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questioning my son's diagnosis/medication (Trileptol)
Thu, 11/09/2006 - 21:21Topic: New to Epilepsy.com
My son was diagnosed with Benign Rolandic Epilepsy after 1 seizure and a series of tests in 2003 at the age of 12. He was put on Trileptal and has been taking it ever since. He has never had another seizure, but after 2 more abnormal EEGs we are told that he still has it. He currently takes 1500 mg a day- he just turned 16 and is 6'4" and 185 lbs. Before the diagnosis he seemed to be a normal, rambunctious little boy who only seemed to listen when it suited him. When he first started his medication, his school work got better, he seemed to listen more, it looked good. However, for the last year and a half, his school work has dropped off...he tests high, but can't remember homework and has a terrible time with anything that requires memorization. He has difficulty paying attention. (He was tested for ADD - negative) His memory is non-existent...which makes remembering homework, long tests, etc. very difficult. He gets very sleepy in the mid-morning although he gets 8 hours sleep a night. I have voiced my concerns with his neurologist, but he tells me that my son's course of treatment is fine. I wonder if the medication is doing more harm than good or if he has been misdiagnosed. Can anyone else relate to this situation??
Comments
Re: It is always worth a second
Submitted by ferfer on Fri, 2006-11-10 - 12:42
He sees a general neurologist every 3-4 months. I think I will ask for a referal for another neurologist from our family doctor and get a second opinion. It couldn't hurt.
It is always worth a second
Submitted by ekoorb on Thu, 2006-11-09 - 22:55
It is always worth a second opinion. Back in February, my 5 year old daugther was diagnosed Benign Occipital Childhood Epilepsy (BOCE). She did a 24 VEEG because the doctor was trying to decide between a diagnosis of BOCE and Benign Rolandic. He told me if he had diagnosed her with Benign Rolandic, he probably would not have medicated her, at least not at the start. There clearly are kids with Benign Rolandic who are medicated but that does not mean all of them are. Clearly each child must be analyzed separately, but it is worth looking into if you have concerns and your son is so adversely affected by the meds. Do you go to a general neurologist or an epilepsy specialist?