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Adult Progressive Myoclonic Epilepsy
Epilepsy & Seizures | Last Active: Nov 26, 2020 | Replies (34)Comment receiving replies
He has Atonic as well as Tonic Clonic listed in the records from 6 neurologists but his epileptologist only has listed Intractable Epilepsy and last of two status epilepticus was July 2018 upon waking up from a nap that required 8 days this time in ICU w/intubation and took two hours and loads of meds to stop the seizures once intubated , nocturnal ( I cant remember if this is the actual name of the epilepsy) now has the progressive myoclonic epilepsy as diagnosis but all genetic test were negative, along with extreme photosensitivity . Our family refuses the progressive diagnosis since there is no test confirming this but he does show the clinical signs and symptoms which is why he suspects this to be the case. We have security cameras recording at all times so the doctor can always watch when we take clips ( Vivint security is connected to our phones) in order to understand or see any changes .
Replies to "He has Atonic as well as Tonic Clonic listed in the records from 6 neurologists but..."
Hello: i apologize if this is a bit scant but i just had to respond, just in case. My cousin’s daughter in Austria had a grand mal in 2016 (after many years of epilepsy), she was incoherent and in a wheelchair/bed for weeks Until my cousin transferred her to another hospital where it was determined that it was Hashimoto’s disease. Within days she was much better and has not had a seizure since. I don’t know what medication she takes but would be glad to ask. I wish you all the best with your son.
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We have his above his bed since his full body is involved with the spasms as well as his eyes mouth tongue and neck. Which to us these are the worst since it impairs speech and food intake.