Re: Barbara - ree dx and EEG-SUSAN

[Guest guest]

& Hill wrote:

> 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? Yes, you'd think--I'm still trying for one.

> 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?Well, here's where the

> eeg reports are so vague--the first two (routine and longer veeg)

> don't give frequency. A week after loading on the drugs, there was

> " delta activity of 1 to 1-1/2 hz over both hemishperes in the

> parasagittal regions. " A few days later (another long veeg), off the

> phenytoin, when it " looked " like the drugs were working: " gen spike

> wave discharges at 1-1/2 to 3hz " and background was a " dominant 6 and

> occasional 7hz " . Last Feb. when we switched to Philly (after a good 28

> day spell, when things got really bad again, mostly during sleep),

> both the awake routine and longer veeg: " background severely slowed

> and disorganized...widespread 2 to 3 hz delta activity...much

> overlying theta activity...multi-focal, epileptogenic

> discharges...appearing to be more gen. irregular spike and slow wave

> activity " . And from the rountine awake last week: " Symmetric, 7-8hz

> activity with excessive intermittent slower theta activity seen

> posteriorly, reactive to eye opening, with a well-developed

> frequency-amplitude gradient. No epileptiform activity was noted " .

> That said--she had a little jerk this am half and hour so after

> waking:( First I've seen in over a month and I didn't see anything

> more than some stirring in her sleep the first hour or so last night.

> Didn't really affect her, but....

> 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

>

> Barbara

>

>

> ----- 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!

>

>

>

>

>

>

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