My daughter is now 27 months old. It took 19 months for us to get her seen by a pediatric gatroenterologist because our family doctor insisted that he couldn't take me seriously as I was a first time mom. I had never heard of FPIES until that first appointment with the gastroenterologist. My daughter hasn't really vomited from it, I'm not sure whether hers would be classed as 'atypical' or 'chronic' or what. She will often react a few hours after the offending food, usually with abdominal pain, crying, loss of sleep, and then loose stools that look and smell awful. We had a list of about thirty something different foods that did this to her, but now the list is getting longer for some reason. She has now also lost rice, oats, beef and we're wondering about corn, peanut butter or wheat. She already can basically eat no meat, no vegetables and limited fruit. I don't understand why she isn't outgrowing it, and why she is losing safe foods. I'm not convinced that the gastroenterologist knows much about FPIES, she said we should be trying foods 15-20 times before we give up on them. I just can't imagine 15-20 nights of not sleeping per offending food. It seems to me that maybe her gut needs a chance to heal instead of this constant bombardment? Any advice would be greatly appreciated.
Sadly, welcome to our world. There are quite a few of us on this forum with toddlers that lose safe foods and large lists of fails (not typical in the FPIES world). My son will be 3 at the end of this month. Some of the FPIES cases like this have a secondary diagnosis- immune related and such. My son has a reflux issue in addition to FPIES.
The only improvement with age we've seen is that my son's reactions are not as severe as they were when he was an infant.
We were diagnosed quickly in about a month by an excellent pediatrician. We had classic symptoms (vomit, sometimes leading to shock) to common FPIES triggers, as well as the symptoms you describe above depending on the type and amount of food.
We also got that same advice from an allergist about trying a food longer as long as there was no vomit. I chose to ignore it. There is no way I would allow my son to be in that much abdominal pain for that long, and I was worried about permanent damage. I pull the food once I figure out what it is. We only push through on a food if it is just slight diarrhea, which sometimes resolves.
I not sure I have a ton of advice. This winter I just kept eliminating food until his condition was under control (down to 5 safe foods). We are now very slowly building from there- He needs lots of recovery time after a food fail or we risk a chain reaction of foods failing. He has always been a good weight- his diet is just continually in flux. If you need food ideas, though very expensive, my son is currently doing well on ground lamb, Quinoa Queen cereal, and Neocate Splash. We have other foods as well, but the above list seems the safest.
Well, this weekend I am going to attempt to make candy from pure maple syrup (one of our safe foods) . . . What we do for our little ones! : )
My five year old has over 70 fails and only 13 safes. He was stuck at 12 for three years. If you don’t like what you are hearing from your doctor ignore it and consider changing doctors. You have to be able to work with your doctor. My oldest had three before we found one who works with us!
Also a dietitian or nutritionist is vital in my opinion to help you find things that are safe that get key vitamins and nutrients especially for brain growth.