Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Sunday, August 8, 2010

Apple Fail?

Here we are on day 2 of the restricted diet and I have a gut feeling that she is going to be failing our first food challenge.

We decided to do apples to start because they are a pretty common food around our house - sippies of apple juice and water for big sister as well as for Kara, apple sauce with supper, or in her barley. In the last month I started questioning if it could possibly be the apples that weren't working in her diet, that's when I decided to start here.

Kara has not had much of an appetite at all the last few days so it's been difficult to get her to eat or drink much of anything. Her diet yesterday consisted of Neocate, barley, dehydrated apple pieces and applesauce. She did have a few bites of corn on the cob as well, because I'm 99% sure that corn is a safe food for her. She seemed to do fine with this.

Brian got up with her this morning and changed her diaper. He got me up because he wanted me to look at it. It definitely didn't look too good and was definitely loose - pretty familiar, actually, and very foul. But, this isn't entirely abnormal for her either. I got a sample of it for day 2 of the occult blood test - I'm sort of starting to think that there is blood in it as well.

We did barley and applesauce again for breakfast which she refused but she did drink a 6 oz bottle. As a snack I cut up apple pieces for her and big sister to eat. She took a few bites of that and threw them on the floor. I gave her the rest of her barley and applesauce which she ate ok. She started to get so fussy so we tried another bottle with no luck. She was really fussy, acting like she was tired so we put her in the crib. She cried and cried in the crib so Brian went and got her. She had another dirty diaper. Dang. Maybe she's failing the apples, maybe not, I just can't be sure yet. We finally got her down for a nap and I'm listening to her pretty restless on the monitor right now. I'm not sure if I should keep going with this or call it a fail, it's really minor so far, if it is a fail. I guess we'll see how the evening goes.


  1. So tortuous....the waiting and wondering...are the symptoms compounding and adding up or just adjustment?
    A thought, stop for awhile. Let her get back to a "baseline" of sorts and retry- just put it in maybe column...let her gut rest more...these kind of symptoms you may see if her gut isn't fully calm (something I've learned from other FPIES mommys) and they can be SO confusing and frustrating because you aren't sure if it is leading to a fail or not. Give her some more time on "just" her safe foods and go from there, maybe?

  2. So I should maybe just go back to barley cereal mixed with her formula for a few days? Makes sense. I probably should have done that to begin with. I'm not too sure how it's going to go for daycare this week. I've been trying to distract her during meal times - feeding her before we eat so she's not hungry when we eat.
    She did eat her barley cereal mixed with applesauce for supper tonight. I guess if she wakes up in the morning with another nasty diaper I'll go to just straight barley. We had 4 days (I think - 3-4 anyway...) of no nasty diapers and her bottom was more clear than it'd been in a month! A few minutes in that diaper today and it flared right up again. Maybe it was the corn, I shouldn't have given it to her, but we were at that picnic and she did so well but just WANTED it - she knew what she was missing. I figured, she eats kixs and hasn't reacted before so knawing on a little piece of corn on the cob SHOULDN'T hurt, right? AAAHHH. These food challenges at daycare this week are going to be REALLY tough.

  3. Yes, I can't imagine having daycare for Sam at this point. I know you have said she is great with Kara, so that is a huge help (and relief) for you I am sure.
    One other thing we do is Sam gets to watch Baby Einstein video's while the other boys eat. That idea the Occupational Therapist we saw actually gave us- and it helps A LOT. He didn't like them too much a few months ago but has really gotten in to them and I know he wouldn't eat as well without them! He wants to play too much a this age, but when he watches this- he eats mindlessly (great advice coming from a dietetic technician huh?!) :) Park your child in front of the TV and eat mindlessly. BUT in this case, well - you know...

  4. Also, go with your gut. I hear just as much of your instinct in this message as her symptoms. And if your gut is saying you're not so sure about apples, and haven't been for awhile- it might be telling you something. She does ok with Kix, so yes- likely does fine with corn. And if she ate whole kernal corn and didn't have worsening/high exacerbation of symptoms? Yes, hard to tell if you've got 2 questionable foods in play but I just hear you instincts more than symptoms even....you know? But I also hear that it could be questionable- so keep it on the maybe column and after her gut has had a rest, retrial and you'll get clearer signs quicker if they are on issue.