Re: glycogen storage disease / seizures

[Guest guest]

Kim

My son with mito had something similar when in college. He had had

complex partial seizures in the past when he over-did it, but he

started having nocturnal seizures and had to drop out of college until

they were under control. He would have a seizure, then be post-ictal

which caused deep sleep which caused another seizure. They were easily

controlled with medication. One think that the neuro said was a real

clue to nocturnal seizures was remembering more and more of a dream as

the day progressed, rather than the opposite.

It was smart that your daughter's friends filmed some of the seizures.

This should really help the docs. Good luck finding answers to this

problem.

laurie

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> Hi, I've had a situation come up. My 14 year old daughter shows signs

> of my metabolic myopathy (glycogen storage disease). Last night she

> was spending the night at a friends. She had more sugar than usual,

> and ended up having convulsions every time she fell asleep. The other

> girls there would try to wake her up, and couldn't. They slapped her,

> threw water on her, etc. The longest episode they timed lasted 20

> minutes. Thankfully one of the girls taped some of it. Has anyone

> had this happen? I haven't had a fresh biopsy, but have a

> consultation appointment with Dr Cohen next month.

> Thanks for any info you can give.

> Kim

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[Guest guest]

Hi Laurie,

The weird thing is that she isn't postictal after the convulsions

stop. She wakes up after a while, and they stop when she wakes up.

She's not dopey afterwards. I haven't been able to see the tape.

It'll be a long night watching her tonight.

Kim

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> > Hi, I've had a situation come up. My 14 year old daughter shows

signs

> > of my metabolic myopathy (glycogen storage disease). Last night

she

> > was spending the night at a friends. She had more sugar than

usual,

> > and ended up having convulsions every time she fell asleep. The

other

> > girls there would try to wake her up, and couldn't. They

slapped her,

> > threw water on her, etc. The longest episode they timed lasted

20

> > minutes. Thankfully one of the girls taped some of it. Has

anyone

> > had this happen? I haven't had a fresh biopsy, but have a

> > consultation appointment with Dr Cohen next month.

> > Thanks for any info you can give.

> > Kim

> >

> >

>

[Guest guest]

Kim,

Sorry to hear this. I am glad that one of the girls taped some of your daughters

seizure and hopefully it will be beneficial to the doctor. I hope you take the

tape with you when you go to see Dr. Cohen next month.

Is this the first time your daughter has had these convulsion/seizure type

things happen to her? Do you think it was due to the amount of sugar she

consumed during the day?

I hope that your daughter has a restful night sleeping.

Hugs,

Ann-Marie

glycogen storage disease / seizures

Hi, I've had a situation come up. My 14 year old daughter shows signs

of my metabolic myopathy (glycogen storage disease). Last night she

was spending the night at a friends. She had more sugar than usual,

and ended up having convulsions every time she fell asleep. The other

girls there would try to wake her up, and couldn't. They slapped her,

threw water on her, etc. The longest episode they timed lasted 20

minutes. Thankfully one of the girls taped some of it. Has anyone

had this happen? I haven't had a fresh biopsy, but have a

consultation appointment with Dr Cohen next month.

Thanks for any info you can give.

Kim

[Guest guest]

She had one grand mal seizure when she was two. She was

developmentally delayed, but caught up by 5-6 years old.

Kim

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> Kim,

>

> Sorry to hear this. I am glad that one of the girls taped some of

your daughters seizure and hopefully it will be beneficial to the

doctor. I hope you take the tape with you when you go to see Dr.

Cohen next month.

>

> Is this the first time your daughter has had these

convulsion/seizure type things happen to her? Do you think it was

due to the amount of sugar she consumed during the day?

>

> I hope that your daughter has a restful night sleeping.

>

> Hugs,

> Ann-Marie

>

>

> glycogen storage disease / seizures

>

>

> Hi, I've had a situation come up. My 14 year old daughter shows

signs

> of my metabolic myopathy (glycogen storage disease). Last night

she

> was spending the night at a friends. She had more sugar than

usual,

> and ended up having convulsions every time she fell asleep. The

other

> girls there would try to wake her up, and couldn't. They slapped

her,

> threw water on her, etc. The longest episode they timed lasted

20

> minutes. Thankfully one of the girls taped some of it. Has

anyone

> had this happen? I haven't had a fresh biopsy, but have a

> consultation appointment with Dr Cohen next month.

> Thanks for any info you can give.

> Kim

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