Re: Carn-A-Ware/Rose-Marie/

April 12, 2004

--

I hope the seizures are settling for Langan. The whole business of deciphering

what is withdrawal fallout and what is actual need for a medication is so

incredibly, incredibly confusing. I'm sorry any of us parents have to be put in

the position of trying to make heads or tails of it. But we do the best we can,

eh? Story of raising kids...ANY kids! :0)

It sure sounds great that Langan is able to enjoy improvements from the Lamictal

side effects as she drops it. Now, if those partials would just go away... It

is also absolutely fantastic that the symptoms that caused you to push for the

initial Rett (and other disorders) testing are subsiding--that is just so

wonderful! Here's a case where being proved wrong would be the most terrific

thing in the world. You must be feeling so encouraged, although I can relate to

that state of being torn between wanting and not wanting a dx. I hope getting

med free will allow Langan to blossom and it will all become a moot point.

Thanks so much for your prayers. It's still too early to tell yet if

reintroducing the Lamictal will help , though I will say it seems we were

able to tell when the first dose cleared her system. Leads me to feel guarded

hope... Our experience with Lamictal before was so clouded by 4000mg of Keppra

(yup, 4 GRAMS) that it never got a fair shake on its own. It wasn't controlling

seizures then (but could some of them even have been caused by toxic levels of

Keppra? Who knows?), but it didn't have the negative effects that you've seen

with Langan. Supposedly it is effective for LGS, which is indicated by 's

EEG, and so maybe it can interrupt the cycle she's in.

In the meantime, I am marveling at what a resilient kid she is...oh, I can learn

so much from her! Aren't our kids just the best?

Take care,

Rose-Marie,

mom to (age 8)

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