Join Date: Mar 2005
Location: crocheting a new tinfoil hat
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Okay, so Maura has gone back to her new normal, after being off all weekend, after missing a dose of her seizure meds (Trileptal, given three times a day.)
Backstory - she started them about 7-8 weeks ago after a complex partial seizure and since being on them, has started talking a whole bunch more and understanding more. Saturday we missed hte morning dose and she was stumbly the rest of the day and the next day was stumbly and didn't say much, kinda stimmed a lot (she's not a stimmy kid.) Monday, she was better, Tuesday back to the new norm.
Dh and I have been thinking there has GOT to be some connection, that maybe she's been having seizures for a long time and no one caught it. Her EEG was abnormal, as a baby, she startled a lot even though loud noise didn't bother her much (she could sleep through the tornado siren a block away), and her teachers noted how some days she'd be on, other days she'd be off - but not in a stubborn, didn't want to do it way, but more out of it, tired way.
There has to be a connection. She has improved so much and when we missed the one dose, it was so obvious! Like today, when she got up from her nap, she had pooped in her diaper and I said "Ooo, let's change you, you're poopy." And she groaned a little and patted her bottom as if to say "Oh dear." I said something like "You don't like being poopy, huh?" and she said "No no no." A whole little interactive conversation and acknowledging bodily functions and all that.
what should I ask the neurologist at our next visit? What other tests do you think should be run? Could this be something metabolic? Should I start reading up on that seizure diet (which really pains me to say, but this time, the diet solution would be based on something we actually know she has and not something someone read off the internet, lol!)
I am not thinking "Oh, we'll finally know what's causing the problems!" because I still don't know if we'll get anything other than "Maura Syndrome" for her. But it is very apparent to everyone that going on seizure meds have cleared up her brain a bit. The progress has been unbelievable for Maura. Heck, I may even get her potty trained before she's ten! LOL!