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.

12 yr old son with BRE and very scared

Fri, 01/26/2007 - 17:58
My 12 yr old son was diagnosed with BRE 3 1/2 years ago. His EEG came out normal, but his symptons were classic for BRE. He had infrequent and mild sezuires (one side of his face would twitch, his mouth would open and close, he would drool and he couldn't talk, after his speech was slurred for awhile). He had a second EEG a few months ago and it still came out normal. We have never medicated because the DR said the seizures wouldn't hurt him and he would grow out of it. Last week, however, he started having a seizure every night and one night he had two (20 minutes apart). They always seem to happen 30 minutes after he falls asleep. The seizures are now more scarey as well as nightly. He makes a choking sound and remains lying down (whereas in the past he would sit up). Now the entire side of his body is convulsing. He still drools and his speech is slurred after the seizure ends. I am so worried that he can't breath while this is happening because of the choking sounds, although his DR tells me he can breath. I really can't see how! Does anyone else have experience with this? Are there dangers the doctor is not telling me about? The DR says it may be time medicated. When I asked him why (since he's assured me that the seizures are not dangerous), he said for "social issues", such as sleepovers. Although my son says the seizures don't hurt or scare him, he is now afraid to go to sleep. Maybe he's picking-up on my fear. I'm so worried that he'll have a seizure and choke to death (certainly not a fear I've shared with my son). Also, my son has been on Strattera for the past few years for ADHD. I asked the DR if this could be contributing to the situation and he says no, however, there is a seizure warning with Strattera. Anyone else have experience with Strattera and seizures? Sorry about babbling on..but I've been a wreck for the past week. Cheryl

Comments

Re: Re: Re: Re: Re: Re: Cheryl, I am not sure if my

Submitted by jacksmom on Fri, 2007-02-23 - 23:51
Hi Cheryl, It's so nice to hear from you! Thanks for asking about Jack. He is doing good. Seizure free still. (I just knocked on wood!) Next Thursday will be 2 months! I am so happy to hear that Bo hasn't had anymore seizures too! Jack's appt. with the epi. specialist was last week and it went well. The doctor is wonderful! Really liked him and he validated our concern for wanting to check into this further. He was surprised that the ped. neuro. didn't want to do an MRI or anything else. SOOOO... we are taking Jack at the end of next month (spring break) to get an MRI and a 24 hour EEG. The doctor wants to rule out that its not cortical dysplasia. That is a benign tumor by the ceberal cortex that you can be born with. It can bring on seizures as it grows. We are hoping he doesn't have this because it would be a lifetime of seizures and/or surgery to take out the tumor. I never thought I would say that I would rather Jack have a childhood form of epilepsy but at least with BRE he will grow out of it. I just want some answers! I want to know what we are dealing with. So that is where we are at right now. I am just relieved that he has been given a "break" from seizures right now. I know it can happen any time, any where but for now he is sleeping and its been over 2 hours so I think we can count another day seizure free! Well, I will keep you posted on the outcome next month! I hope Bo continues to have seizure free days and nights! Take care and thanks again for checking in! Sheri

Re: 12 yr old son with BRE and very scared

Submitted by ritadar on Wed, 2007-01-31 - 12:51
Our son is now 17, he first started having seizures the day after he turned 11. His nero has never told us what type of epilepsy and really didn't call it epilepsy until I needed something for school last week. He has only had maybe 10 to 12 seizures,so far they have always been while he was sleeping. I never did sleep well, but haven't slept more than 1 hour at a time since he turned 11. It is just so scary, every little noise, I am jumping out of bed. It is hard to let him spend the night elsewhere. He started trileptal back when he was 11 was on it for a little over 2 years. End of 8th grade year had to start back on meds, had 3 seizures in one night. At that time we started him on topamax because of the weight gain on trileptal. He is short and stocky, about 5'10" and 190#. One thing we have discovered is that when he was on acne meds it messed with his seizure meds. We took him off acne med in Nov, he had one seizure the early part of Dec and pray to God that he doesn't have any more. Please if you have any questions or I can help in any way e-mail me at ritadar55@yahoo.com. I know what you are going thru. Have a wonderful day and an even better night. Ritadar

Sign Up for Emails

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