Thanks Sue,


I am from Rochester Washington. That is 20 min south of Olympia.
But if it is okay I would love to stay on with you. I come to
Yakima quit often so I may be able to meet up with y'all sometime.

My son is 6 yrs old and he has pettymal seizures. The only problem
is it is so hard so tell when he has one or if he is having them or
if the med is at the correct dose to keep him from having them. His
EEG did come up irregular accurate for a child with Epilepsy so we
know he has it , but I just wish there wasn't so much guess work
involved. If fact I am going to request a sllep study at Children's
when I see his Neurologist in 2 months.

My son also has Blepharophimosis syndrome. He had GI Reflux
(possibly still) and was tube fed for 4 years. He was born
hypotonic and was in the special nursery for 12 days. He was
hospitalized 4 years in a row every March for pneumonia and was
pneumonia free now for 2 years!!!

He is developmentally about 3 yrs, but he has no speech what so
ever. He knows 5 signs and is a very happy boy. Although he is
very frustrated with not being able to get acrossed his wants,
needs, and feelings. Tantrums I tell ya!

I also have a Daughter who is going on 10 with ADHD and possibly
BiPolar.

Gee I'm tired just thinking about it today.

Looking foreward to hear from you.


Kelly





--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, Mrmrssoso@a...
wrote:
> Yes - I live in Yakima. We're a young e-list...started just a
couple of
> months ago. A couple of other people on the list live in Yakima,
but all are
> welcome! We have a small group of people who meet in
Yakima...used to be once
> a month, but busy schedules easily get in the way. We're trying
for once
> every 3 months now.
>
> Please tell my about your son's epilepsy.
>
> My daughter (who just turned 11) has been having seizures since
she was 10
> months old. She was first diagnosed with febrile seizures (which
she only had
> when she was sick with a fever). This kind of escalated to
whenever she
> played too hard and her inner core heated up, she would have a
seizure. Then
> she was put on drugs, and we went through a really bad phase when
she was toxic
> on valproic acid (depakote), and lamictal was added. At this
point she was
> having up to 3 head banging (awful, intense, grand mal) seizures
a week and
> had become so ataxic (dizzy-couldn't even walk) from the lamictal
and her
> white blood cell count had dropped to scary levels (from the
valproic acid). We
> spent 4 days at Childrens hospital in seattle, which actually
turned out to
> be a blessing. The hospital was full, and we ended up in the
oncology ward.
> After seeing what I saw there, I came out with a renewed attitude
and felt
> that we could face anything. Things calmed down a little bit,
and the next
> several years were spent in fear of the next seizure....I'm
always in fear of
> the next seizure...and it always comes at one time or another.
Sometimes they
> were a couple of weeks a part, sometimes a couple of months,
sometimes
> several months. The last couple of years, it seems like a couple
of times a year
> she has a cluster of a few seizures. I think we're in a good
spot, but having
> no seizures is always our goal. She had one in February and one
in March.
> Chelsi's trigger is, without exception (ok, the exception would
be when she
> was on too many of the wrong type of drugs) her inner core
heating up, whether
> it is by playing too hard or having a fever. It's hard to "let
her live her
> live" and be a normal kid. She's at the age when she can't have
Mommy
> hanging all over her telling her to slow down, take a break, etc.
>
> She is a little slower mentally than most kids. We held her back
in
> Kindergarten, she has an IEP at school and used to be in special
ed about 1/3 of the
> day. She was not challenged and I insisted she be put back in
mainstream
> classes, which has been a huge success. She's getting straight
B's! She does
> get some extra help, but I couldn't be happier. Her cognitive
skills are
> slow. It's hard for her to, for example, read a story problem in
math and make
> sense of it. Seems like every day has a new challenge.
>
> Well, thanks for listening! I guess it helps me to tell her
story, too.
>
> Take care and have a great weekend,
>
> Sue