Any suggestions please? I'm just about done w/ this crap.

October 8, 2010

Kaleigh is STILL not sleeping through the night and I'm just about done w/

it..I'm just sick of not getting a good night's rest. Her last EEG and sleep

study showed increased brain activity during sleep, but not necessarily

seizures. This is what is causing her to wake up. Okay...so her neuro increased

her seizure med..this was 3wks ago and it doesn't seem to have worked. I called

the neuro's office yesterday and her nurse told me she was out of town. So she

talked to the back-up neuro and basically didn't give me any kind of answer,

just wait it out until Kaleigh's neuro gets back from vaca, but call if she

starts having seizures during the day while she's awake...what?? I'm really

starting not to like Kaleigh's neuro because first of all, she's a lil flaky

about Kaleigh's situation. She diagnosed Kaleigh w/Lennox-Gastaut a few wks ago

because her brain waves showed a POTENTIAL for multiple seizure types, not that

she's actually having seizures. So she basically left us confused about that.

Yet, although she supposedly has Lennox-Gastaut, she's still on Topamax and

Topamax only, I guess this is suppose to be the " cure-all " seizure med. We asked

her what meds specifically target Lennox-Gastaut, and she said Topamax usually

takes care of multiple seizures and so she can just stay on it but increase it.

The thing is: IT AIN'T WORKIN...PERIOD! I'm ready to fire her. I put Kaleigh to

bed at 9:30 and guess what? She's up right now after only 3hrs of sleep. I'm so

sick of this...apparently she's still having some kind of activity while she's

sleeping, seizure or not, it's somthing. This is what I've been trying to let

her neuro know, but she's giving me the ditzy vibe, like she really don't know

what she's talking about. Kaleigh's psychiatrist won't give her anything else

for sleep until the seizure/brain activity during sleep thing is cleared up, so

either way it's a jacked up situation. Is it selfish of me to want my 7hrs of

sleep? Can I at least get 5 or 6? Most importantly I want Kaleigh to be able to

rest. I know some of you have way more challenges w/ your kiddos than I do,

that's why I really appreciate you taking the time to read my posts, Thanks so

much.

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