Wednesday, January 13, 2010

My Hunch-FPIES

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! :)


  1. Hey, thanks for directing me to your FPIES blog. I was wondering if you've yet gotten the "official" diagnosis.

    We've been working with doctors on this since October and we still haven't gotten an official diagnosis. Although I am 110% certain that what Noah is suffering from is FPIES.

    He's been tested for EVERYTHING else, it seems. Upper endoscopy, gastric emptying study, stomach biopsies, and many, many, x-rays have all been done. The gastric emptying study showed that his stomach empties unnaturally slolwy, and they prescribed reglan (scary stuff) and told us to start trialing foods again. We did and that's when we had our first reaction 4 months...which was to green beans. He's off reglan now, thank goodness, because I felt it wasn't helping.

    The GI we were seeing has basically conceded that it probably is FPIES, although he still isn't offering an official diagnosis because "FPIES is for an allergist to diagnose."

    I want a diagnosis for three specific reasons 1.) then we could have a copy of the FPIES letter (have you seen it on the internet?) to take with us to the emergency room and childcare providers 2.) so we could reattempt to get insurance coverage on his neocate junior formula and 3.) so people will stop thinking I'm crazy!!!

    I'm sorry you and your son are going through this, as well. But I Will tell you it's good to hear from moms going through similar situations. If it wasn't for the FPIES information on the internet, I still wouldn't have any understanding of what was making my son so severly sick. I also might have tried feeding him all the wrong foods! (dairy, chicken, etc.)

  2. Hi there, thanks so much for posting your blog. My name is Nic and I am mummy to my gorgeous boy Gethin who is 6.5months old. We live in the UK.

    Your story rings many bells for me so I wonder if you can help. When Gethin was born I initally breastfed but after severe weightloss the hospital asked to introduce formula top ups. After a week the 'colic' started properly although truth be told he has been unsettled from day 1! At 4 weeks old they switched his milk to lactose free (I stopped Bf) and at 5 weeks was diagnosed with reflux. By 7 weeks he had blood in his stools so we were switched to Nutramigen and he was put onto Omeprazole for reflux which was classed as 'severe'. Cows milk allergy was suspected.
    The first 5 months were a nightmare - I don't quite know how we got through it. Sickness continued, we had very little sleep and a very unsettled baby. We then saw a dietician and he was swtiched to Neocate and things improved until we started weaning.

    So far Gethin has also reacted to rice - the same 'spasms' suggestive of tummy ache returned, the sickness increased and again he was crying most of the time and sleep was non existent. We stopped the rice and moved on to Sweet potatoes which seemed fine but then a few days later the same thing started to happen. So we stopped the aweet potatoes. However the worst reaction was to normal potato. After this he reactd within 6 hours, the same as before but worse - nothing helped to ease his pain. We had 4 hours of inconsolable crying - he was distressed and in terrible pain. He only calmed when we gave him a very small diluted feed. Then he seemed really tired and slept until 8.30am when we woke him. He was so incredibly pale, not himself at all and then later in the afternoon he had terrible diarrhoea twice. It took him 2 days to get over the reaction.

    Living in the UK, no-one has really heard of FPIES and because Gethin is a healthy weight although I suspect it, I feel that if it were truly underlying then his weight would be affected. Has that been the same for your little man?

    Apologies for the long post but I am seeing our paed and dietician on 9th July and I want to go in knowing as much as possible. All these problems and he has never even had a scan!

    I hope your little man continues to do well. He's got a champion mummy that's for sure! Thanks so much for sharing your story
    Nic x