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12-year-old newly diagnosed with absence seizures
Thu, 04/27/2017 - 11:25Topic: New to Epilepsy.com
I'd posted my worries about it in another section here. But I just received the official diagnosis from the doctor. He does have absence seizures. So here I am, I guess for good.
We're supposed to go in and meet with the doctor this afternoon. He's going to start my son on meds, go through a bunch of info, etc.
He didn't specifically say if it's CAE or JAE. He did indicate that lots of kids outgrow it. I mentioned that I thought at his age it's JAE and so he wouldn't outgrow it. But the doctor said that he still felt confident that he might. I don't know if he's just trying to reassure me, but I don't get the opinion that this doc is one to hold back the truth.
And then an additional random panic set in. SKIING!!!!! My son lives, breathes, and sleeps for skiing. It's his lifeblood. He's absolutely incredible at it and loves it more than anything else on earth. He studies trail maps. He's planned out all the ski resorts he wants to get to eventually. And the steeper and more challenging the terrain, the happier he is.
So... OMG.
I asked the doctor about it and he said he can ski if his seizures are well-controlled. Obviously, there's no way to know if that will happen.
So there it is. My son might not be able to pursue his passion, or, if he does, he might have to do the little, slow hills that will bore him to tears.
As if the diagnosis itself isn't bad enough.
I want to throw up.
Hi Marcy. I stopped worrying
Submitted by mereloaded on Fri, 2017-05-05 - 16:10
Hi Marcy. I stopped worrying some time ago. I refuse to become cloistered by fear. You mentioned the imnsonia. You can set a rule: no sleep, no slopes! We carefully plan sleep and rest when we go to Europe for example, have to get earlier than usual, going swimming, skiing etc. if he doesn't "look" good if you know what I mean and you know he is bern up, no car keys, no time on the slopes. This is the trade off, learning how to manage your condition, which is challenging during those teenage years when you think you are invincible. There willl be some learning curve, but he and you will get there. If my son gets extra "spacey" in the a.m. or vomits, that is not a good day. Medication controls his condition,mos it is up to him to know his body and learn when not to do certain things. My son learned that the hard way, but at least that is done. About skiing, I would strongly advice against skiing when it is snowing! Sometimes it can "hypnotize" and the optical illusion (Star Wars effect I call it) may want your brain go there. But this is particular of each individual. My son for example is not photosensitive so that doesn't bother him. His trigger is the sleep/awake transitions when sleep deprived.... always! Your child will be okay. It is not all peaches and cream, but we are lucky, very lucky, and we know it, because his symptoms are mild and controlled with meds, and many others have it much worse. He is college now, has a gf, drives and has a job. He is learning to find balance living on his own, managing his time etc. but that is true for all freshmen. I know a diagnosis is hard, but medicine is like an insurance that things will be okay, even in the slopes! By the way, he skiis with his dad. I don't ski, so is upto dad to keep him company up there. Good luck!