Iowa City Update

Well…. we had a kind of eventful day of appointments, but one I feel good about.

  1. Another evaluation at CDD with psych (who I think are like the gatekeepers there). Teddy was evaluated last fall just as a routine thing they do with transplant kids (because studies show that kids born with kidney failure have a whole host of other issues with growth, development, etc.). He was at that time developmentally delayed, and they recommended therapy, but wouldn’t say precisely WHAT for therapy, and since he’s already getting speech and OT, we just went on with our lives. But since then, I’ve gotten concerned about several things, and in trying to track down what’s going on, decided he needed to be seen again. And so the outcome of last week’s appointment was that they feel he’s even further behind that he was (I concur) and additionally has more problems they either hadn’t mentioned or hadn’t noticed last fall (I concur). He has a full day scheduled in a few months to see OT, PT, ST, Developmental Ped, Psych again, and who knows who else and we’ll see what they have to say. We have a good idea what they’re going to say, but maybe we’ll be surprised. It was nice to have my concerns validated and taken seriously, even if I don’t actually personally like the psych lady at CDD all that much.

    Also, Teddy is seriously a riot. He needs like a half hour with any new person to get out all of his verbal diarrhea. He really needs to tell you basically every random thought that pops into his head. After that, he’s ready to settle down with you. Before that, he’s just not going to move to your agenda. Period. Also, most of his answers make perfect sense IF YOU KNOW HIM. “What is red?”  “Lightning McQueen.”  Yep. He’s not going to say “red is a color.”   “Who wears a crown?”  “King Bob.”  King Bob DOES in fact wear a crown.   “What is this? (picture of a teddy bear)”  “Golden Freddy.”  (A character from Five Nights at Freddy’s, a horror game Wally plays and has a plush Freddie from.)  Dude, you can’t count those as wrong answers!!

  2. Kidney is rock solid. Renal-wise, everything looks great.
  3. Nephrologist wants to switch Teddy from Imuran back to Cellcept. Cellcept/Prograf is the gold standard of immune suppression in peds renal. Cellcept also can really wreck your GI system. Some kids just can’t tolerate it. Teddy was one of those kids. BUT kids often outgrow that intolerance, so trying a switch makes sense. But she doesn’t want to do it until he stops vomiting.

    Fine by me. I’ve been trying to get a doctor on board with figuring out Teddy’s vomiting for a year now. We’ve done all the tests and nobody finds anything, so they all say, “well, maybe he’ll outgrow it.” That’s GI-speak for “we don’t know.” NORMAL kids don’t vomit 3-4/week and even though that’s down from 6-12 times a day… that’s still not 0 times a week. So let’s FIX IT!!

    So the only thing we haven’t tried is something that Chicago GI suggested, which is a new drug for low motility (GI system moving food through too slowly). So we’re going to give it a try. My goal for vomiting meshes together really well with neph’s goal for meds, so I’m in favor. I think she thought I’d resist on the Cellcept, but I really don’t care.

  4. I asked about switching from Prograf to Rapamune. She’s not particularly in favor, but is completely willing to switch if I want to. She doesn’t have a problem with it, just has good reasons for preferring prograf. I think each drug has some serious downsides. It’s like trying to choose between Hillary Clinton and Donald Trump, lol. But there’s no third party candidates out there when it comes to immune suppression.  Prograf has a listed side effect of insomnia. Teddy has insomnia like nobody’s business. I think that’s part of the reason for all the delays. But she wants to make the Cellcept switch first… which I understand… but that means it’ll take a LONG time to get around to the Rapamune.
  5. But that gives us time for a sleep study. Oto suggested we consider a sleep study when he had his last surgery (the trachea scope). I’m ready for it now. Except…now the scheduler says we FIRST have to have a consult with Oto. The same one who ALREADY recommended it to us. I said I’d schedule that consult (which isn’t for 3 months) if they would send the doctor a note and ask her to read his file and make extra double certain that she needs to see us again to recommend a sleep study when she’s already done so one time. Because we’re talking 4 hours of driving and at least 2 hours of waiting room sitting for a 10 minute appointment, and I like that doctor enough to put up with the lengthy waiting room stays, but I don’t think this particular visit is necessary. Plus, For the love of all things holy… 3 months for the consult and how much longer until the sleep study? I need some Fing sleep NOW, people. So does he.
  6. Last, warts. Yeah, I’m losing the battle against the warts. 3 months ago, there were 5. Now there’s 15. Despite my treating them at home. Derm in Iowa City said they could treat them, but we would be just as good seeing a local derm and save us the drive, so we found someone and we’ll see how it goes. (Yeah, warts aren’t a big deal on normal people. But they’re caused by a virus that immune suppressed people can’t clear on their own, so if left untreated, they can get really bad.)

Feeding Successes

Since my last post on the subject, Teddy has made serious strides in eating successes. One evening at dinner, he sat and ate a half of a chicken tender. Just like he’d always done it. Just like it was no big deal. Boom.

Then a week later, he ate a cheese and turkey sandwich – a) like a sandwich (as in, he picked it up and ate it like you or I would eat a sandwich, vs eating the bread and then maybe the ingredients)  b) all of it – the turkey included. Whoohoo.

Then a week after that, he ate an ENTIRE MEAL. It was a chicken nugget happy meal. 4 nuggets, fries, and drink. All. With his mouth. Since then, he’s eaten a lot of chicken nuggets. 🙂

AND he ate a bite from a cheeseburger.

He still balks at most new foods. He had a near panic attack at feeding therapy this week because there was pasta with sauce on his place.

So… progress.