Seizure Disorder and the Trail

[2011_thruhiker]

I haven't been able to log on her in what seemed like ages-as my very bright, vibrant, healthy, active 16 year old daughter began to have seizures. Her seizures have left her hospitalized in five different hospitals (including Children's), some over 150 miles away, many ambulance rides and even one admission into ICU and has left my daughter very sullen and not optimistic about doing things that she used too-such as hiking, repelling, rock climbing, swimming, no campfires, driving, etc. The only thing she has been cleared to do is hike-her neurologist wants her feet placed firmly on the ground-for her safety. She has been placed on 1750mg of Keppra and 5mg of Klonopin a day to control her seizures-which seems to be working as she has gone from 2 grand mal seizures a day to now about one a week. She has a team of neurologists-however depending on which one you ask-they each have their own opinions to exactly what her seizures are caused from but they have admitted that they really just don't know. She has never been sick a day in her life-always healthy. She also never experimented with drugs either-as they did an indepth drug screening to track the last five years for drug use by hair strand.

Her head neurologists thinks she needs to get back out on the trail-for some normalacy. I agree. Obviously we will take it slow and go at her pace. We have never been the type of hikers to hike our hike for a marathon anyhow. But I want to do this safely. I am medically trained so I can handle all the basics and CPR-but I am sure there is more we need to put in place that I am not thinking of. So I am looking for suggestions or even someone who suffers from a seizure disorder and hikes-for her to talk too. Any suggestions? She is like a caged lion sitting at home staring at the mountainside out our windows.

Thanks.

[Mother's Finest]

so sorry

I take dilantin, 400 mg day. I have had seizures since I was 17.

One night I had a seizure while I was going to sleep. That summer I had mono. I personally think that they are linked.

I have tried to go off my Dilantin three or four times, each one resulting in a Grand Mal....The last seizure I had was ten years ago. i take my meds pretty regular and have no plans to stop.

She needs to get things dialed in and under control first. Then she can feel some level of safety and security. An issue that they may not talk to you about is anxiety. Your daughter is 16 and I am obviously not recommending this now, but when she gets older she may want to try marijuana in either an edible or vapor form. It does wonders to help with anxiety.

the brain is one big puzzle. Unfortunately Docs are just like you and me. they don't know it all and the brain is as far out as it gets. Good luck.

peace
mf

[2011_thruhiker]

They did talk to me about anxiety-we all agree that the general feeling is that her grand mals are stressed induced-but there is a underlying medical cause-because she is showing *some* signs of epilepsy (her brain waves are normal though) as she will have a petit seizure like-episode (counter-clockwise circling), but her neurologist suggested getting her back on the trail-just starting out with a overnight-perhaps somewhere like the SNP where the rangers are never too far away for safety-but so she can get some of that stress out.

[The Weasel]

I had a seizure disorder for about 2 years (and no, we don't know why it came and went), and I found that my neurologist was unfamiliar with lifestyles of people other than his very fitness-center-and-suburbs life. But I also found that, once controlled, I relaxed massively by hiking, initially in areas that were very accessible to vehicles in case I had a problem, which I didn't.

Try day hiking, then, as you note, a simple overnight. Frankly, you might enjoy it most if it is NOT in SNP or a place like that, where you will be camping in a more organized area, since she might have concerns about "what if" and being embarrassed by emergency vehicles. Find someplace that allows backcountry (Mt Rogers Natl Rec Area near Damascus would be great, if that's not too far for you, and it has good access, a wild feeling along the AT (esp the ponies!), and is not far from good hospitals if needed (just ask Lone Wolf).

TW

[Hikes in Rain]

Seems to me that, as much as possible, a return to as much normality as she can medically stand would help her outlook a lot. I had an anesthetic related seizure a number of years ago, coupled with an injury that left one hand slightly less useful than it was. Actually, that's how I started hiking again. After release from my doctors, I was very dispondent with the changes in my body, and determined to prove to myself that i could still do the things I used to do. Curiously, since I hadn't done much hiking in a number of years, and never solo, I loaded up my ancient pack and classic hiking gear into a way too heavy load, and forced my wife to drive me up to FS42 to drop me off. Up to Springer, then over to Walasi-Yi where she met me.

The beginning of an obsession. But it made a huge difference in my outlook on life.

[karoberts]

Have you considered a seizure dog? They are alarm systems, protectors, helpers, and sometimes can even sense a seizure coming on. A seizure dog could help give her more independence. It could increase her safety on the trail. Socially, a dog could help her meet new people. A dog is also a good friend and may help her feel happier again.

[Erin]

Take a hike! On your comfort level given the great safety and route suggestions above. Is there another teen in the area with this disorder she can talk to or an adult that has learned to adapt just so she can deal with the self conscious embarrassment she has over the fear of having a grand mal in front of other people? Given by the posts above and the number of people I know that have or had a seizure disorder, they are the folks who have learned they "cannot change the wind, just adjust the sails" and live a normal life. There are so many nice folks on the trail and I think if your daughter did have a seizure, they would be helpful and compassionate. I don't know your daughter's situation, but hopefully she won't have to be in the hospital every time she has a seizure. Maybe she will get to the point that she gains her senses after one and then sleeps for a few hours to rest and is fine again. Wishing your the best and good luck.

[man2th]

one suggestion,,have her start some training first so you can see how the increase in her metabolism and trail diet effects her medication levels, she may have to change her dosage to maintain her theraputic level while on the trail. also talk with your doctor about emergency meds (benzodiazepines) that you can inject if she has a seizure on the trail.

[2011_thruhiker]

UPDATE: She did have a seizure yesterday which landed us in the ER for most of the night due to her falling down a staircase because of her seizure. She is okay-but she is learning that she may need to take some extra precautions to keep herself safe. She discussed (0n her own) last night with me on some of the things she can do while on the trail to keep herself safe. She came up with some good suggestions.

I think the training and emergency drugs would be a great start in the right direction-she goes next week to her neurologist and I will ask him about those-he might be more apt to prescibe something knowing help may be an hour or two away from arriving.

As far as being on the trail-I have always met wonderful people on the trail and I would have no doubt that once another hiker arrived-I would have assistance.

She is very sensitive about her seizures-she doesn't want people to think of her some kind of "freak" but we are dicussing this in length and about how *she* can help educate people on her seizure disorder-while no it is not normal-it doesn't mean you are a freak either.

We have also had a lot of conversations about how she also can be an inspiration to people on the trail-she is getting out there despite her seizure disorder and trying to do one of the things she loves best-that might inspire some too. When life gives you lemons-as the old saying goes-make lemonade.


As far as a seizure dog-her GSD seems to be able to *sense* one coming on (no he is not trained to do this-I wouldn't even know where to begin). So far he has sensed 4 seizures right before they have happened-he gets very whinny, won't leave her side and he'll pace around her in circles, yipping. He makes a lot of commotion about it.

One of them he actually grabbed her arm gently and tried to pull her to the floor. The one yesterday (we were out doing yard work when it happened-she was in the house) he went through the screen door to get me-he stood there barking at me loudly and then ran back into the house using the hole he punched through the screen door (I wanted to kill the dog until I saw my daughter lying on the floor-after that he got a steak and lots of praise) and laid by her side until it was over. Her neurologist and I are looking into what we would need to do to get him certified and if he is even able to be certified.

But her neurologist did suggest last night that I get a harness for him that stated "seizure dog" so if we were on the trail-people would be more accepting/understanding of his pressence and her need for him regardless if he is certified or not. He is well behaved to begin with though and obviously he would need to stay leashed with her. Her neurologist is an avid hiker himself.

I have never seen a dog act like this before. So, I guess he (the GSD) is coming on the trail with us. It's too bad he isn't certified as then he could even go to school with her.

[east_stingray]

My condolences. Learning to deal with medial problems on the trail is something which takes time and care. I have Meniere's disease, which is not nearly as terrifying as seizures, but can cause me to be unable to walk for a few hours (rolling around in the dirt puking). Since I hike alone, it took me a while to get comfortable being out.

I would suggest doing as your neurologist advised: start small, but try to get her out. Maybe think about getting a SPOT system. I'm considering it now, in case I have an emergent medical condition while in the backcountry.