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My 6 month old may have FPIES and I'm so scared for him.

Last Monday, we gave him his first taste of peanut butter mixed into oatmeal cereal (he had eaten oatmeal a ton of times previously).  He also had a bite of avocado which was his second exposure.  Everything went well and I put him to bed.  Two and a half hours after eating I heard him scream on his baby monitor and put his head back down.  It looked like he had fallen asleep again but it was weird that he screamed so I went to check him.  He was COVERED head to toe in vomit and limp and disoriented when I picked him up.  I yelled at him and he became more alert but continued to vomit several more times.  I put him in the bathtub and called the pediatrician on call because I was really scared and he continued to vomit and have diarrhea.  

His vomiting finally stopped and he nursed and went back to normal coloring and was happy again. I watched him like a hawk for the rest of the night and didn't sleep, but he was totally fine after nursing and was 100% himself the next day.  He never had a fever or anything.  

The pediatrician referred us to an allergist and we went on Thursday.  He tested negative for IgE allergies to the most common foods and they did a blood test for avocado so we are still waiting for those results.  Doctor found that my baby had a double ear infection, so they think that he may have just gotten sick from that.  But they also said that the timing was way too suspicious and that they wanted to make sure that he doesn't have FPIES.  So now my baby has to go to the hospital in 2 weeks for a peanut butter food trial and potentially an avocado food trial.  

I'm so nervous about it and I really hope that he was just sick and that I had the worst timing ever with introducing a new food.  Was hoping you guys could share some knowledge, experiences (especially with food trials in a hospital!), and any advice or wisdom.  First time momma here and worried sick.  Just praying that he doesn't have FPIES.  

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Hi there,

First off, it is so scary! Your little one reacted after a similar meal to our first, minus the peanut butter (in the night, two hours later - except we didn't catch the first one as she made no noise - she was even in our room!). As a caution, sometimes it takes a while for a reaction to a food, so I'm not sure how many times your LO has had oatmeal, but ours didn't show a single reaction until the 10th exposure and then vomited to the point of shock. It's a really common FPIES trigger (and ours) which is the only reason I mention it.

Second, so glad you got into an allergist! We have done a trial at the allergist's office (in a hospital). You essentially sit a looong time waiting to see if your little one can tolerate a food. It was really anxiety inducing for me because of how scared I was during the real reaction. Ours had outgrown her trigger food by the time of her trial (our allergist diagnosed FPIES then recommended we remove all possible trigger foods (avocado and oatmeal in her case) until around 18-24 months). So we sat and waited and that was it! I do know ours told us they have medicine to stop the vomiting and the reaction if it starts. That was my only comfort. 

Finally, if your little one nurses you can experiment in your diet. Sometimes it's successful and helps you avoid food that might trigger your child. After our allergist suggested it, we cut oats from my diet. Then we moved to trying heavy weeks of other highly likely trigger foods (rice week I'd drink rice milk, eat rice chex, have rice for dinner, etc.) and then we would watch our babes for signs of discomfort and make a decision based on that. Rice and soy were the only foods our two seemed to have soft reactions to so we moved forward with others like wheat and berries and veggies pretty quickly.

We have had two children with FPIES (and the same triggers) and both have outgrown it by 18 months (our littlest is only 16 months but had an accidental exposure with no reaction a few months back). So there is hope! One other thing is our allergist suggested if baby's weight is ok backing off food significantly and slowly introducing fruits or veggies (check the google sheet for the ones kids react to least and start there). This allows the gut to develop more which is what he said is the leading belief around FPIES (unlike other allergies). If you can delay introduction of foods they will be less likely to have reactions to them. So we delayed all major trigger categories until around one year and then started really slowly. It was hard sometimes because they still nursed so much and there was so much pressure from everyone to "feed" them solid foods, but we felt so thankful our babes outgrew them that when the second one had the same issue we knew we could rely on breastmilk to provide most of his nutrition until one with some really strategic and controlled solid introduction.

Good luck with the trial and this journey if it is FPIES!

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