Curmudgeon[ker-muhj-uhn]
–noun. a bad-tempered, difficult, cantankerous person.
[Origin: 1570–80; unexplained]
—Related forms
cur·mudg·eon·ly, adjective
—Synonyms grouch, crank, bear, sourpuss, crosspatch
This, my friends is the perfect descriptor for Mr. Xavier at times, and has thus become his nickname. Curmudgeon has been shortened to "the mudge", or, my favorite, "mudgey."
Anyway, this seems as good a time as any to update everyone on Xavier's video EEG and visits to the neurologist for his "irritability issues". The EEG revealed that he is having several seizures an hour. Some are called tonic seizures, where he throws his arms out to the size, and then relaxes quickly back into a normal state. They last 1-10 seconds, and he remains conscious during them. Others are manifested in hand movements and slight facial grimaces, or don't show up anywhere but the EEG. This definitely warrants treatment, and he started taking Depakote about a month ago.
We (the doctor and Nick and I) chose this particular medication because it also doubles as a "mood stabilizer." The neurologist told us that some kids with neurologic syndromes are just wired differently, and that we can't attribute his moodiness to the seizures. Xavier just happens to be wired to be irritatable. As I've mentioned in previous posts, it was getting pretty bad. From the time Xavier was born, anyone could recognize him as a very tempermental, fussy baby. He cried a lot, was hard to soothe. It got better for awhile, when we did some listening therapy at about age 3 to help even out his reaction to transitions, moving in and out of different places, changing activities, etc. But the last year has gotten so much worse...to the point that our days were filled with more periods of screaming than not. I have a Pavlov dog response to certain noises and events (sirens, walking out of a store, loud laughter/voices, backing down the driveway)...even if Xavier is not with me, I cringe, waiting for the fallout of screams that inevitably ensues.
BUT! I'm overjoyed to report - the Depakote seems to be helping! There's still screaming, but way less of it. It doesn't "blunt" him, he's still sweet, social Xavier. However, I'm not so sure its helping with his seizures. They certainly haven't stopped. But maybe less. We go back to the neurologist later this month. We're on the quest to find the right drug(s) to help him and our whole family live a more pleasurable existance ;-) Its hard to see him be so moody...I want desparately to help my little love...
2 comments:
I'm sorry that Xaviers picture makes me laugh----it looks so familiar?? Like I have seen that expression on someone else..like Carson!!I am so glad that he is feeling a little bit better. Thats good news.
Glad to hear that you have resolved some of the problems and are seeking more help for the remaining problems. I feel bad for the little guy, it's not his fault he's so grumpy...I think you need to change his nickname to cutie pie.
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