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Dying Brain?

Sun, 08/06/2006 - 00:57
I was diagnosed with a "seizure disorder" in late 2002 (but it's billed to my insurance as "epilepsy") since my neuro insists it cannot truly be epilepsy at my age (then 37, now 40) unless I have a familial history (apparently I cannot be the family's epilepsy trail-blazer). Instead, he announced my seizures (simple partial into partial complex) were the result of a part of my brain "dying" (????--he went on to tell me it was a part I wasn't using, which I found to be a little presumptuous). He also insists stress plays no part in making my seizures worse (I have a 4.5 yr. old autistic son, so there's definitely some stress around here). Increasingly I am not sure of this man (who is the head of that hospital's neuro dept.) actually knows what he is talking about. Tegretol with Dilatin made me a zombie. Depakote (still with the Dilatin) made me sick. I have now been on Topamax and the ever-present Dilatin since 4/2003 and it's worked well other than the total loss of almost all of my vocabulary and the occassional "break-through" seizure (most of which turned out to be caused by another drug I was taking--cough medicine, an antibiotic, etc.). My greatest fear is being out somewhere with my son and having a seizure (kids with autism are notorious runners, and my son would welcome the opportunity to bolt). We're considering getting him a support dog, not just for his own needs, but to watch him when/if I suddenly cannot. K.

Comments

Re: Dying Brain?

Submitted by txrhb1 on Sun, 2006-08-06 - 23:15
Hi K, and welcome ! First off, I have to tell you that I love your user name !! Laughed my patoot off! If I were you, I would consider getting a 2nd opinion, preferably from an epileptologist (neuro who specializes in seizures). A "seizure disorder" and "epilepsy" are usually one and the same thing. Both refer to unprovoked seizures (i.e. not due to drug use, low blood sugar, etc.) I am living proof that you can be diagnosed with seizures/epilepsy at a later age - 47 is when it hit me with a BANG, although I'm sure I've had it much longer. The remark he made about part of your "brain dying"?....a bit unsensitive in my view. I do have mesial temporal sclerosis, which is a lesion in the temporal lobe area of the brain. Some of the neurons in the area of the lesion have shrunk, but it doesn't mean my brain is dying. My epileptologist was absolutely great in running EEG's and MRI's to find out everything she could. She also works very closely with me to find a drug or combinatiion that causes the lowest amount of side effects, and the best control of my seizures. You are certainly right in worrying about being with your son and having a seizure. If you need help finding a specialist in your area, you might try this website http://www.epilepsy.com/dr_redirect.html All doctors listed on the site are members of the American Epilepsy Society. I wish you the best of luck finding answers, and keep us posted, okay? ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Dying Brain?

Submitted by Anonymous on Mon, 2006-08-07 - 00:58
You're not the first, and won't be the last who have been confused with terminology! Some people may use terms differently depending on whether there is a known cause to seizures or not. Here's a link to basics of seizures and facts/myths that that may help-

www.epilepsy.com/epilepsy/main_epilepsy.html

www.epilepsy.com/101/ep101_facts.html

Here's a few safety tips that may help parents with seizures. Of course any idea needs to be tailored to individual situations... - harness or 'bungee' cord (forgive me for forgetting name of this) that can be attached to child's wrist and one to yours - use an umbrella stroller when out in crowds - travel or shop w/partner or friend in large crowds. Stick to small stores when alone. harder to get lost! - put ID cards on you and your child. Using the ID tags and emergency medical bracelets on a child's shoes usually is easier to keep on than necklaces. - if child is a wanderer anyway, consider bracelets that trigger an alarm if the person wanders away from the house.

This isn't an exhaustive list, just a few ideas. Exceptional Parent magazine is a good resource for safety tips of kids with disabilities that may be helpful, regardless of whether parent has seizures. Epilepsy Foundation also has tips for parents, as well as this site!

www.epilepsy.com/epilepsy/safety.html

www.eparent.com

www.epilepsyfoundation.org/answerplace/Life/adults/women/weiparenting.cfm

Hope this stimulates some ideas. Talking to a nurse or social worker can be resources to help in managing both the seizures and autism. Stress, while not a cause of epilepsy or seizures, can affect seizure threshold in some people, and affects overall well-being in many of us.

Epi_help

Epilepsy.com Resource Specialist

www.epilepsy.com/epilepsy/main_epilepsy.html

www.epilepsy.com/101/ep101_facts.html

Here's a few safety tips that may help parents with seizures. Of course any idea needs to be tailored to individual situations... - harness or 'bungee' cord (forgive me for forgetting name of this) that can be attached to child's wrist and one to yours - use an umbrella stroller when out in crowds - travel or shop w/partner or friend in large crowds. Stick to small stores when alone. harder to get lost! - put ID cards on you and your child. Using the ID tags and emergency medical bracelets on a child's shoes usually is easier to keep on than necklaces. - if child is a wanderer anyway, consider bracelets that trigger an alarm if the person wanders away from the house.

This isn't an exhaustive list, just a few ideas. Exceptional Parent magazine is a good resource for safety tips of kids with disabilities that may be helpful, regardless of whether parent has seizures. Epilepsy Foundation also has tips for parents, as well as this site!

www.epilepsy.com/epilepsy/safety.html

www.eparent.com

www.epilepsyfoundation.org/answerplace/Life/adults/women/weiparenting.cfm

Hope this stimulates some ideas. Talking to a nurse or social worker can be resources to help in managing both the seizures and autism. Stress, while not a cause of epilepsy or seizures, can affect seizure threshold in some people, and affects overall well-being in many of us.

Epi_help

Epilepsy.com Resource Specialist

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