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.
need feedback
Mon, 08/13/2007 - 06:22Topic: Parents & Caregivers
my son is now 24 mos. old. diagnosed with epilepsy @ 12mos.
different types of seizures ie: absence, myclonic, tonic clonic.
Rylee is taking trileptal and topamax. until recently seizures were daily (grand mal) with about 30 petit mal/day.
we just went 14 days with no grand mal! first time in about one year.
Rylee has behaviour issues that seem to be related to his seizures. this has improved with reduction of seizures.
Ry's temp. will go during some of his grand mal seizures and then reduce shortly afterward. my big concern is that after some grand mals Ry will shake almost uncontrolably for up to 10 min. Does anyone else experience this? is it the short lived raise and drop in temp? is it part of the seizure?
Ry has been status more than once and we are always concerned about length of seizure. find it difficult to tell some times if/when over. typically Ry will fall directly asleep afterward.
Thank you,
RyRy's mom
Comments
Re: need feedback
Submitted by eanj on Tue, 2007-08-14 - 13:49
Good Afternoon!
My son always seeing a spike in temperature during/ after his grand mals. It is back down to normal within the hour or so after seizing. I know it happens every time because I am a BIG fever watcher. (My daughter suffers from Grand Mals that turn into status every single time if she gets a high fever.) Our neuro said that a raised temperature is a normal reaction to a seizure, although not all children have this occur and not all seizures will cause the temp to go up.
I understand about wondering if the seizure is over; my daughter always is asleep at the hospital after status and I sit there wondering if it is really over. The doctors seem to think so because she is not showing physical signs of seizure. However, I always wonder because she also had abscence seizures that are not always noticible to the eye.
Jean
Re: need feedback
Submitted by Abbygirl on Tue, 2007-08-14 - 12:57
There's not a whole lot I can say to help you but it does help to know that there are others in your situation. Your story sounds just like ours. My daughter Abby was diagnosed at 1 yr. She very seldom has complete seizure freedom. She was having up to 40 seizures a day. She is on ketodiet ( I would highly recomend, if you haven't tried it), had VNS surgery, and is on Felbatol. She was seizure free for about a month. Nothing works for long. It seems they live through anything and come back with a vengence. My daughter was diagnosed with Lennox-Gastaut Syndrome- A severe seizure disorder. I would check into that. She was diagnosed when she was 3. She also keeps an elevated temp due to seizure activity. It is normal when she has none. I wish you luck and will pray for your son, no child should have to go through this.