Benign Rolandic Epilepsy

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maddysdad

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Just diagnoised

Hi everyone

My 8 year old daughter was just diagnoised with Benign Rolandic Epilepsy and the dotors have put her on oxcarbazepine.

The last 3 weeks have been crazy with all the testing and sleepless nights.

Now that we know what is going on with her, is there anything else that we should be asking the doctors or doing on our own?

Thanks for any info
 
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Welcome. I hope someone can give you the info you need. Good luck with your little girl. It must be exhausting for you.
 
You might ask the docs how often they will be evaluating her meds, and what things you should be looking for in terms of short- and long-term side effects. Particularly since BRE can eventually go into remission.
 
There are a lot of things you can do. My daughter now 6 was diagnosed with BRE when she was 3. She was relunctantly put on 3ml of Kepra, just at night. Fortunately that is all she ever needed. We took her off the meds about 6 months ago after a few clean EEG's.

We did not want to medicate at all. There is a strong voice out there that there is no need to medicate/treat BRE. Our neuro disagreed. The constant activity 'can' be damaging.

Kepra/Levetiracetam seems to be the 'best' drug out there. I know nothing about your case, but if you can keep your daughters seizure activity quelled with a low dose of meds, that is what worked for us.

We also saw a Integrative Pediatric Neurologist and went on a particular round of supplements. You should reach out to her, she was great

Her site is brainmending dot com and her name is Dr. Maya Shetreat-Klein


We may have never even needed the drugs when my daughter was on the supplements.

We've kept a detailed blog here

benignrolandicepilepsy.wordpress dot com

Reach out if you have any questions.

Best
Joe
 
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