Hi there. I'm wanting to hear experiences from any parents with a child with acute FPIES to multiple triggers. My son is nearly 8 months, reacted badly to everything he has tried to eat including Neocate formula. Severe FPIES to rice, courgette (zucchini), milder FPIES to cauliflower, probably potato. Through my breastmilk he reacts badly to dairy, soy, treenuts, coconut, sesame, apples, peaches, bell peppers, tomatoes. Has had severe FPIES vomiting to bile from me eating cooked bell peppers after excluding them from my diet for months. We are worried that our lovely little guy is allergic to all proteins. He is doing well on breastmilk only but we are all exhausted and he needs more. Anyone else in a similar boat out there?
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Hello! My son is now 8 years old and your situation sounds very similar to mine when he was a baby. My son was so reactive to rice, corn, dairy, oats and soy we were trialing random ingredients weekly through me and my breast milk so that he would not reach failure to thrive. Many hospitalizations later I went on an elimination diet and kept charts to record what I ate so we could compile a “safe foods list” . Potatoes, tomatoes and peppers are part of the nightshade family and that’s probably why those don’t work out in your little one’s tummy. It took me several years of food trials and learning how to cook safely for his health. As time went by I noticed the safe foods list grew! Now that he is 8 years old he is only reactive to Rice! Some of the types of foods you might want to trial could be chickpeas and other beans because they are higher in protein. Oats or Barley might be an option for you as well. Just be sure to trial one new item and give it a few days before adding it to the safe list! Best of luck to you and your little one! There is hope! My boy is now a very happy healthy 8year old!
I second trying beans if you can! Black beans and peas were both safe for us with both of our kids. Though our second didn’t like either Of them. I also felt so stressed about food trialing that I ended up just stopping food trials with my second until his first birthday. It meant he wasn’t eating the foods or amount of food many other children were at his age but he was very heavy and enjoyed nursing so as long as he could eat his few safe foods he didn’t seem to care. I’m not sure if your LO has any safe foods but if he does, this may be an option for your family. I felt so much pressure to figure out what their triggers were with my first. The gift of my second was that I delayed and then he had such a slow on ramp to eating solid food that it didn’t feel quite as bad as it did with my first one.
I am not sure that’s quite as encouraging as it should be since you’re knee deep in trialing foods but you can give yourself permission to back off for a while if you all need a break. I know that’s hard given you’re breastfeeding and he’s reacting through you but it might help take some of the stress out of it all and give his gut some time to heal a little bit more if you have a controlled breastfeeding diet that he seems okay with.
All to say, good luck momma! It does get better. Eventually! I have an almost 9 year old who is eating totally normally now and a 7 year old who is healthy and thriving, albeit working through some picky eating issues (including sensory ones), but getting better every day.
We were in a similar situation. My son was allergic to all formula (including Elecare)- We breastfed until 3 years old until we finally got Neocate Splash to work. Don't feel that you have to push food at 8 months old- breastmilk is everything. Our safe foods constantly changed. At age 2: his safe foods were pear, lamb, white potato, avacado, and quinoa if that gives you ideas. (Not saying yours will be the same.) That's it . . . . There is light at the end of the tunnel- my son was completely cured at age 5 and can eat anything. I understand your pain, frustration, and complete exhaustion. You and all of us FPIES parents out there are amazing.