FPIES - I need support and advice.

[nurturebaby]

I'm really discouraged - my dd (almost 1 yo) was recently diagnosed with FPIES (food protein intolerance enterocolitis syndrome) - it's different from the more common milk/soy protein intolerance.

She has a very severe reaction that requires hospitalization when she eats squash and sweet potato (pretty much as far as we got with solids...) - it was so bad that the attending ER physician treated her for suspected meningitis due to how horrid she looked after the vomiting finally subsided. We were transferred to Children's Hospital where she was hospitalized for a week the second time it happened and has been receiving supplements of elemental formula via a feeding tube to help her gain weight, as she is also severely underweight (and exclusively breastfed)

Anyway... she doesn't even tolerate the small amount of formula well, but we have now been given the all-clear to start trialing some of the foods that are less likely to cause a fpies reaction.

I'm really nervous and feeling really overwhelmed. Hoping there is somebody out there who has experienced this and may have advice on foods to try...

[kjbrown92]

Has she been reacting to foods through you the whole time, or not until she started ingesting the solids herself?

Sorry that you're joining us, but welcome.

There's a Joneja Allergy Chart that shows the most/least allergenic foods, but those are generally for IgE allergies. We did a survey here to find out who we reacted to what with regard to intolerances, and I can send you that on a spreadsheet (Excel) if you want to PM me with your email address, and you can see which foods were least reactive to us here.

[nurturebaby]

Thanks Kathy - I just pm'd you

[blondiebakergrl]

I need some advice on something that happened to my 7 month old daughter yesterday.  After breastfeeding I fed her some applesauce (first time) and mixed it with some rice cereal (third time).  She ate some of it and shortly later I put her to bed.  Approximately two hours later she woke up and I picked her up out of the crib and she vomited all over the floor.  So I set her down in her seat and cleaned it up and about three minutes later vomit again.  Cleaned her up, about 3-5 minutes later vomited again.  By this point my husband was coming in the door and I said to him that I thought something was wrong with her.  By this point she vomited again, fourth time in about 15 minutes.  I was holding her and after she threw up she just laid her head back in my arms and started shutting her eyes and getting limp.  At this point I was getting very concerned.  I roused her and tried to nurse her.  Didn't want to nurse at all.  So again vomit, and before she was vomiting she would cry and then afterwards get very "sleepy" and limp.  Her head was cold, hands hot.  I called and talked to a nurse through my insurance.  I told him all that was going on and he said that it was hard to tell what was happening, he suggested flu, or gastrointestinal block.  But he said that protocol states for the symptoms I've stated he has to tell me that she should be admitted to the ER.  By the time I got off the phone with him she had threw up probably three more times.  By this point it was yellow bile and sometimes green and clear.  Anyhow we took her to the ER and they ran a flu test and RSV and both were negative.  She threw up again there and it was clear greenish yellow again.  They gave her an anti nausea pill that dissolved in her mouth.  That helped she didn't throw up again since then.  They basically didn't know, just maybe a stomach virus.  By the end of the day she was acting pretty normal, more active, smiling etc.  So upon doing some research online I came across this FPIES.  Does anyone know if this sounds typical of this condition?  From the symptoms I've read it does to me, but hearing from real humans would be great.  Thanks

[scsigrl]

First off :hugs:

FPIES is pretty scary stuff. It does sound like it could be.  With no other signs of illness (no fever, no other vomiting) it could be.

FPIES is difficult to pin down because a) there is no real test for it and b) Many Docs don't know about it.

There is a web board (Kids with food allergies) that has a section on FPIES.  If you are looking for a doc, you need to be sure you find one who knows what FPIES is (Our allergist dx out son but our gastro had never even heard of it!  Some people have a gastro manage things while others have an allergist do the FPIES stuff).  You can also find a Facebook group for FPIES if you are on there.

If there is anything else I many be able to help with (I know it is a scary thing to deal with), feel free to PM me!

[blondiebakergrl]

Thanks for your reply scsigrl! 

What does anyone here think about trying the rice and applesauce on separate occasions to see if this happens again?  I don't really want to, just because I don't want her to have to go through that again, but also because what if the reaction is more severe the next time.  But I'm not certain which food it was.  I'm suspecting from all the information I've found on the web that it's the rice, but I feel I need to narrow it down for sure.  Any advice would be helpful!

Thanks

[scsigrl]

 

Have you seen an allergist/gastro? Shock isn't something I would want to mess with at home. Some Docs would say just to stay away from both. Some would do a patch test and some may do a food challenge in the office. This is serious enough that I wouldn't feel comfortable doing any kind of home trial without a Dr. knowing what's going on. Also, there is the possibility that this is a IgE mediated response and getting tested for that may give you valuable info too (like you may need and epi pen).