New here! Son has been diagnosed with BRE

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Hello. So glad to find a forum that has active members :)
My 9 yr old son Charlie had his first seizure (that we are aware of) on January 24, 2012. It was a 5 minute tonic clonic during sleep. We called 911 and the next day via eeg he was diagnosed with BRE. He has had 3 clusters of seizures. The clusters are 4-5 months apart. All seizures happened while sleeping, all seizures occur on separate days and within 3-5 days the cluster is done.

The first cluster~ 1- 5min T/C & 3 simple partials (lasted only seconds each).

The second cluster~ 1- 5min T/C & 3 simple partials (lasted 2-3 minutes each). He also had a few weird things happen that week ie. a tightening in his neck, tingling in his left cheek, feeling stuck. All were only a few seconds long during the day.

The third cluster~ 2- 3-4min T/C & 1- 2 min simple partial.

The T/C's are the worst and I thank God that he does not have any recollection. They last too long and I hate watching him not being able to catch his breath and turn colors :(
We are undecided on whether or not to start Trileptal. Anyone use trileptal? How is it? Any side effects for your child?
I figured with seizures 'peaking' at this age we shouldn't have to medicate and that they would slow... am I wrong for thinking this way?

Thank you!
Selena
 
Welcome. I am mum to a 21 month old who specialists are still trying to work out exactly what is going on. He first was rushed into the ED at just over 7 months old. This forum has been a fantastic source of knowledge and strength for me. To be able to "chat" with other parents going through something similar is so fantastic.
Donna
 
Hi and welcome.

I had E. all my life, but wasn't diag. until I was 18 years old. My Neur. said that if my parents had taken to a Dr. when I was young I wouldn't be as much meds. as I on now. I don't know if this is true or not.

I read where some young children out grow their seizures, again I don't know if this is the case in one type
 
Welcome :)
I had two seizures induced with high fevers as a child. I was on Phenobarbital until I began school, and was taken off as seizures didn't continue. Seizures returned at age 21, surgery at 23, and now I'm back to having seizures. I'm sure you will find some help and support, and wish your family all the best.
Hugs.
 
Hi Selena, welcome to CWE!
 
The neuro did not recommend meds after Charlie's first cluster. After the second cluster he said 'it may be in Charlie's best interest' and now after the third cluster he said 'I recommend Charlie start meds'. So why am I not starting the meds?! I am a nervous wreck. I hate the seizures but am so afraid of the side effects of the meds. BRE has a very high permanent recession during puberty. Articles I've read say 95% whether they take meds or not.
decisions, decisions.....
 
I am in the same boat you are. They aren't 100% sure that my son has BRE because of a unilateral pattern of EEG spikes instead of bilateral, but he has every classic symptom. We too have gone back and forth with medicating or not. My pediatrician has recommended that we wait becuase our son's seizures have been very mild with only facial twitching and no tonic-clonic. He told us that in our case, the risk of adverse side effects is worse than the risk of small seizures. The longest one he had has been about 30 sec.....knock on wood!! Good luck with your decision. Feel free to msg me if you want to!
 
Selena, welcome to the forum, you will find a lot of great answers and people who know. I am so sorry about your son, but the good news is, if there is any, is that it is BRE is a type of epilepsy that children outgrow! This should be temporary, not a forever condition. As far as taking meds, it is such a hard choice, I agree. I was hesitant as well and did not go on meds until after witnessing my sons second cluster. Unfortunately my son does not have BRE so meds are not an option, they are a must, we now know. Good luck, there are a lot of drug choices hopefully if you decide to go on them you will find one with minimal side effects! Good luck
 
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