This morning Dr. G called back. He basically agreed that Mr. Charm might possibly have a milder form of FPIES, and he thought our idea of a self-made elimination diet wasn’t bad. He said most doctors won’t suggest elimination diets unless they’re absolutely necessary because most people don’t want to do them. Therefore, they won’t do them. But he, himself, has food allergies, and did an elimination diet to determine his trigger foods, so he was on board with our idea.
His only suggestion was that we meet with a nutritionist to make sure our self-made elimination diet stayed micronutritionally sound for all three of us. That’s not a bad idea, and he said our local allergist should have someone she recommends.
He also mentioned something called “Heiner’s Syndrome”, which is another form of food protein intolerance. It seemed like Mr. Happy was showing symptoms of Heiner’s Syndrome in the hospital. He had shallow, fast respiration, chest wheezing, bloody stools, etc. I was okay with the idea that Mr. Happy had FPIES and Heiner’s Syndrome, except that I’ve been dairy free since March! Mr. Happy has never been exposed to dairy! And Heiner’s Syndrome, from what I’ve seen online, is strictly a dairy protein intolerance. Dr. G, of course, said that it is only ‘mostly’ dairy protein intolerance. So, I guess we don’t know if he has a secondary condition to deal with, too.
We called our GP and she had a dietician/nutritionist she recommended for us. We were able to get an appointment for next Tuesday at 2:30 p.m. Even better? It is covered by insurance. Nice!
In unpleasant news, two times today we witnessed Mr. Happy having a classic FPIES reaction. I feel so impotent! He’s having a reaction to the Neocate, but I have nothing else to feed him! He’s breathing shallow and fast, sweating a lot (although it is 103 degrees here), and twice today spit up so much that it had to be a small vomit, coughed and hacked and looked miserable, and then crashed.
We have no idea what to do. Please pray for him. And us.