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Topic: epilepsy

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Subject: epilepsy
Date Posted: 4/5/2008 8:57 AM ET
Member Since: 10/30/2007
Posts: 2
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just  found out 3 year old nephew has this condition he had over 200 seizuers in 4 days any thoughts from anyone

Subject: seizures
Date Posted: 6/20/2008 2:57 AM ET
Member Since: 11/26/2005
Posts: 773
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My daughter suffered seizures for 17 years.  When she went to UCLA for an operation (not sezuire related) they changed her seziure drugs and SHE HAS BEEN SEIZURE FREE FOR 7 YEARS.  Feel free to pm me and I will be happy to share the medication name.

Date Posted: 6/26/2008 12:46 AM ET
Member Since: 8/2/2006
Posts: 725
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My 21 yr old son has been seizure free for 5 yrs after experiencing 16 yrs of seizures. He has been off the medication for the last 8 yrs. I decided to wean him from the medication with the doctor's help due to the side effects.  My son's was a 27 week preemie and suffered brain damage. we were told that he would probably experience them the rest of his life. Looks like he may have beat the odds.

Is there any indication of what has caused your nephew's seizures?

Date Posted: 12/20/2008 11:02 AM ET
Member Since: 8/6/2005
Posts: 66
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I hope nephew is one of the lucky little ones who finds a cure very easily.  I have my fingers crossed him. :)

We messed around with different combinations for 9 years.  Actually the medication (Felbatol) my son was taking earlier and then taken off. There was some panic about aplastic anemia (bone marrow stops producing blood cells).  After a few years of further brain damage he was put back on it.  Now it has been 10 years. Son takes a very low dosage.  Two things if I had been told he was born disabled. He would NOT have been vaccinated. So much for informed consent!. I also would have stuck with the Felbatol/Felbamate. Found out later when we switched doctors that some of the people who developed aplastic anemia were on chemotherapy which destroys bone marrow.  Duh!

Oh we also did the Ketogenic Diet for 19 months. I was told the nutritionest went to Boston  Children's to learn about it. Later I learned they only went by the book. Some of the measurments in the book were wrong.  I called another parent who helped me adjust his meals.  Discovered into the diet that my son had reflux. Actually after we took him off we discovered he had ulcers. Not caused by the diet. When he was a infant I was told my son had colic.  Apprently that means you sleep for only 4 hours and keep jerking awake the rest of the time. (just a new mom who needs help one doctor told me)  Now I know it was reflux and seizures.

My son is 19 now and my oldest. He is healthy but very delayed both mentally and physcially. Some of this is the way he was made. My husband and I are his legaly guardians.

Date Posted: 6/9/2009 11:36 AM ET
Member Since: 1/15/2009
Posts: 13
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My father is epileptic-- he had seizures until he was 8ish, then they stopped for a while. In his twenties they began again, and has had them since (he's 49 now.) His medication doesn't cure it, but lessens the episodes to 2-3 times a month.

We're not really sure why he has them-- he's gone through a few experimental surgeries for it with no avail. The last one did more harm than go (long story.)

Even if your nephew doesn't get cured right away, remember that epilepsy isn't a death sentence! My father is a preacher, and has four associates degrees (of which he reminds us constantly.)

I'll be praying for ya!