Community Forum

New to Rolandic Epilepsy and concerned


my 10 year old son was diagnosed with Rolandic Epilepsy after 2 grand mal seizures at night. EEG is consitent with rolandic epilepsy and MRI is normal.

Our neuro started him on trileptal (300mg) single dose at night since his seizure have only ocurred when he goes to sleep. Both my wife and I are on a rotation schedule and co-sleep with him everynight. 

We're currently faced with the following challenges:

- Sleep issues

He very rarely go through a normal night of sleep. In general, it takes him up to 90 minutes to fall asleep (his bed time is 9ish). During that 90 minutes, it's fully conscious and oftern complains about being scared or feeling weird in his tummy. Sometimes he feels like vomiting. Later, it's pretty common for him to wake up several time either scared or confused, between 11:00 and 1:00 AM. At that point, he unconscious and doesn't remember about it the next day. The rest of the night seem pretty "normal" although we've been noticing a fair amount of myoclonus jerks up until he wakes up. 

- Seizure control

Since beginning treatment, we believe that on a few occasions he may have experienced a seizure aura but having us next to him in bed comforting him seemed to have prevented the seizure to generalized. We have a feeling that his next grand-mal could be right around the corner. He also told us that he had nightmares in which he's having a seizures or feel like he's about to have one. How can we "confirm" whether the trileptal is working or not ,besides waiting for a next seizure to occur? Is there any additional tests we could do like another EEG while he's under the medicine? 

After reading extensively about Rolandic Epilepsy, I found that seizure are fairly rare (2,3 times a years). However, I couldn't find a lot about disturbed sleep at the level of frequency that my son is experiencing. Could it be anxiety? or perharps another seizure type like complex partial?

Would anyone else dealing with Rolandic have similar experience ? Any feedback would appreciated.






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