--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, "Tania"
<davidandtaniastraub@...> wrote:
>
> I posted a looong introduction on myself and family but I have no
> idea where it went in cyberspace but I have some questions and I am
> not satisfied with the answers or rather........lack of answerers
> form the pediatric neurologist here in town.
>
> My daughter (3 years old) started having seizures 3 weeks ago. We
> went from 2 absence seizures to round the clock generalized or
> complex partial with in days.
>
> A week long stay at Doernbecher left us with years worth of testing
> already done, confirmed a fairly large Cortical Dysplasia.
>
> Now we are home and transfered to a Pediatric Neurologist here in
> town. His name is Dr. Goins.
>
> Have any of you had experience with Dr. Goins in Eugene positive or
> negative? Please share it with me.
>
> My daughters white blood cell count has almost disappeared after
just
> a 3 weeks of being on Trileptol. It will take us 5 weeks to wean
her
> off it as she is on a very high dose. What are the dangers of her
> white blood cell count being so low?
>
> She is on Tranxene. We wanted to start taking her off it last week
> but with the problems the Trileptol is causing she will need to
stay
> on it. How long can she safely be on the Tranxene? Has anyone had
> experience with this?
>
> She is having complex partial seizures that last up to 10 minutes.
> Sometimes 5 or more an hour. The Neurologist here said to call 911
> if she has a generalzed seizure that last 5 minutes. When I called
> back and told him that her seizures were exactly like Grand-mal
> (generalzed) except she was partially conscious lasting 10 minutes
> and could have them back to back unresolved or an hour to hour and
a
> half and I wanted to know if I should take her in or call him if it
> happens he said "You have a lot of questions, I'll talk to you
about
> them at your appointment." Actually he had his assistant tell me
> this. My understanding form Doernbecher was that ANY seizure
> clustering or lasting more than 5 minutes was cause to call 911.
Now
> he says wait until your appointment in 2 weeks for me to tell you
> what you should do. I know her Oxygen level drops with the complex
> partials and I'm concerned about them lasting 10 minutes or more.
>
> Would those of you who have used other docs or have more experience
> with this call 911 or would you not be concerned with 10 minutes
> complex partial seizures? I don't want to be calling 911 every
time
> she has a seizure if it is unnecessary but I do not think she is
> getting enough oxygen during these times. What would you guys do.
I
> am so new to this that I don't know who to listen to and I am not
> impressed with the neurologist we have been transfered to.


hi my name is barbie i have dealt with seziure most of my life the
normal time for a seziure is 5 to 7 min if a child stop breathing or
turn blue or has another seziure with 3 hour or less yes call 911
if you would like to talk my number is 360-891-6036
>