Another Diagnosis, Almost

Colin was diagnosed with Food Protein Induced Enteropathy at three months old.  Once he started solids we started seeing new symptoms and so many food fails that we wondered if there was something more to the story.  After a lot of research, some tests and several doctors visits, I think we are a little closer to having a diagnosis.

We think that Colin has Food Protein Induced Entercolitis or FPIES.  (Pronounced like F-Pies, like apple pies).  So what is FPIES?  The International Association for Food Protein Entercolitis writes:

Food Protein Induced Enterocolitis Syndrome (FPIES) is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. FPIES typically starts within the first year of life.

Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. About 75% will have acute episodes on diagnosis. The other 25% children will have more chronic symptoms, which resolve within 1 week after avoiding the food.

There is no curative therapy at the current time. Strict avoidance of the offending food is the basic treatment

Unlike common food allergies, standard skin testing and blood testing for specific IgE are routinely negative in these patients. Therefore, a careful history and physical examination is the key for diagnosis

There is a great article on FPIES here.

How did we get here?  Well, over the last few months several people who heard Colin’s story and symptoms mentioned the name FPIES to us.  We did a little reading and were surprised to see how the description of this syndrome fit with what we were seeing.  Recently we saw a pediatric allergist and a doctor doing her fellowship with him.  I kept FPIES in the back of my mind but didn’t bring it up, not wanting to seem like I was google-diagnosing my child.  Anyway, we spent the most time with the fellow and were so surprised/relieved to hear she thought Colin’s reactions to oats was textbook FPIES.  She was very helpful and supportive.  She said there is no test to confirm it and no treatment.  The pediatric allergist was unfortunately not as helpful, basically telling us that regardless of my food trial data, due to lack of testing and breastmilk variables, it was impossible to prove what Colin was really reacting to and unless Colin was failure to thrive or in the hospital, we just needed to deal with having a fussy baby.  He did test him for IgE allergies (regular allergic reaction) for oats and banana.  Colin was negative for both.  The fellow said that the negative results were actually good in that they supported an FPIES diagnosis.   So since the main allergist wasn’t ready to put FPIES in his file, I can’t say he has a confirmed case, but after our long talk with the fellow, we are comfortable with that diagnosis.

You may be surprised that the fellow telling us it was FPIES was actually a relief.  It is not the happiest of news for a parent to hear, but I got over the shock of FPIES a while ago after reading a lot about it and realizing it fit Colin so well.  I also know most kids grow out of FPIES by age 3-5.  It is not a life-long problem, although some kids have food sensitivities that may remain.  Just hearing someone put a name to what is going on and validating our struggle felt really good.

I joined an FPIES support group online, which has been really helpful and confirmed any remaining doubts we had.  So many of the kids are like Colin, having the scary vomiting reactions to a few foods but having the diarrhea/sleep disturbance/other reactions to many more solids.

Looking ahead I don’t know what is in store for Colin after he stops breastfeeding.  My hope is that he will have enough safe foods to get enough calories and nutrition.  I tried asking the allergist what to give Colin after breastmilk and he said cows milk or soy milk.  (Sigh- not helpful!).  I tried telling him about Colin’s intolerance to those and he wasn’t receptive.  Sooo, the plan is just to forge ahead with solid trials (and the sleep deprivation they cause) with the goal of finding foods before weaning him off breastmilk.  I know Colin will need to breastfeed long after a year but I am really exhausted by this diet. I’m ready to be done, to eat again.  I’m toying with the idea of taking him to a nutritionist, who can help us make sure he is getting the nutrition he needs and can help us plan what foods to try next.

For now we are going to retry bananas.  We originally thought he had an IgE allergy to them due to eczema we saw, but the allergy tests showed otherwise.   I am going to be more strict about the food trials, giving foods 5-7 days if we can tolerate it (unless there is vomiting/diarrhea) and I will have to be really strict about my diet.  (Sigh)  No more tastes of peanut butter or sneaking the risky candy corn, which is delicious when eaten with a handful of peanuts by the way, but it is made on the same equipment with all sorts of offenders so it has to go.


2 responses

  1. Wow, I’m sorry that you have had to go through so much with your little guy! I’m glad that you finally have a name for it, though; I’m sure that helps alot. It’s tough to have to stick to such a strict diet, I know. 😦 Have you thought about coconut milk for after breastmilk for him? That’s what I want to ask my doctor about for my son, since he can’t have milk or soymilk either. I don’t know if it has adequate nutrition or not, but I know it has lots of fat which they need. 🙂 Just an idea 😉

    • We’ve thought about coconut milk since I use it so much in my cooking, I’m hoping he can tolerate it. I have been thinking about seeing a nutritionist for him. I’d love to hear what your doctor thinks of it!

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