son having more seizures - Epilepsy Message Board

ktondee · 04-10-2001, 05:56 AM

Hi,I have been reading the messages on this site for about a week now and thought maybe someone would have advice.My son is 11 years old and started having "spells" last Dec.Where he would become weak feel short of breath and have rt sided weakness,Needless to say he has had every test his Pediatrician and I could think of.About 6 weeks ago he started having what could be identified as seizures.Now has dx Juvenile Myoclonic Epilepsy.He began taking Depacote,and seizures improved but he continued to have mild one almost every morning.Phenabarbital was added about 2weeks ago.Now he is having seizures @night in a.m.,and occasionally in afternoon.Depacote levels have dropped from 86 to 62.Beacuase the Depacote makes him nauseas and he is gainig weight(6lbs in 1 mo.)He skipped 3 doses in 3 weeks before I caught him.Has anyone experienced this? He has barely attended school for going on 4 weeks now because he sleeps so long after his seizures.Our whole live now revolve around this.I am sorry to be so wordy but am frustrated now. Thank you for any insights or thoughts.

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eweejoe · 04-10-2001, 07:17 PM

My son has had seizures since the age of 6 months and he is almost 9. He has been on Phenobarb, Dilantin, Depakote, and Tegretol. Out of all of his meds, the Tegretol is the only one that didn't 'dope' him up and make him sluggish and foggy headed. He has been on Tegretol for almost 6 years now and I pray that the good Lord sees to it that he never has to change meds. It controls his seizures almost completely unless his level gets low due to weight gain, refusing to take his meds, etc. I know that doctors don't like parents who listen to everything they read, but I would NEVER again let anyone put my child on Phenobarb if it was the last medicine on Earth. It had horrible side effects and never did control the seizures, but he was too young to take anything else. I have a brother-in-law that was diagnosed with the same thing as your son when he was about 14 or 15 and he takes Tegretol for his seizures too and they are controlled as long as he doesn't stay up late into the morning or play a lot of video games. Don't know if it will help, I know different things help different people. Just sharing my experience with you and hoping that it helps in some way. Good Luck to you!!

ktondee · 04-11-2001, 06:28 PM

Thanks for the reply! Yes it does help to know someone else has gone through this stuff.My son was taken off the Phenabarb yesterday and already his seizures aren't as hard,though may be a little early to tell.I can see also that if we stay with this neurologist I will have to be more proactive and outspoken.Don't think he will care for this.Every time I speak with him he(the DR.) asks if I'm sure son is having seizures since his 2 eeg's were neg.Both eeg's done at times of day when he doesn't have sx and 2nd after he was on Depakote.Have many of you had Dr. constantly question seizure even though others have seen them and also feel they are seizures? I also wonder how long do you think you should give a Dr. before trying another.The only others are 250 miles away for a pediatric neurologist.Any thoughts are apreciated.(Kathy)