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Child has seizures with leg shaking. Taking Clobazam. EEG, CT scan, MRI normal. Brain damage?

Nov 2013
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My son has seizures in some stage of sleep...his seizures ALWAYS start in the right foot and present with shaking of the right leg. Sometimes thats all that happens (the shakes wake him up). This started at age 8.5. He is now 12 (and deep into puberty). He was over a year seizure free and just experienced a major seizure (started in the right leg, moved up fast and became a grand least thats what it looked like...he never lost concsiousness though and could hear everything...his vitals were good afterwards but the seizures seem to last for over 5 minutes??). He was on 20 mg of clobazam (onfi) and is moving up to 30 mg. He takes all the onfi at night b/c his seizures are nocturnal (and it makes him too tired to take in the am) -is it safe to take 30 mg at once (he is 135 lbs. at 12). Ever since he had the seizure at 8 he has twitched in his sleep (usually the right side). All his eegs, cat scans and mri's have been normal...could he be having small seizures during sleep, can this cause brain damage? Is the 30 mg too much-Help! Is there something else we should do we are at Mass General currently...he also has ASC (but very slight)
Posted Tue, 13 Aug 2013 in Child Health
Answered by Dr. Sudhir Kumar 33 minutes later

Thank you for posting your query.
I have read the detailed history sent by you regarding your son's epilepsy. It is safe for him, that he gets seizures only at night, which is better than those who get seizures any time, thereby increasing the risk of injuries.
Regarding medications, clobazam 30 mg taken daily once at night is safe. The only side effect to be expected is drowsiness, which should not matter, as it is taken at bed time.
If clobazam is unable to control seizures, then, other options include levetiracetam, divalproex, oxcarbazepine, etc, which all are effective against partial as well as generalized seizures. These have extended release preparations, which can be taken once daily at night.
I hope it helps. Please get back if you have any more queries.
Best wishes,
Dr Sudhir Kumar MD DM (Neurology) XXXXXXX Consultant Neurologist
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