She is Allergic to what? Personal account by Dominique

When I say Hayleigh is allergic to ALL food, I always get the "blank" look and the question "what do you mean all food?"I dread the question of what Hayleigh is allergic to when we are out with other people. They can never wrap their brain around the idea that someone can be allergic to food. Then some people get upset and they act as if she has a death sentence. My heart then sinks at the thought of having to convince another person that I am not crazy and my child is going to have as normal a life as possible. This has occurred with family, friends and complete strangers. I have a harder time dealing with the people who keep wanting me to give her food because this is what a "normal" infant or toddler does: they eat. People do not understand the pain that food causes my daughter and NO PARENT wants to put their child in unnecessary pain. I have had people question my doings and even had people tell me things are all in my head. However Protein Intolerance is a real allergy and it is not pleasant for the sufferer.  Hayleigh has no one diagnosis her Drs call her MPI (Multiple food protein intolerant), FPIES (Food Protein Induced Enterocolitis Syndrome) and last visit EGID (Eosinophilic Gastrointestinal Disorders). These three things are all interrelated and just variants on a spectrum from what I understand. The allergic reaction takes place in the digestive tract and is Tcell mediated. Every 18 months the Tcells in the digestive tract shed and her reaction to aparticular food at that time may reoccur or it may be she can tolerate thefood. These disorders are also thought to be autoimmune disorders.  Autoimmune disorders tend to run in my family so this makes sense. My motherhas vertilogo and Addison's disease both of which are autoimmune disorders.


So lets go over the questions and get the answers straight:

What is your daughter allergic to? Everything we have tried so far.

What does she eat then?  She is on an amino acid based medical formula. The proteins in it are totally broken down so technically her body does not have to interact with any proteins. She also has one safe food: baby food jarred carrots (she cannot eat carrots we cook)

But she doesn't look as if anything is wrong with her. No she doesn't because we work hard at her get enough formula. During the day she eats 6oz every 2 to 3hrs and at night she eats every 3 hrs.

Will she out grow this? We have no idea. However the more foods a person reacts to the less likely it is they will outgrow this disorder. Hayleigh has reacted to over 30 foods so her chance of outgrowing this looks slim. Of course if she does we will be overjoyed, but if she doesn't she can still lead a normal healthy life using the formula she is on.

She is Allergic to What?