I have a 6 year old son who has been diagnosed with Rolandic Epilepsy. So far he has had 4 seizures. Each occurred about 20 minutes after falling asleep. According to the pediatric neurologist they cause no damage and he is awake/alert when they happen. My concern is...the doc wants to medicate him. I fear the meds much more than the seizures themselves. I go for a second opinion in a few days and would like some help coming up with some good questions for the doctor. I want to make sure I'm making an informed decision...
Rolandic Epilepsy
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I think you're right to be conservative with medicating your son's BRE. The overwhelming majority of children with Benign Rolandic Epilepsy outgrow the seizures and are not harmed by them. Usually meds are only considered if the seizures become recurrent and/or bothersome.
If you do decide to try meds, BRE tends to respond very well to medications. Some anti-epileptic medications that are used to treat this type of epilepsy are Tegretol, Dilantin, Trileptal, and Depakote.
If the doc is urging medication, definitely ask a ton of questions: Which meds does he/she recommend and why, what doses, what side effects, how are they ramped up and/or tapered off, and how long would medication be required.
If you do decide to try meds, BRE tends to respond very well to medications. Some anti-epileptic medications that are used to treat this type of epilepsy are Tegretol, Dilantin, Trileptal, and Depakote.
If the doc is urging medication, definitely ask a ton of questions: Which meds does he/she recommend and why, what doses, what side effects, how are they ramped up and/or tapered off, and how long would medication be required.
Our 3yr old daughter was diagnosed with BRE as well. We live in NJ and went to a top ped neuro in NYC. We were faced with medicating and not medicating. Note that we are very 'natural minded' parents. No vaccine, healthy life style, all that.
The issue that we believe (as we were told by this doc) was that over time, the stimulation that occurs in the brain with BRE kids, can cause learning problems. Just because there is no seizure doesn't mean that the brain is in a normal state.
Have you had an over night EEG yet? Dr. Devinski is an expert in this field. Here is a slideShare that I just found that he created
slideshare.net/nyufaces/mistakes-in-epilepsy-care-orrin-devinsky-md
We ended up putting our daughter on 2ml of Kepra each night. We have kept her on that dosage for about 2 yrs now, and she has not had any other seizures. She has had a few episodes of 'sparkley limbs' (which is actually seizure activity or paresthesia) but no seizures.
It's a hard call to medicate or not to medicate. Sometimes I wish we didn't, but seizures are a scary thing and I ended up putting my trust in an expert in the field and I am comfortable with that.
We have a blog about this at benignrolandicepilepsy.wordpress.com
Reach out, we are here as our many other parents.
Good luck!
joe
The issue that we believe (as we were told by this doc) was that over time, the stimulation that occurs in the brain with BRE kids, can cause learning problems. Just because there is no seizure doesn't mean that the brain is in a normal state.
Have you had an over night EEG yet? Dr. Devinski is an expert in this field. Here is a slideShare that I just found that he created
slideshare.net/nyufaces/mistakes-in-epilepsy-care-orrin-devinsky-md
We ended up putting our daughter on 2ml of Kepra each night. We have kept her on that dosage for about 2 yrs now, and she has not had any other seizures. She has had a few episodes of 'sparkley limbs' (which is actually seizure activity or paresthesia) but no seizures.
It's a hard call to medicate or not to medicate. Sometimes I wish we didn't, but seizures are a scary thing and I ended up putting my trust in an expert in the field and I am comfortable with that.
We have a blog about this at benignrolandicepilepsy.wordpress.com
Reach out, we are here as our many other parents.
Good luck!
joe
Just want to say thanks for all the information. We had another visit with the pediatric neurologist on Friday. He explained to us that my son's epilepsy didn't present as benign...therefore really needed to be medicated. His will run the same course as BRE (partial seizures,ending at adolescence, etc...) but because his presented with 4 seizures in 9 days in the beginning he fears that my son might have so many that they will become med resistant. If that happens the seizures might begin to cause brain damage. He suggested that we start Lamictal. In his opinion it causes the fewest cognitive issues. My son is a bright student and I fear him beginning to struggle with school work. I realize that the epilepsy itself may cause some issues...but I know that the meds can cause them too. We have decided to begin the meds over spring break. That way maybe I can monitor side effects and he will have a little while to get used to it before going back to school.
Kaitybugsmom
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My ex husband takes Lamictal as well and said that he hasnt had any side effects from the medication. But like Nakamova stated everybody is different. I hope that the medication works for you with little to no side effects.
Deciding whether to medicate or not is a hard decision to make, its one that we are contimplating at the moment as well. I do like the idea of trying it over spring break when you can monitor and IF there are side effects at least he will be at home to sort through them and adjust. Let us know how it goes.
My son had a funny little "sleep walking" thing last night. Is that a side effect of Lamictal? He's never done it before. He just got up and stood beside the bed...(he sleeps with me since his seizures happen mostly at night and my husband works midnights). When I asked him what was going on he just looked at me and crawled back into bed. He had no memory of the incident this morning. He just laughed and said he must have been sleep walking.
Not medicating Rolandic Epilepsy
Has anyone chosen not to medicate their child?
Im reluctant to have our son given medication- he seems to be developing fine at school; I have noticed any abnormal behaviours. Is it Ok not to medicate? Can untold damage be done if we dont?
Has anyone chosen not to medicate their child?
Im reluctant to have our son given medication- he seems to be developing fine at school; I have noticed any abnormal behaviours. Is it Ok not to medicate? Can untold damage be done if we dont?
epileric
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Be aware that the more seizures someone has the more likely they are to have even more. Multiple seizures also tend to effect memory over the long term since neurons do burn out during seizures.
I struggled several months with the decision to medicate. I was finally convinced when the pediatric neurologist put it to me this way...he said that 10 was a magic number when it comes to seizures. After 10 seizures they tend to become med resistant and then a whole new world of problems opens up. My son's Rolandic Epilepsy didn't onset as benign. He had 4 seizures in 9 days. Your son's may be Benign...meaning (if I'm understanding correctly) in the whole course of his "illness" he may not have more than 4 or 5 seizures. I didn't want my son to become med resistant...as he was almost half-way to that magic number 10.