Posted by jeff
on December 16, 1999 at 19:16:39:
In Reply to: newly diagnosed seizure d/d posted by Dee on December 07, 1999 at 11:26:06:
: 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
33yrs old now, same problems at age 13, phenobarbitol till age 30. was seeing a specialist for children until age 30.went to an adult specialist and was told we haven't prescribed phenobarbitol for adults for over ten yrs.i had many hallucinations on pheno, now on tegritol CR no problems now.
Child specialist repeatedly told me no orra can be detected before a seizure, but now has been proven.Don't worry too much about your son , i've become a successful businessman and so may he.