Scared and Lost

[BensalemAngler]

We are a month away from beginning the weening process on my son again. Yes, it has almost been 2 years (NO JINX) again and we will try again. His first attempt failed after a day of being off meds completely. I am more scared now than I was this time 2 years ago.

Part of me wants him to be on meds his entire life. I have seen that they work. Another part of me is over the whole meds things. My dr sees no reason why we shouldn't try to take him off. And I see her point completely but when he goes to camp, or out with his friends what if he has one and I or my wife is not there.

Someone, anyone, please respond. I come on here and write and get very little responses. I need something anything...Am I crazy? Should I push to stay on the meds?

 

[Nakamova]

Do the meds have any side effects for your son? If so, then it may be worth trying to do the taper. And yes, it will be nerve-wracking for you and your wife. I feel for you, and send big hugs your way. There is no easy answer. There will always be a limit to how much you can protect your son. Make the choice and be as positive as possible about it. Make sure his friends know who to call or what to do if he has a seizure. Make sure he has a MedAlert bracelet or similar. And make sure he has fun.

If this second attempt doesn't work, then yes, going back on meds, perhaps for a much longer stretch will be the logical way to go. But at least then you won't be wondering "what if?" I've tried to going med-free twice (under doctor's supervision), with no luck -- but I'm still glad I tried. And though I intend to stay on meds for now (it's been nearly 4 seizure-free years on them), I still hope to try a taper sometime in the distant future.

 

[BensalemAngler]

Thanks for your reply. I am honored. No side effects, NO JINX

 

[Nakamova]

Hoe does your son feel about trying to go without meds? Is he anxious?

 

[BensalemAngler]

No he is 8 and does not remember any SZ so he is not nervous at all. Must be nice to be so carefree. lol

 

[Nakamova]

yes, that's the "silver lining" -- if it can be called that -- of tonic clonic seizures. I hope that he stays healthy and happy whatever your decision regarding meds.

 

[elizzza811]

That's exactly how I'm feeling right now as I'm about to get my driver's license back. My neurologist thinks I'm okay to drive, but I'm not as certain that this is the right move. So I feel for you. I second the medic alert bracelet suggestion. I certainly don't intend to drive on days my clenching is most severe, even though my neurologist shrugs this off, and I will probably take my own advice and get a bracelet just in case I'm right.

 

[acpollard2010]

if u have any doubt in your mind that they may increase i wouldn't take him off them and that's coming from someone who tales alot of meds and hates it but safety first.if u can find a way to try another treatment by all means its just hard.

 

[BensalemAngler]

Thank you for all your responses!!!

Our dr. says all signs point to him out growing them. Nothing on EEG's, good balance, excelling at school, incredible memory. It's just me being scared and having confidence in the meds. For all I know is he has out grown them but we would never know if he has unless we try, I guess.

He is still on the lowest dose of Depakote we have never moved up and he is close to his threshold according to blood work so when one pill comes off the med is technically not working.

It all comes down to 1 SZ in 4 and half years (NO JINX) and the 1 was when he was off meds, I have sort of become comfortable with him not having any.

 

[jyearta]

I'm hoping and praying the best for your son. He is lucky to have you as his Mom.

 

[BensalemAngler]

I'm hoping and praying the best for your son. He is lucky to have you as his Mom.

Thanks but I am his dad, lol. I am lucky to have him.