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Help!! Questions from a new mom. Well new to seizures anyway.   Message List  
Reply | Forward Message #794 of 894 |
Re: Help!! Questions from a new mom. Well new to seizures anyway.

--
Tania-
The general rule is to call 911 with any seizure lasting more than 5 mins
because we aren't getting enough oxygen and could ultimately cause (minimal)
brain damage. Usually this is with grand mal seizures, but if your daughter is
experiencing even complex partial (which is what I have) to the degree of 5 in
an hour that would be cause for concern. What did your doc tell you? How is
your daughter doing? My prayers are with you.
Karen



- 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.
>





Mon May 4, 2009 2:14 pm

sammykjquam
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Message #794 of 894 |
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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...
Tania
promiselande...
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Feb 2, 2009
5:34 pm

... just ... her ... stay ... a ... about ... Now ... time ... I ... hi my name is barbie i have dealt with seziure most of my life the normal time for a...
bkk1073
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Feb 2, 2009
6:35 pm

Hi Tania: I don't know where you're from and I haven't heard of the doctor you're talking about.  But I would like to share a little with you regarding my...
Diana Trahan
savedbygrace...
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Feb 2, 2009
6:40 pm

I should have mentioned that I am in Eugene Oregon. We were working with a team of specialist at Doernbecher first, Dr. Kao I LOVED!, as well as her Fellow...
Tania
promiselande...
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Feb 2, 2009
7:12 pm

Hi Tania, Just wanted to send a cyber hug your way. It can be challenging to find the right mix of drugs to control symptoms, and often times it takes weeks...
paula@...
thalmannmom
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Feb 2, 2009
7:25 pm

Tania - Our daughter, Blair, is eighteen years old and has had seizures since she was four months old. Blair has Tonic/Clonic seizures lasting about a minute,...
Bonnie Shonholtz
blairinspira...
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Feb 2, 2009
8:04 pm

Tania: An open line of communication between you and the doctor are very important.  I would definitely mention those concerns with him asap.  I've already...
Diana Trahan
savedbygrace...
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Feb 2, 2009
8:45 pm

Dear Tania: My heart goes out to you! I hope your daughter will do better once weaned from the Trileptal. My 3-year-old daughter started having seizures about...
Karen Barkemeyer
barkemey
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Feb 3, 2009
1:32 am

-- Tania- The general rule is to call 911 with any seizure lasting more than 5 mins because we aren't getting enough oxygen and could ultimately cause...
sammykjquam
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May 4, 2009
2:14 pm

We took our step-son in a couple of times because of intractable seizures. Usually by the time we'd get him to the ER, his seizure would be over, the ER doc...
Sherry
sherdh
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May 4, 2009
2:50 pm

Hi Tania, I'm not a doctor, just a Mom...but if that was my child, I would pack her into the car and take her to emergency at OHSU in Portland. Doesn't sound...
SUE OWNBY
sue_ownby
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May 5, 2009
3:26 am

this email is for Tania, who had questions about Dr. Goins in Eugene. we live in Eugene and have a child with complex partial seizures. i would be glad to...
lisa kline
lisakline11
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May 9, 2009
8:55 pm
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