Re: Emma and Barbara - paper-SUSAN

August 2, 2004

,

Thanks very much!

> PS - Barbara - Doesn't Claire go to CHOP now for the diet, would have

> thought would already have done a ree dx test for her?

> Unfortunately, we were already on the diet, so when I started taking

> Claire over there, we had to go with another neuro...outside the study

> they don't routinely do the ree dx. We're having an endo work-up in 3

> weeks (ugh, another long trip to Philly)...I have a nagging feeling

> that her calories were cut too quickly twice when we started the diet

> in Pittsburgh. She gained weight quickly at first, but she was

> emaciated and needed to gain--the drug toxicity wasn't even

> considered--I'm afraid her metabolism is messed up. She's on 1065

> calories (21.5kg/116cm-was gaining, but stable last 3 months; grew

> about 1 cm), very active and still taking long naps. Last carnitine

> levels had 2.2 ratio! (She's on the full dose of carnitor). Congrats

> on the latest EEG btw, that is fabulous news, any direction upwards

> has to be a good one.... Thanks again...yes, getting some positive

> news is a real shot in the arm. Still looking at the LGS

> diagnosis...happy to hear about it when others get the MAE vs LGS, but

> kind of a blow to the morale when it's associated with such a dire

> prognosis I don't know if I misunderstood last time I asked,

> but this time her neuro said it was one spike showing on an eeg at any

> time that put her in that category (not the slowed background...but I

> could swear that's what he said before)...anyway, as far as he's

> concerned her background was essentially normal this time, which

> confirms more than ever to me that depakote was the culprit (labs

> after 4 weeks off still showed a level of 3.0--practically nothing,

> but shows how her body holds on to it, I'd say). Good news...I

> probably won't bother you with the eeg (until we get another sleep

> one, that is, or if I can find her very first routine eeg, before the

> drugs were loaded on)....there are just too many and they're all so

> vague, I don't know where to start!

Thanks,

Barbara

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