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.

Friday, August 13, 2010

Mommy Mess-Up

So it's no secret that I've been incredibly frustrated with not figuring anything out as far as Kara's diet goes.

Yesterday I'd had it. Kara's been hungry, fussy, just plain old not happy about the lack of food that we've been giving her and her digestive system has had no change, in fact, maybe it's even gotten worse. She's had such minimal foods lately and things haven't cleared up one bit. I started to think we were going to have NO SAFE FOODS for her. This warranted a call to the U yesterday and a return call today with the nurse. They are going to try and squeeze Kara in next week at the U, if not next week, then the week after.

This morning she woke up with a really nasty diaper, as usual. This is the way 3/4 of them are lately. She now has four open spots. It breaks my heart. I just want to cry as I hug her and hold her, try to console her after getting her cleaned up.

This afternoon I came back to my in laws to put the girls down for a nap. I sat down and posted a "vent" on the FPIES message board that I follow and then flipped back to facebook. I started chatting with Joy, a Mom in MN who has a boy close to Kara's age with FPIES. She's become an awesome resource and a great friend in just a matter of a couple weeks. She's gone through so much with her little boy and relates to our journey. She asked me if Kara was on Gerber Barley, in which I answered yes. She continued to let me know that Gerber has SOY in it and this could be part of what's going on because a lot of people who have dairy allergies also have soy allergies and soy is another common FPIES reaction. Maybe you can see where this is going...


Why hadn't I thought of this before? Most importantly, why didn't I ever read the barley label? Wait, I did. WHEN SHE WAS 6 MONTHS OLD! Since we've been feeding her this here and there for so long, I never thought to re-check the label! After I stopped nursing we went from enfamil to soy to Nutramigen. The nutramigen didn't work so we went to Neocate. We cut soy out of her diet (for the most part - she can handle minimal soy) after the soy milk fail. I think that with the barley being fed to her so much lately, she's getting all that soy and it's starting to become amounts that she can't handle. Who knows if she would have eventually had a full blown FPIES reaction or not, I probably would have tossed it off as a barley fail and still never checked the label!

I felt so small finding this out. I'm suprised I held myself together, i wanted to bawl! Joy assured me that these things happen (thanks SOOO much Joy, I'm forever greatful for you!!!) even when you double and triple check labels. I still feel so awful about it.

So, with barley cereal out of the question now I stopped at Cub on my way home from Brainerd. I didn't come home with much - quick barley (which I don't even know if she'll eat), and some malt o meal which is wheat and barley. I don't know that she'll have either one anytime soon - I may just stick with her KIX and Neocate for a few days, as long as Kara will allow, anyway. Maybe the whole wheat pasta will be ok, but for now, we need to find a baseline. This is what we should have been doing for the last week, but with not knowing about the soy, ugh. I'm still kicking myself for not checking that label again.

The FPIES message boards are wonderful sources of info. Many of the Mom's know more than most of the physicians. With FPIES being so rare, it's almost unheard of but these Mom's do their research and put different babies circumstances together to try and figure out the puzzles for their own babies and teach their doctors as they go. They are a powerful group of women and I am forever greatful for coming across this group. Again, thanks JOY!!!


  1. Kendall, I hope that is what it is that it upsetting her tummy. I have learned so much from the other FPIES moms- I am just passing information along...it is essential because what you learn from other moms will be more than the doctors can tell you at this point....they are just not in the trenches like we are and when you can connect what other mom's are saying to be the EXACT thing you are going through with your own little one- it only makes sense. They need to publish more data/information on FPIES for the medical community to learn from as well but until they do- it is up to the Mommy's to help the kiddos!! ;)

    Do NOT beat yourself up over the ingredient label, just use it as a lesson and move forward -- it is the ONLY thing you can do. I have done it too many times myself, so that is why I asked to be sure you had double checked it...I swear I read the label for mylicon a dozen times and completly missed a sugar ingredient -- until my little guy started his SCREAMING agitation (because of his compounding carbohydrate/sugar intolerance) and then I read the ingredient list again and it was right there....I melted into a puddle....I did that to him, I did it to myself...lesson learned...I always have someone else check a label for me before I give it to him to make sure I'm not missing something. It would be the same thing you would do with an IgE allergic kid- proceed with caution.

    You will find her a safe diet soon, she isn't having daily vomitting so that is a GOOD sign. Just give her tummy time to heal a bit and then start food trials up again, slowly and cautiously.

  2. Kendall, I believe that Jewel's Market on 210 may have more clear labeling than what you are finding at the grocery store. All of the foods are allergen-color-coded. I know you didn't want to start going that route yet, but it might be easier than to read food labels with kids in the cart squirming around.

  3. Two days of Neocate and kix and she's had no tummy aches.

    The last time I tried Jewel's, I didn't have any luck because most everything has rice in it as a substitute. They did have some corn products, like cereals, but the kix works just fine for that. I will check it out again though, maybe get some pastas and things once we get things figured out.