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BENIGN ROLANDIC EPILEPSY

 

Just wanted to share my story, my daughter was diagnosed with Benign Rolandic Epilepsy almost two years ago.  She has had probably 12 seizures since then,  all in her bed all at night after falling asleep. We decided against medication because of side effects.  She is a very bright normal 5th grader making straight A's.  It is definately a lifestyle change, but the biggest contribution to her seizures is lack of sleep.  I try really hard to keep her bed time at an earlier time every night.  This has been hard for sleepovers or special occasions out.

I lay down with her every night so she is not "afraid" to fall asleep.  I am getting better at dealing with her seizures, the first few were very scary.  But I have found if I stay more calm she does better also.  There is not a night that goes by that I don't prepare myself to witness a seizure.  Since the medications don't guarantee no seizures why would we go there?  Fortunately, BRE seizures happen 20 to 30 minutes into sleep so she is in her bed and can't hurt herself.

Just had our recent 6 month check up all is the same and hopefully she will stop the seizures at puberty.  She is doing great, I keep a journal and her seizures seem to come about every three months and two to three in that week period.  Its a scary situation but if this is the worst we have to deal with we have to remember we are sooo lucky,  this too shall pass.  Good luck to other parents dealing with this scary situation and God Bless all of our children.

Comments

Re: BENIGN ROLANDIC EPILEPSY

Your story is very comforting to me! My 6 yr old Son was diagnosed in Aug 2010 with BRE since then has has had atleast one to two seizures every month since. We did the EEG and saw the neuro and he gave us the option to medicate or not. Said it was our choice. told us that in these type of seizures they don't hurt them or cause damage to the brain so we chose not to medicate. I've been second guessing our decision. The dr. told us that most ppl with BRE have only 6 seizures in their lifetime and will most likely outgrown them by puberty.  I pray that we are making the right choice and things don't get any worse for him!

Re: BENIGN ROLANDIC EPILEPSY

I'm glad it helps to hear others are dealing with the same issues. I know it helps me too. We had two seizures in Dec. which add up to 12 total in two years, so your doctor is not right in saying only 6 in a lifetime. My daughter has turned 11 so we have a few more years until puberty.I am confident in not medicating her now so try to relax and do what feels right for you all. I hate to say it gets easier, it doesn't but my reaction to her seizure has gotten better. Hopefully the same will happen for you. God bless!!

Re: BENIGN ROLANDIC EPILEPSY

Actually 6 seizures for most children is correct. Since my son was diagnosed, I've been researching this condition in depth. According to current medical literature, 10-20% of children will have only one seizure, 60% will have six or fewer, and 20% will have frequent seizures. It seems as if most posters fall in the top 20%. Could be the medical literature is wrong, or it could be that the parents of children having very few seizures have lost interest in the subject, and aren't posting.