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Rolandic Epilepsy, to medicate or not?

Fri, 10/09/2015 - 16:48

My son was diagnosed with Benign Epilepsy of Childhood with Rolandic Spikes when he was 7. His initial seizures were some of the scariest moments in my life, and after we got the diagnosis and were assured by the neurologist that this was a benign epilepsy with an excellent prognosis we decided not to medicate. I myself had several seizures in childhood and adolescence ( photosensitivity) so I knew the side effects of AED's since I was on Tegretol myself for years.
His seizures continued, only during the day/evening and he was mostly aware for their duration, however not very frequent, maybe every 6 months or so. He had regular sleep-deprived EEG's and they all showed the spikes typical of BECRS. His initial CAT scan was normal. Throughout the years though he went from mostly spells where he would stare blankly and salivate enormously to the seizure progressing into hemiconvulsions ( thankfully on only a couple of occasions). In April of 2014 he had the scariest one that to me looked like a grand mal that progressed from a petit mal. The doctor suggested meds at that point and after almost agreeing my husband and I again decided against it after lots of research.
This summer we finally got the great news that his sleep deprived EEG was normal-we were so happy! Happiness was shortlived though. Last month, second week of school  he had a grand mal at school in class, during a test ( he just started grade 9).  The whole class witnessed it and 911 was called but he was awake and fine by the time they arrived although a bit confused- he said he didn't even feel it coming this time ( usually he starts feeling weird and can communicate he is not feeling well). After lots of explaining at the office the teachers were instructed what to do if it happens again. Called his neurologist, explained that what I think were triggers were the general excitement and stress of starting high school combined with less sleep. He agreed and scheduled to see us in December. Today, about 3 weeks later the school called to say he had another one in class again. No convulsions this time, he knew what was happening, told the teacher and remained aware and  sitting the whole time but unable to communicate until at one point he was Ok again.
I know that sleep deprivation was the trigger again. He practices competitive water polo and his practices run till 10:30 pm 5 times a week. He falls asleep almost at midnight, up at 7 for school. I know that is the trigger but he does not want to give up the sport he has been doing for years.... Plus knowing that he is going through growth spurts, onset of puberty, is it worth it to medicate now or do I just hope this is a cluster and it will get better? He is at a stage when he wants to be more independent, takes public transit home from school some days and I can't stop freaking out that he will have a seizure on the bus among strangers.... I call his cell every 10 mins during his trip home. How do I cope with this? The excellent prognosis for this type of epilepsy is keeping me going.... But at this point I don't know what to think. Two seizures close together after a completely normal EEG... Should I ask for a second opinion? Can anyone else relate? 

Comments

There was a point at which I

Submitted by kristicain12@gmail.com on Tue, 2015-10-13 - 11:52
There was a point at which I myself was considering if it was really worth it to medicate at all.  The side effects were almost as bad as the seizures to us in the beginning before her episodes of status descended.  With love and understanding for your situation, please allow me to share 2 stories and one statistic that not only guided my decision about the meds but motivated me to aggressively and uncompromisingly fight for control.  I have a friend that I met on these boards whose daughter was a bright & healthy child.  She only had the occasional partial seizure and her doctors never argued with the decision not to medicate.  She never regretted the decision until the day her 6 year old had a 10-hour grand mal seizure.  It is only through the grace of God that her child is still alive after coding multiple times I the OR table.  But the severe and irreversible brain damage that it caused took the heart and mind of that child away from them forever.  This woman is my friend who visited me in person when Katie went to Johns Hopkins.  She is an admirable Christian warrior living with a terrible life sentence.  She is not a bad mother, she simply didn't know. Early into my time on the boards, I remember reading the post of another mother with tears streaming down my eyes.  Her child also had a fairly mild case of epilepsy and the case for meds did not seem urgent.  She wrote a heart-wrenching lament about how she had lovingly tucked her child into bed the night before only to awaken to her lifeless and blue-lipped little body the next day.  The pain she was suffering was absolutely unbearable. Both these case are extremely rare, yes, but are nonetheless true.  Real moms just like us and real kids just like ours with hopelessly tragic endings to the journeys.  One thing about meds is that although they do not 100% prevent tragedies like these from occurring they significantly alter the odds in your child's favor.  While medicated people with a history of seizure have a 1 in 1,000 chance of SUDEP.  Without medicine the odds rise to 1 in 150.  You also mentioned activities such as swimming and using public transportation that carry fairly weighty risks to someone without solid seizure control that do not need to be spelled out.There are many epilepsy stories out there and you are free to use your own discretion when weighing the risks and benefits for your own child.  But the risks are real and the cause is worthy so prayers for the journey and these boards will be here if you ever need it!!

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