“This Can’t Be Normal: Our Little Guy’s FPIES”

Our son was born via scheduled c-section (breech) and I nursed him exclusively for months.  At 5 weeks he started exhibiting the familiar arching, writhing discomfort I had seen in his sister.  She acted that way long after colic and reflux would have lasted and since she vomited each day she had yogurt or milk from 12- 21 months (retrospectively, we suspect she had MPIES), it occurred to me (years later) that maybe she’d had a temporary dairy intolerance.  So at the time I thought maybe he has the dairy issues she did, and I cut non-cooked dairy from my diet.  Within three days there was a dramatic and immediate difference in his sleep and temperament.  When I accidentally ingested milk in my coffee two weeks later, the writhing returned and lasted for three days.

Two months later, since I didn’t have enough breast milk for the time I’d be away, and aware that he couldn’t have cow’s milk, I left a bottle of Soy Isomil formula with the babysitter.  No problem.  But the second time this happened, when I returned he had just begun vomiting (a ton), though he’d eaten hours earlier.  The third time, the vomiting happened again and more violently. It didn’t then occur to me to cut soy from MY diet and the sleeping problems and fussiness resumed.

When he was 5 months we began him on solids (or tried to).  He resisted, but ultimately had some rice cereal and pears.  No dramatic reaction, but he was congested and fussy and uncomfortable and I blamed it on the pears (though I now wonder if it wasn’t the rice).  We waited a week until his “cold” went away and tried peas for a day which he mostly refused and then carrots which he ate and enjoyed.  But the “cold” returned and he refused food again.

After it cleared up, I tried him on cooked mashed bananas. He ate a large quantity.  Three hours later, he began convulsively vomiting for hours. The pediatrician thought it might be a bug and we waited a week.  At his suggestion tried sweet potato.  He took only one bite and again, almost three hours later, violent vomiting.

At this point I refused to give him any more food without a diagnosis (overruling my husband and the pediatrician).  And in between the 4-6 waking/feedings each night, I scoured the internet.

I started googling for “kids who vomit when they eat sweet potatoes,” “babies allergic to bananas” and so on.

Ultimately, they led me to various mom blogs detailing their experiences with FPIES.  Once I had a name for his illness, I found my way to the FPIES Foundation, where I discovered that there were doctors on the board who worked at Mt. Sinai, blocks from our home.  I made an appointment with Dr. Nowak-Wegrzyn for two months hence.  By the time we saw her, my son was nine months old and had lost weight since his 6 month checkup and then hit a plateau.

He was solely breastfed (constantly) and was officially “failure to thrive,” well off the charts.

Dr. Nowak-Wegrzyn gave him a skin prick test and he tested negative for all IgE allergies.  She diagnosed him with FPIES.  We consulted with a gastroenterology colleague of hers, Dr. Breglio, who prescribed Famotidine (Prevacid) for reflux, in case that was a component (though it made no difference and after two weeks we stopped).  We consulted with the Mt Sinai nutritionist, Dr. Groetch and given our particular triggers, she and Dr. Nowak Wegrzyn agreed we should begin trialing cauliflower, broccoli, squash, and white potato in two week trials, beginning with a spoonful on day one, two on day two, and working up to a full feeding.  We began with cauliflower and we had an atypical reaction (he vomited, but 6 hours later) on the first day.  We next tried squash.  We gave him baked butternut squash for two weeks and it passed. We then tried broccoli. Pass.

We received the sample of Neocate Nutra (a medical food that can be used like a cereal).  It took days for him to acclimate to the taste, but it passed and we began giving him two bowls a day along with safe foods and the morning trial food.

White potato passed.

We spoke again with the doctors and were told to try turnip, eggplant and radish next.  My immediate reaction was “radish? How on earth will I get him to like these foods?!”

My understanding is that there were two goals in terms of the food progression.  1) NOT to set off any more reactions and 2) to introduce variety.  The first is tricky though.  When I first met with her, Dr. Nowak-Wegrzyn said the good news was that we were lucky- that my gut reaction to avoid giving new foods after the reactions meant we had that many more to choose from down the line. My understanding is that when a food causes a reaction it is like a trip wire – the body is now activated to react to that food and thus it can’t be reintroduced until the FPIES condition is gone.  Thus it is important NOT to give too many reactive foods.  Our particular list, however strange-seeming was based on two factors 1) relationship to previously-tried safe foods (ex/ turnip is a close relation to white potato) and 2) lack of protein, since FPIES is ultimately a reaction to food protein, as the acronym suggests.

The bad news, in our case, was just that his reaction to dairy, prior to any experience of his own (via formula) was predictive of a more severe FPIES condition.

Corn (we knew it was likely to succeed since he had no reactions to the Neocate or Nutra which contain cornstarch) was fine.

Earth Balance no soy no dairy spread was deemed ok to use and caused no reaction.

Turnip passed.

Eggplant passed.

When we had our appointment after these foods, we were told my son’s tone looked good.  He had begun gaining weight at the rate of about a pound a month since the Nutra in his eleventh month and though still off the charts, he was no longer failure to thrive. At this point, we were given the all clear to try more varied foods and, crucially, told we could now trial foods for seven days instead of 14.

We were told to try our first meat. And ham passed.

Then, blueberries passed.

Next, Quinoa passed (which meant we could give him Ancient Harvest corn-quinoa pasta, too!)

From January, 2012, when he was 9 months until we had a temporary setback with a spinach fail, we have had only positive trials and we are on the list for the hospital challenges to previous trigger foods and probable trigger foods (I think it’s rice, chicken, dairy and soy), at which point (sometime between 18 months and 2 years old), should he pass, he’d be deemed free of FPIES.

At this point, I find myself fighting to be pragmatic, even as I feel the flutters of optimism.  With the help of NYS Early Intervention (we qualified, although they don’t accept “medical” reasons, because his condition clearly led to developmental delays), we have overcome his spoon aversion and he is accepting varied textures.  As he has gained weight and strength, we have made physical strides too (literally, in the form of 10 steps!) and while we’re not remotely early with the milestones, we’re managing to make the “normal” cutoffs, something I wasn’t sure would happen when I was first facing all of this.

While I am chastened by our spinach fail (and the flashbacks it gave me as I strapped my now 14 month old back into the Ergo to wander up and down the street at midnight as he wailed), we are now three days into cantaloupe and so far he loves and tolerates it (and we have never had a fail after day 3, knock wood). So I’m optimistic.  And, grateful.

I find that with distance I can see some silver lining, in that I got to enjoy an extra-long babyhood with my youngest and probably last child, since his slow growth, physical weakness and extreme dependence kept him more baby than toddler until recently.  So I soaked up the experience, nursing him, carrying him, soothing him. And of course, on the flip side, his newfound strength and independence are not taken for granted – we celebrate every milestone with gratitude and joy, knowing how hard-won they are.

I hope our story helps anyone with similar FPIES manifestations.  I know how lucky I was to be able to have such outstanding doctors so close by, and hope that by passing on our experience, as mediated by their prescriptions and recommendations, that it helps give clarity to someone who does not have such access.

Page published: July 12, 2012. Copyright © 2012,The FPIES Foundation