We had a great clinic appointment today. Though we have to get labs every 2 weeks for a little while, we don’t have to go back to Iowa City for TWO MONTHS. Two months. 8 weeks. Literally, we have never ever ever been to Iowa City any less frequently than every 4 weeks, and I think it’s only been maybe 4 times total that we’ve had 4 week appointments. 8 weeks. Yowsers. I’m going to forget how to get there! My tires, unflushed transmission, and gas budget won’t know what to do with themselves.
1. Teddy’s labs are stable and really nice looking. Finally, everything is mostly within normal ranges, and the things that aren’t are not panic-inducing.
2. Weight. Teddy lost a half kilo last week from diarrhea, but his labs remained good. Dr. Z said she thinks we finally have Teddy to the place where he can have diarrhea and even lose a little weight from it and not get dangerously dehydrated. Like normal people. Yay. I’m still to call if he loses weight ever again, though. 🙂
3. Diarrhea. Teddy still has ongoing diarrhea. It wanes and waxes but never goes away. I’m seeking a second opinion with a local GI doctor. Somewhat to my surprise, our nephrologist was really happy I’m taking that step. I’m just not willing to accept the UI doctor’s diagnosis of “toddler diarrhea – nothing can be done about it” without another doctor agreeing with that. When I read the symptoms of Toddler Diarrhea… it just doesn’t seem to really match up. It seems more like “Let’s Call It This Because Then We Don’t Have To Admit We’re Baffled.”
4. Vomiting. Vomiting is getting better all the time, but he still vomits. His labs don’t contain anything that should be making him vomit, so neph and I both think there’s something else going on with his GI system.
5. Eczema. Teddy’s developed Eczema on his legs and arms. I’m thinking it’s dairy, which also caused lots of problems with Wally. He hasn’t had dairy in his diet because of this, but we will literally put every food we own in front of Teddy and see if he will eat it, lick it, or even touch it, and he one day decided he’d eat shredded cheese. He also sometimes eats yogurt and he LOVES chip dip (which I let him have because he eats it with chips, and dry/crunchy is a texture I’m trying to encourage – unfortunately, he never actually eats the chips, and in fact goes to great lengths to spit them out if they break apart in his mouth). So ALL of his oral foods are dairy. Neph didn’t think dietary changes were necessary at this time, since it’s a change of seasons and the eczema could easily be something else. I’m probably going to go ahead and get nondairy versions of Teddy’s foods anyway, see if he’ll eat them, and if so, we’ll pull dairy for a month or two and see what happens.
6. Genetics. We still haven’t heard from genetics. Last I heard, nothing had come back concerning, but evidently that was because nothing’s come back, period. Urg. They’re still wrangling with insurance, and when I say “wrangling with insurance,” I mean, “not taking the time to pursue it with insurance, since they didn’t perceive this as particularly urgent.” Which it’s not, but it still needs to be done. It’s been since June. I was especially glad that our nephrologist didn’t make me feel like a paranoid jerk over this, she said that she herself has been anxious to see the results, particularly since they had mentioned some really horrible things to her that they were testing for. We agreed that we both realized that, since these things are rare, that chances were that he did not have any of them, but at the same time, now that it’s been talked about as a possibility, we both really just want to know. She brought up LaFora Syndrome, which is the one I have been calling the Terrible Awful. Genetics will also eventually hopefully be able to finally answer the question of whether he has an MCAD deficiency. If he does, it’s not presenting in a typical way, but this is Teddy and since when has “typical” ever come into play? Right now, we’re assuming he does not but yet being cautious.
7. Neurology. I mentioned my concerns over the Breath Holding Spells (BHS) and that Teddy’s going to see his ped next week about this. Late last year, Teddy lost consciousness twice in one day and was diagnosed with BHS. It’s an involuntary reaction to strong emotion that causes a child to stop breathing momentarily. In many children, it happens when they’re particularly mad, when they’ve had an injury, etc. Teddy’s has always, always happened after a blow to the head. Only a blow to the head. He’s taken some legendary falls that didn’t involve his head and cried very very hard and been fine. And he’s had some relatively minor bumps to the head that make him stop breathing. That’s somewhat strange. But the other strange thing is that he always vomits afterwards, and nothing in any of the literature I’ve found mentions vomiting. So I’m telling our Neph because she’ll get the office notes on it from the ped and I just wanted her to know, and she got somewhat concerned. (I guess some of the things they’re checking Teddy’s genes for – or not checking, as the case may be – are seizure-related.) So she said to talk to the ped, but if there was any question at all that there might be more than just regular-kid BHS, she wants us to see neurology.
8. Elevated LFTs. His Liver Function enzymes are still high. Nobody knows why.
That might have been it.