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Posted 11/18/2008 10:37 PM (GMT 0)
Hello Everyone,

My daughter was diagnosed with epilepsy when she was 16, she is now 20.  She has been taking Topomax the entire time.  It seemed to cause the seizures to immediately subside and has been seizure free for the entire 4 years.  My question and concern is at some point shouldn't she begin to back off of the medicine? 

Thank you for your responses!

Posted 11/21/2008 12:53 PM (GMT 0)
Hiya,

Eventually people are weaned off AED's, that is correct. My neurologist told me that he wouldnt even consider the idea until I had been seizure free for 5 years. At the time I thought that was an eternity but in reality, its not that long at all... especially when you have already done 4! I would talk to your doctor about this. It can take up to 12 months to wean someone off AED's properly in a controlled manner so it might be time to start thinking about it

Darren
Posted 11/23/2008 10:26 PM (GMT 0)

My son was on dilantin for 12 years.  It stopped working and I found an epilepsy neurologist who found out he had as many as 50 absence seizures during an EEG.  My son is on Zonegran, Keppra and Lamictal.  He will never be able to be weaned off of any anti seizure meds.  he will have to take them always.  So be careful and check with your neurologist before considering weaning off meds.  The seizures can come back at any time.  And especially if your daughter gets sick, like with a cold and fever.  A fever metabolizes the meds and can leave your blood levels lowered and that stops the protection.  Have learned a lot about epilepsy the past 3 plus years.  Go online to the Epilepsy Foundation and you will find tons of information. 

Aurora

Posted 11/29/2008 8:12 PM (GMT 0)
I know seeing ur child take medication can be hard, and u may want them to live a life free of medication just like everybody else but if ur daugther is doing good on her medications their is no reason to take her off of it quite yet. If she is living seizure free then her medication is working where it is at and prob. does not need to adjust for awhile. when it does adjust it will be a slow process. I hope that ur daugther goes seizure free for the rest of her life, and i would consider sitting down and talking to ur childs docter.
Posted 11/30/2008 12:53 AM (GMT 0)

It is a good idea to talk over the meds with you daughter's dr.  I hope you have a neurologist and not just a GP.  A neurologist knows just how seizures work.  If she goes off the med and then has seizures you are back to square one and that will make her feel very bad.  There is no telling when seizures will appear even on meds so you have to approach this with the utmost care.  If your daughter is leading a normal life it might not be a good idea to experiment and see if she can go off meds.  Most people I know with epilepsy are on their meds for life.  It depends on the kind of seizures and where they originate from.  Your best bet right now is to go to the internet and look up the Epilepsy Foundation and see if you have a chapter or group near you.  Online you can find a ton of information. She may at some time have to have a change of meds. I wish you good luck and do go ahead and do some research.  I think it will make you feel better. The more you know the better equiped you are to handle any situation.

Aurora

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