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Adult Progressive Myoclonic Epilepsy

Epilepsy & Seizures | Last Active: Nov 26, 2020 | Replies (34)
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@possumm

Thank you I’ve never heard of this disease but i will be researching signs and medications . At this point our doctor and us are searching everything because he just doesn’t know what to do next but thankfully we work together and consider anything and everything the other has to offer. He’s been wheelchair and bed bound way too long and we worry about what this is doing to him or if he can ever recover any mobility after all these years.

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Replies to "Thank you I’ve never heard of this disease but i will be researching signs and medications..."
Teresa, Volunteer Mentor | @hopeful33250 | Aug 4, 2020

@possumm Hello Tena,

As it has been about a month since you last posted, I was wondering how your son is doing. Are you considering any referrals for a second opinion yet or do you want to stay with your current medical team?

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Leonard | @jakedduck1 | Aug 4, 2020

@possumm
Good morning,
Have your sons seizures ever been controlled at all? This syndrome is difficult at best to treat sometimes successful for a while and then back to seizures. Your sons situation sounds extreme which I’m sorry to hear about. I know it may seem overly optimistic but we never know if or when seizures may stop. Does your son have any lesions or other abnormalities?
Has he ever had brain surgery, if so was it helpful at least for a while?
Take care,
Jake

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