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,

She did have difficulty with sleep issues. This is one of the clues to this

problem. My daughter did not have to be sedated, I told her we were going

to the hospital and that they were going to put spaghetti on her head. I

bought plenty of little gifts to give her (like every hour she was awake)

and also took her favorite videos. The hospital we were at had a video

player we could use. I had heard that sedation masks the seizures. I don't

know how true that is or how long it lasts.

My daughter was on depakote for a few years and then they put her on large

doses of prednisone for a while and the seizures went away. She has been

seizure free for 2-3 years. It makes a big difference. I think it is

important not to loose those years until age 15. The years she seized for

she lost basically. She tends to stay 3 years behind but she continually

makes progress and she is in about the 4th grade doing 4th grade work.

Finding Dr. Chez and this problem which was overlooked by other doctors was

nothing more than answered prayer and my daughter has benefitted greatly

from it. Don't be afraid! You both can do this!

Melyssa

EEG-Melyssa

Hi Melyssa,

I noticed your response to the other mother about your

daughter having LKS variant. Next Monday I'll be

taking my daughter (almost 7 y.o.) in for a 24 hr.

EEG. Did your daughter have to be sedated for the

hook-up process? I'm sure we will have to do that for

our daughter and dreading it since she will have to

fast for 6 hrs. prior to sedation. What

anti-epilectic med was she put on, and is taking this

med a permanent part of her life? I'd heard that these

seizures resolve themselves by age 15, in most cases.

Also, did your daughter have problems getting to sleep

or sometimes irregular waking patterns? If you have

any advice about the EEG process or can answer my

questions, would really appreciate it. Thanks!

__________________________________________________

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Hi Melyssa,

I noticed your response to the other mother about your

daughter having LKS variant. Next Monday I'll be

taking my daughter (almost 7 y.o.) in for a 24 hr.

EEG. Did your daughter have to be sedated for the

hook-up process? I'm sure we will have to do that for

our daughter and dreading it since she will have to

fast for 6 hrs. prior to sedation. What

anti-epilectic med was she put on, and is taking this

med a permanent part of her life? I'd heard that these

seizures resolve themselves by age 15, in most cases.

Also, did your daughter have problems getting to sleep

or sometimes irregular waking patterns? If you have

any advice about the EEG process or can answer my

questions, would really appreciate it. Thanks!

__________________________________________________

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Hi,

Dr. Chez also helped us on the " ladder " to possible recovery. Dr. Goldberg

has taken it to new heights. Dr. Goldberg doesn't seem to agree with Dr.

Chez's approaches. I wish that they could do some consulting with each

other, instead of being at odds. One thing these Dr's have in common is that

they have gone out on a limb to help our children when so many Dr's have

shut the door. I have such respect for both. How can we get them to talk?

Ellen

EEG-Melyssa

>

>

> Hi Melyssa,

>

> I noticed your response to the other mother about your

> daughter having LKS variant. Next Monday I'll be

> taking my daughter (almost 7 y.o.) in for a 24 hr.

> EEG. Did your daughter have to be sedated for the

> hook-up process? I'm sure we will have to do that for

> our daughter and dreading it since she will have to

> fast for 6 hrs. prior to sedation. What

> anti-epilectic med was she put on, and is taking this

> med a permanent part of her life? I'd heard that these

> seizures resolve themselves by age 15, in most cases.

> Also, did your daughter have problems getting to sleep

> or sometimes irregular waking patterns? If you have

> any advice about the EEG process or can answer my

> questions, would really appreciate it. Thanks!

>

>

>

> __________________________________________________

>

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