We're up in the north Georgia mountains( read: The Middle Of Nowhere) camping with our 17yo mentally handicapped son. He has seizures which are well controlled by daily meds. He hasn't had a prolonged seizure in over 2 years, so I have gotten complacent about his emergency meds; in fact, many times I just don't bring them because we never need them.
Well....This morning DS woke up and started stirring around. He walked over and sat at the breakfast table. I turned my back to wash hands and heard a loud "Wump!" There on the floor behind me was DS in full seizure. DH & I were able to get him back to the couch where he was safer. Usually his seizures go about 25-90 seconds. When this one passed the 4 minute mark, I knew we had to give the emergency med(rectal Valium). We are so far out there is no 911 service, so we threw on some clothes and shoes. Just about the time I was ready to lift him out of the camper, the seizure stopped. 10 MINUTES--that's how long this seizure went! The emergency drug worked it's magic and DS slept it off, but holy cow--when I think that I actually debated taking the med with us and very nearly left it at home. I will NEVER have that debate again!
DS has been droopy and off balance today, prolly from the seizure and the med. But at least he's acting mostly normal now. We're leaving in the a.m., so maybe getting him back into a regular routine will help him snap out of this. I'm telling you one thing--if he starts up seizing again tonight, we're just going to load him up, call the police and have us meet him on the highway!
"Those who dwell...among the beauties and mysteries of the earth are never alone or weary of life."--Rachel Carson, environmentalist, 1956
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Me & DH in non-parenting mode!
Sorry to hear that your DS had a terrible day. Hopefully he doesn't have any more seizures for at least another 2 years again. Good thing you had the medicine with!
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I have an adult son with a history of seizure disorder that thankfully is well controlled now and is obviously no where near the level of disability your son is. I can relate to the helplessness and fear you experience when a seizure starts. Always keep those emergency meds at hand and I applaud you for trying to make his life a little better by taking him camping.
Chock, please do not forget those meds!!!! Poor kid, I do think he is very lucky to have such a support group, you guys are great. (Give him a hug from me ok)
Glad everything turned out ok. I don't wait to admin valium it is used right at the onset to stop them. Did your doctor ever mention to you about high elevations being a concern?
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rockhillmanor wrote: Glad everything turned out ok. I don't wait to admin valium it is used right at the onset to stop them. Did your doctor ever mention to you about high elevations being a concern?
Hmmm, no, I've never heard that. We were only at about 3000ft, so not too high. Sometimes DS will have a seizure if he's had a busy or exciting day, but he has never, ever had one in the morning. Usually they happen at night and they only last 25-90 sec. On the rare occasion that they go over 3 min, I go ahead and give the Diastat. we're supposed to wait for 5 min, but I know if he goes to 3min it's gonna be a prolonged one. We're also supposed to take him to the ER, but since we were way out in the woods and I got the seizure to stop i felt comfortable with managing it myself. I've been a pediatric RN for 35 years, so I have a lot of experience with seizures. Still, it never fails to rattle me when MY child has one!
Christian did fairly well after he woke up from his post-seizure slump. He was off balance and droopy pretty much all day, but he rallied in the evening just in time for pizza! Today he's back to normal, whistling and singing and getting into trouble.
I will never again second guess myself about bringing his emergency meds--and you can take that to the bank!
emzee wrote: Chock, please do not forget those meds!!!! Poor kid, I do think he is very lucky to have such a support group, you guys are great. (Give him a hug from me ok)
fla-gypsy wrote: I have an adult son with a history of seizure disorder that thankfully is well controlled now and is obviously no where near the level of disability your son is. I can relate to the helplessness and fear you experience when a seizure starts. Always keep those emergency meds at hand and I applaud you for trying to make his life a little better by taking him camping.
Thanks. He does LOVE to go camping. It's a lot of extra work for us--he wants to walk off all the time. He has had some injuries during previous campouts, so we have to really stay on top of him to keep him from walking over a cliff(which he has done--twice!) or going into the lake. Just keeping him out of traffic is a full time job--he LOVES trucks and will walk right up to touch the grill of a truck. No fear! Lucky for us, he is sweet and gets along easily.
Tonight we are pretty exhausted. DS is in his room watching Looney Tunes while I cook supper. Tomorrow he goes back to his caregivers (he just recently moved out of our home to live with a couple younger & stronger & healthier than we are. ) After that I think we'll probably collapse for the afternoon, LOL
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No fear! Lucky for us, he is sweet and gets along easily. 
