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Adult Progressive Myoclonic Epilepsy

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

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@hopeful33250

@possumm Hello Tena,

I am so glad that you posted an update about your son's condition. I am sorry to hear that his situation has not improved. It must be heartbreaking to see this deterioration and not to be able to do anything about it.

Your anger and frustration with your current medical team are certainly understandable. You are doing a great job advocating for your son and you deserve the support of his current doctor.

Is your son's doctor now willing to process the referral to Mayo?

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Replies to "@possumm Hello Tena, I am so glad that you posted an update about your son's condition...."

To my knowledge he still hasn’t made the decision to place referral request but we have an appt in October so we will be very strongly demanding a referral or we will be removing our son from his care if I’m able to have his PCP do a referral to Mayo for us. I’m not sure if a referral is even needed but I’d rather have that along with clinic to clinic transfer of all medical records and test. It is a very long distance to Mayo and I’m not even sure my son can handle that even over the course of a day or two but they are literally our last chance of hope and not simply from a medical standpoint but our sons mental status as well. Depression and frustration of losing all of your abilities while fighting with your own body has really taken a toll on him.