I thought I'd drop a brief update on Evs, since we're about 3 months overdue. Evs' last round of hospitalizations ended up - finally - with a diagnosis of spasticity, which is essentially uncontrolled tightening of her muscles. It's not uncommon with neurological disorders, but it really took us a long time to get to the diagnosis - we worked through her entire GI system; checked the her intracranial pressure; did a full-body scan for broken bones... you name it. We even, actually, asked about dystonia or spasticity, but were assured it was not - after seeing a doctor specializing in it, he diagnosed & started treating for it - and Evs started feeling a lot better. SO - frustrating that it took us so long to get to that answer - but, happily, we finally got one.
After that episode, Evs had a reasonably-good run of it, until mid-June or so - including a week at the beach, which of course she enjoyed. ;-) Partly owing to higher-tone from the spasticity, her ankle tone has been very high, so we got some new AFO's made. But, all in all, she had a good May - mid-June; doing therapies, and generally being a happy kid. :-)
Around mid-June, we believe that she started working on more teeth, and - as is her habit with teeth - had some prolonged seizures, that none of her emergency meds would touch. So, she landed back in the hospital for just shy of a week in late June. She was discharged on a short-term regimen of Dilantin, which we'll keep for a week or two to "bridge the gap" while ramping up her existing Lamictal a bit more. That's kept her a little drowsier, lately, but we're hoping that will prove short-lived - shorter-so than the Dilantin regimen itself.
Anyway - that's about the latest, here! Happy 4th of July!
1 comments:
Thanks for the update, Daniel! I'm in Athens now, so perhaps we can get together for coffee or something. Hang out at the Fry's Electronics at all? ;)
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