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.

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Making Progress

Colin is five months old now and recently I stopped to realize that although we still have to work on identifying all of his food allergies, he has come a long way in the last two months.  Two months ago he was spitting up all the time, projectile vomiting, and his diapers were a green mess after every feeding.   We just accepted that this was the way it was going to be for him.  These days the spitup and scary diapers are more occasional than everyday.  It is also easier to see when foods bother him because we have more “good days” than bad and we can see a change after I eat something. I also think he is looking better.  No more looks of dehydration and he is starting to pork up a bit now, nice round cheeks and little turkey legs on him.  I think it took eliminating a lot of foods and time for his intestines to heal to get to this better place.

There still are allergens we haven’t identified.  Last week Colin began spitting up every day and his sleep was awful!!  I kept reading over my food log but was totally perplexed and frustrated.  I had no idea what it was and still don’t.  Was it actually something I ate?  Was something I ate contaminated with soy from the factory? Usually we don’t have a problem with things made in the same factory but maybe this time whatever I ate was full of soy sprinkles (as my husband jokingly calls the soy in everything in the market).    Was it because Colin was teething?  I’ve heard teething or illness can exacerbate reflux.  There are so many variables and sometimes they are overwhelming.

Weeks like last week I think about going back on a total elimination diet, where I just eat 6 things over and over for a week and add new foods in one at a time.   Last time I tried that kind of diet it was terrible on Colin and myself.  I was starving all the time and it threw off my digestive balance, putting me in the same boat that Colin was already in.  Meanwhile, Colin just whimpered and whimpered so I stopped after barely a week.  Now I think that two of the foods that were supposed to be good choices, chicken and sweet potatoes, were foods that seem to bother Colin.  Jeesh!  Instead of swapping foods in and out trying to find a safe 6 for a baseline, I just decided to keep an uber detailed food/symptom log.  I keep track of everything that I eat and drink and also Colin’s sleep quality, poo, spitup, fussiness and other things like eczema or supplements like a probiotic.  At some point I may go back on an elimination diet but I’m hoping we won’t have to go there.

Right now I am not eating any form of soy, dairy, rice, chicken, peas, most beans, chocolate, sweet potatoes, avocado, nuts or anything the least bit spicy.  It sure makes meal planning hard, especially since I don’t want to eat red meat every day of my life.  Some days I get really down, feeling deprived and depressed, usually because I don’t have enough safe food in the house for me to eat or because I want to eat outside of my own house.  I definitely feel better when I plan better.  This blog has helped me a lot by having a place to keep track of things I can eat, a reminder that there are safe foods and also motivation to keep finding new foods that I can eat.

As Colin nears the six month mark I see this road is going to be a lot longer than I had originally hoped.  I thought by now we would have identified all of his allergy triggers and would maybe be outgrowing some.  I would say we know the big players but still have more to figure out.  The good news is we have had the chance to do some challenges since he is having good days and determine that some foods are for sure a problem and weren’t just confused with other triggers in the past.   Even having that confirmation is progress.  This week I am trialing almonds to see if there is at least one nut that I could eat, not to mention all the things I could make out of it.  Two days in and Colin seems to be doing fine.   Hopefully almonds will be a success but if not, at least it is more information and a small step forward.

Food Protein Induced Enteropathy

I am a stay at home mom to two wonderful, adorable spunky little ones, Hannah (3) and Colin (3 months).    Our life is not terribly exciting  to the outside observer but my hope is that if I can help one other family out there with this blog then I am happy I shared our story.

Our son, Colin has been diagnosed with Food Protein Induced Enteropathy at three months old.  It has been challenging and a huge learning experience so far and we are just getting started.

It has been hard finding information on this, even our doctor got the medical book out to read it to us, but here is what we think we know so far:

Food Protein Induced Enteropathy is a food allergy that affects the intestines but is different from regular allergies.  It is a non-IgE-mediated disorder so unlike a peanut allergy for instance, skin prick testing most people are familiar with would show up as negative.  It is more like celiac disease.  It usually shows up in the first months of life with diarrhea, vomiting, and/or failure to thrive. Most commonly is is caused by reactions to milk and soy but egg, wheat, rice, chicken and fish can also be triggers. Colin seems to have some other foods that bother him as well, so not sure how that fits.  Children with this can grow out of it, usually by age two or three.  It is similar to but less severe than Food Protein Induced Entercolitis  (FPIES).  Children with Food Protein Enteropahty usually have less vomiting, no bloody diarrhea and less severe reactions to the problem foods.

Diagnosing:  There is no one magic test to diagnosis this.  Most commonly it is discovered when the symptoms appear, other causes are ruled out and the elimination of trigger foods alleviate the symptoms.

Treatment:  For us the treatment involves discovering the trigger foods and trying to eliminate them from my diet since I am breastfeeding.  Since Colin is growing so well our doctor believes breastmilk is doing him a lot of good and is a better choice than the specialized formula he would need if I stop breastfeeding.   In 6 months or so we might try to re-introduce foods or “challenge” them by feeding small amounts and then increasing the dose while watching for reactions.