13-Month Old Daughter Has Seizures .. Need The Info Please.

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futuresperfect@gmail.com - 10 Aug 2006 07:29 GMT

My daughter, Chalice, has been diagnosed with General Seizures. The
Child Neurologist recomended the book "Seizures and Epilepsy in
Childhood: A Guide" and I find great comfort in the fact that there is
information out there dealing with what she's going through. Based on
the information from the book, reading sources online, and observing
her behavior for the last 4 months I have a prognosis that she is
experiencing Generalized Atonic Seizures (the head dropping, falling
over kind).

The book, so far, has given me a lot of information about all kinds of
seizures and epilepsy; however, since I feel that Chalice's epsiodes
are Atonic in nature I would like to get all the information I can find
pertaining to this specific group. Any help would be greatly
appreciated. I feel I need to know all that I can about what is
happening to my daughter so these episodes can be decreased or even
stopped as soon as possible.

If you, or anyone you know has these types of episodes please let me
know all you can about dealing with them. Or please direct my
attention to the proper resources. Google.com is a good round-a-bout
way to look at info, but I'm looking for some real meat'n'potatoes kind
if information.

Thank you!

A concerned father.

-Aaron

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Sofia - 14 Aug 2006 23:06 GMT

> If you, or anyone you know has these types of episodes please let me
> know all you can about dealing with them. Or please direct my attention
[quoted text clipped - 5 lines]
>
> A concerned father.

Hi, I'm Sofie, and although I have been having several different types of
epileptic seizures for years now (I'm 40 years old), atonic seizures are
also included in my lot.

My hubby says that when the atonic ones happen now that I'm an adult, I
just stiffen up, fall over, and go "TIMBER" as if I'm a tree just been
chopped down by a lumberjack. He tells my neuro' that there isn't any
floppyness at all every time I fall, and I always fall the same way - I
had one a couple of weeks ago when he was in the loo, and now I'm still
wearing his shades, so my neighbours won't think he's been beating me up.

Oh yes, he also says, if I don't actually fall, he always has to watch out
if I'm holding a drink - in particular a cup of tea or coffee, as my
fingers stiffen up tightly over the cup and he really has to struggle to
get it away from me, ending up spilling the entire contents over me and
sometimes scolding me in the process. Maybe this might be another thing
you would want to look out for - hubby always tells me to take a few sips
and then keep putting it down.

All the best

Sofie

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futuresperfect@gmail.com - 15 Aug 2006 07:35 GMT

Thank you for your story. What meds are you on? Some of the sources
I've read state that in some cases "dropping" or atonic seizures can
result in the Lennox-Gastaut syndrome. This is one of my fears for my
little girl. She cut her upper lip 3 times today and it's hard for me
to maintain a positive attitude when most of the info I'm looking for
may not be available or just "not known".

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Sofia - 22 Aug 2006 23:57 GMT

> Thank you for your story. What meds are you on? Some of the sources
> I've read state that in some cases "dropping" or atonic seizures can
> result in the Lennox-Gastaut syndrome. This is one of my fears for my
> little girl. She cut her upper lip 3 times today and it's hard for me
> to maintain a positive attitude when most of the info I'm looking for
> may not be available or just "not known".

Hi again, I found this on my google for you about Lennox-Gastaut syndrome
in very young children, as I only started getting atonic seizures when I
was 9 years old, so I was much older than your own daughter so the meds I
was on would hardly help her.

If you really want to know though, I did actually begin my meds on nothing
but epilim, but it didn't work very well for me, so my neuro has been
mixing and matching them up for me over the years now with practically
every new med' that seems to come on the market. I'm now 40 years old
and on a combination of 800mg tegretol twice daily, 1000mg keppra twice
daily, and 150g zonisamide twice daily.

Oh well, It still isn't working that well for me though, as I'm still
getting several different types of seizures I can think of but I guess
that's just my problem!

http://www.epilepsy.org.uk/info/lennox.html

All the best

Sofie

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