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Posted by Tara on February 05, 2000 at 19:45:14:

In Reply to: Re: newly diagnosed seizure d/d posted by Dee on December 09, 1999 at 13:08:11:

: : My son age 17 has just been diagnosed with juvenile myoclonic epilepsy. He was driving home from a campout (had been up amost all night and sleep deprived) when he "blacked out." Luckily he was not hurt. He has a manual transmission so when he jumped a curb the car stalled out. No one saw the incident but medical people say when they got there he was alert but confused. Was able to give them phone numbers etc but doesn't
: : remember the ambulance ride or some details about the campout the night before. So, a seizure was suspected. I am pretty irratated at this point as we have suspected seizures ALL his life but doc never thought too much given the symptoms. This is a kids who has also always had diffuiculty in school. Poor concentration, memory etc. Now, he is a senior and we have to wonder what role if any the seizures played in this. He just had a 24 hour EEG and it
: : showed fairly frequent seizues (with absence of physical signs). I always tell my patients parents to trust their instincts where their children are concerned, but I failed to do this myself... to be more aggressive in asking for tests etc. Then I read about JME and get irratated all over again as he has shown classic symptoms almost ALL his life and I wonder how the docs couldn't have been more concerned. It took a car accident to get them to say,
: : WEll maybe we should take a closer look at this.....WEll, the other thing I tell parents a lot is one of the best way to find information about a disorder is to talk to other parents. So, here I am. The hardest part so far for my son seems to be the fact he will have to take medicine all his life and that he can't drive for a year!!! (tHAT REALLY HAS HIM BUMMED). For me, the hardest part has been dealing with the anger that i feel that this was not
: : caught sooner. I work with kids with cancer so it is easy to put the seizure disorder in proper perspective but do wonder how the seizures have affected him and will in the future. He will be started on depakote. Any words of wisdom??? Dee

: Dee,

: We share the same name and I have a son 18 with generalized seizures...petit mal and grand mal. Our son had peit mal starting age 7 and grand mal at age 13. He has been on numerous medications to 5 years. He still does not have his life back. Depakote was a nightmare for him. That was the first medication they put him on. He gained 50 pounds (effected self esteem) and saw double, was uncoordinated, and lathargic, as well as unhappy. He tried several other drugs but is currently on lamictal with a small dose of topomax. He hasn't had any gran mal seizures but still a few petit mal and now he falls and drops things. We are trying to find out why this is happening. Hopefully your son will get on a med and be successful from the beginning. If he doesn't keep doing what you are doing. There is a lot of information out there. Dee

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