Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Another Evaluation, more puzzle pieces

Well, April saw us visiting ChildServe again (and remembering why we don’t like that place, lol) for another evaluation. I decided I wanted to see what a new set of eyes would say about what’s going on with him. I don’t want to get into everything, but Teddy just has a hard time with life in general and I don’t feel like we have enough pieces of the puzzle to really help him get a leg up.

So. They don’t feel that he’s on the autism spectrum, since he chats with adults readily and looks them in the eye. I don’t have the written reports yet, but that’s what they said verbally.

They agreed with the ADHD diagnosis.

They diagnosed him with Unspecified anxiety disorder.

They agree with the expressive/receptive language disorder diagnosis.

Their findings included “lack of coordination,” which isn’t new but is the first time anyone’s really just come out and said it, lol. Generally, he passes gross motor skills tests with flying colors, but they weren’t as impressed.

And they noted that he has retained primitive reflexes, and that addressing that issue might help the above issues plus his general developmental delays.

I’ve done some reading on retained primitive reflexes, but it looks like I’ll be doing some more.

They suggested IQ testing, but I think the neuropsychologist we see in Iowa City will be doing that in July. If not, we can always find someone who isn’t ChildServe to do that for us. I honestly don’t really want to. I’m not emotionally ready to find out we’ve got that working against us, too. But they’re the second or third professionals to suggest we want to have that checked, so… sigh.

They also suggested genetic testing to determine what caused the kidney failure but since none of them know anything about kidney failure, I suggested they stuff it. (I did this in my own head, I did not tell them out loud. Nobody seriously thinks the kidney issues might have a genetic cause. There is no Syndrome that causes a different defect in each kidney.)

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CMV and Update

I know I haven’t updated in a while.

Teddy’s had an interesting time since Christmas, but everything is OK.

He started getting high, sudden fevers accompanied by lethargy and just general overall “off” ness, but no ill symptoms. No runny nose, cough, etc. Fever + lack of other symptoms = concerning if you’re immune suppressed. The first time, we suspected flu and ran off to the ped for a flu swab. They did urine culture and RSV and strep, also. Urine came back with white cells, so we did an antibiotic injection and a 10 day course of abx. Ultimately, the urine only grew a common skin flora, which is usually just a contaminant, and nobody ended up thinking he actually had a UTI.

5 days after finishing the abx, he had another high fever (104/105). Back to ped’s office. Same tests. Nothing. Ended up getting admitted to figure out what was going on. Stayed for 4 days, did all the tests. He ended up testing positive for a GI bacteria, though he didn’t have the symptoms of a GI bug. (He did have some diarrhea, but it only started after he started the heavy duty IV antibiotics.) We treated for that. Evidently, his urine grew the same skin flora.

5 days after finishing the abx, another fever. Another ped visit. More tests. Urine grew the same thing. Someone finally says, hey, maybe this isn’t a contaminant. Did another urine culture after being sure to clean him REALLY REALLY WELL, and it grew the same thing.  Treated that, no more fevers.

After the first fever, we also ran all the “you have had a transplant and you have a fever” blood tests, which includes the three viruses that we monitor. (CMV, BK, and EBV.)  The CMV came back quite high. He’s had elevated CMV before that was no big deal, but this time it was REALLY ELEVATED. So I spent a Saturday driving to Iowa City to pick up the really expensive drugs to treat that. But this complicated the whole “what is wrong with him” situation, because CMV also suppresses the immune system (meaning that it leaves you even more vulnerable to lots of horrible stuff), and then CMV itself and ALSO the drug that treats it both suppress your bone marrow. So his hemoglobin dropped like a stone. So the CMV plus the fever plus no symptoms had the doctors quite concerned, but I think it turned out to be JUST the UTI plus the CMV.

Took a few months, but we got the CMV back under control. As of the last time we got labs (2 weeks ago), the CMV was back down to 0. We have to treat it for another 3 months and then we can finally drop that drug.

In the meantime, all the ick meant Teddy stopped eating and drinking. It’s been about 2 months and he’s finally back to drinking as much as he needs to orally now, but we’re still climbing out of the ditch when it comes to eating. Last week, I got him to eat cheese and one serving of oatmeal. This week, he’s has macaroni and cheese twice. But otherwise, he’s devolved back to eating just chips, which isn’t exactly the foundation of a healthy diet.

So there you go.

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