Samaya was 6 months old when she was diagnosed with FPIES, but looking back she had gut issues from birth. She suffered from colic and silent reflux, and was on medications for both.
For the first few months, Samaya was exclusively breastfed. When we tried to supplement with formula, it didn’t go well. After trying more than a dozen different formulas, we settled on Nutramigen. Samaya tolerated it okay, but still had 6-8 mucousy, foul-smelling stools a day.
We introduced rice cereal at 6 months. After a couple of days she reacted to it with violent, delayed vomiting. When we introduced oats and bananas, Samaya had diarrhea, and a rash that looked like small, pimple-like dots around her mouth and on her bottom. She was on-target developmentally and growing well, but we were concerned that she couldn’t eat anything.
So I began to scour the internet. Eventually, I googled “baby vomits solids” and came across a group of moms whose kids had very similar symptoms. I found FPIES. It fit to a tee, except that Samaya hadn’t ever gone into shock or been hospitalized. Several moms suggested that I take information on FPIES to our pediatrician. We met with the pediatrician, and he agreed that we should consult with an allergist and a gastroenterologist.
The pediatrician, allergist and gastroenterologist ordered a barium swallow and Standard Prick Tests to rule out other issues. We learned from other FPIES moms how to trial foods and what to watch for. Atopy Patch Tests were done to help guide us through food trials. Our doctors confirmed that we were doing everything right and to keep going on this path.
At my request, we switched from Nutramigen to Neocate formula when Samaya was 11 months old. The transition was amazing! No more foul, runny stools or restless nights! She began to thrive. An endoscopy at 17 months showed no inflammation after her neocate diet and reaffirmed the FPIES diagnosis.
Food trials have been daunting. Our fail list has always been about as long as our passes list. Samaya has trouble tolerating fruits, which is unusual for FPIES kids. She’s also had symptoms that don’t fit into the classic FPIES diagnosis. She gets a lot of rashes. She has chronic canker sores and cold sores. Since her second birthday, her reactions have become more severe. Maybe it’s because we have pushed a little harder, not stopping when we first notice symptoms like crankiness, mucousy diapers, and rash. And maybe it’s because, as she gets older, accidental exposures are becoming harder to avoid. Since turning 2, she has had 3 severe vomiting reactions.
Samaya is 2 ½ years old now. She is happy and growing. Her favorite color is purple and she loves to carry her baby wherever she goes. Samaya does everything her big brother, Jack, does. But she’s also becoming keenly aware of FPIES. Her most common sentence is, “That makes me puke!” She knows she is different. She is well behaved at parties, never reaching for the cookies and colorful snacks that have been set out on the table. But she sees them, and it’s obvious that she wants what the other kids are eating. This is the hardest part of our FPIES journey for me.
FPIES has profoundly affected our family. We have changed our diet, mostly for the better. We rarely eat at restaurants. Going to parties and other events requires careful planning, and it’s not always worth it. Though we’ve cut back on dining out, we’ve increased our food budget significantly. Fortunately, Samaya’s formula is now covered by our insurance—although we had to fight
Family, friends, and medical professionals have questioned the severity and sensitivity of her symptoms. Many doctors still do not understand FPIES. There isn’t enough information available about this food allergy, and there are no definitive diagnostic tests.
But the FPIES community has been a tremendous support for our family. It has empowered me to work for change, so that the road for other families isn’t quite so long. I have learned how important it is just to be heard, supported, and understood.
Follow the Samaya’s story:
Yummy in my FPIES Tummy
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Page published: June 19, 2012. Copyright © 2012,The FPIES Foundation