Our youngest son was born last October (he is the youngest of 4 boys). He was exclusively breast fed and became deathly ill when he was two months old...severe vomiting, diarrhea and ultimately severe dehydration. He lost 2 pounds in a matter of 2 days and was hospitalized for a week. He was diagnosed with Fpies and has been on Elecare amino based formula ever since. He is happy, healthy and growing which is a huge relief! We are currently navigating the transition into baby food and “regular” food with the help and guidance of a pediatric GI specialist and a pediatric nutritionist. Anyone willing to share their experience would be helpful!
What information are you looking for? I have two boys with FPIES 5 and 2. My oldest has 14 safes and my youngest 12 though he does eat all 12 because of oral motor challenges. Oral motor therapy is commonly needed but the majority of FPIES kids. Baby food is unnecessary by any child but you can trial it if you want. The most important thing is to trial ingredients one at a time and more like two weeks or more apart rather than four days like is typically recommended of transitions to solids. You need to figure out the trial protocol the works best is safest for your child. It is a little different for each kid. It is important to allow enough gut rest between trials-a break where they only eat safe things and allow the gut to recover and heal...this will avoid false fails. Trust your mom gut and don’t push forward because a doctor said so if it doesn’t feel right to you—this is new to everyone and no protocols exist, it’s all guess work based on a relatively small number of patients. And don’t worry if it takes a long time to get a safe food if your child is thriving. Both my boys were solely breastfed until 17 months except failed trials and thrived. Note: both reacted to some foods through my milk. Ask me anything you’d like!!
Murphy, how were you able to determine what foods they were reacting to through your breastmilk?
Meticulous journaling of every ingredient (so no eating out lol) and reaction, trial and error and time. It was a long slow process. I did not do a strict elimination diet all at once because my doctors worried for my health and milk supply. My youngest reacts through my milk to stuff my oldest did not.
My only option! But I appreciate that. Their doctors have consistently said “I don’t know how to explain that that are thriving and doing so well but they are so whatever you are doing don’t stop!”
Full disclosure they both needed iron infusions periodically.
Oh I should mention that we have had good luck with homeopathic remedies for treating some every day ailments. Otherwise all our prescribed medications are compounded and outrageously expensive. A small bottle of ibuprofen is $45 and not covered by insurance!!
I agree with everything Murphy said. My 3-year-old son is not unlike her children- He has 10 safe foods, and he has always thrived. : )
I exclusively breastfed for nearly 3 years except for failed trials. He reacted to Elecare (could have been a false fail- I didn't realize he needed a month of gut rest between failed trials at the time), and he disliked regular Neocate of any flavor. But, now he really likes Neocate Splash. : ) He was pretty good- only reacted to turkey and juice via my breastmilk.
We did the baby food stage. My son does best with baked, boiled, or highly processed organic food. The only exception to this is avocado. (We cannot do canned food- he reacts to the can.) We did most of Gerber 2 with good success (prior to diagnosis- he reacted severly to squash and sweet potatoes. Later he reacted to banana and green beans. He's never had peas, since it is a common trigger).
He reacts to all grains- we use Quinoa Queen cereal- which you can also put in the food processor to make a "baby cereal" not unlike one made from rice or oats. Quinoa Queen cereal is the reason we do not have oral motor problems- he learned to eat!
Our transition to real food was trickier and much more rocky. So, not sure I have advice there.
We do not have iron issues. We have a multi-vitamin with iron (poly-vi-sol with iron only for 1 and up), as well as foods like quinoa that are high in it. We are still working on getting calcium up to recommended levels- mainly because it is hard for me to afford Neocate Splash, which is not covered by my insurance.
Hope that helps! I'll cross my fingers that your little one does not have food fails crossing over the multiple food families. A lot of FPIES cases only have a few triggers . . .