Son with BRE

My son is 8 with BRE. He was diagnosed almost 2 yrs ago. Thank God we have never had to admit him to the hospital, but have had 2 ER visits. The Pediatric Neurologist that we see is one of the top in the country. He put him on Trileptil and gave me diastat to give to him if his seizure last longer than a few minutes or if he has more than one. This past Saturday night (actually Sunday am.) he had 3 seizures and we ended up taking him to the ER because his diastat was expired by 2 DAYS! Can you believe it. Then drew a Trileptil level on him but of course other than that there is nothing that they could do. I live in Orange County in New York. If you would like please feel free to email me and we can talk further. I would be glad to give you my number. I know how you feel. When my son is having a seizure I feel so helpless. I am his mother...I am supposed to be able to make things better and take away any pain. Epilepy sucks! You are not alone!! Let's talk.

Hi, Getting past the initial shock is so hard. I know I was consumed by it when my son had his first seizure two years ago. My son has never gone into status epilepticus so I can only imagine how scary that must have been. A friend once said to me that it is a type of "mourning period" that I was going through. Although no one had died, I was mourning the loss of our life the way it was before. It is probably a phase everyone faced with something like this goes through. It may be necessary to help you cope. First you are constantly worried, then you move on to other emotions, hopefully ones that help you deal with it better. Knowing that you are not alone helps as well. Good luck & Take Care. Christine P.S. If you are so inclined, when I practice yoga regularly, I deal with everything a little better.

Hi, I totally understand your fears and concerns. If you want to read my blog about my son Jack feel free. He also has BRE. Your son's symptoms seem to be a little different from my son's but still scary none the less. Have you check into seeing a epileptic specialist? We are taking our son to one next month. From what I have been told, they just are more knowledgable about all the different types of epilepsy. My son's EEG test stated that it wasn't typical of BRE, but the neurologist still thought that is what it was. So I want to know if it is in fact Benign Rolandic or not. The doctor prescribed Diastat for my son if he had a seizure that lasted longer than 3 minutes. We haven't had to use it yet but its reassuring that we have something to stop the seizure. I know what helped me initally was to find out as much information as I could about epilepsy and BRE. I also put a baby monitor back in my son's room so I could hear him right away. I also recieved a ton of reassurance on this site, and the many helpful people that write on this forum or blogs. We are still new to this whole BRE thing and we have just been trying to take it day by day. Today is a month from my son's last seizure so I am extremely happy that he has been given a little break from this. Take care and keep me posted. Sheri (Jack's mom)