10 year old son - Epilepsy Message Board

paxon · 06-07-2004, 08:37 PM

I am new and have a number of questions but first some background. My 10 year old son had two Tonic Clonic siezures two week apart back in November. Both occurred at about 3am, lasted about 40 sec and were followed by leg kicks while he was awake. Attempted 3 EEGs during day under sleep deprivation but he never fell asleep. Doctor would not test him at night. He said he couldn't fully diagnose within him falling asleep but went ahead and prescribed Carbitrol. We did not fill the prescription - didn't feel we had enough info. He went 5 months with no siezures and then had another Tonic Clonic 6 weeks ago while he was sleeping. Last night he had 4 Tonic Clonic siezures between 11:00pm and 5:30am. We was awake when the last two occurred.
Does anyone have experience with Carbitrol?
Has anyone seen a gap between siezures and then a cluster - does this mean anything?
Does an EEG require complete sleep to diagnose?
Should we try to control the siezures with medication or just let them take their and hopefully he'll grow out of them?
Do siezures begat siezures or do siezures result in more siezures?
Can anyone recommend a good clinic/hospital in the midwest down to Texas that can help troubleshoot?
I don't feel I'm getting solid direction from my doctor (he's supposedly the best in the state). I'm not sure he really knows. Any replies would be appreciated.

jake's-mom · 06-07-2004, 09:32 PM

I am new too and don't know if I can be of much help. But my 7 year old son also has Tonic-Clonic seizures (Starting 2 months ago) but he is on Lamictal. I suspect he may have been having seizures at night for awhile before we knew what was going on. We didn't know he was having seizures until he had one after he got out of bed. After his first 2, He did skip a month and then have 2 more. Then 3 weeks before having another. Did your Dr. tell you if your son's EEG was normal when he was awake? Jake's was abnormal when he was awake and asleep. Did they run any other tests like CT Scan or MRI and were they normal? Ours were normal, but that is supposedly common with his type of epilepsy. We use Texas Children's Hospital in Houston. The "Bluebird Clinic" there is supposed to be Awesome. I know they are popular because it wasn't easy for us to get in. Your Dr. has to refer you or you can do like we did and just drive him straight to the ER there when he has a seizure. That's the only way we could get a Neurologist there. I don't know how far you are away from here, but I'm sure you have a Children's Hospital somewhere you can get to. I have been very impressed with ours.

I can't help you with medication because we haven't even reached an effective dose yet. Apparently you have to step up slowly to avoid side effects.

Good Luck! I know there are a lot of people who post on these boards with more experience that can help you a lot. Just know that I understand how frightening it is to go through this and you are not alone.

Wendy

kayakmom · 06-08-2004, 10:21 AM

So sorry that your son has been having these. Yes, you do need to have the sleep portion to the eeg to have a better diagnosis. One reason for having the most information possible is the it is necessary to pick the best medication.... It can be a tonic clonic seizure, which is a generalized seizure (activity all over the brain from the onset) or it can be a partial seizure (starting at one part of the brain) that rapidly secondarily generalizes (spreads to the whole brain)......

Carbotrol (sp) is in the family of Tegretol and can be very affective for partial and generalized seizures.

Yes, seizures can occure and abate for no clear pattern. One of the many annoying features for me. About the time I find a pattern it all changes.
My son had his first day time tonic clonic seizure in 98, then did not have another in the day for 1 1/2 years. He had a bunch of partials and tonic clonics in sleep through all that time, however.

If you do not find your neuro is working with you, try a different one. Does he have facility for a 24 hour EEG? If so that may prove to be a good way to see what is going on. Did you sleep deprive him? This also can help to bring out the activity for the EEG....

Some neuros will treat with the second seizure even before the EEG corellation, others wait for the clear answer. (My son was treated 3 1/2 year and has been off meds now due to a misdiagnosis. Still having seizures, but on the road for better treatment. We are heading to neuro #5 now. #3 can treat and is great but has no facility for testing that he needs....)

Hang in there. Hope you get answers soon to help him....

paxon · 06-08-2004, 12:21 PM

Thank you both for responding. Dr. said EEG (awake) was normal. MRI was normal. Dr. does not have 24 hour facility. We have an appointment tomorrow and will try to get a reference for another facility. Thanks for the info on the Bluebird Clinic - out of the way, but it sounds like that may be necessary. Good luck to both of you. Please continue posting what you learn.

kayakmom · 06-12-2004, 09:12 AM

Paprikash, I understand your alarm, but the neuros have allowed my son to go unmedicated (took him off cold turkey 22 months ago) for the same thing.

it happens....