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16 Year old Son just diagnosed with JME
Sat, 10/19/2013 - 01:27I am very new to the world of JME. My son was diagnosed in early September with JME after 3 months of 10-20 times a day of him experiencing dizziness, loss of sight, can hear but unable to respond spells. The diagnosis was made after a 24 hour eeg that lasted 1 hour, due to him having 3 seizures after being connected. The neurologist started him on Lamotrigine and he is now at 200mg and continues to have the seizures. It seems that the seizures are more frequent when he is inactive. He has not had a Grand Mal Seizure, only the 10-30 second seizures. I am curious if anyone else has these type of seizures without the jerking motions? He does not seem to have the jerking motions at this time during the seizures. I am just concerned that they may not have the correct diagnosis, due to the medication not effecting the seizures. We go back to the neurologist on Wednesday and I can really use some advice on what I need to discuss with the doctor. I am feeling helpless and frustrated while my son becomes withdrawn and angry as he stands on the sidelines with his football team waiting for the medication to work.
Re: 16 Year old Son just diagnosed with JME
Submitted by HeatherRR83 on Sun, 2013-10-20 - 07:36
Hi! A neurologist is good, but maybe you want to consider an epileptologist (if you can)? They specialize in seizures and seizures alone. Since I don't know what town or state you reside in, I've included a link with some more information. I would also like to point out that there's an app available for free for iPod touches, Iphones, and the like available from epilepsy.com. He can record his feelings and experiences with seizures and life on it. I would like to finally add that there's also a JME support group on facebook and an epilepsy support group for parents. https://www.facebook.com/groups/jme.epilepsy/ and https://www.facebook.com/groups/supportgroupforparents/