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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 three months ago (she has about two simple partial seizures daily) and her MRI showed that she also has a cortical dysplasia the size of a large walnut in her right temporal and occipital lobes. We live in Corvallis and were also referred to Dr. Goins at first. About two weeks ago we have transferred to Dr. Roberts at OHSU.
I have mixed feelings about Dr. Goins. He seems to be a good Dr. However both my husband and I had problems communicating with him. Emilia was started on Keppra right away but Dr. Goins never made it clear which side effects were acceptable and which were not. She has had extreme behavioral problems with Keppra but when we called we never got to talk to Goins directly and the nurse communicated to us to stay on Keppra if we could deal with my daughter’s tantrums. So we stuck with it for several weeks even though it never got rid of the seizures completely. At our follow-up appointment he decided to wean her from Keppra and start Trileptal instead. After about ten days on Trileptal our daughter developed a bad rash in her face, headaches, a stomach ache etc. When I left a message with Goins’ nurse she did not call back for over six hours! When we finally reached her in the afternoon, she did not even apologize but seemed to think we were over-anxious! Goins decided to stop Trileptal but restart her on it after five days …
At this point we saw Dr. Roberts for the first time. He advised us against restarting Trileptal and instead we are increasing the Keppra with added B6. (Dr. Goins had not even mentioned B6.) The B6 worked well at first but now with the higher dosage of Keppra she is feeling worse again and still has seizures every day. So we will be trying another drug soon.
So we were not really impressed with Dr. Goins either. He also did not seem particularly empathetic and sometimes impatient with my questions. Is there any other pediatric neurologist close to you?
I hope you will find the right medication and a good Dr. for your little girl soon. Again my heart goes out to you.
Karen
-----Original Message-----
From:
Cent_Wa_Epilepsy_Support@yahoogroups.com
[mailto:Cent_Wa_Epilepsy_Support@yahoogroups.com] On Behalf Of Tania
Sent: Monday,
February 02, 2009 9:34 AM
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......
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.
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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