Mom of 5 yr old with epilepsy

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Mamabear26cubs

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Hi all. I am the mother of a 5 yr old who was diagnosed with epilepsy when he was almost 2. At that time he had a "grand mal" seizure (I guess those are called generalized tonic clonic now), and went one to have a week of "drop attack" seizures while being hospitalized until the docs could get them under control. Since that time he's been on Keppra, which has controlled the seizures (or so we thought), but cause some significant behavior/emotional problems. He was put on Clonidine and B6 to help with the emotional regulation issues. Within the last year, we have realized that he is having nocturnal seizures, and possibly has a sleep disorder, as well. A recent sleep study showed almost 600 arousals in one night. So, he's been changed to Trileptal and we are half way done with weaning off of Keppra. So far, the night-time activity seems to be decreasing (we have a baby monitor that records video that is awesome!), and we have not seen any waking seizure activity with the wean off of Keppra (that's a big concern)! We live in ATL, GA, and have a new neurologist at Emory who seems to know what he's doing, but we're taking our son to Johns Hopkins in a couple weeks to see an epileptologist and sleep specialist for a consult. I would love to hear from anyone who has experience with nocturnal epilepsy. He has only had two abnormal EEGs over the years, and it appears that his seizure activity is in the frontal lobes.

Looking forward to getting to know some of you here.
 
Hi Mamabear26cubs, welcome to CWE!

I don't have nocturnal seizures, but many CWE members do and will chime in I'm sure. I'm glad the Tegretol is making a difference and that you can get off the problematic Keppra. Johns Hopkins has an excellent epilepsy program, so I think you will be in good hands with them.

Best,
Nakamova
 
I have nocturnal seizures sometimes. I never used to but as I got older things changed.

As far as my seizures go I don't see much difference between them & the ones I have in the daytime. I usually get partial seizures so I just wake up while having the seizure, wait for it to end, mark down the time I had it on the pad I keep at the side of the bed & go back to sleep.

I'd gladly answer any questions about them that you might have (if any).
 
My daughter also has frontal lobe epilepsy and her seizures are nocturnal as well. She was misdiagnosed with having nightmares for months. Can you tell me more about your camera? We are weaning Keppra and Im concerned I will miss something while we sleep. You can private message me if thats easier! Thanks!
 
My nocturnal seizures are pretty much like my daytime seizures. The only difference is I usually "sleep" through them, and only remember the ones I wake up to. Hubby tells me when I have them, which is about once a week or so. I don't have TCs, but I have partials, and rarely drop attacks.
 
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