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.
Looking forward to getting to know some of you here.