My 14-year-old son is having a 72-hour ambulatory video EEG. Only 40.5 hours more to go! :roll:
He's handling it as well as anyone can, although he's obviously bored and uncomfortable. The biggest problem he had up until this evening was itching under the wrap and attachments. Now, however, he's feeling some nasty irritation under the front part at the top of his forehead, in one spot in particular. First, I feel bad that he's feeling that irritation. It's starting to hurt a bit. Second, I hope he's not going to develop any really nasty irritation, like an open wound or sore.
I don't think there's anything we can do about it. But has anyone else ever experienced this? We're not even halfway through the process, and it's a long time for this to be going on.
I have a number for an on-call tech. Should I call, or is it pointless because he just has to suck it up.
I feel so bad for him. He's a great kid. Good heart. Works hard in school. Loving. Seriously, just a great kid, and this breaks my heart.
FYI, the reason he's having this is because his last short EEG was normal. He has Juvenile Absence Epilepsy and was seizure-free for 16 months despite being on a sub-therapeutic dose (he was on a low dose to start, and since then he grew 4 inches and gained more than 20 lbs, so his serum levels are very low). We weaned him off the meds, and he's now been off them for almost two weeks. It could be that he just did well on a sub-therapeutic dose, but the doctor figured if we were going to try weaning him off, now's the time vs two years from now when driving becomes an issue. Kids usually outgrow CAE, but most don't outgrow JAE. But JAE is less common, so there's not as much data. We're hopeful, of course, but we're also mentally prepared if it's not to be.
Thanks all!
He's handling it as well as anyone can, although he's obviously bored and uncomfortable. The biggest problem he had up until this evening was itching under the wrap and attachments. Now, however, he's feeling some nasty irritation under the front part at the top of his forehead, in one spot in particular. First, I feel bad that he's feeling that irritation. It's starting to hurt a bit. Second, I hope he's not going to develop any really nasty irritation, like an open wound or sore.
I don't think there's anything we can do about it. But has anyone else ever experienced this? We're not even halfway through the process, and it's a long time for this to be going on.
I have a number for an on-call tech. Should I call, or is it pointless because he just has to suck it up.
I feel so bad for him. He's a great kid. Good heart. Works hard in school. Loving. Seriously, just a great kid, and this breaks my heart.
FYI, the reason he's having this is because his last short EEG was normal. He has Juvenile Absence Epilepsy and was seizure-free for 16 months despite being on a sub-therapeutic dose (he was on a low dose to start, and since then he grew 4 inches and gained more than 20 lbs, so his serum levels are very low). We weaned him off the meds, and he's now been off them for almost two weeks. It could be that he just did well on a sub-therapeutic dose, but the doctor figured if we were going to try weaning him off, now's the time vs two years from now when driving becomes an issue. Kids usually outgrow CAE, but most don't outgrow JAE. But JAE is less common, so there's not as much data. We're hopeful, of course, but we're also mentally prepared if it's not to be.
Thanks all!