question about rolandic epilepsy

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jazzandme

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Hi there!
My daughter was diagnosed with BRE a little over a year ago. She takes carbamazepine and just had her dosage increased to 3x a day.
My question is how they know when to check to see if kids have outgrown BRE and how they know. Do they do EEG's or just see how they do coming off meds?
I know, I know these were questions I should have asked at our last neuro appointment but I totally forgot this question!
Thank you!
 
Hi jazzandme, welcome to CWE!

Do they do EEG's or just see how they do coming off meds?
Click to expand...
It's up to you and the neurologist. If you both feel pretty pretty confident, your daughter would begin a slow medication taper. If there's concern that symptoms might be re-emerging, the doc might suggest doing an EEG at different stages of the medication taper to see if abnormal brainwaves show up. BRE often stops around puberty, so that's the most common time to initiate a med taper.
 
Thank you so much for your reply!
I got side tracked with the medication increase at the appointment and forgot the one question I had.
That all makes sense though!
I would feel more comfortable having a follow up eeg to be sure, is that something I can request be done even if the dr doesn't see the need to or is that being dramatic? I know this is one of the most mild forms but the fact that most of the seizure activity is during sleep is what i find most scary since I too am asleep unless it happens when i happen to be checking on her or have her in my bed.
Thanks again!
 
It may depend on your insurance -- if your doctor doesn't recommend the procedure, then it might be considered "elective", and you'd have to pay more for it. But don't worry about that now -- when the time comes, if you have a good relationship with the neuro you'll feel confident going forward with whatever decision you make about the taper process.
 
follow up EEG's tell all

My daughter, now 6 had her first seizure and was diagnosed when she was three. She was put on a low dose of kepra, taken only at night. She had a series of EEG's, some weekend long, take home, one in-patient in the hospital. Additionally, we have been seeing an integrative neurologist in NY. You can find out more at her site, brainmending.com

I strongly feel that the supplements that we put our daughter on made all the difference. We have a detailed story at our blog

benignrolandicepilepsy.wordpress.com

Feel free to reach out to us.

Best to you!
Joe (Ella's dad)
 
Thanks Joe!
I too feel the medication had made a.HUGE difference. There were changes in things that I would never have associated with any of this, but then again I never thought any of the strange things she was going through were seizure related. At one point I actually thought she was going crazy and needed help mentally. But she wasn't, thank goodness! And everything now makes sense, sigh.....
Now just waiting for her to outgrow this and being thankful this was the card she was dealt.
Take care and good luck to all!
 
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