8-month old and Keppra - need advice PLEASE - Epilepsy Message Board

iansmom · 03-17-2003, 02:52 PM

I'm very frustrated with my son's doctor. He's 8-months old and has been diagnosed with epilepsy. We've had four grand-mal seizures to date that have been witnessed by others, the longest lasting right at 5 minutes. He's also had numerous episodes where he is unresponsive, not turning his head to his name being called, blinking, etc.
The first two seizures were at day care and the ambulance was called both times. At first they said that the seizure didn't actually happen. The second time they believed us and started him on Tegretal, which he had a quick reaction too, including hives and rash. The third seizure was actually the first one that I witnessed, and it scared the life out of me. I called the doctor's office right away and it took them 7 hours to get back to me. They started him on Trileptal, which took him a day and a half to have a reaction to.
Now he's had a few more episodes of small seizures where he "zones out." They now want to start him on Keppra, which I'm nervous about. Does anyone have any experience with this and what to watch for? Any other advice? I could really use some assistance here.

Thanks - Val

sekharp · 03-17-2003, 04:56 PM

Sorry to hear about your child's troubles. ... I take 1,500 mgs of Keppra a day, and I am trying to get off Dilantin. I have a lot of side effects from it but I get good seizure control. I am 26, so obviously my body is different than an 8-month-old's. But this being a new drug, I can understand why you are concerned. I would just search for Keppra on the Web sites of the National Institutes of Health, or on Yahoo! Health. ... I don't know how many studies have been done on how Keppra performs in pediatric patients. ... Will your child continue taking other drugs? Or will it just be the Keppra? I wish you luck. ... Sometimes it takes some switching of drugs to get the right mix but when it's your child it's tough to take. ...

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All of us has an angel, if only we know where to look.

lazoo · 03-18-2003, 07:11 AM

Hi - I understand how concerned you are. My 8 yr old daughter is on Keppra. She was initially on carbatrol (generic for tegratol) - which caused her spine to bend forward, she couldn't straightened up and walk and was in severe pain. They had never seen a reaction like that. I was terrified of any drugs after that and waited about 6 months to put her on any. Witnessing the seizures - about once a month - made me change my mind. She has been on Keppra about 4 months - so far no noticeable side effects. Her dosage is 250mg. It hasn't stopped her seizures completely yet, but she is having a lot fewer. She has partials and was having up to 30 in one day - now just 2-3. She is very short tempered at times and seems to get upset over little things, but I can honestly say she was that way before she started the Keppra. I have read that after about 6-9 months on the drug some experience rages - uncontrollable anger - that may be something to look for as well as the side effects listed when you purchase the med, such as sore throat, etc. I'm thinking the seizures cause my daughter's irritability, because as I watch her, she becomes more agitated in the couple of days before she has a seizure. After the seizures, she's calm again. I don't know if others have the same experience or not, but I've read that about animals that have seizures - that hours or days before they seize they become agitated. I can only imagine how difficult this is for you with a baby. I'll keep you in my prayers. Best wishes.