Meds necessary for BRE??

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

C

cjnittany63

New
Messages
3
Reaction score
0
Points
0
My 6yr old was recently diagnosed with benign rolandic epilepsy. The neurologist wants to put her on keppra, but the more i read about this drug, the more it scares me to do it.

Since her seizures are only at night, is it even necessary to medicate? Weighing the potential side effects of the mood swings, and since this is something she will outgrow, I am having doubts about medicating her.

Thank you for any suggestions/advice you have to offer.
 
cjnittany 63,

Her seizures could get worse not being on anything at all.
Seizures can change she could start having them in the daytime.
Once long ago I just had nocturnal sz's but that didn't last long.
She needs be on something for her sz's.

Belinda:agree:
 
hello cjnittany63!
i joined this forum for the same reason as you. BRE.

my son was diagnosed with BRE also at the ago of 10.
we were told right off the bat that it was not neccasary to medicate...depends on how often/how bad/what time of the day his seizures were. we did NOT medicate for the first year at all. just kept an eye on him. as a general rule....night time and first thing in the morning within an hour of wakening is when they usually strike in most cases.

seeings how he also had migraines, after the first year the pediatrician put him on 200mg a day of vit B6....worked wonders for a year or more.

only since hitting puberty has his seizures been termed 'atypical BRE' as they happen at any time a day, different types of seizures and no rhyme or reason. we have now for the last year or so had him on tegretol.

every story is different and between you and your doctor can find whats best for your little girl. most cases are not treated is what i am taught. her seizure pattern may never change and it may....time will cyper that out.

we put our sons bunk bed away and got him a queen size foam bed instead...on the floor. he loves it and that way if anything happens at night, then he isnt going to fall and has lots of room for squirming around.

good luck and please do lots of reading....keep us posted!
jaysmom,
chrissy
 
Hi :hello: Welcome to CWE!

We had problems with doctors wanting to put my son on Keppra. I too was not willing to go that route with all the side effects. I knew there must be a better way. I did some research both online and in several books. One book I will recommend is Treating Epilepsy Naturally. Basically, we found that alternative methods worked best for us. I found a direct link between my son's diet and his seizures. A combination of proper diet, rest, and cranial therapy has really improved my son's life.

Doing nothing can lead to more seizures, but medication isn't your only alternative. You can be proactive and take less extreme methods. Many people have found great success in Neurofeedback, diet, supplementation, acupuncture, massage therapy, cranial therapy, and the list goes on. Don't give up until you find something that works for you and your child. You may even have to find another doctor who will listen to your concerns and support you in your decisions.

Feel free to have a look around. Make yourself at home. Ask questions. This forum is a wonderful community full of support, encouragement, and information :)
 
Hello CJ
I am also one that is an advocate for looking at alternatives other than medication.
My daughter was placed on four different trials and they only increased her seizure activity. It was a very dark time in our life.

We have been using a combination of nutrition, supplements, and neurofeedback and seeing great results. We still have a ways to go, but my daughter is a teen, and learning to take some responsibility for her well being. I believe it can be done in some circumstances. There is HOPE
 
Robin,
I just read Rebecca's Story.
Where are you getting information for nutrition and supplements? From your doctor or is there a good site or book you would recommend?
We have another appt with the neurologist tomorrow and I'm trying to get more info.

In the last 4 weeks we've had an abnormal EEG, a normal MRI, and Saturday night she was hooked up to an EEG all night for a very extensive sleep study. Now I'm just trying to get the glue out of her hair!

Thank You!
 
I just looked at your site about Elijah. What a cutie and he's obviously a tough little guy, too!

I am going to go find the book you recommended this evening.
Thank You!
 
cjnittany63 said:
Robin,
I just read Rebecca's Story.
Where are you getting information for nutrition and supplements? From your doctor or is there a good site or book you would recommend?
We have another appt with the neurologist tomorrow and I'm trying to get more info.
Click to expand...
From 2.5 yrs of research online. I had one GYN doctor in the beginning that is an specialist in hormones, and I have been reading work by Dr Blaylock a neurologist. I use google a lot, and when recommendations are similar from multiple directions, I have tried them. I have never had any side effects on supplementation that we did on meds.

In the last 4 weeks we've had an abnormal EEG, a normal MRI, and Saturday night she was hooked up to an EEG all night for a very extensive sleep study. Now I'm just trying to get the glue out of her hair!

Thank You!
Click to expand...
Sounds like Rebecca's in the beginning. Her first EEG was abnormal or was showing the results of two seizures in one day (not really sure that can happen), she does have a heterotopia (gray matter that migrated out of place while her brain was forming) but which was given a pass by the Epileptologists at UCLA. She also had a 24 hr EEG that was normal.

It all can be very confusing. You just need to make notes on everything. One doctor will say one thing and other something else. Why didn't they get the glue out of her hair before she left? Was it done in a hospital or at home?

Keep your journal, and turn over every stone possible. Do not rule out anything.
 
Hi cjnittany63, welcome to the forum. :hello:

Check out the most recent research on Rolandic Epilepsy.

The "benign" indicates that doctors believe the child will outgrow the condition in time, but you can try using neurofeedback to help the brain along in the process of strengthening new neuronal pathways.
 
Glad to have you here, cjnittany63. You will get a lot of support here.

I had looked up Rolandic Epilepsy a long time ago. It said then that it was benign. Try neurofeedback.
 
You must log in or register to reply here.
Back
Top Bottom