Going to camp with possible SPS, what to do

[Kyla]

I'm leaving in 2 weeks to go to a sleepover camp and my possible simple/complex partial seizures have not been resolved (I'm 15). Lately (over the past few months) my staring episodes have changed a little from time to time where now with some of them I'll get twitches in my arm and dip a little more in awareness. It's something that makes me uneasy. I've had these stares for the past 4 years but they've taken a turn, as I've said, this year. The past couple of yeas at camp I'd have my stares but I've been lucky where I've had them that people wouldn't notice and they weren't as long. But this year I'm a little nervous to go because of the changes. And there's this weird feeling that comes 24/7 as well where I really feel disconnected from reality and things just overall seem foggy which can take a lot out of me sometimes socially emotionally and physically. My doctor is driving me nuts because she's not telling me anything as to my health. She thinks I just know but I don't. I just feel like a walking problem. My question is, what should I do as of filling out the medical info sheet they always give out? Like, I'm undiagnosed but I don't want them to be surprised when I blankly stare and twitch my arm or if I have those days where I'm not fully with it and look like I'm ignoring everyone and just quiet. Should I have my parents call my doc and ask what to put down for that? The thing about my doctor and parents however is that they have this disbelief and lack of concern for what's going on with my health so my doc would just say don't put anything. As harsh as that sounds for me to say, that's unfortunately what they are like.

Thanks

 

[masterjen]

The form asks for any diagnosed conditions, right? Write what you've been diagnosed with and don't add anything else BUT SOMEONE needs to be aware. You'll need to have this person know a lot of details. Contact the camp nurse and explain the situation. It's not so much what you put on the form that is important; it's more important that someone else you can trust is aware of the situation. Don't forget to keep yourself safe when it comes to hiking, swimming and climbing.

Also, have a friend be your "buddy" during the time you are at camp - to keep an eye on you, provide support when you need it, to alert the camp nurse or doctor, etc.

 

[Nakamova]

:agree:
And do what you can to play it safe at camp -- avoid stress, get plenty of sleep. If there's swimming or other potentially risky activity, you should consider sitting it out.

 

[KarenB]

When you arrive and register at camp, make sure the camp nurse knows your condition and med schedule. She will probably hold your meds and administer to you, but make sure you remember to report to her at med time (it's easy to get involved in what you're doing and forget).

Make sure the counselor in your cabin is aware of your condition.

Make sure the head lifeguard is aware of your condition, and that you always swim with a buddy who knows to look out for you.

 

[Kyla]

masterjen- I found the health form online for my camp and it has a layout where there's check boxes of certain medical conditions (asthma, anxiety, seizures, etc) then a part if there's any info that would be useful to the camp nurse.
masterjen, Nakamova, KarenB- thanks for the suggestions. I'm am almost always with my cabin and 2 counsellors 24/7, never alone which is good. And I go with my best friend and we never leave each other's side while there, unfortunately I haven't told her about my stares because we haven't seen each other in a long time but it'll be easier to tell her first then a totally stranger right.
Thank you

 

[Nakamova]

I hope you have a terrific time!

 

[masterjen]

Be strong and positive, and have lots of fun!!

 

[KarenB]

I agree that'll it will be easier to tell your friend than a total stranger, but 3 strangers who really need to know are the camp nurse, your counselor, and the head lifeguard.

Years ago, when in college, I was a camp counselor and also the head lifeguard. A 14 year old teen attended several weeks at camp that summer, and the first week she was in my cabin. She told the nurse about her seizures (which were rare), but unfortunately the nurse didn't tell me -- she just told the girl to tell me. Well, when the girl came to tell me, what she said was, "I have an allergy to the sun" -- and I'm thinking it was something like her skin would react or something, and I didn't pursue it. And she didn't give me any more details == like her "allergy to the sun" was actually photosensitive epilepsy.

If she had, I would have kept an extra eye out for her, and especially down at the lake front. I would have required that she swim with a buddy (who knew), and may have either requested that she remain in the shallow water, or that she be under the eagle eye of one of the lifeguards if she went into the deep water.

But I didn't know, and all through the summer, she was swimming in the deep water. The very last day of camp, the schedule was different, and the girl forgot to go to the nurse to take her meds. Just as the campers had gotten into the water, she and her friend (fortunately she was with a friend) swam out to the high dock in the deep water. And then, just like that she slipped below the surface (no noise or convulsions). Thank God her friend saw her go, and yelled to the lifeguard up on the high dock (the girl was holding on to the dock and was below the line of vision of the lifeguard, who was monitoring the people going off the diving board, not the ones getting ready to come up).

The lifeguard immediately jumped in, but it took her 2 tries to find her -- the water was about 20 feet deep and dark lake water. In the meantime, I had dove in and was swimming from the shallow water dock. It took us several minutes to get her to the shallow water where we could do mouth to mouth and CPR, her heart had stopped beating, but we were finally able to get her revived again (at which point she went into a grand mal seizure). After an overnight at the hospital she was fine. But it could have been tragic.

Anyway, just saying...make sure who people who need to know do know. Don't forget to take your meds.

And have a great time!!

 

[CQ:)]

Kyla -
Have a great time away on camp.

 

[Kyla]

Nakamova, masterjen, KarenB, CQ- Thank you everyone. I'm sure I'll have a great time, always do, one week till I go!
KarenB- wow, I'm sorry that that had to happen. I'm glad you were able to save her however. I think it's hard for people to tell others about their epilepsy because of embarrassment or having other people judge them. But you're right, it is important to tell people about it. Better to tell too many then too little. Yes, search and rescues can be very very difficult in lake water, so merky and deep. I find that the lifeguard training curriculum has changed slightly. In my one course for lifeguarding last summer, we spent quite a while on seizures on land and in water which is good. I think it's something that gets overlooked quite often when it's a serious situation that needs to be addressed appropriately when it happens because it can be so sudden.
I don't have any meds for my stares right now, never have because my I'm still going through testing. With things slowly but surely getting worse, I'll have to tell them at camp because as well as not being on meds, anything could change anytime.

 

[KarenB]

Anyone who judges someone for having epilepsy needs to have a big rock dropped on their head.

My daughter also told me about the changes in lifeguard training (she's a lifeguard on Catalina Island this summer) -- great they're giving more attention to seizures. This didn't come up in my training at all, nor did it in first aid training (this was all back in the 70's and 80's).

Hope you have lots of fun -I just love camp!!!

 

[Kyla]

KarenB- Exactly. I had a teacher this semester in school and for some reason poking fun at seizures was just always his thing, bugged me so much regardless what condition someone has, you don't do that kind of thing. I wish people wouldn't judge others for having seizures, it just seems like it's something people easily bring up but not in a good way and they just laugh. Ugh, society.
Yes, I really noticed a change in the lifeguard training, I'm glad they are bring up seizures in it. One of the first courses I took for first aid couple years back, nothing about seizures. Then last summer just after they changed the curriculum, we were learning about seizures and practicing rescues in water. I was the only one who got the scenario of a seizure on land on day though....ironic?

Thank you, I'm looking forward to going, always a great time.