Cent_Wa_Epilepsy_Support : Message: Re: [Cent_Wa_Epilepsy_Support] Help!! Questions from a new mom. Well new to seizures anyway.

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.

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