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 and Resident, we also worked with Dr. Pinter and
one other who's name excapes me.

My concern with Dr. Goins is that I only get to speak with his
assistant. She does not get my questions right, asks him the worng
question or can not seem to get the littlest instruction such as what
number to return an emergency call to, I do not trust that she is
communicationg my concerns to him or that she is fully communicating
his messages to me. I feel she is generalzing to much.

For example, when they called to say that my daughters white blood
cell count had dropped even lower and they needed to start to switch
her to Keppra they did not address whether they would keep her on
Traxene as well since I was supposed to start taking her off Traxene
that day it was a very important detail since they wanted to keep her
on it.

According to Doernbecher my daughter is maintaining a level of
conciousness during generalized seizures, according to him she
isn't. He has not reviewed the Video EEG Doernbecher made their
adivsment on (says he doesn't need to). He says not to call 911,
Doernbecher says yes, call they are generalized. When I called him
to say her seizure was lasting 10 minutes or more and sometimes
having half a dozen or more in an hour he said is she unconcious I
said not completely he said she's ok.

I guess I don't trust that he isn't putting more weight on what the
specialist who spent time with her and did the test have to say. He
is the only Pediatric Neurologist with in 2 hours of us so I really
want it to work with him but I'm not so sure it will.

--- In Cent_Wa_Epilepsy_Support@yahoogroups.com, Diana Trahan
<savedbygrace77777@...> wrote:
>
> 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 little girl's situation.   When she was 4 1/2 months old
she began having seizures.  They got progressively worse as time went
by.  She would have sometimes 15 a day and sometimes they would last
up to 30 minutes.  In addition to the daily seizures, in 1997, 1998
and 1999 she had a seizure that lasted 2 to almost 3 hours.  The
one that lasted over two hours in 1999 caused permanent brain damage
and she is now totally disabled.  She depends on us for every single
detail of her life, including tube-feeding.  The damage in her brain
is sproatic so it affected every part of her body.
>
> Please understand, I'm not sharing this with you to scare you in
any kind of way.  But I wanted you to be aware of what could happen
if these seizures last too long or if they are too frequent.  I guess
what I want to say is, the doctors don't always have the answers. 
Please follow your instinct when dealing with these seizures.  Don't
be afraid to call 911 too often ~ that's their job.  Another point
that I can not emphasize enough is that these seizures can be very
dangerous and are nothing to be messed with.  I'm only telling you
this out of experience.  I've been dealing with this for 12 years now
and I know it's not any fun, but as I said before, you don't want to
ignore them.  I'm not saying that the doctors are not any good, but
you know what's best for your child.  And there are some doctors that
are just too passive when dealing with seizures.  Please be aware of
those.
>
> Claire's doctor has her on Diazepam, as needed for pro-longed or
frequent seizures, and we always carry Rectal Diastat
(Diazepam/Valium) with us in case the seizure will not stop.  She's
on seizure medication also.  She's on Myseline, but is still having
them almost daily. Since the brain damage, she hasn't had any pro-
longed ones, but if she has more than 3 per day, we usually give her
a Diazepam and that will sometimes calm her down.  Sometimes that
works, but sometimes it doesn't.  We have tried almost every anti-
seizure drug along with combining some and nothing has worked.  I
don't want to discourage you.  Every child is different.  It's very
possible that they will find the right drug or the right combination
of drugs that will control the seizures, but there are some cases
where the seizures are never controlled and Claire is one of those
cases.  Sometimes we have to weigh out the pro's and con's also. 
Sometimes the drugs are too
> strong and they can't function.  That's when we have to decide if
we will continue on the drugs or not.  I'm at the point in our
situation where I've chosen not to try any more drugs or combination
of drugs and Claire seems to be a lot more alert.  But in her case,
they were drugging her too much so she was sleeping too much and not
alert, and was still having the same amount of seizures.  That's why
I chose to just stick with the one medication and we'll just deal
with the seizures as they come.  I'm not telling you to choose that
route for your little girl, that's just where we are right now since
we've tried it all.  I hope you understand what I'm trying to say. 
You have to try all options until those options run out then you make
a final decision.
>
> I will keep you and your little girl and your family in my
prayers.  I know exactly where you are and I feel every bit of what
you're going through.  But I urge you to hang in there and don't give
up.  When you don't feel comfortable with a doctor, it's always ok to
find another.
>
> I look forward to hearing from you regarding your little girl and
again, you remain in my thoughts and prayers.
>  
> God Bless!!!
> In Jesus' Name,
> ~Your Sister in Christ~
> Diana
>  
>
>
>
>
> ________________________________
> From: Tania <davidandtaniastraub@...>
> To: Cent_Wa_Epilepsy_Support@yahoogroups.com
> Sent: Monday, February 2, 2009 11:34:04 AM
> Subject: [Cent_Wa_Epilepsy_Support] Help!! Questions from a new
mom. Well new to seizures anyway.
>
>
> 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.
>