Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

new to this board - several questions

Fri, 04/13/2007 - 14:04
My son, age 14, was Dx with generalized epilepsy - Dr. not sure if it's generalized epilepsy on awakening (not much info. on this) or juvenile myoclonic epilepsy. He had 6 tonic-clonic seizures between Jan and Mar '05. We also realized later that he had been having extremely brief absence seizures, for a few months prior to the T-C seizures. He was started on Trileptal, which didn't work (Dr. thought it was benign Rolandic), then a couple of other meds before being controlled on Depakote ER and Lamictal. Lamictal was stopped about 6-9 mths. ago due to rash. He has been seizure-free for 2 yrs. Dr. wants to wait 1 more year before weaning him off med. He is terrified of going off of it and I don't blame him. Also, I've read that if it's JME, the seizures usually always start up again if you stop med. and sometimes become hard to control again. Side-effects seem minimal on the med other than tiredness, although he always was a "tired" kid. He continues to do well in school, although sometimes I wonder if his memory is as sharp as it was prior to med. Dr. seems adamant about trying to get him off med. and give him a chance at "being healthy" rather than with "controlled epilepsy". Is this because of physical side effects or psychological effects of having epilepsy and society's fear of it? Any thoughts? Also, he sees a pediatric neurologist in Sacramento. Is an epileptologist different? If so, can anyone recommend one in northern CA? Thanks much! mom of T

Comments

Re: new to this board - several questions

Submitted by comomx3 on Sun, 2007-04-15 - 23:19
It sounds like your son has been seizure free for 2 years- correct? Your doctor wants to wait one more year before weaning him off the meidcations- correct? My doctor said 3 years seizure free and we would wean off medication also- of course, we haven't gotten there yet... From what I understand 3 years is the time frame because during that time your child grows and his body will go through many changes. If he gets through that without a seizure that's wonderful and a good sign that he may have grown out of them. How long has it been since his last EEG? The EEG should show if he still has seizures... I think. At least that's our test with Emily. (and the verificaitons we actually see everyday that she still has seizures). This sounds wonderful... mostly because it was our dream to be able to get our daughter off medication. Being on any medication is not great for anyone. I'm sure your isn't wanting to treat him for something he no longer has. This is a blessing. Go ahead and get a second opinion before you start weaning him off. I just heard about an epileptologist... Sounds like our next step too. Good luck to you.

Re: new to this board - several questions

Submitted by alias3rn on Tue, 2007-04-24 - 19:55
An epileptologist is a specialist in seizures. Its kind of like: would you go to a orthopedic doctor for surgery on your hand, or a hand specialist surgeon. The epileptologist knows practically everything there is to know about seizures and seizure disorders.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.