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Help! Seizure Activity??
Wed, 01/09/2019 - 12:37Topic: Epilepsy.com Help
Hello, I am new to this group. I have an 18 year old son who started have tonic clonic seizures when he was 15. He only had them once every couple of months. A year ago he had two different instances where he had two tonic clonic seizures in the same day. In between the two seizures he had a long period of his head dropping down slightly and jerking twice and going back up. It did that over and over again for hours. He was seizure free for 8 months and then one day started the head dropping thing but no tonic clonic seizure. His head just did that over and over again for a couple of hours and then stopped. He has had three of those episodes in the past 3 weeks. I can't seem to find anyone who has had anything like that before. The dr isn't convinced its actual seizures but doesnt seem too concerned to find out what it is either. Can anyone help me?? Thank you! -Eliza
Comments
It sounds like there's enough
Submitted by Amy Jo on Fri, 2019-01-11 - 16:36
It sounds like there's enough time to get video on your phone, that can help when docs blow you off. Agree with the suggestion to get a second opinion (look for an epileptologist). There may be some added complexity - you/him/insurance - note that he's an adult and that means it won't be like when he was a minor.
I'm with everybody here Eliza
Submitted by Jazz101 on Fri, 2019-01-11 - 18:44
I'm with everybody here Eliza. Try to find another neurologist, one who specializes in Epilepsy. Neurology is a wide. Some neurologist specialize in Strokes; some in Parkinson's etc. In your case you need one who specializes in Epilepsy.For hospitals who do a good job in neurology, here is the link I have and continue to use. https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryAs you scroll thru the list in accordance with their ratings in neurology and neurosurgery, if there is one that is in your state, or one in a neighboring state that is just over the river, call them. For example, if you are in New Jersey, well, New York Presbyterian Columbia is just across the Hudson River. Just an example because I am not sure where you reside. When you call the hospital find out if they have what's called a "Comprehensive Epilepsy Center." That makes it more probable for you to find a neurologist who specialized in Epilepsy.The fact that he has had seizures in the past and is now displaying some rather odd activity, I think it's best that you find a neurologist who specializes in Epilepsy to get a second opinion.Best Regards
Sounds like seizures to me.
Submitted by birdman on Thu, 2019-01-10 - 09:10
Sounds like seizures to me. Has he only been seen by the one doctor? It's understandable that a doctor may be convinced they are not actual seizures as there are psychogenic non-epileptic seizures. But to determine this the doctor should have requested an EEG be done. It deserves attention. Can he be seen by a different doctor for a second opinion?