Monday, October 5, 2015

A suspected FPIES diagnosis

I guess I also could have titled this “Getting to the Bottom of Sweet P’s Tummy Issues: Part 4,” but this is a new adventure for us, so I figured I would start a new series of blogs on helping Sweet P get to the point of being able to handle solids. 
As of right now, at 9 months, we are still thinking that our sweet girl has FPIES, but there hasn’t necessarily been an official diagnosis since it’s a tricky condition to diagnose. But, I wanted to share our story of how we have arrived here.
At 5 months old she was still on 50% donated breastmilk from dairy-free donors, and 50% on Alimentum formula. I thought it would be fun to try some solid foods with her since with the buddy, it took a few months to get him used to eating food, and definitely a few weeks before he even swallowed what we fed him on a spoon. But, surprisingly, she took to it right away and ate a full baby jar of sweet potatoes on her first try! She was excited about food! I was so excited because feeding the buddy was such a struggle for so long while he was low on the growth charts, so I thought it would be so much easier this time around.
After that first success I introduced a few other first foods, like bananas and squash, but after a few days she had burning diarrhea. It was so bad that she screamed when I tried to change her diaper. I felt so bad, but decided her tummy wasn’t ready for solids yet, which didn’t matter since the American Academy of Pediatrics doesn’t recommend solid food until 6 months anyway. But, when I returned to solids again at 6 months, the same thing happened again.
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She sure loved eating those sweet potatoes! Too bad her tummy ended up not liking them.

I emailed our pediatrician and let her know, and she suggested that Sweet P might have FPIES. I had actually heard about it before, but didn't know exactly what it was and did some research. To really simplify, it's a food allergy that affects the digestive system instead of the typical IGE allergic reaction (rashes, hives, difficulty breathing, etc.). In the most severe cases (which is actually pretty often), children have severe vomiting, even vomit-to-shock reactions to foods. Thankfully we have just dealt with diarrhea so far. Our pediatrician let us know that the most common trigger foods are dairy, soy, oats, rice, sweet potatoes, squash, green beans and peas- pretty much all the first foods!

With an upcoming beach trip with family, we decided to give her some tummy rest and go back to all liquids and would start with uncommon trigger foods when we returned. After about 3 weeks we started with apples, carrots, and blueberries. We started really slowly with just a few bites of apples, and stuck with just apples for 4 days. After she did well for 4 days, we added carrots, which also went well! Hooray! Then, we did 4 days of pears and planned on 4 days of blueberries. However, on day 3 of blueberries she had the awful diarrhea again. So, we thought this meant blueberries were not a safe food for her and planned to stick with the other three foods for awhile.
The problem with FPIES is that there is practically no research or definitive research on it. Until October 1st of this year, there wasn’t even technically a diagnosis code for it for insurance purposes! Very rarely do doctors have much experience with it, and there are many stories of parents being told their children just have bad stomach viruses as pediatricians or even allergists haven’t even heard of it. So I joined some online FPIES support groups and listened to the advice of other moms there who said that when their kids have a bad reaction they remove all solids from their diet for a couple of weeks. Our pediatrician said she didn’t have enough experience with FPIES to know the best course of action and thought a gut rest would be fine.
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Big brother enjoyed feeding her while that lasted.
We took a break for over a week and then added apples and pears back in and the diarrhea returned right away. After we tried carrots she had a huge vomiting episode. We were so disappointed and sad! We thought these were  safe foods for her and now we felt nervous giving her any solid food at all. With our upcoming move, we decided to go back to no solid foods until we could get into an allergy specialist. I got connected with a local mom whose daughter has FPIES and she recommended the allergist that they had been seeing.
In the meantime we were packing and moving and I did some research. The idea of continuing to try foods and just see if Sweet P would react didn’t sound fun to me. I got connected with another mom whose daughter had FPIES and was healed and eating regular foods within months after doing the FPIES after following the GAPS protocol. We continued to research and see what options we had and decided to go the GAPS route, which will go slowly and be quite a bit “outside the box.” More posts on that to come!

1 comment:

  1. Poor Sweet P :( I hope you guys figure out something that works for her ASAP!

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