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StringBender

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My 16 year old son has just started (we live in England) treatment (600mg oxcarbazepine daily) for tonic clonic seizures, fingers crossed for no more seizures but we know it can be a long road ahead!! He is fairing well and determined to enjoy his life, basketball, music etc. WE will attend a local Epilepsy Forum next week and wish to share our experiences, make friends and contact with fellow mums, dads and sufferers. My son has had a total of five seizures starting from mid november last year. The first three occured within an hour of waking at about three weekly intervals, the fourth and fifth occuring more recently (week and a half ago) within two days of each other and at 4pm and 6pm in the afternoon. So the morning pattern has changed.
MRI clear, 2 x EEG's , last one melatonin induced but still my son couldn't sleep at EEG. Never mind we see the neurologist next week, and will see what they think. He now recognises that he has had auras before the first seizure as well.
My son is now facing his GCSE revision and exam period which is tricky.
We would really appreciate sharing experiences and to hear from you good people out there. So bye for now
 
Hi Stringbender, welcome to CWE!

I hope the oxcarbazepine does the trick for your son. I know it can be tough at first to figure out what epilepsy is and how it will change everyone's lives. It can be really helpful to ask a lot of questions and gather information -- so you're doing the right thing to go to local support groups as well as join us here. You might want to write down all the questions you and your son have the neurologist, so you can make the most of the appointment next week.

Best,
Nakamova
 
Gday stringbender ,

i hope that it all works out for your son , it isn`t great to find out that you are epileptic , myself i had a very hard time , it is great that he want`s to still play basketball ect , tell him not to give up on what he wants to do in life " if you dont give it a go then you will never know " my doc recons that for me stress , lack of sleep , not eating food at the right time & depression was the trigger , could he be stressed ect ? i hope all goes well .

i now think " bugga epilepsy " and i am getting on with my life !

have a great day stringbender :)
 
Welcome! I am also a mom to a teen diagnosed with epilepsy. Paige is 15 and she started her "E Journey" 1 year ago. Happy to meet you!! CWE is a great place to be!
 
Welcome StringBender. Are you a guitar player? There is no reason that your son can't do everything he wants to do (except maybe be a pilot or a professional driver) with his epilepsy. I've had it for probably much of my life, but was officially diagnosed and put on meds just over 30 years ago. Tomorrow is, in fact, the 31st anniversary of my first witnessed tonic clonic seizure. I've gotten 2 college degrees, raised a family, have a good marriage, am involved in lots of music, remain physically active, and so on. I've only had, I think, five tc seizures, but I continue to have partial szs, (most recently yesterday when I was writing a response on the CWE forum here. I didn't notice until I reread it several hours later that I had garbled up some of the words. I decided not to edit it because it's kind of interesting to see the effects of a sz that I know I'm having, but don't know that I'm not making a lot of sense. But I digress).
Over the last 3 decades I've probably had over 10,000 partial seizures. I've tried various meds and combinations of meds, and have to balance side-effects with seizure control. It's an ongoing process, at least for me.
Keep in touch with us all here. If your son has any questions we will be glad to talk with him.

Cheers!
 
Hi, just wanted to roll out the welcome mat.

I am the one with E. -- and I worked for 23 years, saying that to say there is life after being diag. with E. It is life changing, but you will learn the triggers, which is such a help.

Hope you. found a good Neur.
 
Im the Mom to an almost 12 year old diagnosed with Epilepsy over the summer. She is on that same med and is doing well. Welcome!
 
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