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!)
Sunday, October 30, 2011
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...)
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