Friday, January 11, 2013

A new diagnosis code:

Immune Dysfunction.

Which is still very broad and there's no magic med for it, but at least it's better than Failure To Thrive, which to me is the stupidest diagnosis ever, because it's not a diagnosis, it's a symptom. Argh. Anyhooooo.

So we are driving back from Black River, NY with two of the BEST behaved children ever. The drive up yesterday took 8.5 hrs because of stopping to let kids play out of pity and some extra time spent pondering the blood covered shoes at a NY truck stop.
We checked into our hotel, fed the kids my pre made pancakes while they ran around naked (nuuudiiieee....sigh), and put them to bed while we ate in the sort of quasi-living area of our room. I was so impressed that Eve went right to sleep, because she's used to sleeping in her own room with the door closed and lights out and no distractions. I was so optimistic til she woke up crying at around midnight and there was no getting away from it. I was so tired I laid her next to me where she spent the next several hours wrestling me, chit chatting, and poking me in the head. James slept through it all. I think she fell asleep again around 2 or 3 and we were all up somewhere before 6. Good times.
The NNY Clinic is actually in a revamped house. So it took a little bit to find cause I wasn't looking for a house. They should probably warn you. Anyway, it was mostly consulting and going through the history and coming up with a game plan. We have a sad sad and long list of labs that we will have drawn at home. That'll be a really bad day. But I was happy that this particular visit was trauma free for James. He knew we were going to discuss foods to make his tummy feel better, but as soon as he saw he was in a waiting room he burst into tears. Poor dude. They were so nice though and soon, though he kept asking to go home, he was playing and even talking to everyone.
So the reason we came to this place was because seemed a little more open to help with dietary changes in a child with James' degree of oral and feeding aversions. With a kid who eats typically, many times you would start with a elimination diet and go from there. That's just not going to work in this case, and I liked how they discussed options. For now we stick with gfcf and continue to try to find a nondairy Pediasure that he will drink.
We will start on a variety of supplements to up his nutrition. Nothing crazy but making sure we pick as natural products as we can. After the labs come back we will discuss the next step. The suspicion is on a genetic dysfunction of the methylation process rather than a viral issue as many, but not all, NIDS kids have. It is testable and there are a couple different ways to treat it. It's only one piece of the puzzle, but basically if that process isn't functioning properly, then the body's cells aren't able to function, which affects everything, including digestion. 80% of the immune system is in the gut, so it's a pretty good indicator when something is off.
Honestly, I have a lot more research to do before I can discuss it semi-intelligently. But that's the gist. We will hopefully know a lot more after the dreaded labs get done. And we will try to do them next week.
Got about 5.5 or 6 more hours left on the road trip! Not counting breaks so Eve doesn't freak out and yell at us. But Tom's pullin up on the steering wheel like we used to do back in the day of driving horses all over the country, minus the NoDoze, Red Bull, and Skoal (I think).
Successful trip. Plan in place. Fingers crossed. And legs. Time to stop at another truck stop...

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