Jamie,
I would continue taping her -- but I think maybe keeping a diary might help also.
Like has she eaten before she goes to bed or what was she doing before, what
you saw when she has a sz, how long it lasts, how does she feel afterwards. This
may give you a pattern and may also help the Dr.. Of course keep track of day
and time.
Millie
----- Original Message -----
From: Jamie
To: epilepsy@yahoogroup
Sent: Wednesday, April 28, 2010 11:50 AM
Subject: [epilepsy] Re: where is everybody
Millie,
Thats what I thought too. Our Neuro sent us to UCLA to see a neuro that specialize in movement disorders, that dr. elimanted movement disorders and didn't feel she had epilepsy. So then our neruo doesn't think so either.
We video taped her while she had on the ambulatory EEG and previous episodes too. When he watched the tape the first time he said though nothing showed up on the EEG he fet they looked like seizures (at least in that one night)
SInce then though he is thinking it is not epilepsy and something else so we are waiting to hear from Stanford where there is supposivly a neuro who looks at sleep and seizures. A place where they study sleep disorders.
Megan has been on medication since last July and once she started treatment and seeing a therapist to deal with them, she lost weight since she would not eat before bed or if she did she would throw up.
Megan is so brave now and dealing with them so much better. When she has a bad night it is rough and she asks if her life will always be like this but by the next day she is back to her bouncy happy self. So then I can't feel sorry for myself or for her if she doesn't.
At least this neuro hasn't stopped trying, if that were to happen I would seek other help. I am just hoping we can get some sort of answer sooner than later.
Thanks,
Jamie
--- In epilepsy@yahoogroup
>
> Jamie,
>
> Just because a sz doesn't show on the EEG doesn't mean she doesn't have EP.
>
> Quite a few of us have better luck with the brand name than generic.
>
> Millie
>
>
>
>
>
> ----- Original Message -----
> From: Jamie
> To: epilepsy@yahoogroup
> Sent: Tuesday, April 27, 2010 10:16 AM
> Subject: [epilepsy] Re: where is everybody
>
>
>
>
> My daughter Megan (9 years old) is the reason I joined. We are still trying to get a diagnosis. First the neuro said looked liked epi. but they have never showed on EEG. SHe only has them at night and the look like simple partial. They come in clusters sometimes as often as every cople of minutes and sometimes 45 minutes apart. She is on generic for Kepra. Each time we would increase the dose we had a couple of weeks without any, omce we had 13 weeks with out an episode. We thought okay we got it but they came back.
> Her neuro is referring her to Stanford where they will look at sleep as well as seizures. Hopefully we can get some answers but at least she hasnt been having them night after night any more and her emotional helath and physical health has imporved so much since we started treating her.
> Thank you all for this site. It really helped me especially at the beginning and continues to do so.
>
> Sincerly,
> Jamie
> --- In epilepsy@yahoogroup
> >
> > Hello everybody,
> > I open my mail every day and I was surprised that I have not seen any mails on the site for two days.I hope there is nothing wrong.
> > Best wishes.
> > Hanan
> >
>
>
>
>
>
> [Non-text portions of this message have been removed]
>
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