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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, about every two weeks. She also has Atypical Absence seizures sprinkled throughout the day.
I'm curious, who referred you to Dr. Goins? We live in Monmouth and travel to OHSU because we like the pediatric neurologist there - yes, it is a bit of a drive, but the peace of mind for mom and dad is well worth it. There is no one in the immediate area that we feel could come near the high quality of treatment that we have become accustomed to over the years. Your neurologist should be able to answer all the questions you have - write them all down so you don't forget any. Some phyisicans are better communicators than others - hopefully when you get this neurologist in front of you, he'll give you the one-on-one time you so desperately need. Perhaps the doctors office could notify you if a canecellation occurs before your scheduled appointment ( I know how antsy you must be). How is your medical coverage?
Regarding the lack of oxygen, any lack of oxygen to the brain is something you want to try avoid. We have always used the "three minute " rule. If seizure activity is occuring and decreasing the level of oxygen to the brain, and you need to get medical attention, five minutes is a long time to wait. When Blair was young and in dire straits, we went to the ER as often a we felt was needed. We actually developed a great rapport with the staff there as often as we showed up. There is also medication that can be prescribed to you (Diastst) that you can dispense rectally in the event of a lengthly seizure. Your doctor will probably discuss this with you.
I know how terrified, confused, emotionally numb you and your husband must be. Getting seizures controlled, eliminated or just reduced in number, is a roller coaster ride. You need to know that thankfully, there are so many treatment options out there that weren't available in years past. You also need to know you are not alone, and the more families you contact about your situation, the more knowledge you yourself will acquire. If you'd like to contact us, let me know......
Hugs,
Bonnie
Blair's mom
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
From: davidandtaniastraub@...
Date: Mon, 2 Feb 2009 17:34:04 +0000
Subject: [Cent_Wa_Epilepsy_Support] Help!! Questions from a new mom. Well new to seizures anyway.
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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, about every two weeks. She also has Atypical Absence seizures sprinkled throughout the day.
I'm curious, who referred you to Dr. Goins? We live in Monmouth and travel to OHSU because we like the pediatric neurologist there - yes, it is a bit of a drive, but the peace of mind for mom and dad is well worth it. There is no one in the immediate area that we feel could come near the high quality of treatment that we have become accustomed to over the years. Your neurologist should be able to answer all the questions you have - write them all down so you don't forget any. Some phyisicans are better communicators than others - hopefully when you get this neurologist in front of you, he'll give you the one-on-one time you so desperately need. Perhaps the doctors office could notify you if a canecellation occurs before your scheduled appointment ( I know how antsy you must be). How is your medical coverage?
Regarding the lack of oxygen, any lack of oxygen to the brain is something you want to try avoid. We have always used the "three minute " rule. If seizure activity is occuring and decreasing the level of oxygen to the brain, and you need to get medical attention, five minutes is a long time to wait. When Blair was young and in dire straits, we went to the ER as often a we felt was needed. We actually developed a great rapport with the staff there as often as we showed up. There is also medication that can be prescribed to you (Diastst) that you can dispense rectally in the event of a lengthly seizure. Your doctor will probably discuss this with you.
I know how terrified, confused, emotionally numb you and your husband must be. Getting seizures controlled, eliminated or just reduced in number, is a roller coaster ride. You need to know that thankfully, there are so many treatment options out there that weren't available in years past. You also need to know you are not alone, and the more families you contact about your situation, the more knowledge you yourself will acquire. If you'd like to contact us, let me know......
Hugs,
Bonnie
Blair's mom
To: Cent_Wa_Epilepsy_Support@yahoogroups.com
From: davidandtaniastraub@...
Date: Mon, 2 Feb 2009 17:34:04 +0000
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.
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.
Windows Live™ Hotmail®…more than just e-mail. See how it works.
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