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Mostly this is to those here who have children with epilepsy, and some credit given to Leonard, for you. I don't very often write in but I do read here. I'm 64, have had e since approx 23, and have tried probably 90% of drugs out there, when there was about 3-4 only too. ^ neurologists during that time.

I was out of my parents house when seizures started and I have been alone approx 28 years of those, married now for 15. In the beginning my attitude was, no point in taking meds (note too 3-4 available when 22) because they didn't work (and it was true), and thought if I ate well enough I'd be fine. Eating well contributes it's definite good but seizures did prevail. Mine were nocturnal grandM only 1st 20 years but, I had to hide a chewed tongue for a few days at work. Leonard and I have more not so cute stories we probably won't be sharing but... I think the worst of this tour has been INFORMATION (good information!). It's poor enough anywhere, in epilepsy fields as bad, so hang on. A very important note on that !!!.... Not all info will be bad or useless. You can flood yourself days on end, get nothing, and not be sure who/what to trust. A neurologists fact is that they can be a dime a dozen and,,, when an adult with your child, with e,,, neurology EXpertS can have you in panic. DO accept that they could be wrong. Remember that their information at best is just a few years ahead of yours and that their practical use of new info is subject to not enough history on new science/uses. Keep reading and listening to other stories. Occasionally something will come through useful. Visit/read other groups for parents with children with disabilities that are not epilepsy.

My seizures are not GM any more (any more?) but enough to keep me from a regular job. Being self employed got me through that hoop, not everyone can, not as great as some say and it has it's stomach acid too. Disability $ doesn't buy rent these days. Start chasing any source of money you can find to help too.

Leonard has to have been a good filter for e info in his life. Go ahead and trust what he has to give. We (older groups) don't have all the answers but have run through a large portion of junk info to get there. You will find some (older groups) who have given up, think they are doing battle, become too tired and some cynical/angry. Don't let it discourage you. There is an evolution of drug-epilepsy-medical info that our age group has seen that will give you another perspective. I'm not as well equipped as Leonard. I've read his input for a couple years. Go ahead and use it.

Rick

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Replies to "Mostly this is to those here who have children with epilepsy, and some credit given to..."

Thank you!! As I'm reading this tears are streaming, please see my reply to Jake. I just need somewhere to turn, answers instead of dead ends and my child suffering for my failure to be able to control and stop it. What's really broken me down is when we saw her neuro and his answer was 500mg keppra split in half twice daily, adding a pill, same way halved, we can only go to 3 twice daily and then it's off to a surgeon?!?! And my baby says she'd rather have surgery than to keep having to take so much meds...I'm lost...please help
Dj's mom