Down the Rabbit Hole We Go

I mentioned in a previous post that I was not able to get my son’s acid reflux under control and that the stress of dealing with that was ruling my life at the time. We had some testing done on him and came away with a completely new diagnosis for Liam. I’ve had a couple of days to mull it over now, so I still don’t know much, but I wanted to write about the experience as it was going on.
First the great news: He no longer has acid reflux. This was something that must have changed very recently, as we had been seeing lots of definite reflux symptoms in the months before we took him to be tested. My first clue that this might have changed was when the doctor had us discontinue his reflux medicines two days before the tests were to begin. I expected to have several days of no sleeping. It didn’t happen. He was really upset by the pH probe test and by being in the hospital and didn’t sleep much the night of the test, but before the test began, he slept through the night. I was so shocked I had no words for it. And he rebounded quickly when we took him home.
The less great news: He has eosinophilic esophagitis, which is when you have an undiagnosed allergy and your white blood cells lodge in and irritate your esophagus. This would explain why he’s been such a poor eater since he was ten months old. But it’s really vexing as well. You see that I didn’t link to anything above. It’s a new disorder. I didn’t know such a thing existed. I had assumed that all the ailments people get now have been with us all along and they were just poorly understood or misdiagnosed. But apparently things really can change. There’s not a lot of information out there. The GI doctor’s nurse said they’d only been seeing it for five years or so. A website dedicated to the disease says it was identified in the ‘80’s.
It’s hard to see symptoms in small children like Liam. Older kids and adults can describe symptoms, but I guess Liam’s case is not severe enough to cause choking, so no one really thought it could be this until I complained to the doc that my 2.5 year old still had acid reflux. Apparently those two disorders are related and some percentage of kids that don’t outgrow reflux on time have developed EE instead.
It is a consequence of allergies. This worries me. All along, I’ve been telling myself that at least Liam isn’t allergic to anything. Liam literally has had no symptoms of allergy, food or otherwise. Allergy testing is very unreliable, but when you have outward symptoms of allergy to look for, you can use those as a gauge for whether or not your child is really allergic to what the tests come back saying he’s allergic to. In this case, we don’t have that. I think the course of action is to get allergy testing and then see if he seems to feel better and if not, retest until he does. I got the impression that there would be more endoscopies to check if his esophagus had cleared. I’m still a little fuzzy on the details.
I keep going back to what has changed over the years, symptom-wise.  He ate everything we put in front of him until he was about ten months old. Something changed and he wasn’t willing to eat much of anything after that. He regards new foods with suspicion and will often do anything with them but put them in his mouth. He had an endoscopy done at six months old and it came back clear. Does this mean he’s not allergic to milk and soy, since I wasn’t on a restricted diet at that point? And the big fears that come back to me are that he would be allergic to milk or wheat. Of course, that’s just on top of the fear that he would test positive for wheat allergy and it be a false positive that would force us to take away virtually everything he eats now. I’m in the strange position of hoping it’s just peanuts, or just fish, something he doesn’t eat too much of now. And I find that hoping for a particular outcome, trying to prepare for whatever seems right now like it would be the worst case scenario, all of that is me just superstitiously trying to affect the outcome. And it is beyond my control. I’m trying to put on my big-girl pants and remember that it is fundamentally illogical to dread hearing the news that my child has to go wheat-free or something like that. If we take away whatever is bothering him, he will feel better and it will get less burdensome in time.
The reality that I’m trying to confront anyway is that a lot of what bothers me about Liam’s dairy intolerance is my own ideas about childhood and how not being able to buy him an ice cream at Baskin Robbins is a terrible tragedy by my own personal standards. It’s not like he knows what that’s like and misses it. And if he can’t eat wheat, there are a lot of foods I’ll have to take away from him and he’ll be upset about it, but he doesn’t eat cookies, doesn’t eat cake. It’s not like he’s going to know what he’s missing by not being able to eat birthday cake or Christmas cookies. It’s mostly just my feelings about those things, and how I feel about not being able to share them with my son in spite of being able to enjoy them myself that bothers me.

Tomorrow we go for the (second) round of allergy testing. It will be different from the first time, since now we know he has an allergy and we have no idea what it could be. I’ll write more from the other side of this first leg of our journey. Wish me luck!


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