Truly a life changing diagnosis (for worse and better!)
My son was first diagnosed with FPIES 16 years ago. He was 2 months old when he had his first hospitalization as a result of his vomiting. As with many kids with FPIES, he would vomit 65-70 times over a three hour period. At the time the doctors were stumped. They insisted it must have been a dairy allergy, even though he was not eating any dairy. FPIES was fairly new on the scene (heck, the internet was fairly new on the scene!) and most doctors were not familiar with what it was to even make a diagnosis.
At 3 months old we happened to meet an incredible allergist who diagnosed him with FPIES. We were happy to finally have the diagnosis, but the information out there about this strange syndrome was close to nonexistent I think we read the same couple of medical journal entries half a million times looking for answers. There were none. We finally figured out through trial and error, Jack was unable to eat dairy, soy, rice and oats. It was tough. He reacted to trace amounts, even just touching the offending food and putting his hand in his mouth would make him sick.
I cooked almost 100% of his meals. I brought cake, pizza and goodie bags to parties for him because he couldn’t partake in any of the provided meals. It was tough, the other kids, in their attempts to make him feel better would tell him how bad they felt that he couldn’t eat what they were eating because it was so good.
Admittedly, he struggled with food. As an infant he had to learn how to properly eat without vomiting- we spent countless hours and dollars in speech therapy trying to overcome his issues with food. There was even a time after a reaction/hospitalization when he refused to eat any food other than lollipops!
The doctors assured us he would outgrow this syndrome by the time he was 2 years old, then 3 then 5 then… there were no more guesses. He was a healthy looking kid and a terrific athlete. His meals were all prepared by me and made by scratch. I knew EVERY morsel of food that went into his mouth. He didn’t snack much and he was very aware which foods were healthy and which were not.
I allowed him to take control of his food and snacking and because of this he was and currently is an extremely independent child. He never took being able to eat the same foods as his friends for granted.
As the years went on, we tried to reintroduce some foods that had been forbidden. The first one he ‘outgrew’ was soy. I noticed as time went on, there were little slip ups, ingredients in some products changed and he was able to eat small amounts of the other foods. For the first time we started to feel hope. From the moment of his diagnosis I worried I wouldn’t be able to send him to college and I was starting to think I might be able to send him to school (yes- he was 3 months old when I started panicking).
When Jack was 13 years old, we were at Disney world and Jack decided he wanted to try a bite of a candy bar. Lo and behold, he was ok! There was no trip to the hospital, he just ate it and was ok! This gave him the courage to try other foods and sure enough, he was able to eat EVERYTHING!
As you can imagine, we were elated to know this chapter in our life was over. To this day (he is now 16) I still get a little anxious when I see him eating sushi, but I know I no longer have to worry about what he consumes, old habits die hard I suppose.
The biggest takeaway we had from this journey with him is how much it actually improved our lives. My son is independent and very aware of food, nutrition and health. He has an athletic build, is very active and is an excellent student. He knows the difference between healthy food and processed foods because he wasn’t able to eat those foods as a young child. After he started to eat dairy, rice and oats again, he had a brief period of time where all he ate was junk. Thankfully, after the novelty of being able to indulge wore off, he went back to eating the healthy nourishing diet he had as a child.
As for me, the mom who worried endlessly for years, the result of all of my research and trying to understand the way our bodies work, I went back to school to become a health coach and a healing foods specialist. It was tough, and as you can imagine, his dad and I spent countless hours crying and confused as to how we got here. In the end, we took the lemons and made lemonade. It was a long and arduous journey, but if I could go back, I don’t think I would change a thing!
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Page published: October 20, 2016. Copyright © 2012,The FPIES Foundation