Can-man had his follow up appointment today from his endoscopy. His biopsy came back negative for Celiac Disease, which was a relief. I feel for anyone that either has Celiac Disease or have children that do. Although it has gotten easier lately to manage a gluten free diet, it still can be spendy and it's no fun having to be on a restricted diet while the rest of the world eats whatever the hell they want - blissfully unaware.
I do feel Can-man still has problems with gluten, and is probably gluten intolerant. His GI doctor doesn't seem COMPLETELY onboard with this notion, but he did say if I feel that it helps than to keep up with eliminating gluten from C's diet. I think his GI doctor more feels that if you don't have Celiac Disease, and since there is no testing for gluten intolerance, we can't definitively say that he is gluten intolerant.
There's been too many times that C has either accidentally had gluten or I've "tested" him by letting him have some, since May when this all started, and he'd have problems either that night or the next day. Usually sleeps terribly, waking up in the middle of the night crying, or waking for the day at 5am. All of that on top of constipation and a lot of gas. It's not a coincidence when it's happened numerous times.
After he went back off of gluten once his endoscopy was completed, within days he was eating better and sleeping better, the month he had to be on it was pretty hell-ish. I don't know if gluten is the source of all of his problems, but I do think it is a contributing factor. But enough about that.
One thing the endoscopy did seem to indicate is either acid reflux or eosinophilic esophagitis. Yeah, I don't know either. I'll be getting my Google on as far as the latter is concerned but as for the reflux, C will begin taking an acid blocker to hopefully remedy his inflamed lower esophagus which is what most concerns his GI doctor.
After a period of a couple of months, his GI doctor wants to perform another endoscopy to see if the acid blocker has done its job and C's esophogus has healed, and if it hasn't, our next course of action would be to begin treatment for EE - I'm not up for typing it out again.
That was a little discouraging. I'm hoping all he has is the reflux, the meds help him and C grows up and grows out of it (as I hear happens a lot of times with reflux in kids his age).
I want to leave you with the thought that you are your kid's best health case manager. I appreciate good doctors, and all of the care good medicine can provide, but getting to the bottom of what could be ailing our kids a lot of times falls to us. I don't mean we should be out here diagnosing our children (dangerous) but putting pieces together from doctor A, doctor B and telling doctor C so he/she can possibly better understand what could be going on.
Can-man's GI doctor told me I was smart for noticing Can-man started having a lot of growth problems once he was started on almond milk. C had a cow's milk reaction in December, bloody stool, hives for about a week, a really horrible experience. We tried soy milk, but after a few days, the same symptoms came back so we tried a few other milk alternatives when we finally settled on almond. Well, Can-man settled on it since it's the only one he would drink.
Can-man didn't gain one pound until July, when he started PediaSure after a failure to thrive diagnosis. I have long suspected the almond milk wasn't giving C the nutrients and calories his body needs, and his GI doctor agreed.
I'm not going to beat myself up over it, I'm not saying almond milk is bad, I'm not saying anyone shouldn't give it to their kids, especially when you're dealing with diet restrictions and there's only so many choices. What I am saying is you do your best with the information you have at the time, and you have to learn to adapt and change your course when you see something isn't working. We're all trying to do our best, that's all we can really do.
Thank you to those that offered their support during this time, it's been a little rough, I look forward to R returning from his deployment so he can share more of this with me. Maybe then I will relax a little. For now, the journey continues.