Today, a friend of a friend contacted me whose son was recently diagnosed with FPIES or Food Protein Induced Enterocolitis Syndrome. This is what I BELIEVE (and I say that strongly) that Kyle has. She had some questions for me and I decided to write down a brief synopsis of what led me to conclude that to maybe help other Moms out there. Here is some of what I wrote to her:
From about 2 months I have cut out the dairy and soy b/c of the symptoms you'll read about on this blog. Before ever introducing rice or any solids, I saw a GI and he just said, yep it's the dairy and soy...keep eliminating them. However, I realized something else was up at about 5 months.
We introduced rice, and he gobbled it up! However that night he was up like every hour crying and inconsolable. I thought, that's weird...maybe it's too early. Talked to GI over the phone and they said that we should try a single grain rice. We did. So, I bought a single grain, organic rice cereal and tried it again. That day he was a crazy kid. For about 8 hours straight, he would not let me put him down. I thought he maybe had an ear infection or something. I literally held him all day while he screamed his head off. I thought...maybe it's the rice again? Then he had a huge nasty diarrhea and was totally fine. We decided that he just wasn't ready and to wait until he was 6 months.
So, we waited until he was 6 months to try grains again. I had read that some kids tolerate oatmeal better, so instead of trying rice right away, we tried oatmeal. We did that and 4 hours later in the middle of being asleep he woke up, and vomited everywhere! I thought...that's crazy, and just not normal. After he threw up, he was totally fine again.
That's when I started doing research on my own. I heard that both rice and oats were not typically a high allergen food, and that is when I ran across FPIES. Everything clicked! While Kyle did not have the severe, going limp reactions, I read that cases could vary in severity. Plus, I have thought...since blood showed up in his stool when I ate dairy and soy and he has never actually ingested it, maybe if he were to eat dairy, he would have the extreme reaction. Because me eating rice and oats does not cause blood in his stool. Thank goodness!
So, I brought this up to my PED at my 6 month well, and I could tell by her reaction she didn't really know what FPIES was. She just kind of brushed that aside and told me to just do fruits and veggies and no grains for a while. That's what we did.
When he was 9 months my husband pushed for me to try rice again. His thinking was that maybe his gut has matured a little and he will now tolerate it. So, against my mother's intuition, I did it. I put him down for a nap and like clockwork at the 4 hour mark he started vomiting in his sleep. I got him up and cleaned up and then he vomited again 2 hours later. Luckily, he never went limp or anything like that and after the second vomiting episode, he was playing normally again. That experience sealed the deal for me on the fact that he has FPIES.
Kyle still has difficulty eating solids. He still has the reflex of thrusting his tongue out when he eats. We are seeing a speech pathologist for FREE through the early childhood development program. They are not sure if they can help us with his issues yet, but they will at least evaluate him in OUR home for free and see if they can help with the gaggin/vomiting and difficulty swallowing. Kyle was on Zantac for a few months to rule out acid reflux. We did not see a change in his eating or night waking. I had an occupational therapist recommend ruling it out to see if that was why he was having aversions to food. We took him off the Zantac b/c I don't think it helped really.
We are all up to date on shots to this point (although he turns 1 on Sunday) and we have had no reactions. However, I am going to delay shots at this point. Mainly, I want to heal this kid's tummy before I continue to put stuff into his system. I will get him up to date eventually, but since he is not in daycare, I'm not too worried about delaying shots.
Kyle has an appointment with a Pediatric Allergist at Primary Children's hospital her in Salt Lake City. Hopefully we will get the "official" diagnosis then, although there is no doubt in my mind that this is what he has. I'm going to try and keep updating on our journey through this thing in the hopes that it will help another Mom out there when they are trying to figure out what is behind all those yucky diapers! :)