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.
Showing posts with label fpies. Show all posts
Showing posts with label fpies. Show all posts
Tuesday, October 11, 2011
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...)
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.
Sunday, February 13, 2011
Pressing On
So far we have a full 4 days of amoxicillin in Kara and we push on. It's definitely not going as bad as the augmentin went but we are having some questionable symptoms.
I've heard of FPIES Moms talking about how their child has periods in the night where they are wide awake. We've never experienced this symptom in the past but last night we had our first one. Kara was up for over 3 1/2 hours. It started with fussing, and lots of it. I finally got up and she looked at me asking for a ba-ba. I made a bottle, went to bring it to her and she screamed. She wanted to be snuggled. Ok, I can handle that. She laid in bed next to me, drinking her bottle. Once she was finished, I put her back in the crib and she screamed again. Something was wrong and she was in no way going back in there. I put her back in the bed with me and she snuggled. I rolled over, pretending to be asleep and periodically would look over at her, and those big blue eyes would be staring right back at me. For a while, she fussed and squirmed, and then finally had an icky diaper. Thinking this was the reason for the fussiness, I changed her and attempted to put her back in the crib but she would NOT have it. She normally dives into the crib, and is not a snuggler at all! She LOVES her crib! This went on as I watched the clock, starting at 12:30. At 4:00, the last time I checked the clock, she had finally started to relax and I was able to doze off, only to be woken up by this same behavior at 6:00. I grabbed another bottle, hoping she'd go right back to sleep and we battled, only this time she was one cranky little girl! With the lack of sleep and tummy ache all night and day, I guess it's to be expected.
We've had some icky diapers, some crankiness, and now the restless night. I'm trying not to think too much into all of this, and am trying to remember that the benefits are outweighing the risks at this point. We need these ears to clear up, so we press on.
I've heard of FPIES Moms talking about how their child has periods in the night where they are wide awake. We've never experienced this symptom in the past but last night we had our first one. Kara was up for over 3 1/2 hours. It started with fussing, and lots of it. I finally got up and she looked at me asking for a ba-ba. I made a bottle, went to bring it to her and she screamed. She wanted to be snuggled. Ok, I can handle that. She laid in bed next to me, drinking her bottle. Once she was finished, I put her back in the crib and she screamed again. Something was wrong and she was in no way going back in there. I put her back in the bed with me and she snuggled. I rolled over, pretending to be asleep and periodically would look over at her, and those big blue eyes would be staring right back at me. For a while, she fussed and squirmed, and then finally had an icky diaper. Thinking this was the reason for the fussiness, I changed her and attempted to put her back in the crib but she would NOT have it. She normally dives into the crib, and is not a snuggler at all! She LOVES her crib! This went on as I watched the clock, starting at 12:30. At 4:00, the last time I checked the clock, she had finally started to relax and I was able to doze off, only to be woken up by this same behavior at 6:00. I grabbed another bottle, hoping she'd go right back to sleep and we battled, only this time she was one cranky little girl! With the lack of sleep and tummy ache all night and day, I guess it's to be expected.
We've had some icky diapers, some crankiness, and now the restless night. I'm trying not to think too much into all of this, and am trying to remember that the benefits are outweighing the risks at this point. We need these ears to clear up, so we press on.
Friday, January 28, 2011
Reaction
We took a break from the chicken and went back to Kara's two safe meats - beef and ham. She had beef for lunch yesterday in her spaghetti and then ham for supper last night, along with a little bit more beef when she was at Grandma and Grandpa's house. I packed her safe little meal, as I always do when we leave the house with her. We were taking her big sister out to her favorite pizza joint for going to bed like a big girl all week. Leaving Kara with Grandma and Grandpa would be more fun for both girls and we wouldn't have to worry about keeping Kara out of the pizza!
We got back to pick up Kara, she ate really well, all of the dinner we sent with - ham, green beans and some Kara-safe oyster crackers - and then she wanted more so they gave her a Kara-safe hotdog. While we were still there she had a very icky, questionable diaper. What the heck? We went over with his parents everything she had eaten through the day and couldn't figure it out. Oh well, it's not unusual for her to have off symptoms lately. I started thinking back to how I thought she was having a build reaction to the chicken, then reminding myself she hadn't had it in 2 days.
We packed up to get home for bedtime, to stick with our routine that we had going so well. Both girls were in bed and Brian and I were watching TV. We heard this horrible scream, he muted the TV as I jumped up to run upstairs. He asked if he should come and I yelled "follow!" Deja Vu struck hard. The screaming, the foul smell coming from her bedroom, I knew what was happening before I even got in there. We found her sitting in her crib, covered in vomit. I grabbed her and went to the bathroom to get her cleaned up while Brian stripped the crib, the entire time wondering what the heck she was having a reaction to. Once I got her settled down and cleaned up we went down to snuggle, to make sure she was ok. Her tummy was one big knot and she had a few really big, questionable burps. No more vomiting occurred though. (Very strangely, I forgot about our ER plan - the letter we have in place if she does have a reaction.) I think she did ok with this one because she only vomited the one time. She took a few sips of water and snuggled in while he called his parents to go over everything again.
We have no real idea what the heck caused this reaction. It wasn't chicken because it's been a few days since having it. It was beans, ham or beef unless she got a hold of something she couldn't have, which I kind of doubt - she's SO good at picking things off the floor if she finds something, and bringing it to me. I can't imagine what the heck happened. It's been over a year since her last vomiting reaction. I want to say it was last December that she had the oat reaction.
Today's diet? Kix and Neocate so far. Can't go wrong with that - I'm not ready to give her anything after what happened last night!
We got back to pick up Kara, she ate really well, all of the dinner we sent with - ham, green beans and some Kara-safe oyster crackers - and then she wanted more so they gave her a Kara-safe hotdog. While we were still there she had a very icky, questionable diaper. What the heck? We went over with his parents everything she had eaten through the day and couldn't figure it out. Oh well, it's not unusual for her to have off symptoms lately. I started thinking back to how I thought she was having a build reaction to the chicken, then reminding myself she hadn't had it in 2 days.
We packed up to get home for bedtime, to stick with our routine that we had going so well. Both girls were in bed and Brian and I were watching TV. We heard this horrible scream, he muted the TV as I jumped up to run upstairs. He asked if he should come and I yelled "follow!" Deja Vu struck hard. The screaming, the foul smell coming from her bedroom, I knew what was happening before I even got in there. We found her sitting in her crib, covered in vomit. I grabbed her and went to the bathroom to get her cleaned up while Brian stripped the crib, the entire time wondering what the heck she was having a reaction to. Once I got her settled down and cleaned up we went down to snuggle, to make sure she was ok. Her tummy was one big knot and she had a few really big, questionable burps. No more vomiting occurred though. (Very strangely, I forgot about our ER plan - the letter we have in place if she does have a reaction.) I think she did ok with this one because she only vomited the one time. She took a few sips of water and snuggled in while he called his parents to go over everything again.
We have no real idea what the heck caused this reaction. It wasn't chicken because it's been a few days since having it. It was beans, ham or beef unless she got a hold of something she couldn't have, which I kind of doubt - she's SO good at picking things off the floor if she finds something, and bringing it to me. I can't imagine what the heck happened. It's been over a year since her last vomiting reaction. I want to say it was last December that she had the oat reaction.
Today's diet? Kix and Neocate so far. Can't go wrong with that - I'm not ready to give her anything after what happened last night!
Chicken Part 2
Update: I had this saved in my drafts from a few days ago, I never got a chance to get it posted.
Chicken seems to be going ok. Yesterday I wondered if we were going to have a fail but she seemed to eat well last night and then again for lunch and dinner tonight. There's so much gray area, when I wish it could be black and white. With the rice and oat reactions, they were definite, and serious enough for me to not even consider touching them with a 10 foot pole ever again! It seems like so many of our foods that we've trialed in the last six months have been the same pattern. Day One is ok, Day Two is questionable, and then a few more days of questionable symptoms that we push through until finally, she is back to normal again. I can't help but wonder if her body is just that sensitive that anytime a new food is introduced, she has a sensitivity with it until a few trys later. Does this even make any sense? We push through symptoms and then she is fine, tolerates the foods just fine.
My mind is constantly going back to the pear fail we had this summer. I should probably read the posts I wrote around that time to remind myself of what happened. I have been wondering, since she's ok with so many other fruits, if that was a coincidence of symptoms and if I would have pushed through, would she have been fine? I do remember how sick she was, I have a picture of my poor baby laying on the floor, so uncomfortable that even Mommy's arms weren't comforting enough for her. I can't figure this out and it makes me crazy! I really want to think that her only FPIES foods are the rice and oat, that she has a soy intolerance and a dairy allergy and then just go full board with everything else, but do I dare? That sounds easy enough but still, avoiding the dairy and soy is extremely hard by itself!
I think I'm going to give chicken a break for a few days and then trial it again to see if we can figure this out. I wish there was another way to know besides trial and error on everything!
Chicken seems to be going ok. Yesterday I wondered if we were going to have a fail but she seemed to eat well last night and then again for lunch and dinner tonight. There's so much gray area, when I wish it could be black and white. With the rice and oat reactions, they were definite, and serious enough for me to not even consider touching them with a 10 foot pole ever again! It seems like so many of our foods that we've trialed in the last six months have been the same pattern. Day One is ok, Day Two is questionable, and then a few more days of questionable symptoms that we push through until finally, she is back to normal again. I can't help but wonder if her body is just that sensitive that anytime a new food is introduced, she has a sensitivity with it until a few trys later. Does this even make any sense? We push through symptoms and then she is fine, tolerates the foods just fine.
My mind is constantly going back to the pear fail we had this summer. I should probably read the posts I wrote around that time to remind myself of what happened. I have been wondering, since she's ok with so many other fruits, if that was a coincidence of symptoms and if I would have pushed through, would she have been fine? I do remember how sick she was, I have a picture of my poor baby laying on the floor, so uncomfortable that even Mommy's arms weren't comforting enough for her. I can't figure this out and it makes me crazy! I really want to think that her only FPIES foods are the rice and oat, that she has a soy intolerance and a dairy allergy and then just go full board with everything else, but do I dare? That sounds easy enough but still, avoiding the dairy and soy is extremely hard by itself!
I think I'm going to give chicken a break for a few days and then trial it again to see if we can figure this out. I wish there was another way to know besides trial and error on everything!
Monday, January 17, 2011
Chicken!
I've been trying to start food trials again to add on to Kara's menu but she has not been eating well lately. It's hard to trial a food when she won't eat anything!!!
We got really brave one night last week while making supper and decided to trial (GASP!!!) CHICKEN! (Remember my turkey Thanksgiving post? No poultry...) It's on our "Common Trigger Foods" list on our fridge but she'd had it here and there before. This was all prior to us being anywhere near a baseline with her but I always sort of wondered if it'd work or not. Chicken is a staple in our house so it's been even more difficult to come up with meals lately and making a separate meal for Kara three times a day gets difficult. That's for a later post though...
So, we gave her a few bites, I think two nights in a row. It was hard telling her symptoms because we've been dealing with the effects of this cold that she's had too. In the chaos of our lives, we stopped it. I've been incredibly frustrated again at every meal lately. She.will.not.eat.anything.
Tonight I gave her some hamburger with ketchup in it, usually a favorite. She squealed in her chair and threw her spoon - hey, at least we've graduated from throwing entire plate when she's not happy with what's on her tray! I gave her some balls...I mean, peas. This usually goes over well - a good squish with her finger and then she picks each one up and eats it. She pushed this away and squealed. I put some jelly on some of her special bread. She smiled, took a bite and then was mad again. I had her sit at the table with us and Brian cooked up some chicken breasts we had in the fridge. I gave her a few bites of that (with the ketchup, of course!) and she ate them right up! She shocked me! The first challenge of a food challenge is always getting her to eat the food. She successfully had a good size serving of chicken tonight and loved it. I'm REALLY hoping that it loves her too!
We got really brave one night last week while making supper and decided to trial (GASP!!!) CHICKEN! (Remember my turkey Thanksgiving post? No poultry...) It's on our "Common Trigger Foods" list on our fridge but she'd had it here and there before. This was all prior to us being anywhere near a baseline with her but I always sort of wondered if it'd work or not. Chicken is a staple in our house so it's been even more difficult to come up with meals lately and making a separate meal for Kara three times a day gets difficult. That's for a later post though...
So, we gave her a few bites, I think two nights in a row. It was hard telling her symptoms because we've been dealing with the effects of this cold that she's had too. In the chaos of our lives, we stopped it. I've been incredibly frustrated again at every meal lately. She.will.not.eat.anything.
Tonight I gave her some hamburger with ketchup in it, usually a favorite. She squealed in her chair and threw her spoon - hey, at least we've graduated from throwing entire plate when she's not happy with what's on her tray! I gave her some balls...I mean, peas. This usually goes over well - a good squish with her finger and then she picks each one up and eats it. She pushed this away and squealed. I put some jelly on some of her special bread. She smiled, took a bite and then was mad again. I had her sit at the table with us and Brian cooked up some chicken breasts we had in the fridge. I gave her a few bites of that (with the ketchup, of course!) and she ate them right up! She shocked me! The first challenge of a food challenge is always getting her to eat the food. She successfully had a good size serving of chicken tonight and loved it. I'm REALLY hoping that it loves her too!
Wednesday, August 11, 2010
What Do We Do?
I'm at a loss as to what to do with Kara. I'm going to call the GI doctor tomorrow. At this point, nothing is working and it's so tough to just NOT feed her the food that she wants. She knows she's missing out and she's miserable. It's heart breaking having to sneak bites of food around her because if she catches you eating, she'll want some too. It's heart breaking to have to tell your three year old she can't have something because Kara can't have it. It's heart breaking having your baby cry and cry and not be able to soothe her even though you know what's wrong.
We went to carrots today because I was almost positive those were going to be a safe food after doing 4(?) 5(?) days of apples and not having a definite yes or no. She had a horrible, horrible diaper tonight. As some know, we are in the process of gutting our kitchen, so I had the girls upstairs playing. Brenna came downstairs and said "Mom, Kara's really fussy and wiggling her butt. I think she pooped." I knew what this meant so I ran upstairs, grabbed her and yelled for Brian to meet me to help out. I laid her down and she was already screaming. I cleaned her up as he held her hands and tried to comfort her. Her butt was so raw it was bleeding. It happened that fast. This diaper also had undigested food in it, again - this is a problem I've been noticing more and more lately and I'm not sure what to think about it. They were steamed carrots, it's not like it was corn, or anything raw!
She was so fussy, pretty much from the time I got her home from daycare. She just cried and cried. I was trying to pack bags up for us to move to the in-laws for a few days since our house is a disaster area right now but Kara wasn't allowing that. I tried to rock her, she cried, I tried to feed her some plain barley with Neocate and she cried, it didn't seem to matter what I did. I finally left, figuring I'd run home later and get what I needed. We gave the girls baths tonight and Kara was so excited to have her bath at Grandma's house. I stood her up in the tub, waiting for her to sit down. She cautiously did and she slowly sat down but the minute her little butt hit the water it was instant tears. She kept trying but you could tell that it was so painful. I just want to cry right along with her as she's going through all of this.
At this point I don't know if this is FPIES or if she has something else going on in her digestive system. Hopefully the GI Dr has some sort of answer for us, or will want us back down there to do some more testing. I sent in her occult blood test yesterday, they'll test it tomorrow and then I suppose we'll wait for the Dr to get back to us with the results. I'm not sure what the heck else to do.
We went to carrots today because I was almost positive those were going to be a safe food after doing 4(?) 5(?) days of apples and not having a definite yes or no. She had a horrible, horrible diaper tonight. As some know, we are in the process of gutting our kitchen, so I had the girls upstairs playing. Brenna came downstairs and said "Mom, Kara's really fussy and wiggling her butt. I think she pooped." I knew what this meant so I ran upstairs, grabbed her and yelled for Brian to meet me to help out. I laid her down and she was already screaming. I cleaned her up as he held her hands and tried to comfort her. Her butt was so raw it was bleeding. It happened that fast. This diaper also had undigested food in it, again - this is a problem I've been noticing more and more lately and I'm not sure what to think about it. They were steamed carrots, it's not like it was corn, or anything raw!
She was so fussy, pretty much from the time I got her home from daycare. She just cried and cried. I was trying to pack bags up for us to move to the in-laws for a few days since our house is a disaster area right now but Kara wasn't allowing that. I tried to rock her, she cried, I tried to feed her some plain barley with Neocate and she cried, it didn't seem to matter what I did. I finally left, figuring I'd run home later and get what I needed. We gave the girls baths tonight and Kara was so excited to have her bath at Grandma's house. I stood her up in the tub, waiting for her to sit down. She cautiously did and she slowly sat down but the minute her little butt hit the water it was instant tears. She kept trying but you could tell that it was so painful. I just want to cry right along with her as she's going through all of this.
At this point I don't know if this is FPIES or if she has something else going on in her digestive system. Hopefully the GI Dr has some sort of answer for us, or will want us back down there to do some more testing. I sent in her occult blood test yesterday, they'll test it tomorrow and then I suppose we'll wait for the Dr to get back to us with the results. I'm not sure what the heck else to do.
Friday, August 6, 2010
Gastro Appointment
Wow, what a day, but a good one at that.
We got to CentraCare and got checked in, but we were 20 minutes early. Perfect time for Kara to run around after our car ride. The nurse came out and asked for Kara's parents. Uh-oh. I thought "if they think they are sending us home for any reason, they are CRAZY!" She said Dr. S. was running far behind, she had a patient that was taking them quite a bit longer than anticipated. We joked that she'd be running even later after seeing us! She suggested we run and get a bite to eat which was no problem, our appt was at 11:2o and we hadn't eaten yet, so we ran to the deli at the clinic. Shortly after, we were called. On our way into the exam room, Brian said the doctor poked her head out and apologized for running late. Wow. At the time we were roomed, it was only 20 minutes later than our appt time was! The nurse did her thing and within minutes Dr. S. was in to see us. She walked in, again apologizing and Brian joked with her - "no problem, as long as you give us some answers with our daughter!" She couldn't promise us that! :)
Have I ever mentioned how impressed I am with this place? We have had nothing but good experiences here so far! Dr. S. started by asking us why we were here. After a week of that question going through my head, I answered her by saying "Kara has been recently diagnosed with FPIES after months of questioning. We are struggling with this and she's still not "right" so I guess I'd like to start all over and see what we come up with." With that, she listened to our story and asked questions as needed.
Some of the questions were really hard to answer since it's all about her random reactions that we can't figure out the trigger for. (this is going to get kind of icky but what do you expect, it's a blog about digestive problems and a visit to the gastroenterologist!) We were asked specific questions about her dirty diapers. I explained that in the last few days, I realized that I should really be LOOKING at them to make sure things are ok. All I could think about was getting her arms held down by my legs as I change her as quickly as possible, get medicine on her bottom and keep her hands out of there! I told her it's quite a task that normally takes two people to complete! She understood this completely. I told her the smell of these diapers is disgusting and "not right". I told the story of a night not too long ago that I got to the bottom of the stairs to rescue my screaming baby and could smell it from there. After some review, she decided to do the 3 day test for blood in her stool and go from there.
After much discussion and a brief, painless examination, she decided that we are going to start at square one with Kara. Basically, we have no clue what is causing these random reactions. She's now on day 3 of good days but what was it - the chicken? the peas? the beans? something completely random each time? We haven't had good control over this because of the lack of direction. It seems so simple and it's definitely been on my mind this week - Start over - let's just do the formula and see if we can get things under control. I've read about "baseline" in other blogs and message boards and now that we got some direction from the doctor, I'm thinking that's what this means. We are to make three lists. The YES list, the NO list and the MAYBE list. To begin with, the NO list is the rice, oat and dairy. The foods that she's had the shock reaction to, and the dairy being an IgE allergy for her. We are struggling with the YES list. So far I have barley, bananas and neocate on it. The rest I'm up in the air. There are a lot of maybes that I think would be a yes but we better leave them in that maybe column for now. I've been questioning apples - something she's had often but she's also had icky diapers often. She's had beef and pork recently and done decent on it but is it an actual YES? Some of these reactions don't happen until the 3rd, even 4th time of having them. Maybe we'd be better off doing the barley with Neocate and starting there. Either way, this is NOT going to be fun because she knows when she's missing out. I feel like to be fair, we need to not eat anything in front of her. Does she know the difference? It's so tough!
Dr. S. explained that FPIES is a fairly new diagnosis in the last few years, and basically a term for multiple food allergies for now. She's not going to put this dx on Kara quite yet. In doing these food challenges we are going to find out if it's reactions or if she has something completely different all together, or on top of the FPIES. Because of her textbook reactions to the rice and oat, I'm pretty sure she does have the FPIES but the fact that we can't get her back to "normal" (whatever that is) is making us question other things as well. We go back to see the doctor in one month. If we have any problems or are not having success with any foods that we challenge, we will see her before then at the U. If anything comes out of the stool test, we'll be seen sooner as well. We talked about scoping her and at this point she wants to see what happens with the food challenges but if the blood test comes back positive then she'll be scoped right away, the same if we continue having problems.
I asked her what she thought about the chicken, peas and beans. Should those be in the NO column or can we put those in the maybe since we don't know which one it is? She said we can put them in the maybe but at the bottom. (if we ever get to the bottom!) She said the same thing with eggs, since she's only had those the one time. Put them towards the bottom and just be really cautious with them - maybe just give her a half of an egg to see what happens.
All in all, I was very pleased and felt good leaving there. We have a long month in front of us with these food challenges but we'll do what it takes to get some answers for Kara. She's calling me from her crib - it's 8:30 and she's just waking up. Yesterday must have been a long day for her!
We got to CentraCare and got checked in, but we were 20 minutes early. Perfect time for Kara to run around after our car ride. The nurse came out and asked for Kara's parents. Uh-oh. I thought "if they think they are sending us home for any reason, they are CRAZY!" She said Dr. S. was running far behind, she had a patient that was taking them quite a bit longer than anticipated. We joked that she'd be running even later after seeing us! She suggested we run and get a bite to eat which was no problem, our appt was at 11:2o and we hadn't eaten yet, so we ran to the deli at the clinic. Shortly after, we were called. On our way into the exam room, Brian said the doctor poked her head out and apologized for running late. Wow. At the time we were roomed, it was only 20 minutes later than our appt time was! The nurse did her thing and within minutes Dr. S. was in to see us. She walked in, again apologizing and Brian joked with her - "no problem, as long as you give us some answers with our daughter!" She couldn't promise us that! :)
Have I ever mentioned how impressed I am with this place? We have had nothing but good experiences here so far! Dr. S. started by asking us why we were here. After a week of that question going through my head, I answered her by saying "Kara has been recently diagnosed with FPIES after months of questioning. We are struggling with this and she's still not "right" so I guess I'd like to start all over and see what we come up with." With that, she listened to our story and asked questions as needed.
Some of the questions were really hard to answer since it's all about her random reactions that we can't figure out the trigger for. (this is going to get kind of icky but what do you expect, it's a blog about digestive problems and a visit to the gastroenterologist!) We were asked specific questions about her dirty diapers. I explained that in the last few days, I realized that I should really be LOOKING at them to make sure things are ok. All I could think about was getting her arms held down by my legs as I change her as quickly as possible, get medicine on her bottom and keep her hands out of there! I told her it's quite a task that normally takes two people to complete! She understood this completely. I told her the smell of these diapers is disgusting and "not right". I told the story of a night not too long ago that I got to the bottom of the stairs to rescue my screaming baby and could smell it from there. After some review, she decided to do the 3 day test for blood in her stool and go from there.
After much discussion and a brief, painless examination, she decided that we are going to start at square one with Kara. Basically, we have no clue what is causing these random reactions. She's now on day 3 of good days but what was it - the chicken? the peas? the beans? something completely random each time? We haven't had good control over this because of the lack of direction. It seems so simple and it's definitely been on my mind this week - Start over - let's just do the formula and see if we can get things under control. I've read about "baseline" in other blogs and message boards and now that we got some direction from the doctor, I'm thinking that's what this means. We are to make three lists. The YES list, the NO list and the MAYBE list. To begin with, the NO list is the rice, oat and dairy. The foods that she's had the shock reaction to, and the dairy being an IgE allergy for her. We are struggling with the YES list. So far I have barley, bananas and neocate on it. The rest I'm up in the air. There are a lot of maybes that I think would be a yes but we better leave them in that maybe column for now. I've been questioning apples - something she's had often but she's also had icky diapers often. She's had beef and pork recently and done decent on it but is it an actual YES? Some of these reactions don't happen until the 3rd, even 4th time of having them. Maybe we'd be better off doing the barley with Neocate and starting there. Either way, this is NOT going to be fun because she knows when she's missing out. I feel like to be fair, we need to not eat anything in front of her. Does she know the difference? It's so tough!
Dr. S. explained that FPIES is a fairly new diagnosis in the last few years, and basically a term for multiple food allergies for now. She's not going to put this dx on Kara quite yet. In doing these food challenges we are going to find out if it's reactions or if she has something completely different all together, or on top of the FPIES. Because of her textbook reactions to the rice and oat, I'm pretty sure she does have the FPIES but the fact that we can't get her back to "normal" (whatever that is) is making us question other things as well. We go back to see the doctor in one month. If we have any problems or are not having success with any foods that we challenge, we will see her before then at the U. If anything comes out of the stool test, we'll be seen sooner as well. We talked about scoping her and at this point she wants to see what happens with the food challenges but if the blood test comes back positive then she'll be scoped right away, the same if we continue having problems.
I asked her what she thought about the chicken, peas and beans. Should those be in the NO column or can we put those in the maybe since we don't know which one it is? She said we can put them in the maybe but at the bottom. (if we ever get to the bottom!) She said the same thing with eggs, since she's only had those the one time. Put them towards the bottom and just be really cautious with them - maybe just give her a half of an egg to see what happens.
All in all, I was very pleased and felt good leaving there. We have a long month in front of us with these food challenges but we'll do what it takes to get some answers for Kara. She's calling me from her crib - it's 8:30 and she's just waking up. Yesterday must have been a long day for her!
Wednesday, August 4, 2010
Obsessed
I am becoming obsessed with finding answers for Kara. It's all I think about all day, every day. I'm brainstorming, trying to get to the bottom of what's causing her reactions, and trying to put things together based on other Mom's experiences. I walk in the door from work lately and go straight to the computer and catch up on the FPIES blogs that I follow, check the message boards on the FPIES group that I belong to now and do my facebook thing in between. I hop on the computer every free second that I have, doing new google searches for updated info. I feel like I'm constantly learning yet coming up with nothing. I know my obsession gets frustrating to my family but I am determined to make things right for Kara and feel that I just can't do enough to care for her properly. Everything else is going to have to wait. I'm exhausted yet my mind is running a million miles an hour and I won't stop until we get things figured out for her.
Kara seems to be having a decent week, despite the mommy meltdowns earlier this week. She's actually had a good last two days and I say that hesitantly because two days is about the maximum amount of time that we get for good days with her. She wouldn't drink her bottle last night so I worried about a tummy ache. She was up in the night for quite a while and refused her bottle so I was worried about a tummy ache. She got up this morning and refused her bottle again, so again, I worried about a tummy ache. I brought her to daycare stating she wasn't acting quite right so call me if there are any problems. Kara had a great day, Mommy overreacted. (Go figure!) Tonight she wouldn't eat supper. I caved and gave her a few crackers because I figured it was better than nothing. She drank 4 ounces of a bottle and that was it. I'm nervous something is going on, or starting but I'm trying to stay optimistic. Friday can't get here soon enough!
Kara seems to be having a decent week, despite the mommy meltdowns earlier this week. She's actually had a good last two days and I say that hesitantly because two days is about the maximum amount of time that we get for good days with her. She wouldn't drink her bottle last night so I worried about a tummy ache. She was up in the night for quite a while and refused her bottle so I was worried about a tummy ache. She got up this morning and refused her bottle again, so again, I worried about a tummy ache. I brought her to daycare stating she wasn't acting quite right so call me if there are any problems. Kara had a great day, Mommy overreacted. (Go figure!) Tonight she wouldn't eat supper. I caved and gave her a few crackers because I figured it was better than nothing. She drank 4 ounces of a bottle and that was it. I'm nervous something is going on, or starting but I'm trying to stay optimistic. Friday can't get here soon enough!
Tuesday, August 3, 2010
Better Day!
This afternoon I got a phone call at work from the nurse from the U. She asked me a few questions about Kara, when and where we are being seen and then told me that Kara is seeing the best. She explained that FPIES is a pretty new diagnosis but there are many other things with very similar symptoms that they've treated. She said that this doctor is definitely a good match for what we are dealing with, with Kara. I was overjoyed to hear this! Maybe this will finally be the answer we've been waiting for!
She asked if I had any info about Kara and I explained that I have all of her records from birth. She requested that I fax them to her so she can review them for pertinent information and go over what I had told her with the doctor before we go for our appointment so the doctor will have a better idea of what we are going there for. I got these faxed this evening, all 79 pages of it. I was going through it to see what was pertinent in those 79 pages and each page had something about vomiting, diarrhea, fever, not eating, eczema. I guess everything is!
I got home and filled out the paperwork on family history and concerns that we are to bring with us. My spirits are lifted now and I'm anxious for Friday. Of course, I hung up the phone and felt like I was going to cry again, but this time it was happy tears. I'm praying that we get more answers Friday and this emotional roller coaster will stop, or at least slow down a little bit!
She asked if I had any info about Kara and I explained that I have all of her records from birth. She requested that I fax them to her so she can review them for pertinent information and go over what I had told her with the doctor before we go for our appointment so the doctor will have a better idea of what we are going there for. I got these faxed this evening, all 79 pages of it. I was going through it to see what was pertinent in those 79 pages and each page had something about vomiting, diarrhea, fever, not eating, eczema. I guess everything is!
I got home and filled out the paperwork on family history and concerns that we are to bring with us. My spirits are lifted now and I'm anxious for Friday. Of course, I hung up the phone and felt like I was going to cry again, but this time it was happy tears. I'm praying that we get more answers Friday and this emotional roller coaster will stop, or at least slow down a little bit!
Monday, August 2, 2010
Bad Day!
Today was a bad day. There's no other way to sum things up. Kara has continued to have nasty diapers despite the increase in her forbidden foods. Yesterday we struggled and last night she was inconsolable - she'd lay in arms and scream, I'd put her on the floor, she'd scream, it was just down right awful. Luckily we finally got her to bed shortly before ten and she slept until about 2:30 when she got up for a quick bottle. Have I ever mentioned that I feel like I still have a newborn sometimes? :)
I couldn't sleep last night. Kara and her care ran through my head all night long and it just frustrated me. I couldn't seem to shut anything off. That made for a really rough morning being so stressed out and over tired. We had our typical Monday morning rush of waking up the girls and getting out the door by 7:15. I'm not sure what triggered everything else but I couldn't function once I got to work. I continued thinking about Kara, how nothing has changed, how we still have 5 days til she sees the specialist. I was so tired and it showed. At one point, a friend stopped me on my way to my desk to ask how Kara was doing. I started to talk and then just said I couldn't right now, I was going to lose it. I went to my desk and my eyes welled up with tears. This happened so many times to me today. I finally finished up what needed to be done and left the office at 12:30, at which point I HAD lost it. I had way too much on my mind and phone calls that needed to be made. I left work, not sure what direction to go, home, or for a drive. I called Brian to tell him I was coming home and I lost it. It doesn't seem to matter HOW hard I try to do things right for Kara, we just can't seem to manage to get her symptoms under control. Our allergist wants to see her again in three months. THREE MONTHS. What the heck are we supposed to do for that time? Hope that the GI can figure her out? in THREE MONTHS she'll be EIGHTEEN MONTHS. At what point in this awful "thing" do they really start to worry? I keep thinking that it's not right how they just let us be on our way. What do parents do that aren't knowledgeable, that don't have the support systems that we have? I spend every spare second of my life researching on the internet, reading blogs, reading message boards, trying to figure SOMETHING out that can help my poor baby. How do babies survive when they don't have this group behind them? If I were to play totally dumb, would there be more help for us? There is something wrong here.
I went home, waterworks and all. I decided to get my ipod, hop on the lawn mower and relax. For some strange reason, I LOVE mowing the lawn! It's my therapy! I think it's because it's my alone time, I mow part of our field and jam out to my favorite songs. Brian had one request and that's that I don't sing along. Apparently I've gotten some strange looks belting out the tunes! I let my mind clear, let my eyes clear and then went back inside to tackle my obstacles for the day.
I called the insurance company again to request a case manager. I was questioned quite a bit, put on hold and then the lady came back on and asked me a ton of questions, again, like last time where I'm having to explain everything. THIS is why I want a case manager. ONE person to deal with, who is familiar with our needs instead of having to start over each time I have a question. I held back my tears as I went through our story, my frustrations, and found out that we CAN have a second opinion, we CAN go to any of the "big" hospitals - Children's, the U, Mayo, all of which I figured but wanted to be sure. I was mostly worried about being disappointed again from gastro and wanting to see someone else, only to find out that we aren't able to. They are going to review our case again and I'll hopefully be getting a phone call letting us know they are going to assign one person to us. My fingers are crossed but my hopes aren't that high.
Next I called Fairview GI, the clinic through the U's Children's hospital. (I think, this is all so confusing which group practices at which hospital!) I was able to get to the GI nurses voicemail and left a message. I asked if our doctor that we are seeing on Friday KNOWS about FPIES, and if there are any other GI's in their group that do know about it or see patients because we've really been struggling and if there's someone specific we can see, I'd rather do it that way instead of screwing around the way we have been. I really hope they call me back tomorrow as well. I got off the phone, again, started crying.
What a day this has been. I don't feel good, I'm stressed out, overtired yet can't sleep. Friday's appointment can't come soon enough. I just hope we can start to get somewhere because I'm not sure I can handle too many more obstacles without something positive coming up, first! I'm not quite sure how I'm going to tackle tomorrow either, other than jump right in and hope for the best! Maybe Kara will have whatever "it" was again, out of her system and we'll slide nice and easy through the rest of our week. That would sure be nice.
I couldn't sleep last night. Kara and her care ran through my head all night long and it just frustrated me. I couldn't seem to shut anything off. That made for a really rough morning being so stressed out and over tired. We had our typical Monday morning rush of waking up the girls and getting out the door by 7:15. I'm not sure what triggered everything else but I couldn't function once I got to work. I continued thinking about Kara, how nothing has changed, how we still have 5 days til she sees the specialist. I was so tired and it showed. At one point, a friend stopped me on my way to my desk to ask how Kara was doing. I started to talk and then just said I couldn't right now, I was going to lose it. I went to my desk and my eyes welled up with tears. This happened so many times to me today. I finally finished up what needed to be done and left the office at 12:30, at which point I HAD lost it. I had way too much on my mind and phone calls that needed to be made. I left work, not sure what direction to go, home, or for a drive. I called Brian to tell him I was coming home and I lost it. It doesn't seem to matter HOW hard I try to do things right for Kara, we just can't seem to manage to get her symptoms under control. Our allergist wants to see her again in three months. THREE MONTHS. What the heck are we supposed to do for that time? Hope that the GI can figure her out? in THREE MONTHS she'll be EIGHTEEN MONTHS. At what point in this awful "thing" do they really start to worry? I keep thinking that it's not right how they just let us be on our way. What do parents do that aren't knowledgeable, that don't have the support systems that we have? I spend every spare second of my life researching on the internet, reading blogs, reading message boards, trying to figure SOMETHING out that can help my poor baby. How do babies survive when they don't have this group behind them? If I were to play totally dumb, would there be more help for us? There is something wrong here.
I went home, waterworks and all. I decided to get my ipod, hop on the lawn mower and relax. For some strange reason, I LOVE mowing the lawn! It's my therapy! I think it's because it's my alone time, I mow part of our field and jam out to my favorite songs. Brian had one request and that's that I don't sing along. Apparently I've gotten some strange looks belting out the tunes! I let my mind clear, let my eyes clear and then went back inside to tackle my obstacles for the day.
I called the insurance company again to request a case manager. I was questioned quite a bit, put on hold and then the lady came back on and asked me a ton of questions, again, like last time where I'm having to explain everything. THIS is why I want a case manager. ONE person to deal with, who is familiar with our needs instead of having to start over each time I have a question. I held back my tears as I went through our story, my frustrations, and found out that we CAN have a second opinion, we CAN go to any of the "big" hospitals - Children's, the U, Mayo, all of which I figured but wanted to be sure. I was mostly worried about being disappointed again from gastro and wanting to see someone else, only to find out that we aren't able to. They are going to review our case again and I'll hopefully be getting a phone call letting us know they are going to assign one person to us. My fingers are crossed but my hopes aren't that high.
Next I called Fairview GI, the clinic through the U's Children's hospital. (I think, this is all so confusing which group practices at which hospital!) I was able to get to the GI nurses voicemail and left a message. I asked if our doctor that we are seeing on Friday KNOWS about FPIES, and if there are any other GI's in their group that do know about it or see patients because we've really been struggling and if there's someone specific we can see, I'd rather do it that way instead of screwing around the way we have been. I really hope they call me back tomorrow as well. I got off the phone, again, started crying.
What a day this has been. I don't feel good, I'm stressed out, overtired yet can't sleep. Friday's appointment can't come soon enough. I just hope we can start to get somewhere because I'm not sure I can handle too many more obstacles without something positive coming up, first! I'm not quite sure how I'm going to tackle tomorrow either, other than jump right in and hope for the best! Maybe Kara will have whatever "it" was again, out of her system and we'll slide nice and easy through the rest of our week. That would sure be nice.
Thursday, July 29, 2010
Allergist Appointment # 2
I don't even know where to start this after our appointment today. I feel like we are moving backwards in our journey with Kara.
We talked on our way to St. Cloud today and added to our list of questions that we had for the doctor. I was incredibly nervous for this appointment, probably because I felt like we were going to come home with no more knowledge than we already had.
Addressing Kara's many episodes of diarrhea and "nasty" diapers: let's test her for more foods than we've already tested her for by doing the skin prick test. He took the can of vegetable soup that I brought (the one she possible broke out in hives from), reviewed that and tested her for potato, beans, peas, carrots, along with many more. They all came up negative for an IgE allergy. More on the allergy test in another post - that deserves a post of it's own...
Addressing the possible asthma: skin prick tests for molds, dusts, cats, dogs, and a few grasses, I believe. All came up negative. He said at this point we can discontinue the pulmicort nebs and just use the albuterol as needed. We'll follow up with this, especially if it seems that we're needing the albuterol. He wants to see what her coughing is doing and we're taking things one thing at a time. We went over my seasonal and animal allergies and the fact that Kara was hospitalized with RSV in February and figure that she WILL end up with them but first things first, we need to get this digestive stuff figured out. For now we're leaving the asthma dx as a possible one. Whew.
We went over the few "reactions" that she's had that we are questioning blaming chicken on and we're trying to get to the bottom of all of this. What he decided is that we are going to remove a few more foods from her diet. She is now restricted from chicken, peas, beans and other legumes. Peas just happen to be her favorite vegetable. We also have to restrict sorbitol, a sweetener found in some foods as this is known to cause diarrhea in people. He also said he wanted to restrict barley and I gasped. Barley is the ONE food that Kara has been eating since our first trip to the gastro, last January. She's tolerated it just fine, to our knowledge, and no FPIES reactions have occured from this, from what I've been able to tell. I stopped him and explained all of this and he decided we could keep going with the barley.
I asked about skin patch testing and he said no, they don't do that there. Besides, Kara's eczema gets so bad that it probably wouldn't be accurate. It didn't sound like he was real fond of this test. I also asked about food challenges, he said these are done in the clinic, around 2 or 3 years. I asked if he thought gastro would still be a good idea and he said definitely, it would be good to get another opinion. (good thing, because I have appointments with 2 different gastros still!)
So, we left there with a bunch of "no's" but we are restricting more. I don't feel like we are headed in the right direction, but this is the name of the game, I guess. It's all trial and error to see what works. There's no real medical "test" that can be run for a positive with FPIES. It just adds to my frustrations. Now we just sit and wait again. Wait for the appointment in the cities, and hope that we don't get the same amount of nothing again. I want to know if there are ANY doctors in the state of MN that KNOW about FPIES. Like, really KNOW about it. I may be on the phone all day long tomorrow if I have to, to get some answers.
We talked on our way to St. Cloud today and added to our list of questions that we had for the doctor. I was incredibly nervous for this appointment, probably because I felt like we were going to come home with no more knowledge than we already had.
Addressing Kara's many episodes of diarrhea and "nasty" diapers: let's test her for more foods than we've already tested her for by doing the skin prick test. He took the can of vegetable soup that I brought (the one she possible broke out in hives from), reviewed that and tested her for potato, beans, peas, carrots, along with many more. They all came up negative for an IgE allergy. More on the allergy test in another post - that deserves a post of it's own...
Addressing the possible asthma: skin prick tests for molds, dusts, cats, dogs, and a few grasses, I believe. All came up negative. He said at this point we can discontinue the pulmicort nebs and just use the albuterol as needed. We'll follow up with this, especially if it seems that we're needing the albuterol. He wants to see what her coughing is doing and we're taking things one thing at a time. We went over my seasonal and animal allergies and the fact that Kara was hospitalized with RSV in February and figure that she WILL end up with them but first things first, we need to get this digestive stuff figured out. For now we're leaving the asthma dx as a possible one. Whew.
We went over the few "reactions" that she's had that we are questioning blaming chicken on and we're trying to get to the bottom of all of this. What he decided is that we are going to remove a few more foods from her diet. She is now restricted from chicken, peas, beans and other legumes. Peas just happen to be her favorite vegetable. We also have to restrict sorbitol, a sweetener found in some foods as this is known to cause diarrhea in people. He also said he wanted to restrict barley and I gasped. Barley is the ONE food that Kara has been eating since our first trip to the gastro, last January. She's tolerated it just fine, to our knowledge, and no FPIES reactions have occured from this, from what I've been able to tell. I stopped him and explained all of this and he decided we could keep going with the barley.
I asked about skin patch testing and he said no, they don't do that there. Besides, Kara's eczema gets so bad that it probably wouldn't be accurate. It didn't sound like he was real fond of this test. I also asked about food challenges, he said these are done in the clinic, around 2 or 3 years. I asked if he thought gastro would still be a good idea and he said definitely, it would be good to get another opinion. (good thing, because I have appointments with 2 different gastros still!)
So, we left there with a bunch of "no's" but we are restricting more. I don't feel like we are headed in the right direction, but this is the name of the game, I guess. It's all trial and error to see what works. There's no real medical "test" that can be run for a positive with FPIES. It just adds to my frustrations. Now we just sit and wait again. Wait for the appointment in the cities, and hope that we don't get the same amount of nothing again. I want to know if there are ANY doctors in the state of MN that KNOW about FPIES. Like, really KNOW about it. I may be on the phone all day long tomorrow if I have to, to get some answers.
Wednesday, July 28, 2010
Update
Kara seemed to snap back to her regular self about as quickly as things started so by yesterday morning she was completely over "it". Whatever "it" was that got to her in the first place, we may never know.
She has her follow up appointment with the allergist tomorrow afternoon and I'm SOOO anxious for this appointment. I feel crazy for being so anxious about it. It's going to be a long morning at work and a long drive to St. Cloud at the rate things are going for me. I have a page of questions this time for the doctor and have done a lot more research since we saw him last 4 (!) weeks ago already! I've found that other Mommy of FPIES Babies blogs are the most informative. From what I've read based on other Mom's experiences, I'd say Kara is probably about the middle as far as severity goes but we are just beginning this diagnosis. Who knows what the future has in store for her. I've also signed on to a community message board at babycenter.com and there is a group especially for FPIES. I started this last night so I'm asking lots of questions and hoping for answers, and also to give my advice based on what we've experienced. It's nice knowing there are others out there experiencing very similar situations to what we've experienced!
I gathered all of Kara's medical records today from the hospital and the clinic. I was smart this time and got copies for myself as well and will file them all together so I don't have to keep doing this over and over again. It's also a nice refresher to look back on to see when things happened and how they happened, as well as keep track of her weight ups and downs. I'm trying to get more organized hoping it will make things easier for me because this has been consuming my life lately!
I'll update as soon as I can after Kara's appointment tomorrow.
She has her follow up appointment with the allergist tomorrow afternoon and I'm SOOO anxious for this appointment. I feel crazy for being so anxious about it. It's going to be a long morning at work and a long drive to St. Cloud at the rate things are going for me. I have a page of questions this time for the doctor and have done a lot more research since we saw him last 4 (!) weeks ago already! I've found that other Mommy of FPIES Babies blogs are the most informative. From what I've read based on other Mom's experiences, I'd say Kara is probably about the middle as far as severity goes but we are just beginning this diagnosis. Who knows what the future has in store for her. I've also signed on to a community message board at babycenter.com and there is a group especially for FPIES. I started this last night so I'm asking lots of questions and hoping for answers, and also to give my advice based on what we've experienced. It's nice knowing there are others out there experiencing very similar situations to what we've experienced!
I gathered all of Kara's medical records today from the hospital and the clinic. I was smart this time and got copies for myself as well and will file them all together so I don't have to keep doing this over and over again. It's also a nice refresher to look back on to see when things happened and how they happened, as well as keep track of her weight ups and downs. I'm trying to get more organized hoping it will make things easier for me because this has been consuming my life lately!
I'll update as soon as I can after Kara's appointment tomorrow.
Sunday, July 25, 2010
Week Wrap-Up
We have been on a nice, even keel for the past few days with Kara, nothing major has happened. There is something that she's been having that bothers her once in a while but I can't, for the life of me, figure it out. She's been having really icky diapers a few times a day that literally BURN her bottom, even though she gets changed immediately after. I don't know if it's too much fruit, a certain vegetable, something in a cracker that she's gotten, no clue. It's frustrating but it's minor compared to what we've gone through with her in the past.
We have her one month follow up with the pediatric allergist on Thursday down in St. Cloud. I'm really anxious for this appointment and it's the start of a busy four weeks for appointments for her. It's hard to believe the changes we've gone through in this last month. It's been life changing!!!
One thing that we need to talk to the allergist about is Kara's possible asthma. Her nebs are doing wonders and as much as I'd like to think she does not have it, I'm pretty sure that she does. I'm really hoping that he'll run the other environmental and animal scratch tests too so we can have answers to that before it becomes a problem. He had mentioned that we'll be following up with a gastroenterologist but we're one step ahead and already have those appointments made.
One thing that we did this weekend is tried eggs with Kara. I was SO incredibly nervous to give her them but knew we needed to - if that was something she could tolerate it would open up some more options on feeding my babe. After a negative blood test and scratch test for the egg allergy, I decided it was time I try it but I was still so nervous about an FPIES reaction. I mixed the egg up with some of her formula and scrambled it up, it worked out pretty well! Kara loved it, eating almost the entire egg. I watched her like a hawk for the first few hours waiting for something to happen and nothing did! Yay! She has a new food she can eat!!!
That's about it for what's been going on lately, other than three beautiful days at the lake. We are ready to take on what this week has in store for us and like I said, anxious for Thursday's big appointment. I'll keep you updated! :)
Wednesday, July 14, 2010
An Answer!
On July 1st, we finally managed to get some answers!
Kara saw a pediatric allergist at St. Cloud CentraCare Specialty Center. My Mom came with Kara and I to this appointment because Brian was unable to. The doctor we saw was the answer to our prayers after our experience at MN Gastro, he was an older gentleman who came in the room and LISTENED to us. I explained how we went to see the gastro doctor in January and everything that we went through there. Kara played on the floor as he listened to everything of what we've gone through with Kara. Kara sat so nice as he checked her all over and asked us additional questions. He decided that he wanted to do the scratch allergy test on her back for rice, oat, dairy, soy, peanut, egg, and a few others. I think Kara had 12 pokes on her back total. She had one nice big hive other than the control, only to the dairy. No rice, no oat, once again. Huh.
The doctor came back in after the testing was done and told us he believes that Kara has two things going on. One is a definate dairy allergy. The other is FPIES. We finally had a diagnosis, and one that we had been questioning for SIX months, since our gastro doctor told us that she DIDN'T have it. We went over a plan of what we could and couldn't give her. We definitely needed to stay away from all products with rice and oat in them as the reactions that she'd had put her into shock. As for the soy and dairy we were OK to do trial and error to see the severity hoping she could handle foods with lower amounts of dairy and soy in them. We were told that the epi pens are going to be no good for the kind of reactions that she has and if she were to have an FPIES reaction, she'd need IV fluids before she got too dehydrated. We briefly talked about Kara being on Neocate and he thought she could maybe handle Nutramigen so they sent us home with samples of that to try.
I left this appointment breathing a HUGE sigh of relief. It was so amazing to finally have some answers to what has been going on with my baby. I was overjoyed yet I had to remind myself that what we are dealing with is very serious. At the same time I was angry. We had six months of struggling with Kara, all because the doctor we had seen in January didn't listen to us.
Kara saw a pediatric allergist at St. Cloud CentraCare Specialty Center. My Mom came with Kara and I to this appointment because Brian was unable to. The doctor we saw was the answer to our prayers after our experience at MN Gastro, he was an older gentleman who came in the room and LISTENED to us. I explained how we went to see the gastro doctor in January and everything that we went through there. Kara played on the floor as he listened to everything of what we've gone through with Kara. Kara sat so nice as he checked her all over and asked us additional questions. He decided that he wanted to do the scratch allergy test on her back for rice, oat, dairy, soy, peanut, egg, and a few others. I think Kara had 12 pokes on her back total. She had one nice big hive other than the control, only to the dairy. No rice, no oat, once again. Huh.
The doctor came back in after the testing was done and told us he believes that Kara has two things going on. One is a definate dairy allergy. The other is FPIES. We finally had a diagnosis, and one that we had been questioning for SIX months, since our gastro doctor told us that she DIDN'T have it. We went over a plan of what we could and couldn't give her. We definitely needed to stay away from all products with rice and oat in them as the reactions that she'd had put her into shock. As for the soy and dairy we were OK to do trial and error to see the severity hoping she could handle foods with lower amounts of dairy and soy in them. We were told that the epi pens are going to be no good for the kind of reactions that she has and if she were to have an FPIES reaction, she'd need IV fluids before she got too dehydrated. We briefly talked about Kara being on Neocate and he thought she could maybe handle Nutramigen so they sent us home with samples of that to try.
I left this appointment breathing a HUGE sigh of relief. It was so amazing to finally have some answers to what has been going on with my baby. I was overjoyed yet I had to remind myself that what we are dealing with is very serious. At the same time I was angry. We had six months of struggling with Kara, all because the doctor we had seen in January didn't listen to us.
Friday, July 2, 2010
The Gastro Trip
Back in January we made our first visit to the pediatric gastroenterologist at MN Gastro. Kara was almost 8 months old.
It is important to note that prior to Kara's two failed attempts with rice cereal, one failed attempt with oat cereal, and a few times of trying (wheat) biter biscuits, she only ever had breast milk. She was a growing, thriving, chunky baby.
We went through Kara's health history with the gastro doctor, explaining in great detail why we were there and exactly how her reactions went. He told us that she "does not have FPIES. FPIES babies are failing to thrive, Kara is not failing to thrive."
I explained that Kara has been exclusively breast fed other than the three failed food attempts and obviously I wasn't going to keep feeding her food when she pretty much goes into shock each time she's had food! He didn't seem to listen too much to that, he just stressed that she was 8 months old and needed to start eating. I needed to stop nursing her so much and force her to start eating fruits and vegetables even though my poor baby would just scream in her high chair when we'd attempt to feed her. She was extremely delayed in her eating habits, but I didn't blame her one bit. The doctor ran some allergy tests - rice and oat along with peanut, dairy and a few other common allergy foods. We left that appointment with instructions to get her to eat, try her on barley and/or wheat cereal and to return to see him at one year. Needless to say, we left discouraged but our conversation on the way home went something like this. "Well, he said she doesn't have FPIES, and he's the professional. That's a good thing, I guess." We were left with nothing.
A few days later her allergy labs were back. Negative for rice, negative for oat. A possible dairy and peanut allergy but that could mean nothing too. Retest at one year old. Now what?
It is important to note that prior to Kara's two failed attempts with rice cereal, one failed attempt with oat cereal, and a few times of trying (wheat) biter biscuits, she only ever had breast milk. She was a growing, thriving, chunky baby.
We went through Kara's health history with the gastro doctor, explaining in great detail why we were there and exactly how her reactions went. He told us that she "does not have FPIES. FPIES babies are failing to thrive, Kara is not failing to thrive."
I explained that Kara has been exclusively breast fed other than the three failed food attempts and obviously I wasn't going to keep feeding her food when she pretty much goes into shock each time she's had food! He didn't seem to listen too much to that, he just stressed that she was 8 months old and needed to start eating. I needed to stop nursing her so much and force her to start eating fruits and vegetables even though my poor baby would just scream in her high chair when we'd attempt to feed her. She was extremely delayed in her eating habits, but I didn't blame her one bit. The doctor ran some allergy tests - rice and oat along with peanut, dairy and a few other common allergy foods. We left that appointment with instructions to get her to eat, try her on barley and/or wheat cereal and to return to see him at one year. Needless to say, we left discouraged but our conversation on the way home went something like this. "Well, he said she doesn't have FPIES, and he's the professional. That's a good thing, I guess." We were left with nothing.
A few days later her allergy labs were back. Negative for rice, negative for oat. A possible dairy and peanut allergy but that could mean nothing too. Retest at one year old. Now what?
Thursday, July 1, 2010
Her Story
Kara has always had sensitivity issues, since being only weeks old. I remember bringing her into the clinic at about 5 months old when she was broken out in eczema pretty bad. The only thing different we had done was give her a small amount of rice cereal for the first time. We were told to stop and try again in a few weeks so at six months old we attempted the cereal again. She gobbled another small amount down and we were on our way, as we had an event we needed to attend that night. Kara started acting really strange about an hour later, very lethargic and a little fussy. Shortly after that she really started acting funny, like she wasn't quite with us. I remember holding her up saying her name as she vomited a very large amount all over me and seemed to pretty much pass out. I panicked, trying to get her to come out of this and she proceeded to do these vomiting episodes 3 or 4 more times in the next 20 minutes or so. At that point, I grabbed Brian and we were on our way to the ER. They observed her and decided that it was a vesovagal response to the vomiting, educated us on dehydration signs and sent us on our way telling us not to try the rice again for 2 weeks and see what happens.
At Kara's six month check up we brought up the rice incident and were told that rice allergies are almost unheard of and it was probably a fluke thing. Two weeks later we tried it again, Kara took the cereal just fine, loved it in fact. She seemed to be doing OK so we put her to bed for the evening. Shortly after, I heard awful screaming coming from her room. I ran up there to find my poor baby covered in vomit. Head to toe, soaking her hair, her entire crib mattress. I yelled for Brian, we started cleaning her up as she heaved and vomited more than ever thought possible. We didn't rush to the ER this time, as they didn't do much to help us the first time. I held her over a towel as she vomited and tried to make her comfortable, watching her so she didn't completely pass out. Again though, she wasn't quite "with us". I don't know how else to explain it. We had an appointment with her family doctor the next day where it was decided to try oat cereal.
Oat cereal proved to do the same thing to my poor baby. The screaming from her bedroom to find her covered, once again, head to toe. Exact same reaction and back to the doctor.
At this time we switched doctors for Kara to the one that Brian's family doctors with in case we were dealing with some of the same issues they have. He has a strong family history of celiac disease. This threw us for a loop because celiac's CAN have rice so our doctor started doing some research online while we were in with her. She came across something called FPIES - we read the description together and it sounded exactly like what Kara was going through. She decided we needed to be seen by a pediatric gastroenterologist as soon as possible.
At Kara's six month check up we brought up the rice incident and were told that rice allergies are almost unheard of and it was probably a fluke thing. Two weeks later we tried it again, Kara took the cereal just fine, loved it in fact. She seemed to be doing OK so we put her to bed for the evening. Shortly after, I heard awful screaming coming from her room. I ran up there to find my poor baby covered in vomit. Head to toe, soaking her hair, her entire crib mattress. I yelled for Brian, we started cleaning her up as she heaved and vomited more than ever thought possible. We didn't rush to the ER this time, as they didn't do much to help us the first time. I held her over a towel as she vomited and tried to make her comfortable, watching her so she didn't completely pass out. Again though, she wasn't quite "with us". I don't know how else to explain it. We had an appointment with her family doctor the next day where it was decided to try oat cereal.
Oat cereal proved to do the same thing to my poor baby. The screaming from her bedroom to find her covered, once again, head to toe. Exact same reaction and back to the doctor.
At this time we switched doctors for Kara to the one that Brian's family doctors with in case we were dealing with some of the same issues they have. He has a strong family history of celiac disease. This threw us for a loop because celiac's CAN have rice so our doctor started doing some research online while we were in with her. She came across something called FPIES - we read the description together and it sounded exactly like what Kara was going through. She decided we needed to be seen by a pediatric gastroenterologist as soon as possible.
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