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 for
a drug to take full effect. I'm so sorry to hear that Trileptal has caused
your precious little girl's white cells to drop so dramatically. That's a
very rare side effect, and I'm glad that they caught it fairly early. Had
they tested her blood prior to administering the Trileptal? I'm sure they
did, but it would be good to know for sure just in case she didn't already
have a low count to start with.

As I understand it, having a low white blood cell count lowers immunity to
fight off infections. The white blood cells are among a body's first line
of defense, and are very important. A healthy combo of white and red cells
(carry oxygen) are necessary for good health.

To answer your question about Tranxene ... we've used that on and off over
the years as an emergency medication. In fact, I keep some along with
Ativan with me at all times as part of my son's emergency med "kit".
Tranxene is a fast acting sedative type of medication that has been
effective in calming seizures. It does not stay in the body system long,
though, which is why it is typically used as an emergency med vs. a regular
med. It has very strong sedative effectives, causing extreme drowsiness, as
well as drooling. It is sometimes used, too, when weaning from one drug to
another to help calm potential seizures.

Best wishes to you as you start this journey. It is a looong journey, that
is unique to each patient's symptoms. Sometimes it takes several tries to
find a drug that will help with ease seizure symptoms. Please take comfort
in that you are not alone. Many parents and epileptic patients themselves
frequent this board and can offer much encouragement and support. My son is
13 now, and has had seizures since he was six. He actually has had great
success with trileptal and neurontin and VNS. He's taken medications that
were a disaster for him, but worked great for others. What works for one
kid, though, doesn't always work for another. If I could offer one piece of
unsolicited advice ... record everything in a notebook. EVERYTHING.
Include conversations with doctors, seizure activity, etc. You'd be
surprised how much you will reference that information, plus, it can
establish any patterns that may be otherwise unnoticed.

You are doing all the right things asking about doctors and treatments. I
live in the Portland area, and am only familiar with the physicians in this
area. I very much prefer the Pediatric Neurology staff at OHSU/Doernbecher
compared to where we sought treatment before. Dr. Colin Roberts has been
extremely instrumental in helping us achieve the level of treatment success
we have today. I'd encourage you to trust your gut. The relationship you
will have with the neurologist will be a LONG term one. I applaud you for
seeking information to help you find the best neurologist fit that you can.
If you do decide that switching neurologist's is in your daughter's best
interest, perhaps the folks who treated her at Doernbecher can give you
another recommendation. And don't be put off if insurance tries to limit
your selection. Write letters requesting an exception, document every
conversation you have, ask your pediatrician to write letters, the
Doernbecher folks to right letters ... really ... don't let Insurance
issues stop you, and don't be put off if they say no at first ... keep at
it. You are your childs best advocate.

Best wishes to you and your little girl.

Paula









Original Message:
-----------------
From: Tania davidandtaniastraub@...
Date: Mon, 02 Feb 2009 17:34:04 -0000
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
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.



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