FPIES

Around the time Ruby turned one, she started getting a terrible diaper rash that would turn into bleeding sores. My pediatrician gave me antibiotic ointment to treat the sores, but was not remotely helpful in identifying what might have been causing them. I asked around to friends and family until Kyle’s aunt (to whom I am forever grateful) suggested I stop feeding Ruby dairy. She said she’d seen other kids with similar rashes who improved when dairy was taken out.

So I stopped giving Ruby cow’s milk and eventually I took out all other forms of dairy. The rash got better, and I was surprised to find that other things changed as well. Ruby used to randomly vomit, and that improved. She also used to get black, tarry poop, and that improved as well. I hadn’t realized that all of these things were connected. She seemed to have a milk allergy.

I wasn’t very familiar with food allergies, and my pediatrician wasn’t helpful on that front, so I took her to a local allergist. He did a scratch test, which came up negative. He told me that sometimes tests come up negative but that kids still have allergies (to which I wanted to know why I’d paid money for a test that didn’t tell me anything). He was generally dismissive and acted like I was being a helicopter mom for taking her to a specialist for something like a milk allergy. I was frustrated, but I figured since I was there I’d continue asking my questions, and when I asked him about the black, tarry poops that Ruby had been having he told me that I had mis-seen the color and that her poop was really dark brown. I insisted that they were, indeed, black, and he told me that if they really were that it meant there was blood in her stool from her gut and that he could refer me to a GI specialist. The way he said it was very condescending and I didn’t want to seem to be making a big deal out of nothing so I didn’t ask him for a referral (I now wonder if this might have been resolved sooner if I’d pressed and gotten the GI referral). He told me to give her soy milk and offer her cow’s milk every now and then to see if she’d grown out of it.

I gave her almond milk and continued nursing. Over the next year or so, her rash kept coming back. It never got as severe as it had when she was drinking cow’s milk, but it almost never cleared up. After being so thoroughly dismissed, I was afraid to take her back to a doctor. But I was talking about it to my downstairs neighbor, and she said that she’d had a similar experience with the allergist in Provo. Her kids had severe allergies and she drove them to an allergist in Salt Lake to be treated. She gave me his name, and I hemmed and hawed about taking Ruby because I was afraid I was making a big deal about nothing. She seemed to be doing better without the milk, so I held off for a while. But as Ruby started to speak more, she would tell me about how her bottom hurt, and when she woke up at night (because Ruby has never slept well), she would cry because her bottom hurt.

While all of this was happening, Sherman had been born and six months later started eating solid foods. When I gave him cheese, he got weird, mucous-y poops, a diaper rash, and vomited. So I figured he was allergic to dairy, too, and stopped feeding it to him.

By this time we were having some insurance issues, and I didn’t want to pay for a specialist out of pocket, but as soon as she was covered again I took her to the allergist in Salt Lake that my friend recommended. I didn’t get an appointment for Sherman even though he had similar symptoms because I figured there was no point paying for two appointments if it turned out this doctor was going to be dismissive as well. But the allergist patiently listened to the symptoms, my experience with the last allergist, and my concerns. He told me that it sounded like she had FPIES (Food Protein-Induced Enterocolitis Syndrome; pronounced F-pies, like apple pies), a rare type of multiple food intolerance/allergy. He did a few more scratch tests, and they all came up negative again, which corroborated his thesis that it was FPIES. It has a different biological mechanism than regular allergies, different symptoms, and it can’t be diagnosed with scratch testing for regular allergies. In some ways it’s more similar to Celiac Disease (gluten intolerance) than it is to traditional food allergies. The good news is that most FPIES kids grow out of it by the time they’re 6, and it can be very effectively managed by avoiding the trigger foods. At this point, I was certain that Sherman had it as well, although he was only officially diagnosed this past Monday.

The other news was that it was more deeply entrenched in Ruby’s life than I had imagined. Symptoms that I hadn’t even considered turned out to be related. Kids with FPIES don’t sleep well because they don’t feel well. Ruby has never, ever slept well. I’ve been up between one and five times with her at night since she was born. Since Sherman was born, and especially since he started eating solid food, it hasn’t been irregular for me to be up 6-8 times between the two of them. But nobody wants to hear that your two year old doesn’t sleep through the night or that your previously happy sleeper of a baby started waking up a lot at night when he was about six months old. It must mean that you’re a bad parent (in fact I recently endured someone detailing to me all the things I could try to get Ruby to sleep through the night; an experience I wasn’t thrilled about).

Instead of being IgE mediated like more common allergies, it is cell mediated and most of the mutiny happens in her intestines, which causes the GI problems like vomiting and diarrhea. In fact, Ruby has been having diarrhea for most of her life. I knew when she started solids as a baby that the consistency of her poop would change and gradually become solid. Her stools became more solid, but never got to look that solid. I had also heard that breastmilk is kind of a diuretic, so I figured that the fact that she was still nursing was what was giving her the loose stools. She was my first baby, and I had not idea what normal poop was supposed to look like. I also know from experience that talking to doctors about your weird poop is one of the fastest way to get dismissed (one of the take-home messages of this story is that I hate dismissive doctors). But the constant diarrhea was also making her dehydrated. Ruby nursed and drank water all the time; I figured she was a busy toddler and all the playing made her thirsty. And hearing that on some days your two year old nurses 10-15 times a day is another thing nobody wants to hear. It says something about you. Possibly many somethings.

The allergist gave me a handout to read that started connecting a lot of dots. As a result, I now knew what I’m looking for an was able to determine that Ruby and Sherman were both reacting to more than milk. Because FPIES is so rare, there is no test to tell you what foods your kids are allergic to. It’s all trial and error. If you feed your kid something and they get sick, you take it out of their diet. The problem was that since Ruby and Sherman were already eating all sorts of foods, I had no idea what exactly they were eating that was making them sick. And since soy–a food they are both now avoiding–is in a ton of processed food, almost everything they ate was making them sick. One day, Sherman got two sores about four inches long up each side of his bottom. He still has scars from it.

After the diagnosis I could see how all of the symptoms connected, but I didn’t know what food was making them sick. But you can’t stop feeding your kids. It’s scary trying to balance not starving your kids with trying to figure out what foods are making them sick. But now I have a list of foods that each of them are avoiding, and their symptoms are clearing up. No more throw up, no more diarrhea, Ruby is sleeping increasingly well, their poop is more solid than it’s ever been, no more rashes. And since I know what I’m looking at, I can tell when they’re having a reaction. Sherman had some dairy cross contamination on Saturday night and woke up every hour all night. But now I know why.

The foods Ruby is avoiding at the moment are: dairy, soy, rice, oats and eggs.

The foods Sherman is avoiding are: dairy, legumes (including soy, green beans and peas which it turns out are all botanically legumes), and grains (rice, wheat, oats, etc.).

I’m not 100% sure that they’re allergic to all the foods on the lists, but when I stopped feeding them those things they’ve both cleared up. After they’re clear for a few weeks I’ll try some of the foods I’m unsure of again to see what exactly they’re reacting to.

This has been quite a process. I’ve had to grieve the fact that my kids can’t eat like normal kids, and that I have to be really strict about other people feeding them. The nursery workers at our church fed Ruby something a couple of weeks ago that made her throw up. Even if we could afford pre-school, it makes me strongly hesitate considering it because I don’t want her to be sick all the time because she’s eating other kids’ snacks or because the teachers aren’t sufficiently vigilant for an FPIES kid. I guess it would depend on how reliable the teachers were about these kinds of things.

So this has been my life for the last little while. It’s been pretty overwhelming.