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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 will check all information and posts. We have considered sleep apnea since that is sometimes an inherited condition and my husband and oldest son suffer from this along with most of my husbands family but this isn’t something our youngest has although he is hypoglycemic like myself as well as my siblings and mother were and we battle that regularly especially with his swallowing issues limiting intake but he has done very well using ensure to keep everything stable so far when he’s unable to eat. His Myoclonics have him jerking near non stop so he is totally dependent on me for his meals, drinks and personal care although we do encourage him to try doing simple things to see if he can surprise himself and there are times he can hold a straw or piece of utensil but 98% of the time he is unable to do so . Some of this is also because of extreme fear after numerous injuries that resulted from the uncontrolled jerking including broken bones and broken teeth that resulted in dentures at 18. Sunlight ( requires complete eye coverage without making him blind and any home light above our new wattage of 15 triggers his GTC and progressive myoclonics but with the new light strength he is finally able to watch cartoons , talk and seems to enjoy our little fusses a lot better . It’s a constant roller coaster of emotions as frustration for him and us as parents trying to gauge epilepsy or fear and coming up with the best plan for either.

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Replies to "Thank you I will check all information and posts. We have considered sleep apnea since that..."

My symptoms are light-weight compared to what you are dealing with. I am wondering if you record the doctor sessions you have? I found it very helpful when I went to the Mayo Clinic. When I replayed the recording it amazed me how much I missed in the conversation. I always ask if it will be ok (required by law) and sometimes they ask why. I tell them because you are about to say something I won't understand or perhaps use a word I will have to look up later.