Tuesday, July 28, 2009


Yep; you read correctly.

Last week, we had Evs in for a Botox treatment. No, not to treat any premature wrinkles - this was to treat her spasticity. While injecting a neurotoxin into your 2-year-old isn't really high on anyone's list of fun stuff to do around here - it has helped many in this regard, and is otherwise proven safe enough (if not by those that do it cosmetically).

The basic idea is this: The Botox is injected into the "problem" muscles; that is to say, the ones that Evs often has "locked" due to a spastic episode. For her, this includes her pectorals (leading to pulling forward/hunching over), her thighs (leading to locked knees), her calfs (leading to tight ankles), her elbows... etc. Over a week or two, the Botox starts blocking the release of certain neurotransmitters that aid in muscle contraction - rendering her muscles able to contract less; thus hopefully helping with the spasticity.

We'll have to "play it by ear" and see how it goes ('cuz that's just how we have to roll around here) - but ideally, it should help her spasticity, for a period of 3-4 months.

At any rate, we had that done last week, and have definitely seen some improvements to her tone. Evs has been working on some teeth between then and now, which typically causes her tone to increase (as well as increased seizures, but so far, we've avoided any ER episodes) - but we're hopeful that this is an overall "good thing" for her - so far, it seems to be.

In other, "more fun" news - Evelyn has also been making great use of a communication device and communication switches. I'm going to save more on that for a separate post - but we're really excited about the possibilities with being able to help her tell us about her copious - and strong - opinions. ;-)

At any rate - that's the latest!

Sunday, July 5, 2009

Spasticity & Seizures

Hi all -

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!