Anyone have a teenager with Juvenile Myoclonic Epilepsy?

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DawnLou

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Hallo, my daughter was diagnosed a couple of years ago with Juvenile Myoclonic and Photosensitive Epilepsy. She has tried Epilim, Keppra, Zonisamide, Lamictal and Clobazam (Frisium) with varying degrees of success/failure and all with pretty rubbish side effects (she is currently still on the last two). I am constantly researching supplements and other more natural aids, but she's a teenager and just will not drink the celery juice and go to bed early!!! Strange that?! She hasn't fully accepted the situation really and, despite being told that it's a lifelong condition, is still expecting it to disappear at some point in the near future. A bit more background history: she was born prematurely at 32 weeks as I had pre-eclampsia (magnesium deficiency I am now wondering?). She has struggled with dyscalculia, "flavours" of Aspergers and also anxiety and low mood/depression. Then the cherry called Epilepsy topped the cake! Now the neurologist wants to do further EEGs, with the possibility of being evaluated for surgery (VNS or resection) We live in the UK. If any of this strikes a chord with anyone out there, I'd love to hear from you with any advice on anything that helped you or yours in any small (or huge!) way. Many thanks. x
 
DawnLou I don't think VNS would do anything for her if her epilepsy is really strong
 
Hi Lonewolf,

It's not set in stone that she would have any surgery at all (or that we would want her to). She will possibly be undergoing what is called an evaluation which means a must more detailed EEG (over a number of days) and a detailed MRI to try and pinpoint exactly where the seizure activity is starting. Whether or not she would even be eligible for surgery would depend on the results of those tests and, as I say, it's not something we are even considering at the moment. But thanks for your quick response!
 
I've had that done the detailed MRI. It turns out I'm not a candidate for surgery as my seizures come from all over my brain. Hopefully she does okay.
 
 
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