Barbara - ree dx and EEG

[Guest guest]

Oh yes, I forgot she wasn't included in the diet study group and not

actually under

Still, since she is quite adamant about how important the ree dx is with

her keto kids, you'd think it would be used for all of them at CHOP,

wouldn't you?

Have you asked for one and been told no? If so, what was the reason?

is supposed to be having one tomorrow after his kidney ultrasound,

and I am very anxious to see how it turns out, so I really would be annoyed

if anything like a hospital budget ever stopped him having one.

So this EEG - and the spike that is swaying the neuro more towards LGS -

is it the 1.5 - 2.5 hz spike he is referring to? Because that can come and

go with MAE kiddies just as the abnormal background can.

I guess if you can wipe out this last bit of seizure activity, it won't

matter which diagnosis she ends up with, as many LGS kiddies have got full

diet seizure control with normalised EEGs and have been fine. Still

disconcerting not to know for sure though I guess.

Know what you mean about having many EEGs, floating round I stopped

counting at 40 something with

----- Original Message -----

> > 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!