Wednesday, August 28, 2013

Destructo and FPIES, Part Three of Three

So the rest of the winter of 2010 passed more or less, without incident for Destructo. He remained on Nutramigen but battled reflux, head to toe eczema, and didn't sleep like a baby should. Regardless, we thought he was still meeting milestones and at his four month well check in April 2010 we got the go-ahead to start him on solids. We started with homemade pureed apples and pears and he did well with them, no issues. He also saw a dermatologist during the first half of April since his skin was so terrible.

One Saturday I was a bridesmaid at Destructo's godmother's wedding. Those few hours I was away from him getting ready and during the ceremony were the longest I'd been away from since he was born! I was quite anxious about it, actually!

The day after my friend's wedding we decided to introduce peas to Destructo. He loved them and ate all four ounces. Two hours later, he began dehydrating again. Back to the ER, and this time I called the pediatrician's office to let them know we were on our way there. One of the nurses in the ER, who remembered our previous visits, was the first person I remember to make the connection that soy and peas were both in the legume family. Since legumes for Destructo.

Fortunately, Destructo did not react as badly to the peas as he did to soy. We did not have to transfer to the children's hospital, and said two nights and three days at the local hospital just for observation and rehydration. The first night we were there, Dr. C came in with a can of Neocate Infant and told me that it was an even more gentle and hypoallergenic formula than the Nutramigen. We started him on it the next day after he kept Pedialyte down. By the next day almost all of his eczema had cleared up. I eventually learned that Nutramigen still contained soy and dairy derivatives. After a few weeks, we noticed his reflux had improved a little too.

In July we finally got to see an allergist, when Destructo was about eight months old. The first and second rounds of bloodwork showed no IgE allergy to soy or peas. "IgE?" you say? "What is IgE"? For anyone who has ever gone to an allergist and gotten blood work or a prick test done, these tests are to test Immunoglobulin E (IgE) levels, and it is type of protein in blood plasma that acts as an antibody to activate allergic reactions. About 50% of patients with allergic disorders have increased IgE levels in their blood serum. People who need

EpiPens for bug bite or peanut allergies have IgE reactions that cause life threatening reactions. Anyway, the allergist had a feeling that Destructo's allergy to soy had something to do with his GI tract so she referred us to a gastroenterologist.

This is when I started obsessing collecting my son's medical records. I was fortunate enough that my son's doctor's did not charge a cent for this.

Sometime between seeing the allergist and gastroenterologist I had been utilizing Dr. Google since waiting was giving me no answer. That was when I discovered FPIES. Then, after getting Destructo's records from the allergist, she had also mentioned it. At this point his normal pediatricians had only diagnosed him with MSPI.

So when we saw gastroenterologist that August, I asked him about FPIES. He told me it was very possible that Destructo had it; however it was a clinical diagnosis; they had to rule out other things and pretty much diagnose it by process of elimination. So aside from his medical history, the GI said the next step was an upper endoscopy. At this point Destructo was only nine months old and since we knew his triggers, he wanted to put it off until he was a little older.

And I learned that FPIES is different than IgE allergies. It is a T-cell mediated allergy. I can't explain it better than that, but this is why the soy and peas did not show up in his allergy blood work or prick tests.

That December, Destructo did have another hospital stay...but only because the stomach flu stomped through our household, saving only my father. So we did stay in the local hospital for three days, his pediatricians admitted him just to be safe and considering his medical history. In fact, the bug hit me while I was in the hospital with Destructo, and at one point Gramma D was downstairs with my brother in the ER who was getting treated with IV fluids. At least they let her come upstairs and visit us in the middle of the night. There were several nurses who remembered our previous visits and were very sweet to us. The day we were discharged Thomas was very energetic, and we took a few walks around the small ward, which was a little tricky given that he was still attached to the IV!

They had to bandage his hand to keep him from pulling the IV out. Also, you can kind of see how big his head was at 13 months old. And...the hospital, had very old drop side metal baby cage hospital beds.

Fast forward to May 2011. I'd been fighting to get insurance coverage for the toddler version of formula (Neocate Junior). I did eventually figure out my way through the red tape. I knew it was covered by law in our state. But during this process, I talked the gastroenterologist into the endoscopy, because if I had a diagnosis it would help with medical necessity. He agreed. May 2, Destructo had his upper endoscopy at the children's hospital, to rule out celiac disease and Eosinophilic esophagitis. He came out of the procedure saying other than a little bit of irritation from his reflux, everything looked perfect. Barring anything unusual coming back from the biopsies, he was certain Destructo had FPIES.

Once we got the insurance coverage for the Neocate Junior, his reflux disappeared over night. Wondering why, I compared labels. The infant version had 6% soy; the toddler version had none. That 6% was not enough to hurt Destructo, but apparently enough to give him reflux.

And it was also around this time that we started Early Invention for Destructo, but that is an entry for another day. :)

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