Hello. My 12-year-old son was diagnosed a few days ago with Juvenile Absence Epilepsy. He'd had a few (maybe 5-6) "zoning out" episodes over the past few months. Maybe more, but that's all we saw. When a teacher observed one in the middle of him reading out loud and notified us, that lit a fire under me to have him tested. I researched what it might be and found CAE. Ugh. Then I realized that at his age, it was more likey JAE. Extra ugh!!!! The eeg showed me to be correct. He had a classic response to the hyperventilation portion of the test.
So here I am. I'm worried about what it will do to his life. He's supposed to go to sleepaway summer camp for 4 weeks starting less than two months from now. He has gone for two summers already and loves it more than I can possibly describe. It's an outstanding camp, and we've spoken with them about this. We'll talk more about safety procedures as the date gets closer. But he'll have barely been on his meds (Zarontin) for only two months as of then, and who knows if they'll be working well or what the side effects will be. We don't have time to play with meds between now and then. Regardless, the neuro cleared him to go.
My other big concern, although we're trying to downplay it, is skiing. He's about the best skiier I've ever seen in a kid his age. It's his life. His love. His passion. His reason for being. This is a boy who studies trail maps. Watches every youtube video on skiing. He's planned for a lifetime of skiing and knows all the places he wants to go. Beginner hills. Please. Intermediate hills - only to ski with me, lol. Black diamonds? Double black diamonds? Moguls? Glades? Steeps? He can ski it all and thrives on it.
The neuro has said he can ski "when" his seizures are under control. Oh, yes, there's the part of me that wonders if. My husband says no matter what, he's taking him skiing or the boy will wither. But he can't just ski... he has to ski amazing, fabulous, exciting places! We took our first trip out to Colorado this winter, and he skied one of the toughest mountains like it was nothing. I've never, ever, not once seen him so happy in his life.
So that's my rant. I have more fears than I've stated. I worry about the development of tonic-clonics as JAE is associated with them. I worry if he'll be able to drive. I worry about college (he's a driven student with huge dreams). I worry about a lot.
I don't express it to him. I try to sound confident. I try to not be overprotective. I'm there for him. But this is hard.
So here I am. I'm worried about what it will do to his life. He's supposed to go to sleepaway summer camp for 4 weeks starting less than two months from now. He has gone for two summers already and loves it more than I can possibly describe. It's an outstanding camp, and we've spoken with them about this. We'll talk more about safety procedures as the date gets closer. But he'll have barely been on his meds (Zarontin) for only two months as of then, and who knows if they'll be working well or what the side effects will be. We don't have time to play with meds between now and then. Regardless, the neuro cleared him to go.
My other big concern, although we're trying to downplay it, is skiing. He's about the best skiier I've ever seen in a kid his age. It's his life. His love. His passion. His reason for being. This is a boy who studies trail maps. Watches every youtube video on skiing. He's planned for a lifetime of skiing and knows all the places he wants to go. Beginner hills. Please. Intermediate hills - only to ski with me, lol. Black diamonds? Double black diamonds? Moguls? Glades? Steeps? He can ski it all and thrives on it.
The neuro has said he can ski "when" his seizures are under control. Oh, yes, there's the part of me that wonders if. My husband says no matter what, he's taking him skiing or the boy will wither. But he can't just ski... he has to ski amazing, fabulous, exciting places! We took our first trip out to Colorado this winter, and he skied one of the toughest mountains like it was nothing. I've never, ever, not once seen him so happy in his life.
So that's my rant. I have more fears than I've stated. I worry about the development of tonic-clonics as JAE is associated with them. I worry if he'll be able to drive. I worry about college (he's a driven student with huge dreams). I worry about a lot.
I don't express it to him. I try to sound confident. I try to not be overprotective. I'm there for him. But this is hard.
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