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@dragonoma07

Hi, I'm new and I need some questions answered please.
My son is 19 and was diagnosed with absence seizures. He won't take his medicine. He's had 2 grandmals since he was diagnosed. His doctor has told him that it could happen again at anytime, but he still refuses to take them.
I don't know what to do. I get it he's angry, depressed, distant from everyone. I am at my wit's end. He has also had testing done and it shows low levels of his medicine.

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Replies to "Hi, I'm new and I need some questions answered please. My son is 19 and was..."

@dragonoma07
Hi there,
Welcome to Mayo Clinic Connect.
I have heard that same situation countless times myself included.
I have had Epilepsy for 52 years.
I think you already know there isn’t much you can do. After all teenager know best, to hear them tell it.
When I was 15 my seizures were severe and uncontrollable. I was an impatient and spoiled brat. I went to every type of doctor and was in UCD, UCSF, Stanford, UCLA etc etc. I had daily Cluster Tonic Clonic Seizures and since no doctor or hospital could offer me any help I figured I knew best. I was in for a rude awakening. I stopped my meds and ended up in the hospital in Convulsive Status Epilepticus. I was put into an induced coma to stop the seizures and was fortunate enough to wake up 8 months later. Although at the time I probably didn’t think I was fortunate. The nurse came in and said your parents are taking you home today. Parents? What parents? I was terrified, who were these people? When I got home my parents had pictures and photo albums out and since I look just like my Dad I must have accepted them lol. When I was woke up every memory I ever had was gone. I didn’t know anything, not even my name. To this day none of those memories ever returned. I was put in about 8-10 comas after that, occasionally with a similar outcome. Not because I stopped my medication again though, I learned my lesson. A lesson I hope no one ever has to learn. But I’ve had friends who have died from Status and even if you tell your son he may reply like I would have, back in the day, “it won’t happen to me.” He should thank God he doesn’t have a more severe form Epilepsy. How old was he when he developed the absences? Where they ever controlled? IF, he continues to refuse his meds he will be at an increased risk of SUDEP (Sudden Unexpected Death In Epilepsy) since he is now having Tonic Clonic Seizures. He could have Nocturnal Seizures sometime so as a precaution I’d invest in a seizure pillow. Some people have suffocated using regular pillows during a Nocturnal Seizure. (Warning, they aren’t very comfortable. At least they didn’t use to be.)
Does he drive?
I wish I had an answer for you but I’ve never been a parent. I’d probably cram them down his throat somehow. I wonder if a pharmacy, perhaps a Compounding Pharmacy could formulate a liquid that would be tasteless that you/someone could put in his drink. I’m sorry I don’t have the answers you need so badly.
Wishing you all the best,
Jake