Sue,

I also have realized that this is not the end of the world. There
are things out there in this world that are so worse! I have not
made it to the children's hospital yet we go 8-23. I do know that
every year for the past 8 years once a year I have always listened
to the radio hunt for the cure. I listen to the stories of other
children battling with life threatening illnesses! I have always
donated because I was so fortunate to have 2 healthy children. I
thank every last lucky star that epilepsy is something we can live
with.

Thank you for your information on Keppra. We started this on
Friday! I do have a question for you. A new situation that has
come up for Megan is bladder control. Has your daughter or anyone
else found this to be a problem? I have heard that it is a common
side effect?

My daughter just started a Girl Scout camp today for a week. I
signed her up in February prior to any seizures. When the unit
leader called me to introduce herself I emotionally explained
Megan's situation. I did not want her to miss out on this
opportunity to spend time with others. I found that this unit
leader was another angle sent to me because here daughter has been
living with epilepsy for 7 years. She accepted Megan in her group
and has had all kinds of experience with this. Megan will also get
to talk to another girl with the same situation.

Have you found that some things your daughter wants to do she can
not because of the liability? The unit leader I spoke with quit her
job to be able to spend more time with her daughter to follow her to
sports events so she was allowed to participate. If she hadnot been
there some organizations would not take her because of the liability?

I have been trying to fine a local group for her to go and talk to
others that is appropriate for her age group.

I felt at first we were in this ocean swimming as new specie. I am
so thankful to find this group to have a way to ask question to
others with this same situation!

Thank you for starting this up!

Brenda :)

PS I would love to have the opportunity to be trained by the
Epilepsy Foundation. I will look into this!! I did join the
Epilepsy Foundation e-mail list!

--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, Mrmrssoso@... wrote:
>
>
> Brenda & Candice,
>
> It's great to talk to another Mom(s)! First a little history:
My daughter,
> Chelsi, is 12. She's had epilepsy since she was 10 months old.
Up until
> she was 3 1/2, we thought she just had febrile seizures that she
should have
> outgrown by the time she was 5...then we noticed she had grand
mal seizures
> just from playing too hard. We then figured out she only had
grand mal seizures
> when he "inner core" got hot, whether it was from a fever or
doing something
> aerobically.
>
> In the very darkest days when she was about 4 1/2 she'd have
about 3 grand
> mals in one week. This was at a time when she was on high doses
of valproic
> acid (depakote), zarontin, and was in the process of adding in
lamictal. It
> was disasterous, and she was overmedicated to the point she
became ataxic and
> was so dizzy she couldn't walk or sit. We spent 4 days in
> Children's....which turned out to be a life-changing experience.
You see, the hospital was
> crowded so we ended up on the oncology floor. After seeing a
group of young
> girls sitting on their beds showing the "newbies" how to make a
ball out of the
> hair that was falling out of their heads from chemotherapy, and
baby's being
> rolled around these lily pad things all hooked up with IV's and
various other
> tragic things, I decided "OK, we can deal with anything!" It
really helped
> to put things into perspective, and gave me the strength to
become an
> advocate for my daughter, an epilepsy mentor (trained by the
Epilepsy Foundation of
> Seattle...just a one day thing, but SO worth it), and I also
started up this
> list to help people connect. Anyway...my daughter is a beautiful
young lady
> who's only had one major seizure (she had one 5 months ago) in
about a year.
> She has a mild learning disability...mainly related to being able
to
> understand what she's reading when she has to "infer" something
and she goes to
> regular classes and gets average grades...though she does have an
IEP and takes
> speech for 20 minutes, two times a week.
>
>
> Anyway (Brenda) you were asking about Keppra. My daughters been
on it for
> about 2 years. She's also on Zonegran. Both of these drugs are
the new
> generation drugs that don't make them drowsy. This combination
seems to work well
> for her. She doesn't seem to have any side effects from them.
Her appetite
> has decreased, which is ok, since she was a couple of pounds
overweight.
> She's a shrimp for her age...about 6 inches shorter than most
girls her age.
>
> And here's a newsflash (Candice). She see's Dr. Bouldin at
Children's!!
> Actually, he comes to Children's Village here in Yakima every 3
months and she
> see's him twice a year. We just love him, too!
>
> Anyway, I look forward to chatting with both of you more!
> Sue Ownby
> Yakima
>