointed and have given up hope in them.
I called Kara's allergy office on Thursday letting them know that I was wondering if Kara was starting to have problems with the corn, after having her first large slime diaper, going from baseline to that - no middle ground. Her allergist simply said that one episode isn't concerning to her at this point but to keep them updated and of course, to watch for blood in her stool. I called them right away Friday morning when we woke up to let them know the details of our night and how she was definitely reacting to the corn. She spoke with the doctor and her info was that she wants us to either contact GI and let them know, knowing what a pain in the butt the U of MN is, or we can see what we can do about getting in to the other GI group they recommended. I asked let them know what? "I'm not sure, I guess. I know your trouble with GI. You know what? I'm going to just have Dr. Ott call you, that will be a lot easier." Dr Ott called me a short time later and said to tell GI simply this: You put us on this plan, two week food trials after four weeks of an elemental diet. We did what you wanted, and it's not working. What's next?" I hung up and promptly called and left a message on the nurse coordinator's (UGH!) voicemail. In that message I let her know that Dr. Erickson GI, had said to leave Kate, nurse, a message when we got through our foods to have Dr. E call me and then said I needed to talk to Dr. E because Kara is reacting to the first food. (pretty much clear that I didn't want the nurse, I needed the doctor...)
Dr E called as we were napping. I got up and tried to pull myself together to talk to her. Kara woke up in the middle of this conversation, having yet another nasty, full diaper. I'm trying to talk to her while changing Kara, explaining what was happening. There was nothing even sympathetic in her voice. Kara laid on the floor in front of me with her clean diaper on, fussing as we continued to talk. Dr. E said "well, then pull the corn. She's having an allergic response to it, don't feed it to her." I said "This is our FIRST food trial, corn used to be safe, everything use to be safe, we just need to figure out what is happening to my baby!" With that, Kara filled her diaper again as Dr. E said "Move on to the next food. I don't understand what the question is." I said "well, we went through a menu of four foods to try, we'd do potato next but what about what is happening now? Do I wait, do I do potato, the elemental diet again right away?" Her reply? "I think we should skip those and go to rice." GASP. RICE? REALLY? I told her absolutely not. I explained that RICE put Kara into SHOCK. She said "well what kind of rice was it? I said it was rice cereal, plain old rice cereal at five months old. She said "well, it could have been cross-contaminated with oat, or wheat and that was the problem. I would give it a try." I was livid. "Absolutely not. It doesn't matter. Rice was BAD and she had shock from oat as well." We won't be trying those for YEARS at this point. I have never, ever wanted to hang up on someone so bad in my entire life as I wanted to hang up on her at that moment. She had an attitude, and she clearly had ABSOLUTELY NO CLUE WHAT THE HELL SHE WAS TALKING ABOUT. This confirmed right there that does not know FPIES.
She kept saying "well, is there anything else?" to which I answered "Yes. You are the physician that recommended we travel to Cincinnati. We have a plan with Cincinnati to come there when Kara is reacting. They said there wasn't much sense in coming down if she's doing well on an elemental, they want to see her while she is reacting and do testing at that point." She said "That sounds like a good plan." At this point, I think I gave up all hope on this doctor, and got off the phone with her as soon as I could, making plans to call her in a few weeks after we had passed a few foods. Ha.
Dr. Ott's office called during this conversation, to which I called them right back. Dr. Ott called the other GI in the group she had recommended and was able to speak with him about Kara. He expressed interest in seeing her next week. We have gone round and round about this, not wanting to start all over but clearly we need something as our current situation is far from ideal. They will be calling hopefully right away Monday and we can head down to the cities for this appointment. I am finding it incredibly difficult to be hopeful in this, anymore. I am SO thankful that our old GI at the U of MN found Dr. Ott for us. If it weren't for her, who knows where we'd be. For Kara being a very new, and very complex patient of hers, she has worked incredibly hard for us.
The more I think of what we've gone through yesterday, the angrier I get. I hold my girl, who is hurting, and I hurt right along with her, although in a completely different way. I have my four year old begging for Mommy time because Kara is taking it all lately and my heart just hurts. I don't know what our answers are. Brian and I are trying to stay strong, stay calm, and get ourselves through this, trying to make rational decisions but at this point , who knows what is right and what is wrong? Corn was supposed to be safe. Wait, kids with FPIES are supposed to have grown out of FPIES by now, or well on their way, not reacting to everything that goes into their body!
I sure hope that something a little more positive comes out of next weeks appointments. We sure need it around here!
.
Corn FAIL
I don't even know where to begin with this. In my update post the other day, I said we were watching Kara closely because she was beginning to have some symptoms of possibly not tolerating the corn, despite how positive we were that corn would be safe. I'm going to try not to go into too much detail about what events occurred, but this is related to FPIES, and FPIES is far from pretty, so consider yourself warned. :)
Wednesday afternoon Kara was looking pretty pale again. I was home sick, all week with bronchitis and my first thought was that she was catching what I had. Not long after, she was getting really fussy, complaining that her tummy hurt. Within minutes she had pooped, I went to change her diaper and it was (again, sorry, but here goes...) slime. While on Neocate, we had none of these. Perfectly, stinky, diapers, on the verge of being constipated from the elemental formula diet. Shit. Literally, my heart just sunk. I walked the diaper outside to show Brian - many of you understand this! :) His response was to pull the corn. Mine was this: It was ONE episode, I was SO sure that corn was going to be safe. I said I needed to see one more diaper look like this and then I'd be convinced.
We went on with our evening and Kara did ok. She was a little fussy and we ended up being up with her until 11:30. She couldn't get comfortable and had some pretty rotten smelling gas. We got her to sleep, and the night wasn't the greatest, and enough for me to decide that I needed to be home with her on Thursday.
With no other poop symptoms besides that one diaper, we pressed on. Kara had corn pasta for lunch, and snacked on kix through the day. I was continuously asking her if her tummy hurt. "Nope!" was the reply each time. I can't remember the exact details of the rest of the day...I dont' think she had more icky diapers, but things are cloudy and I know I wasn't sure what the heck was going on.
I talked things over with a few of my closest FPIES Moms - we went through ingredient labels, different theories...maybe it was the corn pasta that she can't handle. She'd had it twice but until that point it had only been Kix or Chex. The cereal is probably a lot easier to digest, maybe that would make a difference? We talked about how once we went on the Neocate only diet, her eczema symptoms didn't get any better, and in a way seemed almost worse and how we ruled that out as being food related now. This had me right back to questioning whether or not the Neocate has been causing us problems, since it does have trace amounts of corn in it. Could it be that we were building to a reaction to corn after ALL THIS TIME???
We decided no more corn pasta and at supper she insited on something to eat so we stuck with her cereal. She was all over the place - happy, sad, mad, gassy, obviously not herself. She ended up sleeping in our bed with us so we could hopefully get some sleep.
I dont' know what time we both actually woke up, but it was clear that Kara was having some pain. She was tossing turning, crying out, and was pretty much miserable. She'd have her head on my chest, my stomach, at the end of the bed, making us crazy trying to get comfortable until she finally was able to poop. Brian went to get a diaper and wipes and Kara was a mess. We got her cleaned up and she was able to rest...for a few more minutes. The next one, we rushed to her room, as Brenna was already in our bed from the chaos of the night so far. We ended up having to do a total bed change and give a 3 a.m. bath. Kara was in so much pain. This went on, we think starting around 1:45. I think we have five diapers from then until 5:30 when we finally all started to rest camped out on the living room floor. Brenna, included. NO MORE CORN.
Yesterday we had symptoms off and on all day. The total was nine blowout, diarrhea diapers in twelve hours. We pulled the corn, and are working on what our next step is going to be. The frustrations are huge...as if we didn't have enough on our plates yesterday, I spent a good part of the day on the phone with Kara's different nurses and had a few conversations with her allergy doctor, trying to figure out what the heck we are supposed to do next. That's a post all in itself. Oh, and for the record, I called Cincinnati both Thursday night and again Friday morning and never received a call back. I'm not sure what to think about that.
The good news is, we were able to keep Kara somewhat hydrated. She doesn't look well but we will be addressing that on Monday, as long as she doesn't have any symptoms of dehydration. More later - for now, it's NAPTIME! :)
Wednesday afternoon Kara was looking pretty pale again. I was home sick, all week with bronchitis and my first thought was that she was catching what I had. Not long after, she was getting really fussy, complaining that her tummy hurt. Within minutes she had pooped, I went to change her diaper and it was (again, sorry, but here goes...) slime. While on Neocate, we had none of these. Perfectly, stinky, diapers, on the verge of being constipated from the elemental formula diet. Shit. Literally, my heart just sunk. I walked the diaper outside to show Brian - many of you understand this! :) His response was to pull the corn. Mine was this: It was ONE episode, I was SO sure that corn was going to be safe. I said I needed to see one more diaper look like this and then I'd be convinced.
We went on with our evening and Kara did ok. She was a little fussy and we ended up being up with her until 11:30. She couldn't get comfortable and had some pretty rotten smelling gas. We got her to sleep, and the night wasn't the greatest, and enough for me to decide that I needed to be home with her on Thursday.
With no other poop symptoms besides that one diaper, we pressed on. Kara had corn pasta for lunch, and snacked on kix through the day. I was continuously asking her if her tummy hurt. "Nope!" was the reply each time. I can't remember the exact details of the rest of the day...I dont' think she had more icky diapers, but things are cloudy and I know I wasn't sure what the heck was going on.
I talked things over with a few of my closest FPIES Moms - we went through ingredient labels, different theories...maybe it was the corn pasta that she can't handle. She'd had it twice but until that point it had only been Kix or Chex. The cereal is probably a lot easier to digest, maybe that would make a difference? We talked about how once we went on the Neocate only diet, her eczema symptoms didn't get any better, and in a way seemed almost worse and how we ruled that out as being food related now. This had me right back to questioning whether or not the Neocate has been causing us problems, since it does have trace amounts of corn in it. Could it be that we were building to a reaction to corn after ALL THIS TIME???
We decided no more corn pasta and at supper she insited on something to eat so we stuck with her cereal. She was all over the place - happy, sad, mad, gassy, obviously not herself. She ended up sleeping in our bed with us so we could hopefully get some sleep.
I dont' know what time we both actually woke up, but it was clear that Kara was having some pain. She was tossing turning, crying out, and was pretty much miserable. She'd have her head on my chest, my stomach, at the end of the bed, making us crazy trying to get comfortable until she finally was able to poop. Brian went to get a diaper and wipes and Kara was a mess. We got her cleaned up and she was able to rest...for a few more minutes. The next one, we rushed to her room, as Brenna was already in our bed from the chaos of the night so far. We ended up having to do a total bed change and give a 3 a.m. bath. Kara was in so much pain. This went on, we think starting around 1:45. I think we have five diapers from then until 5:30 when we finally all started to rest camped out on the living room floor. Brenna, included. NO MORE CORN.
Yesterday we had symptoms off and on all day. The total was nine blowout, diarrhea diapers in twelve hours. We pulled the corn, and are working on what our next step is going to be. The frustrations are huge...as if we didn't have enough on our plates yesterday, I spent a good part of the day on the phone with Kara's different nurses and had a few conversations with her allergy doctor, trying to figure out what the heck we are supposed to do next. That's a post all in itself. Oh, and for the record, I called Cincinnati both Thursday night and again Friday morning and never received a call back. I'm not sure what to think about that.
The good news is, we were able to keep Kara somewhat hydrated. She doesn't look well but we will be addressing that on Monday, as long as she doesn't have any symptoms of dehydration. More later - for now, it's NAPTIME! :)
Playing in the Corn
Last weekend we enjoyed a family day by going to a local corn maze, pumpkin patch and little petting zoo. The girls had a blast and we had fun some scaring them in the corn maze - just enough to get some good laughs out of them!
At the end, we let them play in the large "corn box" that they had set up full of, well, corn! Kara loves the sandbox so of course she was in heaven here. We kept talk talking about how appropriate it was, since corn was her first food trial! Little did we know the events that were going to follow in the next few days...
Of course, I forgot to bring my camera so we didn't get any pics except the ones I have on my phone, but I have to share this picture of my happy, finally food eating girl, playing in the corn...
At the end, we let them play in the large "corn box" that they had set up full of, well, corn! Kara loves the sandbox so of course she was in heaven here. We kept talk talking about how appropriate it was, since corn was her first food trial! Little did we know the events that were going to follow in the next few days...
Of course, I forgot to bring my camera so we didn't get any pics except the ones I have on my phone, but I have to share this picture of my happy, finally food eating girl, playing in the corn...
Wednesday, October 19, 2011
A Late Update
I totally thought I'd updated since last weeks allergy appointment, but apparently not! Once again, we had a long day at allergy but this doctor is so thorough, it's amazing! We walked out of there an hour and a half after her appointment time, with the majority of this time spent with the Allergist!
The doctor was impressed with the way Kara's skin looked and we decided she could go off the Prednisone. We discussed having some on hand in case of an extreme breakout again, we could get it started right away. She wants us to get down to using her Protopic daily and get away from the steroid creams that we've been needing. This skin stuff makes me crazy but at least her feet have been able to heal up! We were told to expect a flare as the Prednisone wears off and now, a week later, we have our flare. Poor girl! :(
Kara's interest in her nebulizer is great, when she's coughing, and lasts for about two minutes before she is done. With the time of year, we are going to more than likely need her to be on a steriod neb daily for control as well as her albuterol as needed. We were given a chamber for an inhaler, connected to a cute little ducky mask that Kara simply has to take five breaths with it up against her face, to use on a daily basis. Pretty neat! This will surely help with her having no interest in the nebulizer for the amount of time needed. It's been pretty nice because she knows that the nebs help her so when she starts coughing, often times she'll ask for one!
We went to this appointment to discuss whether or not we could begin our first food trial. It was decided that we would be ok to start with corn for the full 14 days of a trial before moving on. We talked about how we were 99% sure that corn would be perfectly safe, as she's tolerated it fine in the past, from what we remember. Our second food trial is up in the air between potato, banana or even apple.
We discussed our plan with Cincinnati, the opposite plan with the U, and my extreme (EXTREME) frustrations with how opposite they are and how I just don't feel like the U understands what they are working with. Our wonderful allergist understands exactly how we are feeling, as she's had to communicate with the U for me before because of me not getting through to them. She brought up the dreaded conversation of possibly having Kara see a GI doctor through Children's instead of the U, one who works a lot with food allergies, to which Brian and I both cringed. We have WAAYYYYYY too many options of GI doctors but NOTHING, NOTHING is promising. (Other than to fly out to Cinci, in hopes they can help and then hope to heck that Kara's GI doctor here will follow what they want us to do for her!!!) We left, I think, not even addressing this yet. We are hoping that our first few food trials go well and the GI story can stay on the back burner for a little while. :)
At the end of the appointment, we were given the OK to start corn. Kara and I had gone shopping the night before and bought some KIX for our first trial. I had some in my purse ready to start! We were walking out and I handed her the baggie. We got in the elevator and the excitement in her eyes was unforgettable. She was SO happy! I teared up as she ate them, never thinking it would be as exciting as it was.
We are now on day six of the corn trial. We have some symptoms going on that we are a little unsure of, but nothing enough to pull the food yet. We are just going to be paying very close attention to every little symptom in the next few days.
The doctor was impressed with the way Kara's skin looked and we decided she could go off the Prednisone. We discussed having some on hand in case of an extreme breakout again, we could get it started right away. She wants us to get down to using her Protopic daily and get away from the steroid creams that we've been needing. This skin stuff makes me crazy but at least her feet have been able to heal up! We were told to expect a flare as the Prednisone wears off and now, a week later, we have our flare. Poor girl! :(
Kara's interest in her nebulizer is great, when she's coughing, and lasts for about two minutes before she is done. With the time of year, we are going to more than likely need her to be on a steriod neb daily for control as well as her albuterol as needed. We were given a chamber for an inhaler, connected to a cute little ducky mask that Kara simply has to take five breaths with it up against her face, to use on a daily basis. Pretty neat! This will surely help with her having no interest in the nebulizer for the amount of time needed. It's been pretty nice because she knows that the nebs help her so when she starts coughing, often times she'll ask for one!
We went to this appointment to discuss whether or not we could begin our first food trial. It was decided that we would be ok to start with corn for the full 14 days of a trial before moving on. We talked about how we were 99% sure that corn would be perfectly safe, as she's tolerated it fine in the past, from what we remember. Our second food trial is up in the air between potato, banana or even apple.
We discussed our plan with Cincinnati, the opposite plan with the U, and my extreme (EXTREME) frustrations with how opposite they are and how I just don't feel like the U understands what they are working with. Our wonderful allergist understands exactly how we are feeling, as she's had to communicate with the U for me before because of me not getting through to them. She brought up the dreaded conversation of possibly having Kara see a GI doctor through Children's instead of the U, one who works a lot with food allergies, to which Brian and I both cringed. We have WAAYYYYYY too many options of GI doctors but NOTHING, NOTHING is promising. (Other than to fly out to Cinci, in hopes they can help and then hope to heck that Kara's GI doctor here will follow what they want us to do for her!!!) We left, I think, not even addressing this yet. We are hoping that our first few food trials go well and the GI story can stay on the back burner for a little while. :)
At the end of the appointment, we were given the OK to start corn. Kara and I had gone shopping the night before and bought some KIX for our first trial. I had some in my purse ready to start! We were walking out and I handed her the baggie. We got in the elevator and the excitement in her eyes was unforgettable. She was SO happy! I teared up as she ate them, never thinking it would be as exciting as it was.
We are now on day six of the corn trial. We have some symptoms going on that we are a little unsure of, but nothing enough to pull the food yet. We are just going to be paying very close attention to every little symptom in the next few days.
Tuesday, October 11, 2011
Getting Closer
Last Friday, I spent a good amount of time on the phone with the nurse from Cincinnati Children's Hospital. We were basically able to do sort of a "phone consult" to update on where Kara is at now, since they had already reviewed her records. She was already aware that Kara was on a Neocate only diet for a few weeks and had made the doctor aware of this as well.
Through our conversation, we developed a plan that has given me a huge sigh of relief. Basically, since Kara has been on what's called an elemental diet for over four weeks now, scoping her is not going to be of any benefit to them to diagnose or rule out additional disorders. We are in the perfect place, being on this elemental diet because this has taught us a number of things, despite how difficult its been. We have learned that Kara's GI trouble is, in fact, caused by an allergy to foods and not due to something else. We have also, very importantly, learned that Kara's eczema and asthma is NOT food driven since she's had such bad breakouts even though she's been on the elemental diet. This is huge, as I have always associated these eczema flares as being from an offending food.
They (Cinci) tweaked our plan that we had with the U just a little bit after reviewing the records. We decided on the full two week trials, beginning with corn, and then either banana or potato for another two weeks. The first four foods we will do will be those three and then apples. I confidently told the nurse that the first three foods SHOULD be just fine, Kara should have no issues with them but after that, we are back to everything being a shot in the dark. Doing the 14 day trials, beginning with a tablespoon a day and working our way up will give us the full, big picture on how she can tolerate each one.
Because of where Kara is at right now on Neocate, we discussed whether or not we need to come right now and it was decided not to, since we have been able to do so much over the phone. We were told we could come for the consult now but we'd just have to come back again when we ran into food trouble, so as long as it isn't necessary on there end at the moment, we opted out. Once Kara starts having GI trouble again from food, which she will as we trial (unfortunately, the game is trial and error. The only way to know if she's going to react is to try...), we will let the nurse coordinator know and she will get us set up, hopefully right away, to get out there for her appointments.
It was explained that the week we go, Monday would be the GI consult date, Tuesday would be the scope, Wednesday is the appointments with the other specialists, Thursday is back with GI and the team to discuss biopsy findings and Friday is left open for anything left. I asked about the other specialists on the team. Their Allergists are Immunologists as well (the same as Kara's new GI) and other specialists are available as the team sees needed.
This plan has left me feeling very hopeful and we have a lot of very busy weeks to come with the beginning of food trials. It's been almost five weeks since Kara has had a bite of real food and about seven weeks since she's been on her old diet. We've come a long way but yet this is only the beginning.
Through our conversation, we developed a plan that has given me a huge sigh of relief. Basically, since Kara has been on what's called an elemental diet for over four weeks now, scoping her is not going to be of any benefit to them to diagnose or rule out additional disorders. We are in the perfect place, being on this elemental diet because this has taught us a number of things, despite how difficult its been. We have learned that Kara's GI trouble is, in fact, caused by an allergy to foods and not due to something else. We have also, very importantly, learned that Kara's eczema and asthma is NOT food driven since she's had such bad breakouts even though she's been on the elemental diet. This is huge, as I have always associated these eczema flares as being from an offending food.
They (Cinci) tweaked our plan that we had with the U just a little bit after reviewing the records. We decided on the full two week trials, beginning with corn, and then either banana or potato for another two weeks. The first four foods we will do will be those three and then apples. I confidently told the nurse that the first three foods SHOULD be just fine, Kara should have no issues with them but after that, we are back to everything being a shot in the dark. Doing the 14 day trials, beginning with a tablespoon a day and working our way up will give us the full, big picture on how she can tolerate each one.
Because of where Kara is at right now on Neocate, we discussed whether or not we need to come right now and it was decided not to, since we have been able to do so much over the phone. We were told we could come for the consult now but we'd just have to come back again when we ran into food trouble, so as long as it isn't necessary on there end at the moment, we opted out. Once Kara starts having GI trouble again from food, which she will as we trial (unfortunately, the game is trial and error. The only way to know if she's going to react is to try...), we will let the nurse coordinator know and she will get us set up, hopefully right away, to get out there for her appointments.
It was explained that the week we go, Monday would be the GI consult date, Tuesday would be the scope, Wednesday is the appointments with the other specialists, Thursday is back with GI and the team to discuss biopsy findings and Friday is left open for anything left. I asked about the other specialists on the team. Their Allergists are Immunologists as well (the same as Kara's new GI) and other specialists are available as the team sees needed.
This plan has left me feeling very hopeful and we have a lot of very busy weeks to come with the beginning of food trials. It's been almost five weeks since Kara has had a bite of real food and about seven weeks since she's been on her old diet. We've come a long way but yet this is only the beginning.
Update
We have had one moody little girl on our hands for the last week and I am blaming the medication! The good news? She looks GREAT! No more face puffiness, swelling, icky eczema, barking cough - it's a miracle drug, despite how bad it is on a persons body... The moodiness is something else though. She just doesn't feel very good, is what I gather. Many times all she wants to do is "a-a-bye with a ba-ba and watch shortcake" meaning rock, drink a bottle and watch strawberry shortcake. I can't even count how many hours we've sat in the rocker doing this in the last few weeks. I do love the snuggles, however, so I'll take it. A lot of the time, I think she is also just plain, old HUNGRY. She's been drinking a bottle about every hour lately so it's been busy! At night she usually goes from about 10:00 to 3:00 or so and then wakes again at 6:00. She is starved! We've also had quite a few 3:00 clothing and bed changes due to this enormous fluid intake!!!
Kara goes back to the doctor on Thursday. We are really hoping that we can start our first food trial on Friday so we can have three whole days home with her to watch symptoms, and that she doesn't make us wait until the Prednisone is completely gone. We are starting with corn, for two weeks, and are very sure that it will be a "safe" food, as it was in the past, so maybe she'll let us!
I'll update as soon as I get a chance after the appointment.
Kara goes back to the doctor on Thursday. We are really hoping that we can start our first food trial on Friday so we can have three whole days home with her to watch symptoms, and that she doesn't make us wait until the Prednisone is completely gone. We are starting with corn, for two weeks, and are very sure that it will be a "safe" food, as it was in the past, so maybe she'll let us!
I'll update as soon as I get a chance after the appointment.
Tuesday, October 4, 2011
A Setback
Kara had a really cranky, irritable night last night. I'm not sure anyone got much sleep in our house. She woke up this morning and seemed ok, so we got ready to go to work and daycare. I was tired, but hoping for the best!
I had a message this morning from Kara's allergy nurse. I swear, they somehow seem to know when we are having problems and call to check on things! Have I mentioned how amazing they are?! I told the nurse about how Kara isn't looking much better and how things went for us the night before. She said she would talk with the doctor and call me back shortly.
Around noon, our daycare gal called to let me know that Kara's cough was pretty barky sounding. I sort of panicked, as I tend to do, but was told that I didn't have to come get her, she just wanted to let me know. She said it was almost nap time so she could just put her down for a nap...No, I said, laying her down is only going to make things worse for her. I let her know I was waiting on some phone calls from her doctor, anyway, so I'd come get her so we could get a neb in her right away. I left work and went to pick Kara up. She wasn't terrible but certainly didn't look good! On the way home, I left a message for the allergy nurse to call me so I could let her know about the latest.
We got home, took a neb, had a bottle and snuggled in the recliner. Kara doesn't go too far from my side when we are together! I didn't have the heart to put her in the crib and had too much to do to snuggle her in my bed, which is our new favorite! The nurse called back shortly after. We talked about things, she told me the doctors suggestions and then ended up putting the doctor on the phone with me. We are two and a half hours away and this office respects that and doesn't want us to drive down if it's something we can take of over the phone!
Dr. Ott, Kara's allergist, explained how we cannot start food trials on Friday with how Kara has been. My heart sunk, I started shaking and wanted to cry. Forget about the anxiety with starting foods- now we are getting pushed back again! With how much inflammation Kara has going on with her airway and skin, it will be way too complicated to add anything new to her system at this time. She said to hold off at least another week. We talked about everything I've been doing with her skin, Kara's history last winter (constant nebs - pulmicort and albuterol) and the winter before (hospitalization from respiratory complications). She prescribed Kara a two week dose of Prednisone to help get this inflammation under control. We will do the slow taper off, as you do with Prednisone, and then start the Pumicort nebs right away. We discussed a small dose antibiotic to get us through the winter but I brought up my concern of her intolerance to antibiotics. She said she wants to see Kara soon, within the next two weeks so we made an appointment for the end of next week. I'm hoping we can get the food trials started after that appointment but am ready for anything at this point.
I had a message this morning from Kara's allergy nurse. I swear, they somehow seem to know when we are having problems and call to check on things! Have I mentioned how amazing they are?! I told the nurse about how Kara isn't looking much better and how things went for us the night before. She said she would talk with the doctor and call me back shortly.
Around noon, our daycare gal called to let me know that Kara's cough was pretty barky sounding. I sort of panicked, as I tend to do, but was told that I didn't have to come get her, she just wanted to let me know. She said it was almost nap time so she could just put her down for a nap...No, I said, laying her down is only going to make things worse for her. I let her know I was waiting on some phone calls from her doctor, anyway, so I'd come get her so we could get a neb in her right away. I left work and went to pick Kara up. She wasn't terrible but certainly didn't look good! On the way home, I left a message for the allergy nurse to call me so I could let her know about the latest.
We got home, took a neb, had a bottle and snuggled in the recliner. Kara doesn't go too far from my side when we are together! I didn't have the heart to put her in the crib and had too much to do to snuggle her in my bed, which is our new favorite! The nurse called back shortly after. We talked about things, she told me the doctors suggestions and then ended up putting the doctor on the phone with me. We are two and a half hours away and this office respects that and doesn't want us to drive down if it's something we can take of over the phone!
Dr. Ott, Kara's allergist, explained how we cannot start food trials on Friday with how Kara has been. My heart sunk, I started shaking and wanted to cry. Forget about the anxiety with starting foods- now we are getting pushed back again! With how much inflammation Kara has going on with her airway and skin, it will be way too complicated to add anything new to her system at this time. She said to hold off at least another week. We talked about everything I've been doing with her skin, Kara's history last winter (constant nebs - pulmicort and albuterol) and the winter before (hospitalization from respiratory complications). She prescribed Kara a two week dose of Prednisone to help get this inflammation under control. We will do the slow taper off, as you do with Prednisone, and then start the Pumicort nebs right away. We discussed a small dose antibiotic to get us through the winter but I brought up my concern of her intolerance to antibiotics. She said she wants to see Kara soon, within the next two weeks so we made an appointment for the end of next week. I'm hoping we can get the food trials started after that appointment but am ready for anything at this point.
Allergies and Asthma
Kara's eczema has been completely out of control. Despite the measures we've taken since our last allergy appointment in mid-September it hasn't gotten much better. With this we've seen even more of an increase in the sneezing, stuffy nose, and icky, croupy cough.
It was a beautiful fall day yesterday and we spent the late afternoon and evening outside. Brenna just learned how to ride her bike without training wheels and Kara has mastered pedaling on her trike. The girls rode in circles around the driveway. I noticed Kara getting puffier and puffier. We came in for baths and the eczema around her eyes was bright pink again. Her wrists looked like they had welts on them. I put her in the bath quick and did her full skin regime afterwards. I wanted to cry looking at the random patches all over her legs and arms. Kara did a good job covering her entire face in vaseline (!) helping Mamma while I applied her meds everywhere else. We wrapped her ankles, put jammies on and her itchy was making her crazy. Another dose of Benedryl was given - we should really buy stock in this stuff! Not too long after this, the wheezing started. She was scaring me! I'm so tired of having night after night wondering if we are going to end up in the ER! I swear it's every other day lately! We started up the nebulizer and Kara took that and fell asleep in my lap.
It's been one thing after another. These symptoms clear a lot of things up for us as far as what all was food related. Since she has always had these symptoms, we didn't know if it was food driven or not. Given the fact that she is on no food right now and hasn't been for almost four weeks now, it's clear that this is all related to something else - something in the environment that we haven't been able to figure out yet, despite the skin prick testing. Who knows if we'll ever figure it out. For now, Benedryl and Zyrtec are our friends. :)
It was a beautiful fall day yesterday and we spent the late afternoon and evening outside. Brenna just learned how to ride her bike without training wheels and Kara has mastered pedaling on her trike. The girls rode in circles around the driveway. I noticed Kara getting puffier and puffier. We came in for baths and the eczema around her eyes was bright pink again. Her wrists looked like they had welts on them. I put her in the bath quick and did her full skin regime afterwards. I wanted to cry looking at the random patches all over her legs and arms. Kara did a good job covering her entire face in vaseline (!) helping Mamma while I applied her meds everywhere else. We wrapped her ankles, put jammies on and her itchy was making her crazy. Another dose of Benedryl was given - we should really buy stock in this stuff! Not too long after this, the wheezing started. She was scaring me! I'm so tired of having night after night wondering if we are going to end up in the ER! I swear it's every other day lately! We started up the nebulizer and Kara took that and fell asleep in my lap.
It's been one thing after another. These symptoms clear a lot of things up for us as far as what all was food related. Since she has always had these symptoms, we didn't know if it was food driven or not. Given the fact that she is on no food right now and hasn't been for almost four weeks now, it's clear that this is all related to something else - something in the environment that we haven't been able to figure out yet, despite the skin prick testing. Who knows if we'll ever figure it out. For now, Benedryl and Zyrtec are our friends. :)
Food Trial: Corn
Yesterday I realized that after almost four long weeks we were almost to the big day of starting our first food trial again. I was brainstorming how we would do it, what we would do and had pretty much decided that Friday and through the weekend we would be giving her the little snack bowls of kix here and there, when she asked and gradually moving on to corn pasta polenta, grits, corn chex, and the other corn products we used to use. Ten to fourteen days of corn to call it a trial. I was excited and nervous. Neocate has been so safe. We have had some minor tummy problems that are usually associated with a Neocate only diet and the thought of entering the great unknown of food trials again scared me, but yet we need to get Kara back on food, after all, there aren't too many 2 1/2 year olds that are on a liquid diet!
Ready or not, here we come...or so I thought...
(to be continued...)
Ready or not, here we come...or so I thought...
(to be continued...)
Monday, September 26, 2011
Neocate: Two More Weeks
Kara has been on her Neocate Jr only diet for two weeks. Last Thursday was the end of the two week trial and we were to update GI at that time.
I called and ran into my usual problems with the nurse coordinator. She, at some point in the conversation, made the mention that some children have to be on Neocate for sometimes six months before they are ready for food. NO NO NO. Kara is better, her tummy is much better, she's at baseline as far as her tummy goes, and our allergist said she should be scoped before we begin food trials. I got extremely frustrated with her again (this is an every.single.conversation.occurrence with her) and finally asked to have the doctor call me so I could talk to her. The next morning I called Kara's allergy office. The staff at her new allergist's office is amazing. I explained my conversation with the nurse at GI and how frustrating it is for us and she said they would get working on contacting the U right away.
That day, after work, Kara's GI called me. We discussed the plan, and she explained that it was discussed with Allergy and that Kara is to do two more weeks of Neocate. Her gut is well on it's way to being healed but we want to keep going with this before jumping right in on foods again. We ended up going through this big long plan - we are doing a total of four weeks of formula only and then starting a trial of corn, where Kara will have corn pasta, kix, corn chex, polenta, grits and a few other corn-only foods. She will do this for 10-14 days (assuming she can tolerate it for this long) and then we will call and update GI, at the same time, scheduling a scope. After the corn trial we will do the same with a potato trial for 10-14 days and the scope will be right after that, so roughly six weeks away. We will work together on developing our food trial plan. For now we have a list that we will strictly avoid due to her dairy and peanut allergy and her FPIES reactions to soy, dairy, rice, oat, pear and green bean.
This is our plan. There are a few other things going on - we still have those Mayo appointments scheduled (which I'm holding onto for now simply because of the communication problems we seem to have with the U and needing a MN GI available despite what happens with Cinci), we have the Cinci stuff in the works, and I'll keep in close touch with Kara's Allergist to help me through all of this. I think I'm going to be leaning on her office for a lot more support in the next few weeks - they are wonderful and have really helped us in the last few weeks!
So - here we are. Here's our plan and I'm ok with it. Neocate only is tough but honestly, it's a lot easier than I thought it would be. Kara has been great with it - she seems to understand and be ok that the doctor said bottles only but when she has her meltdowns, they are pretty heartbreaking. We can do this - it's helping our girl!
I called and ran into my usual problems with the nurse coordinator. She, at some point in the conversation, made the mention that some children have to be on Neocate for sometimes six months before they are ready for food. NO NO NO. Kara is better, her tummy is much better, she's at baseline as far as her tummy goes, and our allergist said she should be scoped before we begin food trials. I got extremely frustrated with her again (this is an every.single.conversation.occurrence with her) and finally asked to have the doctor call me so I could talk to her. The next morning I called Kara's allergy office. The staff at her new allergist's office is amazing. I explained my conversation with the nurse at GI and how frustrating it is for us and she said they would get working on contacting the U right away.
That day, after work, Kara's GI called me. We discussed the plan, and she explained that it was discussed with Allergy and that Kara is to do two more weeks of Neocate. Her gut is well on it's way to being healed but we want to keep going with this before jumping right in on foods again. We ended up going through this big long plan - we are doing a total of four weeks of formula only and then starting a trial of corn, where Kara will have corn pasta, kix, corn chex, polenta, grits and a few other corn-only foods. She will do this for 10-14 days (assuming she can tolerate it for this long) and then we will call and update GI, at the same time, scheduling a scope. After the corn trial we will do the same with a potato trial for 10-14 days and the scope will be right after that, so roughly six weeks away. We will work together on developing our food trial plan. For now we have a list that we will strictly avoid due to her dairy and peanut allergy and her FPIES reactions to soy, dairy, rice, oat, pear and green bean.
This is our plan. There are a few other things going on - we still have those Mayo appointments scheduled (which I'm holding onto for now simply because of the communication problems we seem to have with the U and needing a MN GI available despite what happens with Cinci), we have the Cinci stuff in the works, and I'll keep in close touch with Kara's Allergist to help me through all of this. I think I'm going to be leaning on her office for a lot more support in the next few weeks - they are wonderful and have really helped us in the last few weeks!
So - here we are. Here's our plan and I'm ok with it. Neocate only is tough but honestly, it's a lot easier than I thought it would be. Kara has been great with it - she seems to understand and be ok that the doctor said bottles only but when she has her meltdowns, they are pretty heartbreaking. We can do this - it's helping our girl!
Baby Steps
This whole process of getting Kara in at Cincinnati Children's Hospital is moving in the tiniest little steps I've ever witnessed. We started this process well over a month ago and to date, we still don't have an appointment set.
Early last week I was informed that they finally connected with the U to get Kara's biopsy slides sent. I was notified that they were going to be Fed-Ex'd and then the next afternoon, notified again that they had been received. I had crossed my fingers and toes that they would be in the system in time for her case to be reviewed on Thursday, the reviewal day and on Thursday afternoon wrote an email asking if her case was on for that day, and if we could please have appointments set up by the end of the week so we didn't have to wait an extra week. I never received a reply.
This morning, I received an email from the pathology department letting me know they need insurance info and patient demographics before they can review the slides. Shaking my head, I emailed this info back and asked if the slides will be reviewed this week. The reply was yes, and it will take 2-3 days for this.
I am not a very patient person, I will be the first to admit this. When I want something done, I want it done now (!) and if it can't be done now, I want to know what I can do to help speed up the process. In this case, there is nothing I can do. I sent everything that I could to Cincinnati the first day that I made the initial phone call. I guess the good thing is that we have Kara's symptoms under control right now, even if she is on a Neocate-only diet. If she were crying in severe tummy pain like she was 3 weeks ago, it would be much more difficult to be patient and I would have given up on them by now, in search of another national hospital that could help. (that thought isn't entirely out of my head, either, at the snail pace we seem to be moving...)
So, we sit and wait. Another week goes by, hopefully by this Friday we'll know the date that we'll be travelling.
Early last week I was informed that they finally connected with the U to get Kara's biopsy slides sent. I was notified that they were going to be Fed-Ex'd and then the next afternoon, notified again that they had been received. I had crossed my fingers and toes that they would be in the system in time for her case to be reviewed on Thursday, the reviewal day and on Thursday afternoon wrote an email asking if her case was on for that day, and if we could please have appointments set up by the end of the week so we didn't have to wait an extra week. I never received a reply.
This morning, I received an email from the pathology department letting me know they need insurance info and patient demographics before they can review the slides. Shaking my head, I emailed this info back and asked if the slides will be reviewed this week. The reply was yes, and it will take 2-3 days for this.
I am not a very patient person, I will be the first to admit this. When I want something done, I want it done now (!) and if it can't be done now, I want to know what I can do to help speed up the process. In this case, there is nothing I can do. I sent everything that I could to Cincinnati the first day that I made the initial phone call. I guess the good thing is that we have Kara's symptoms under control right now, even if she is on a Neocate-only diet. If she were crying in severe tummy pain like she was 3 weeks ago, it would be much more difficult to be patient and I would have given up on them by now, in search of another national hospital that could help. (that thought isn't entirely out of my head, either, at the snail pace we seem to be moving...)
So, we sit and wait. Another week goes by, hopefully by this Friday we'll know the date that we'll be travelling.
Monday, September 19, 2011
Cinci Update
The details for our trip to Cincinnati have been sllloooowwwlllly coming together. I've been in contact with one of the coordinators 2-3 times a week and the nurse probably once a week. For as on-the-ball as things were that first day of me getting things set up there for Kara (AUGUST 18th!) the process has been ridiculously slow. The latest hang up has been getting the biopsy slides from the U of MN.
The coordinator has requested them two times with no luck. With a phone call, it was found that I need to sign a form to have them released. Email, print; sign, scan; email again. At least this could be taken care of electronically! Last Friday, the update I received via email was that she had still heard nothing. Today I received another email that they finally got it and are fed ex-ing the slides so hopefully they are there tomorrow, or at the latest, Wednesday. I'm sure it's going to be another week before we even know WHEN the heck we'll be heading out there. Pathology has to review the slides and then the nurse presents on Thursdays, from what I understand. Fingers crossed this will be ready by Thursday but I wouldn't be surprised it it was yet another week. In the meantime, we'll just keep hanging in there, doing what we do best!
The coordinator has requested them two times with no luck. With a phone call, it was found that I need to sign a form to have them released. Email, print; sign, scan; email again. At least this could be taken care of electronically! Last Friday, the update I received via email was that she had still heard nothing. Today I received another email that they finally got it and are fed ex-ing the slides so hopefully they are there tomorrow, or at the latest, Wednesday. I'm sure it's going to be another week before we even know WHEN the heck we'll be heading out there. Pathology has to review the slides and then the nurse presents on Thursdays, from what I understand. Fingers crossed this will be ready by Thursday but I wouldn't be surprised it it was yet another week. In the meantime, we'll just keep hanging in there, doing what we do best!
Thursday, September 15, 2011
Eczema
We have struggled with Kara's eczema pretty much since birth. We get it under control, and have a flare again. We've used so many different creams, lotions, ointments, and haven't found our magic treatment yet. In the past few weeks we've noticed a definite increase in symptoms, despite the limited diet, and most recently, the liquid diet.
Yesterday we noticed a pretty major increase in her eczema, to the point where she pretty much looks terrible. I left a message with her allergy nurse at the end of the day, anticipating an a callback from the doctor sometime today.
We had a terrible night last night. I dont' think that neither Brian nor I slept for more than one consecutive hour last night. Kara tossed and turned, was so uncomfortable from her skin. My alarm went off this morning and I let work know that I wouldn't be in, and with that re-set the alarm for when the appointment line at our local clinic opened. No need - Kara was up, and with Kara up, Brenna was too. I was waiting for a call back to see if Kara could get in to see her doctor and decided maybe I should just call to Kara's allergy office to see if by chance she could be seen today. I called down there, spoke with the nurse and she fully agreed that Kara needed to be seen and they were able to get us in at 1:00 today. We had about an hour and a half to make plans and get on the road!
I was worried about this trip - Brian was unable to leave work and with me being up most of the night I was a little nervous about driving this trip on my own with Kara. It's a good 2 1/2 hour drive. Luckily my mom was able to make the trip with us, which was great because it ended up being a very long day!
We got to the clinic a little early and the doctor took us back early. We went through how Kara has been since she last was seen, explaining that even that week that we had seen her last, Kara had ended up in the hospital. I hadn't updated her on our latest food issues, the elimination diet and down to Neocate again so we went through the timeline for all of that.
Kara had a lot of poking and prodding at again today. She was out of sorts and looked awful so it was a long day. She had some labs done for cultures, an immunization because one of her immunization titers didn't come back the way they should due to her IgA deficiency and in the end, was skin pricked for bunches of things again.The final report was that the doctor firmly believes that the eczema is environmental, meaning that something in the air is setting her off so much and it's clearly not something that she is eating this time. She thought for sure that Kara's ragweed test and even possibly the trees and grasses would come back high but in fact showed nothing. Neither did any of the animals! She said that she's sure this is only the beginning and we'll see a positive as time goes on. Kara's milk and peanut reactions were very discouraging. She had a high reaction to peanut, much worse than the last one she had, and the dairy result was definitely positive as well. Obviously, she hasn't had any peanuts ever, and no dairy in abotu a year and a half so we can't blame those on the skin!
We aren't going to be doing anything too different as far as the skin care and medications go. Her face, we are going to start using vaseline on. My girl is a greasy, shiny mess! We are going to start trying moisture wrapping and giving her a daily dose of zyrtec as well as benedryl as needed. We'll get to the bottom of this one way or another!
We are to finish out the two weeks of Neocate only. At the end of that she wants her scoped right away and then for us to get back on the road of food trials. We mapped out a little plan of doing five day trials, pending scope results, of course. She is going to be talking with GI about this plan and hopefully we can get this show on the road. She would like to see Kara eating again as soon as possible.
Even though these last few weeks have been tough, it's amazing how one challenging, but educational day can turn our outlook around again. My mind is spinning with all of the info from this appointment and I'm sure I'm missing some pieces to our day but I feel like we have a good plan in place for right now.
Yesterday we noticed a pretty major increase in her eczema, to the point where she pretty much looks terrible. I left a message with her allergy nurse at the end of the day, anticipating an a callback from the doctor sometime today.
We had a terrible night last night. I dont' think that neither Brian nor I slept for more than one consecutive hour last night. Kara tossed and turned, was so uncomfortable from her skin. My alarm went off this morning and I let work know that I wouldn't be in, and with that re-set the alarm for when the appointment line at our local clinic opened. No need - Kara was up, and with Kara up, Brenna was too. I was waiting for a call back to see if Kara could get in to see her doctor and decided maybe I should just call to Kara's allergy office to see if by chance she could be seen today. I called down there, spoke with the nurse and she fully agreed that Kara needed to be seen and they were able to get us in at 1:00 today. We had about an hour and a half to make plans and get on the road!
I was worried about this trip - Brian was unable to leave work and with me being up most of the night I was a little nervous about driving this trip on my own with Kara. It's a good 2 1/2 hour drive. Luckily my mom was able to make the trip with us, which was great because it ended up being a very long day!
We got to the clinic a little early and the doctor took us back early. We went through how Kara has been since she last was seen, explaining that even that week that we had seen her last, Kara had ended up in the hospital. I hadn't updated her on our latest food issues, the elimination diet and down to Neocate again so we went through the timeline for all of that.
Kara had a lot of poking and prodding at again today. She was out of sorts and looked awful so it was a long day. She had some labs done for cultures, an immunization because one of her immunization titers didn't come back the way they should due to her IgA deficiency and in the end, was skin pricked for bunches of things again.The final report was that the doctor firmly believes that the eczema is environmental, meaning that something in the air is setting her off so much and it's clearly not something that she is eating this time. She thought for sure that Kara's ragweed test and even possibly the trees and grasses would come back high but in fact showed nothing. Neither did any of the animals! She said that she's sure this is only the beginning and we'll see a positive as time goes on. Kara's milk and peanut reactions were very discouraging. She had a high reaction to peanut, much worse than the last one she had, and the dairy result was definitely positive as well. Obviously, she hasn't had any peanuts ever, and no dairy in abotu a year and a half so we can't blame those on the skin!
We aren't going to be doing anything too different as far as the skin care and medications go. Her face, we are going to start using vaseline on. My girl is a greasy, shiny mess! We are going to start trying moisture wrapping and giving her a daily dose of zyrtec as well as benedryl as needed. We'll get to the bottom of this one way or another!
We are to finish out the two weeks of Neocate only. At the end of that she wants her scoped right away and then for us to get back on the road of food trials. We mapped out a little plan of doing five day trials, pending scope results, of course. She is going to be talking with GI about this plan and hopefully we can get this show on the road. She would like to see Kara eating again as soon as possible.
Even though these last few weeks have been tough, it's amazing how one challenging, but educational day can turn our outlook around again. My mind is spinning with all of the info from this appointment and I'm sure I'm missing some pieces to our day but I feel like we have a good plan in place for right now.
Liquid Diet
Well, we made the decision to start the Neocate only diet a week ago, last Friday morning. The week has gone just as smooth as it's gone terrible, if that makes any sense. She has done exceptionally well with it, but her meltdowns have been terrible.
We've done pretty well with distraction and I was quick to catch on when she was getting hungry. At the first sign of crankiness, offer a bottle. We've done a lot of snuggling and rocking in the chair. She's been taking enough in and I've been weighing her daily, every morning, to make sure she's maintaining her weight.
One evening this week, I was away. I received a text from Brian letting me know that I needed to come home, that Kara was really upset and consolable because she wanted to eat. Her words were "no more owie tummy, my owie tummy all betta!" Talk about heartbreaking. I couldn't get home quick enough to hold my girl. Last night we had another one of these instances where she was crying inconsolable about food. I understood at that point what Brian was going through that night. She just sobbed and sobbed on my shoulder. I just have to remind myself that we have one week down and one week to go and this is to help her get better.
I have had to be reminded a few times that despite Kara not being able to eat, we still need to eat as well as feed our four year old. I wish it was as simple as to be able to say that no one is allowed to eat or even talk about food in front of Kara but we still need to eat. This has been trying, perhaps the most trying phase of our lives so far.
Despite how difficult this diet has been on Kara and our family, we are seeing some improvement. Kara hasn't complained much of a tummy ache and her diapers have been almost normal. We have quite a problem with eczema which is nothing new but the fact that tummy aches are better is promising. Are we beginning to see a baseline again? Only time will tell, but I sure hope so, so we can get back to food trials again!
We've done pretty well with distraction and I was quick to catch on when she was getting hungry. At the first sign of crankiness, offer a bottle. We've done a lot of snuggling and rocking in the chair. She's been taking enough in and I've been weighing her daily, every morning, to make sure she's maintaining her weight.
One evening this week, I was away. I received a text from Brian letting me know that I needed to come home, that Kara was really upset and consolable because she wanted to eat. Her words were "no more owie tummy, my owie tummy all betta!" Talk about heartbreaking. I couldn't get home quick enough to hold my girl. Last night we had another one of these instances where she was crying inconsolable about food. I understood at that point what Brian was going through that night. She just sobbed and sobbed on my shoulder. I just have to remind myself that we have one week down and one week to go and this is to help her get better.
I have had to be reminded a few times that despite Kara not being able to eat, we still need to eat as well as feed our four year old. I wish it was as simple as to be able to say that no one is allowed to eat or even talk about food in front of Kara but we still need to eat. This has been trying, perhaps the most trying phase of our lives so far.
Despite how difficult this diet has been on Kara and our family, we are seeing some improvement. Kara hasn't complained much of a tummy ache and her diapers have been almost normal. We have quite a problem with eczema which is nothing new but the fact that tummy aches are better is promising. Are we beginning to see a baseline again? Only time will tell, but I sure hope so, so we can get back to food trials again!
Friday, September 9, 2011
Here We Go Again
Kara's been puffy lately. She got home from daycare Wednesday and it was the first think I noticed - she was puffy, pale and had dark circles under her eyes. No other symptoms besides those but really, she looked absolutely terrible. I called her GI office at the U that night and left a message with her primary's nurse yesterday morning. We also decided maybe we should pull beef from her diet as well.
Yesterday's menu was applesauce and potatoes. I also sent some corn to daycare. I got a message from our nurse, telling us that the doctor said to pull corn and that she wasn't sure what else to tell us, other than keep trying to get through at the U and wait for Cincinnati to come through. My heart sunk, I wasn't sure what to even think anymore. Pulling corn takes away kix, corn chex, corn pasta, all these staples that we started with and that we have resorted back to! What the heck can you really do with apple and potato? Grrrrrr...
I got home from work and let Brian know the suggestion and that I was also waiting for GI to call me. With that, I took Brenna to her first night of dance. Halfway through dance, my phone rang and it was Kara's "other" GI calling, the new one that we saw at the U a few weeks ago. We discussed everything that's gone on since we saw her last, Kara's rollercoaster of symptoms. How we pulled wheat, things got somewhat better, and how we had to pull the beef last night. With this, she strongly suggested we go with Plan B, which is something we had discussed at the last visit. Plan B is a Neocate only diet. ONLY. As in, it was hard enough to remove 15 foods from Kara's diet but now we need to remove EVERYTHING and rely on formula alone. On a 27 month old. GULP. She discussed with me how she wouldn't wish that upon anyone, understands that it's going to be one extremely difficult thing that we, as parents, will have to do, to deny our child food and hope that she understands, but it will be best. It sounds like Kara will be scoped at the end of all of this, we just need to give it a minimum of two weeks to see how she responds.
This doctor was so great on the phone. She talked to me like I was a real person and let me know that she understands how awful this could potentially be, and to definately keep them in contact for the next couple weeks and we'll decide from there what our next step was. I got off the phone with her and wanted to cry, but sucked it up and went back to watching my big girl dance.
We got home and Brian and I talked about this, trying to come to an agreement of what we need to do. I would LOVE and almost feel the NEED to keep some sort of solid in Kara's diet. KIX, a staple since she's been 9 months old, something, just for a little snack here and there. We need to decide what we are going to do, pick a day and do it. The sooner, the better, for Kara's sake.
Yesterday's menu was applesauce and potatoes. I also sent some corn to daycare. I got a message from our nurse, telling us that the doctor said to pull corn and that she wasn't sure what else to tell us, other than keep trying to get through at the U and wait for Cincinnati to come through. My heart sunk, I wasn't sure what to even think anymore. Pulling corn takes away kix, corn chex, corn pasta, all these staples that we started with and that we have resorted back to! What the heck can you really do with apple and potato? Grrrrrr...
I got home from work and let Brian know the suggestion and that I was also waiting for GI to call me. With that, I took Brenna to her first night of dance. Halfway through dance, my phone rang and it was Kara's "other" GI calling, the new one that we saw at the U a few weeks ago. We discussed everything that's gone on since we saw her last, Kara's rollercoaster of symptoms. How we pulled wheat, things got somewhat better, and how we had to pull the beef last night. With this, she strongly suggested we go with Plan B, which is something we had discussed at the last visit. Plan B is a Neocate only diet. ONLY. As in, it was hard enough to remove 15 foods from Kara's diet but now we need to remove EVERYTHING and rely on formula alone. On a 27 month old. GULP. She discussed with me how she wouldn't wish that upon anyone, understands that it's going to be one extremely difficult thing that we, as parents, will have to do, to deny our child food and hope that she understands, but it will be best. It sounds like Kara will be scoped at the end of all of this, we just need to give it a minimum of two weeks to see how she responds.
This doctor was so great on the phone. She talked to me like I was a real person and let me know that she understands how awful this could potentially be, and to definately keep them in contact for the next couple weeks and we'll decide from there what our next step was. I got off the phone with her and wanted to cry, but sucked it up and went back to watching my big girl dance.
We got home and Brian and I talked about this, trying to come to an agreement of what we need to do. I would LOVE and almost feel the NEED to keep some sort of solid in Kara's diet. KIX, a staple since she's been 9 months old, something, just for a little snack here and there. We need to decide what we are going to do, pick a day and do it. The sooner, the better, for Kara's sake.
Monday, September 5, 2011
The FPIES Foundation
Wednesday morning was the big launch of a project I and a group of 7 other amazing FPIES Mom's have been working on feverishly for the past few months. The FPIES Foundation.
I wrote a very brief post the other day about our foundation but that post doesn't do our foundation any justice! A few months ago I was approached by a friend, a mom, who along with a few others had a vision of a central hub where Families and Providers can all go to learn about FPIES. A place where a mom could go at two a.m. after getting home from the ER, after being up with a screaming baby all night, and find all sorts of resources in one spot instead of search after search, wondering which literature would be the right one to bring to her doctor, wondering which symptoms may be FPIES, wondering what their next step should be in this journey. We are all experienced moms, with children struggling with the unknowns of FPIES. We simply took what we wish we had and put our minds together to create this amazing foundation.
We saw the need for help now, as more and more moms have been coming out lately, having similar questions, replies from their physicians and the other similarities that all of our families share. This is a work in progress, as every foundation I'm sure is, but I feel that what we have launched has already helped so many! Stay tuned as our minds and bodies continue to work around the clock to improve this already amazing cause!!! We are working hard!!!
www.thefpiesfoundation.org
I wrote a very brief post the other day about our foundation but that post doesn't do our foundation any justice! A few months ago I was approached by a friend, a mom, who along with a few others had a vision of a central hub where Families and Providers can all go to learn about FPIES. A place where a mom could go at two a.m. after getting home from the ER, after being up with a screaming baby all night, and find all sorts of resources in one spot instead of search after search, wondering which literature would be the right one to bring to her doctor, wondering which symptoms may be FPIES, wondering what their next step should be in this journey. We are all experienced moms, with children struggling with the unknowns of FPIES. We simply took what we wish we had and put our minds together to create this amazing foundation.
We saw the need for help now, as more and more moms have been coming out lately, having similar questions, replies from their physicians and the other similarities that all of our families share. This is a work in progress, as every foundation I'm sure is, but I feel that what we have launched has already helped so many! Stay tuned as our minds and bodies continue to work around the clock to improve this already amazing cause!!! We are working hard!!!
www.thefpiesfoundation.org
Another Fail
Tuesday afternoon after work I picked the girls up and headed home. Kara immediately started asking for a ba-ba, which is typical for her. She drank her bottle down and snuggled. Ok, she's tired...had a long day. I can handle that. Shortly after, she started fussing about having a tummy ache again and sure enough, we dealt with tummy problems off and on through the evening. At one point I was going to leave a message with the doctor saying "just kidding! We're having trouble again!" but decided against it. Maybe it was a fluke thing and decided to ride it out for a few days.
We continued on the wheat, beef, apple diet and things progressed through the week. Four a.m. crying out "tummy.aches. tummy.aches." On Thursday I decided to call and leave a message that we are having problems. The nurse called me back and said "PULL WHEAT." and let us know they can see her on Tuesday if needed. I wanted to cry. I had a sinking feeling that we were building towards an intolerance to wheat but was in denial. It's pretty discouraging to keep having food fails now, on foods that for months (or even a year!) we thought were safe. I dont' know where we went wrong - trialing foods too quickly, I'm sure, and then having symptoms build so slowly that we didn't notice a difference until it became tummy aches and icky diapers four, five, sometimes even eight times a day and having so many foods in her diet that we had no clue what was going on.
This week has been difficult. With removing wheat, we added potato. Not sure if we were supposed to do that or not but she needs something to fill her tummy and potato's were originally thought to be safe. Kara is used to eating and was really good about knowing what she could have so this elimination and being nearly two and a half is one of the hardest things we've had to go through. Life is just not fair.
On a more positive note, Kara has been wheat free for three days now and her tummy seems to be improving. She's having occassional tummy aches and was up a few times last night but I'm confindent that it's still from the wheat being in her system and trying not to think that she may be building towards yet another food.
We continued on the wheat, beef, apple diet and things progressed through the week. Four a.m. crying out "tummy.aches. tummy.aches." On Thursday I decided to call and leave a message that we are having problems. The nurse called me back and said "PULL WHEAT." and let us know they can see her on Tuesday if needed. I wanted to cry. I had a sinking feeling that we were building towards an intolerance to wheat but was in denial. It's pretty discouraging to keep having food fails now, on foods that for months (or even a year!) we thought were safe. I dont' know where we went wrong - trialing foods too quickly, I'm sure, and then having symptoms build so slowly that we didn't notice a difference until it became tummy aches and icky diapers four, five, sometimes even eight times a day and having so many foods in her diet that we had no clue what was going on.
This week has been difficult. With removing wheat, we added potato. Not sure if we were supposed to do that or not but she needs something to fill her tummy and potato's were originally thought to be safe. Kara is used to eating and was really good about knowing what she could have so this elimination and being nearly two and a half is one of the hardest things we've had to go through. Life is just not fair.
On a more positive note, Kara has been wheat free for three days now and her tummy seems to be improving. She's having occassional tummy aches and was up a few times last night but I'm confindent that it's still from the wheat being in her system and trying not to think that she may be building towards yet another food.
Tuesday's Appointment
Kara saw her doctor on Tuesday, a follow up from the latest hospital stay. We were so excited and she had her own little statement to tell the doctor. I should have gotten a recording of her saying it, it was too cute! "Owie tummy is all bett-a. No more owies!"
We were so excited to report that Kara had been tummy ache free for that week. What we weren't excited for, however, was the report of the eczema. It is back, in full force. I think I had previously mentioned this. Not only her normal, horrible problem spots on her poor feet and ankles but her bottom, behind her knees, her wrists, her arms, even her tummy was beginning to get that familiar, rough feel to it. "It has to be the wheat" is what her doctor told us. "Watch her on the wheat."
Our clinic received their flu shots already, earlier than ever, this year. We debated giving her the shot already, because she was actually healthy but opted against it. This is something she's going to need this year, whether we like it or not. With her immune system being so low we can't take any risks. Now watch, we'll be kicking ourselves that we didn't just do it when we did because we'll have a run of illness now. I hope not!
We discussed how we are waiting on hearing back from Cincinnati (still waiting, getting a little discouraged!) and how Mayo actually told us that they'll see Kara but Cincinnati or Milwaukee would be better choices to really dig into what is going on with Kara. (WOW!) I explained that with three different specialists telling us that, I guess Cincinnati is what we need to do! We left this appointment with no plans for any scheduled follow-up - we are usually seen two or three times between anything scheduled, anyway! We have to keep the flu shot in the back of our minds and update her of any changes, of course. Oh, and Kara has maintained her weight! Yay!
We were so excited to report that Kara had been tummy ache free for that week. What we weren't excited for, however, was the report of the eczema. It is back, in full force. I think I had previously mentioned this. Not only her normal, horrible problem spots on her poor feet and ankles but her bottom, behind her knees, her wrists, her arms, even her tummy was beginning to get that familiar, rough feel to it. "It has to be the wheat" is what her doctor told us. "Watch her on the wheat."
Our clinic received their flu shots already, earlier than ever, this year. We debated giving her the shot already, because she was actually healthy but opted against it. This is something she's going to need this year, whether we like it or not. With her immune system being so low we can't take any risks. Now watch, we'll be kicking ourselves that we didn't just do it when we did because we'll have a run of illness now. I hope not!
We discussed how we are waiting on hearing back from Cincinnati (still waiting, getting a little discouraged!) and how Mayo actually told us that they'll see Kara but Cincinnati or Milwaukee would be better choices to really dig into what is going on with Kara. (WOW!) I explained that with three different specialists telling us that, I guess Cincinnati is what we need to do! We left this appointment with no plans for any scheduled follow-up - we are usually seen two or three times between anything scheduled, anyway! We have to keep the flu shot in the back of our minds and update her of any changes, of course. Oh, and Kara has maintained her weight! Yay!
Wednesday, August 31, 2011
The FPIES Foundation
I am happy to announce The FPIES Foundation and couldn't be prouder to say that I am one of the founding members of this wonderful organization!
http://www.thefpiesfoundation.org/
The extreme dedication of this group of eight amazing mom's never ceases to amaze me. It's a big deal already and there's even bigger things to come! Stay tuned!
http://www.thefpiesfoundation.org/
The extreme dedication of this group of eight amazing mom's never ceases to amaze me. It's a big deal already and there's even bigger things to come! Stay tuned!
Sunday, August 28, 2011
Week in Review
Kara has been feeling really good the past few days. The lack of food in her diet has been very challenging as she's not really interested in eating anything anymore and has been pretty moody but I can handle that since we've been tummy-ache free. We've bumped up the amount of bottles she gets a day, basically, if she asks for one, she gets one. If she's fussy, we offer it.
She sees her doctor on Tuesday, a check up from the hospital stay two weeks ago. I'm interested to see if she's been maintaining her weight despite the lack of appetite.
We're still waiting to hear back from Cincinnati as far as a schedule goes, who she'll be seeing and what procedures she'll have done while we are there.
That's all I have for an update today. Short and sweet!
She sees her doctor on Tuesday, a check up from the hospital stay two weeks ago. I'm interested to see if she's been maintaining her weight despite the lack of appetite.
We're still waiting to hear back from Cincinnati as far as a schedule goes, who she'll be seeing and what procedures she'll have done while we are there.
That's all I have for an update today. Short and sweet!
Wednesday, August 24, 2011
The First Dinner
We got home Monday night and it was time for dinner. Kara's meal was some beef, wheat pasta and some applesauce. Noodles (noo-noo's!) are her favorite. This child would eat noodles for breakfast, lunch and dinner if we let her. Easy enough, right? Well, she eats ketchup on nearly everything. EVERYTHING. (If you are thinking that that might be her tummy problems, tomato has been safe for a long time...and if you are "ewe-ing" at ketchup on noodles, ketchup on everything, it's not like she can load her pasta full of butter and other seasonings!) :)
Anyway, I brought her plate to her and she immediately asked for ketchup. My heart broke. I got down to her level "Kara, your tummy doctor said no more ketchup, sweetie. She said it might be making your tummy owie." "Oh! No owie tummy Mommy" is what Kara replied, rubbing her tummy. She took her plate and started eating it up like it was no big deal. Just before dinner Brian had a battle with Brenna at the grocery store about how she wasn't getting a treat that resulted in a major meltdown and then I had to take ketchup away from Kara, the one food (food?) that she loved in case it's causing her problems. Kinda puts things in perspective, doesn't it?
This is going to be a rough few weeks. Patience, patience, patience.
Anyway, I brought her plate to her and she immediately asked for ketchup. My heart broke. I got down to her level "Kara, your tummy doctor said no more ketchup, sweetie. She said it might be making your tummy owie." "Oh! No owie tummy Mommy" is what Kara replied, rubbing her tummy. She took her plate and started eating it up like it was no big deal. Just before dinner Brian had a battle with Brenna at the grocery store about how she wasn't getting a treat that resulted in a major meltdown and then I had to take ketchup away from Kara, the one food (food?) that she loved in case it's causing her problems. Kinda puts things in perspective, doesn't it?
This is going to be a rough few weeks. Patience, patience, patience.
Two Choices
We saw a new GI doctor on Monday. The same facility, only this was the doctor that Kara's family doctor had spoke with on the phone when Kara was in the hospital, the one who suggested Cincinnati or Milwaukee for Kara's care. I was impressed with the fact that she really seemed to know FPIES and how it works. She explained all of the allergy parts of it and how complex it is. She explained how tough it is on parents, children and providers because there is never any one answer. Each situation is different - each child, each reaction at times, everything. We went on about our frustrations and discussed Cincinnati vs. Mayo, being more and more convinced that Cincinnati is the way we need to go. Then it was time to discuss our options with Kara in the meantime.
She gave us two choices. One, we can take Kara completely off ALL food but Neocate for four weeks and then she could be scoped at that point. I think we both gasped at that suggestion. NO WAY. It's hard enough explaining to Kara on a daily basis that she can't have something because it's owie on her tummy. I couldn't even fathom taking ALL food from her. We did that a year ago, it sucked with a 15 month old, I can't imagine with a 27 month old! The other is to try bringing Kara's diet down to three foods that we are pretty much certain are safe and only stick to those for 4 weeks. This could prove to be a little more difficult if she continued to react to one of those three foods, we'd have to guess at which one to remove and potentially could be back to the Neocate only if those three don't end up working out. I'm not quite sure of the plan past there - scoping at the end or not...my head was spinning a little bit by the time we left the appointment and we no sooner left the room and started talking about which foods to even put her on. We are to call her with our decision and I'll find out more then, I guess. We went back and forth between foods that we are pretty sure are safe, to foods that she likes more than others, to foods that would offer more options. This conversation consumed our ride home. In the end, we are sticking with a diet of beef, wheat and apples. That's it. Four weeks. We'll see how it goes.
She gave us two choices. One, we can take Kara completely off ALL food but Neocate for four weeks and then she could be scoped at that point. I think we both gasped at that suggestion. NO WAY. It's hard enough explaining to Kara on a daily basis that she can't have something because it's owie on her tummy. I couldn't even fathom taking ALL food from her. We did that a year ago, it sucked with a 15 month old, I can't imagine with a 27 month old! The other is to try bringing Kara's diet down to three foods that we are pretty much certain are safe and only stick to those for 4 weeks. This could prove to be a little more difficult if she continued to react to one of those three foods, we'd have to guess at which one to remove and potentially could be back to the Neocate only if those three don't end up working out. I'm not quite sure of the plan past there - scoping at the end or not...my head was spinning a little bit by the time we left the appointment and we no sooner left the room and started talking about which foods to even put her on. We are to call her with our decision and I'll find out more then, I guess. We went back and forth between foods that we are pretty sure are safe, to foods that she likes more than others, to foods that would offer more options. This conversation consumed our ride home. In the end, we are sticking with a diet of beef, wheat and apples. That's it. Four weeks. We'll see how it goes.
Monday, August 15, 2011
The Plan
Last week we had Immunology on Monday and then an appointment with Kara's primary doctor on Tuesday. Since then I've still been trying to process what the right thing to do is and have been an absolute rollercoaster on my decisions. (Or lack of!)
Our frustrations with the GI department at the U of MN have gotten out of control. Our doctor has sensed this and being at this appointment reminded me of the last conversation I'd had with her when I started to tear up "I'm just so frustrated!". Brian was with at this appointment on Tuesday, as I knew it was going to be a big one, having just found out about how low Kara's IgA actually was, with her other health problems. We were both trying to referee the girls and talk with the doctor which was difficult. She put it out there that she thinks we really need to get another opinion, a brand new set of eyes on Kara because there are obviously other things going on with her than "just" her typical FPIES symptoms. She carefully put it out there that she really thinks we need to get a consult at Mayo. Now. I wasn't really happy about this - I had finally found faith in Kara's GI doctor, despite the rest of the department, or the nurse coordinator anyway, being absolutely awful to work with. Besides that we already have to travel 2 1/2 hours away for Kara's appointments, and Mayo is a good 4-4 1/2 hours away from us. Brian and I looked at each other, I think feeling the same thing. This isn't going to work. The doctor explained the process of getting her in and how she felt Kara could benefit from a consult there and by the end of the appointment, I think we were all on the same page. I was ready to start over, from scratch and get a fresh opinion on everything that has been going on with my girl in the last few months.
We got through last week, that appointment being Tuesday afternoon and knowing that the process would be a while and if we didn't hear something in a week to let them know. Wednesday I went home early from work because of not feeling well, Thursday I stayed home. It's time for those fall allergies and they have left me feeling awful. Friday morning I went to the clinic and actually had an appointment with Kara's doctor for these allergies and we just briefly talked about Kara again, still going with the same plan. This is where you read the previous post about how quickly things changed for Kara and how she ended up in the hospital Friday night.
Enter Saturday morning. Our doctor came to Kara's room and we spoke more about Mayo, finally realizing that my girl is SICK and we need to have another look at her, there is no choice. She got on the phone with the on-call GI doctor at the U and that's when they decided that what Kara was going through was a classic FPIES reaction, only pretty severe. She was discussing the rest of Kara's symptoms and let the GI doctor know that she was going to be sending us to Mayo and the doctor responded with the fact that she doesn't think Mayo is going to be able to do any better for Kara than they are able to do and really feels like with Kara's complex history and a complex family history of GI problems, that we need to jump right to the speciality centers. Her suggestions are Cincinnati or Milwaukee. GULP. "How the heck are we supposed to do that?" I asked. We are struggling! I guess things have a way of working themselves out and that Cincinnati has a great Ronald McDonald house. She left us to think about all of that and said we'd talk about it the next morning when she was in again.
Throughout the day it was all I thought about. Milwaukee is 6 1/2 hours from here and Cincinnati is 13 1/2. Either way it's going to be quite a trip. Cincinnati, from what I've found, is "better" - a little more specialized and has the team approach right there of exactly what we need: gastroenterology, immunology, allergy, dermatology, possibly hematology amongst others. I settled at the moment that if we have to travel at all we might as well go to the best instead of the closest. Brian and I talked it over, I made some phone calls with some resources I have, did a lot of searching on the internet. My thoughts went from "lets go" to "hell no" every five minutes.
That evening I had a decision that in my mind, worked fine. We need to find someone in MN to just do a scope on Kara to see what we are dealing with and then, if needed, we'll go out to Cincinnati. Simple enough, right?
Dr. M came in the next morning and I explained this to her. Basically we don't have much time to waste. If we messed around with trying to get it done here only to go there right after, they would start over doing their own labs, their own scopes because they'd want different looks at this, a different slide of that, and it would be putting Kara through all of it twice. As it is she's had way too much blood drawn, way too many needle sticks and it's heart breaking. Besides, she has had anesthesia reactions both times she's been under so it's just something we can't mess around with. We need to do this. There is no questioning it.
Our frustrations with the GI department at the U of MN have gotten out of control. Our doctor has sensed this and being at this appointment reminded me of the last conversation I'd had with her when I started to tear up "I'm just so frustrated!". Brian was with at this appointment on Tuesday, as I knew it was going to be a big one, having just found out about how low Kara's IgA actually was, with her other health problems. We were both trying to referee the girls and talk with the doctor which was difficult. She put it out there that she thinks we really need to get another opinion, a brand new set of eyes on Kara because there are obviously other things going on with her than "just" her typical FPIES symptoms. She carefully put it out there that she really thinks we need to get a consult at Mayo. Now. I wasn't really happy about this - I had finally found faith in Kara's GI doctor, despite the rest of the department, or the nurse coordinator anyway, being absolutely awful to work with. Besides that we already have to travel 2 1/2 hours away for Kara's appointments, and Mayo is a good 4-4 1/2 hours away from us. Brian and I looked at each other, I think feeling the same thing. This isn't going to work. The doctor explained the process of getting her in and how she felt Kara could benefit from a consult there and by the end of the appointment, I think we were all on the same page. I was ready to start over, from scratch and get a fresh opinion on everything that has been going on with my girl in the last few months.
We got through last week, that appointment being Tuesday afternoon and knowing that the process would be a while and if we didn't hear something in a week to let them know. Wednesday I went home early from work because of not feeling well, Thursday I stayed home. It's time for those fall allergies and they have left me feeling awful. Friday morning I went to the clinic and actually had an appointment with Kara's doctor for these allergies and we just briefly talked about Kara again, still going with the same plan. This is where you read the previous post about how quickly things changed for Kara and how she ended up in the hospital Friday night.
Enter Saturday morning. Our doctor came to Kara's room and we spoke more about Mayo, finally realizing that my girl is SICK and we need to have another look at her, there is no choice. She got on the phone with the on-call GI doctor at the U and that's when they decided that what Kara was going through was a classic FPIES reaction, only pretty severe. She was discussing the rest of Kara's symptoms and let the GI doctor know that she was going to be sending us to Mayo and the doctor responded with the fact that she doesn't think Mayo is going to be able to do any better for Kara than they are able to do and really feels like with Kara's complex history and a complex family history of GI problems, that we need to jump right to the speciality centers. Her suggestions are Cincinnati or Milwaukee. GULP. "How the heck are we supposed to do that?" I asked. We are struggling! I guess things have a way of working themselves out and that Cincinnati has a great Ronald McDonald house. She left us to think about all of that and said we'd talk about it the next morning when she was in again.
Throughout the day it was all I thought about. Milwaukee is 6 1/2 hours from here and Cincinnati is 13 1/2. Either way it's going to be quite a trip. Cincinnati, from what I've found, is "better" - a little more specialized and has the team approach right there of exactly what we need: gastroenterology, immunology, allergy, dermatology, possibly hematology amongst others. I settled at the moment that if we have to travel at all we might as well go to the best instead of the closest. Brian and I talked it over, I made some phone calls with some resources I have, did a lot of searching on the internet. My thoughts went from "lets go" to "hell no" every five minutes.
That evening I had a decision that in my mind, worked fine. We need to find someone in MN to just do a scope on Kara to see what we are dealing with and then, if needed, we'll go out to Cincinnati. Simple enough, right?
Dr. M came in the next morning and I explained this to her. Basically we don't have much time to waste. If we messed around with trying to get it done here only to go there right after, they would start over doing their own labs, their own scopes because they'd want different looks at this, a different slide of that, and it would be putting Kara through all of it twice. As it is she's had way too much blood drawn, way too many needle sticks and it's heart breaking. Besides, she has had anesthesia reactions both times she's been under so it's just something we can't mess around with. We need to do this. There is no questioning it.
REACTION
We had a lot to look forward to this weekend. The annual summer festival in a neighboring town, a wedding of two good friends, sister and brother in law with niece in town, lots of fun and time to relax for once. Little did we know how fast our plans would change!
Friday evening was spent at Grandma and Grandpas house where the girls all played nicely, we had a nice family dinner with the little girls at their very own table, more playing outside and followed by a little bonfire on the patio. We were having a wonderful time visiting, laughing and Kara was being SUCH a ham through the night. She was making us all laugh!
Her tummy aches were plenty that day, as they have been lately and due to having a blow out diaper she was in a spare pair of clothes that Grandma had there for her. I clearly remember pointing out her buddah belly that seemed to be sticking out of her shirt and thinking when that shirt became that small on her. I watched and commented as she started to become more and more pale, but she was still so happy, laughing and running around.
It got late and it was way past our kids bedtime by the time we finally got home. We carried the big girl in the house and put her to bed and I snuggled Kara as she drank her bottle. Kara sat straight up after her bottle and let out a very large, icky sounding burp - the kind where you wait for her to start puking but nothing came up. She was acting really off so we had her sleep with us, laying her down as we got ready for bed. We just climbed in bed and Kara sat straight up, starting to vomit. This was scary. So, so scary. She's had plenty of vomiting lately but this was different. She couldn't stop, it was constant, it was coming out of her mouth, nose, she was choking on it, and again, couldn't stop. We looked at each other in terror as we got her out of our vomit soaked bed and into the bathroom. We didn't quite know what to do - Brian got on the phone with his mom - "Come out here now, Kara's sick" and demanded that I get in the car and get on my way to the ER with her while he waited for his mom since Brenna was sleeping. (We are five minutes away - it's quicker to fly up there with her than to call an ambulance in situations like this.) I said no to him, that I'd wait so he could come with me but he sent me on my way. I was absolutely terrified. I called the ER on my way in to let them know we were on our way. We got there and they quickly took Kara back and sent the doctor in. They had briefed the doctor on Kara's care and pulled her ER letter from her doctor and allergist. They got the IV started and blood drawn right away and this is when I pleaded with the doctor to let us stay here instead of being transferred. I explained our situation two weeks ago where we were transferred and she was treated with IV fluids and we were sent home, still waiting for any sort of continuing care, that it was a waste of our time when we could have stayed right here at our hometown hospital. She listened, letting us know that was fine but if her lab work showed anything than we would have to go back there.
Kara hardly fought the IV stick, I was told she had no tears through her crying, and she was cold and clammy as well as being white as a ghost. She was also tachycardic again. The ER doctor called Kara's doctor and they agreed to admit her here in town and her doctor would be in in the morning to evaluate her. We finally got to a room about 3:00 in the morning and after going through the admission process, were ready for some rest. Kara was poked and prodded at, had to have additional blood cultures done and was just done being messed with and ready to sleep.
The next morning, despite her IV running all night, she still hadn't had any wet diapers. Our doctor came in and we went through everything that happened the night before. What happened is what sounds exactly like her "classic" FPIES reaction. Both Brian and I thought and thought about what she could have possibly reacted to but came up with NOTHING. The dinner the night before was all Kara safe - at one point I panicked thinking Kara had Brenna's sippy but then realized it was her own. We still have NO CLUE what could have caused her to get so sick. The scariest thing is that whatever it was, wasn't much of anything and caused what I think is the most severe reaction in Kara yet.
They kept Kara's IV going at a pretty good rate since she hadn't had any wet diapers yet. I think it was 10:00 that morning before she finally peed, so a good 12 hours since the reaction had happened. We were on the plan of her being on water and ice chips only and to see how that went, while the doctor worked on making some phone calls to see what we should do next. We were given some options to think carefully about and be ready to talk about them more on Sunday morning. I haven't had much of anything to say about last weeks options or our newest ones yet as I'm still processing and not quite sure what the heck we should do next. Once I get this figured out in my head I'll blog about what the heck we are going to do.
Kara was able to be discharged yesterday morning. Her vomiting had stopped but she is still having pretty icky diapers and tummy aches. We've started a log of everything that goes in and everything that comes out. We took many, many steps back in her diet and she can't be in daycare, for at least a week. She will be starting a new medication tomorrow, an antibiotic to hopefully help with the gut bacteria but we dont' know what that will do to her tummy either which is why we were instructed to wait until Tuesday, to give her tummy a little more time to rest.
We are home today getting things figured out with follow up appointments, getting meds compounded, settling things with work and keeping a close eye on Kara. She's had a few episodes today where she's become really pale and has cried out with a tummy ache but so far, she's been ok. I don't know when I'll relax again, knowing how quickly things went downhill the other day.
Friday evening was spent at Grandma and Grandpas house where the girls all played nicely, we had a nice family dinner with the little girls at their very own table, more playing outside and followed by a little bonfire on the patio. We were having a wonderful time visiting, laughing and Kara was being SUCH a ham through the night. She was making us all laugh!
Her tummy aches were plenty that day, as they have been lately and due to having a blow out diaper she was in a spare pair of clothes that Grandma had there for her. I clearly remember pointing out her buddah belly that seemed to be sticking out of her shirt and thinking when that shirt became that small on her. I watched and commented as she started to become more and more pale, but she was still so happy, laughing and running around.
It got late and it was way past our kids bedtime by the time we finally got home. We carried the big girl in the house and put her to bed and I snuggled Kara as she drank her bottle. Kara sat straight up after her bottle and let out a very large, icky sounding burp - the kind where you wait for her to start puking but nothing came up. She was acting really off so we had her sleep with us, laying her down as we got ready for bed. We just climbed in bed and Kara sat straight up, starting to vomit. This was scary. So, so scary. She's had plenty of vomiting lately but this was different. She couldn't stop, it was constant, it was coming out of her mouth, nose, she was choking on it, and again, couldn't stop. We looked at each other in terror as we got her out of our vomit soaked bed and into the bathroom. We didn't quite know what to do - Brian got on the phone with his mom - "Come out here now, Kara's sick" and demanded that I get in the car and get on my way to the ER with her while he waited for his mom since Brenna was sleeping. (We are five minutes away - it's quicker to fly up there with her than to call an ambulance in situations like this.) I said no to him, that I'd wait so he could come with me but he sent me on my way. I was absolutely terrified. I called the ER on my way in to let them know we were on our way. We got there and they quickly took Kara back and sent the doctor in. They had briefed the doctor on Kara's care and pulled her ER letter from her doctor and allergist. They got the IV started and blood drawn right away and this is when I pleaded with the doctor to let us stay here instead of being transferred. I explained our situation two weeks ago where we were transferred and she was treated with IV fluids and we were sent home, still waiting for any sort of continuing care, that it was a waste of our time when we could have stayed right here at our hometown hospital. She listened, letting us know that was fine but if her lab work showed anything than we would have to go back there.
Kara hardly fought the IV stick, I was told she had no tears through her crying, and she was cold and clammy as well as being white as a ghost. She was also tachycardic again. The ER doctor called Kara's doctor and they agreed to admit her here in town and her doctor would be in in the morning to evaluate her. We finally got to a room about 3:00 in the morning and after going through the admission process, were ready for some rest. Kara was poked and prodded at, had to have additional blood cultures done and was just done being messed with and ready to sleep.
The next morning, despite her IV running all night, she still hadn't had any wet diapers. Our doctor came in and we went through everything that happened the night before. What happened is what sounds exactly like her "classic" FPIES reaction. Both Brian and I thought and thought about what she could have possibly reacted to but came up with NOTHING. The dinner the night before was all Kara safe - at one point I panicked thinking Kara had Brenna's sippy but then realized it was her own. We still have NO CLUE what could have caused her to get so sick. The scariest thing is that whatever it was, wasn't much of anything and caused what I think is the most severe reaction in Kara yet.
They kept Kara's IV going at a pretty good rate since she hadn't had any wet diapers yet. I think it was 10:00 that morning before she finally peed, so a good 12 hours since the reaction had happened. We were on the plan of her being on water and ice chips only and to see how that went, while the doctor worked on making some phone calls to see what we should do next. We were given some options to think carefully about and be ready to talk about them more on Sunday morning. I haven't had much of anything to say about last weeks options or our newest ones yet as I'm still processing and not quite sure what the heck we should do next. Once I get this figured out in my head I'll blog about what the heck we are going to do.
Kara was able to be discharged yesterday morning. Her vomiting had stopped but she is still having pretty icky diapers and tummy aches. We've started a log of everything that goes in and everything that comes out. We took many, many steps back in her diet and she can't be in daycare, for at least a week. She will be starting a new medication tomorrow, an antibiotic to hopefully help with the gut bacteria but we dont' know what that will do to her tummy either which is why we were instructed to wait until Tuesday, to give her tummy a little more time to rest.
We are home today getting things figured out with follow up appointments, getting meds compounded, settling things with work and keeping a close eye on Kara. She's had a few episodes today where she's become really pale and has cried out with a tummy ache but so far, she's been ok. I don't know when I'll relax again, knowing how quickly things went downhill the other day.
Tuesday, August 9, 2011
Immunology and Hospital Follow Up
Immunology has me so confused. I learned a lot yesterday and it has my mind spinning. IgE, IgA, IgG, IgM,P,Q,H...It's not that bad but might as well be. We learned that Kara's IgE levels are high, which is completely expected. She's a "highly allergic" child based on how sensitive her skin is, our struggles with eczema despite the treatments we do, and her dairy allergy. The IgG (please correct me if I'm wrong) is more to do with the FPIES part of things but as the doctor explained to me yesterday, this is what is "believed" but since so little is known about FPIES, there's no for sure anything! All of her levels were off in one way or another, again to be expected just from what we knew about Kara based on her medical history, but the IgA one is the one that was most concerning. The IgA level was very low which completely explains why Kara gets SO sick when she gets sick and gets sick OFTEN. She doesn't have much of a fighting mechanism in her at all. The Immunologist wasn't the least bit surprised to hear how quick illness hits her, as I explained how sick she got in the matter of a few hours that put her in the hospital. She scoured over pages and pages of medical records - office notes, ER and hospital records and layed all of her past labs out in chronological order trying to make some sense out of what her blood is doing when she is sick.
I started explaining Kara's tummy aches and while I was doing this Kara was an embarrassing, naughty little girl. She was on my lap, screaming "MOM" in my face, just being completely obnoxiously two years old. I would calmly get her to focus on me so I could keep talking with the doctor and at one point apologized "I'm so sorry, I don't know WHAT is going on with her, she's usually such a happy girl and the perfect patient!" At that point, Kara actually HIT ME as I was talking to the doctor and not her! I swear I could feel the residents eyes of horror on me as the doctor asked her to go get the Duplos for her to play with. Those distracted Kara for a little while so we could continue with the appointment. Kara had started having gas at this point and it was SMELLY! She had a tummy ache - no wonder she was being so naughty! She started with the gas and followed with one of the nastiest diapers I've changed in a while, that could have cleared a room, only the doctor was actually pretty thrilled that she did this! "Perfect! Let's take a look!" We collected a sample and with that she ran loads more of the stool tests. She sent me home with an order for some additional labs. She was shocked that no one has tested for c-diff, giardi, and a bunch of others. She said they'll probably be negative but how wonderful (Wonderful?! In an odd way, I guess!) it would be if that was all (again, ALL?) that it was!
We are going to wait for these labs to come back and if they show nothing then I think that will be reason enough for another GI workup. She explained that because of the low IgA Kara is going to be so much more susceptible to getting sick and because of that, there are many precautions we'll have to take, especially as winter comes. She'll be calling me when she receives some more of the lab results back and we'll go from there. it was a good appointment and there is so much more to it but I can't get what's processed in my head down at all!
Today we saw Kara's family doctor for her hospital follow up. We talked about her hospital stay and how we can start at our hometown hospital and be admitted and go from there - that it's not necessary to be transferred to the U since they didn't do anything for us there that couldn't be done here. We went over all of her labs from the last two weeks. We talked about her Immunology appointment yesterday and what measures we can take this winter to help keep her healthy. (NO DAYCARE, in a perfect world, but understands that it is necessary.) I asked if she'd have any pull with our GI doctor as far as getting another scope and she said she doubts it but if all these stool tests come back ok than it will probably be necessary. We talked about the lack of communication between her specialists and how I feel like there is more going on, and I think it was agreed but that we can't seem to get anywhere.
We have lots to think about and my mind is absolutely fried with all of this information. We have lab results that we are now waiting on and some decisions to make. I hate this game.
I started explaining Kara's tummy aches and while I was doing this Kara was an embarrassing, naughty little girl. She was on my lap, screaming "MOM" in my face, just being completely obnoxiously two years old. I would calmly get her to focus on me so I could keep talking with the doctor and at one point apologized "I'm so sorry, I don't know WHAT is going on with her, she's usually such a happy girl and the perfect patient!" At that point, Kara actually HIT ME as I was talking to the doctor and not her! I swear I could feel the residents eyes of horror on me as the doctor asked her to go get the Duplos for her to play with. Those distracted Kara for a little while so we could continue with the appointment. Kara had started having gas at this point and it was SMELLY! She had a tummy ache - no wonder she was being so naughty! She started with the gas and followed with one of the nastiest diapers I've changed in a while, that could have cleared a room, only the doctor was actually pretty thrilled that she did this! "Perfect! Let's take a look!" We collected a sample and with that she ran loads more of the stool tests. She sent me home with an order for some additional labs. She was shocked that no one has tested for c-diff, giardi, and a bunch of others. She said they'll probably be negative but how wonderful (Wonderful?! In an odd way, I guess!) it would be if that was all (again, ALL?) that it was!
We are going to wait for these labs to come back and if they show nothing then I think that will be reason enough for another GI workup. She explained that because of the low IgA Kara is going to be so much more susceptible to getting sick and because of that, there are many precautions we'll have to take, especially as winter comes. She'll be calling me when she receives some more of the lab results back and we'll go from there. it was a good appointment and there is so much more to it but I can't get what's processed in my head down at all!
Today we saw Kara's family doctor for her hospital follow up. We talked about her hospital stay and how we can start at our hometown hospital and be admitted and go from there - that it's not necessary to be transferred to the U since they didn't do anything for us there that couldn't be done here. We went over all of her labs from the last two weeks. We talked about her Immunology appointment yesterday and what measures we can take this winter to help keep her healthy. (NO DAYCARE, in a perfect world, but understands that it is necessary.) I asked if she'd have any pull with our GI doctor as far as getting another scope and she said she doubts it but if all these stool tests come back ok than it will probably be necessary. We talked about the lack of communication between her specialists and how I feel like there is more going on, and I think it was agreed but that we can't seem to get anywhere.
We have lots to think about and my mind is absolutely fried with all of this information. We have lab results that we are now waiting on and some decisions to make. I hate this game.
Follow Ups
Kara seems to be doing much better now, with the exception of the "normal" icky tummy aches and diapers that she's been having. Despite MANY annoyances with the U of M as far as getting a follow up appointment made, I think we might be getting somewhere. The soonest I could get her in for a hospital follow up with her GI doctor was six weeks away. This was after many phone calls and a few pages to the GI nurse where I explained that we were transferred to the U for continued care because the physicians here didn't know what else to do with her. I'm still irritated with this because they treated her down there for gastroenteritis and sent us home - come back in the middle of September! :) (They could have done this at home instead of having us drive 2 1/2 hours at 1:30 in the morning. A few days later, Kara's GI doctor called me and settled me down a little bit about this (I was fuming, good thing I didn't blog about this during the process!!!) and explained that after talking with another physician at the U that they decided that Kara should see a new Allergist/Immunologist. I asked about scoping Kara again, thinking that it might be necessary because we still have no answers to why she is in daily pain and why her food keeps running right through her and she explained how she wanted to wait until the Immunology Consult and go from there. Still no appointment was made and it was explained to call her (extremely non-helpful) nurse to get her in. Whatever. My frustrations were way too high to continue worrying about this. I like to be in control and this was clearly not the case here! So, I decided to sit and wait. Things ended up working out - I got Kara in to see the new immunologist yesterday, a week later, and we saw her primary doctor today. We spent the weekend with family near the cities where Kara played and got lots of special attention. Sunday we travelled a little further south and visited with another FPIES family and that afternoon we took Kara to the MN Zoo where she had a blast with the undivided attention she got from my cousin and her boyfriend who came with us. Kara also got to have treats there - cotton candy and a frozen lemonade drink! She was loving it! It was a nice change to have some fun before appointments instead of making the long trip all in one day.
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