topamax, overheating, limitations

[nick's mom]

hey guys, how is everyone today? this is mostly just a whine but i needed to write this out. hope you don't mind. as most of you know, nick is homeschooled, so most of his time with friends comes sunday and wednesday at church. our youth group has become very active, but so far the activities have all been ones nick can't participate in. amusement parks are a biggie which nick can't do because of overheating, his osteoporosis and his heart. outdoor concerts are another biggie but again, living in florida, he just can't do it.

i know other parents and even the leaders (who say they understand) are starting to think i'm just a super overprotective mom. trying to explain that nick doesn't sweat, that he has a serious heart defect that makes it more dangerous and can't do other things due to his osteoporosis, i think i'm starting to sound like a broken record. one of the leaders, and a good friend, called me yesterday to let me know they had two extra tickets to an outside concert this weekend. it's going to be in the high 80's and there is just no way nick can be out there. there is no place to get out of the sun and no facilities that he can go cool off in.

bud took him to a football game a couple weeks ago and they spent the first half of the game in the first aid station because nick was so overheated and lightheaded. fortunately he rained and cooled down, plus it stayed overcast, so he was able to enjoy the second half.

this is hard because the kids all talk about the fun they had, they show slide shows about their trips in church and spend a lot of time planning the next activity. nick has been amazing about it all and never complains about missing another event, so i guess i'm just whining. i'm worried nick will begin to resent all he's missing out on and i think he gets upset more than he lets on.

not sure if i'm asking anything but just wanted to talk. thanks for listening.

[Mom2Ava]

((((((((((((((((((((((((luanne)))))))))))))))))))) ))))))

First, I would say move up here to Maine where it is cooler ... but it has been so gosh darn hot and Ava has had issues wtih the heat too ... in fact I think her latest rash issues may be from the intense sun o/ the weekend...
Still though, it'd be fun if you moved up here :) when it is cool .... it is pretty cool

Very sorry about the feeling of others thinking you may be over protective. I struggle with this too. It is frusterating. We are not over protective ... paranoid or anything else. We are only doing our jobs.

As far as Nick feeling like he may resent missing out on activities ... any chance of just planning activities when it is safe ( cooler and so forth) and keep Nick involved in the planning?

[nick's mom]

thanks jen! moving to maine sounds fun but i don't see it happening. cooler weather would probably be good for nick but snow and shoveling and all that, wouldn't.

hopefully as the weather starts cooling down, he'll be able to do more but they often do activities he just can't do. like i said, he's handling it wonderfully, never complains, but i wonder what he's really feeling. when we talk he says he understands and really doesn't mind but i know it must be hard to always be left out. but i guess it's also something he'll always have to deal with, so he's just learning early.

we are going to try to do more with him, especially when the youth is doing something fun. we still have disney tickets to use, but have to wait a few more months til it's not so hot. we are trying to find inside things he can do that won't be too expensive. we'll take him mini-golfing once the weather cools. there are a lot of fun courses around here and he loves that. it's just hard with all his limitations.

[apmom]

(((((((((Luanne)))))))))

The hardest part of this is that there is no dilemna. :( Even with Nick being accepting and understanding, it doesn't mean he isn't hurting, wishing it could be different. Alternatives are the only thing to pursue. Do you have connections to other homeschoolers, where you could maybe do a museum trip, or something like that?

Maybe a Friday or Saturday evening trip to the movies with just one or two friends from his youth group?

Does Nick play chess at all? I realize it might be difficult for him to sustain concentration through a whole game, but on a good day I'm sure he could. There are chess tournaments to be found, many of which are open to a wide range of skill levels, and can be a fun way to meet and be with other kids. If he doesn't feel well, he'll resign the game, no biggie. Actually, if he doesn't already play, chess might help with developing alternate paths in his brain to help with math work.

*heart

[Firehorse]

hey guys, how is everyone today? this is mostly just a whine but i needed to write this out. hope you don't mind. as most of you know, nick is homeschooled, so most of his time with friends comes sunday and wednesday at church. our youth group has become very active, but so far the activities have all been ones nick can't participate in. amusement parks are a biggie which nick can't do because of overheating, his osteoporosis and his heart. outdoor concerts are another biggie but again, living in florida, he just can't do it.

i know other parents and even the leaders (who say they understand) are starting to think i'm just a super overprotective mom. trying to explain that nick doesn't sweat, that he has a serious heart defect that makes it more dangerous and can't do other things due to his osteoporosis, i think i'm starting to sound like a broken record. one of the leaders, and a good friend, called me yesterday to let me know they had two extra tickets to an outside concert this weekend. it's going to be in the high 80's and there is just no way nick can be out there. there is no place to get out of the sun and no facilities that he can go cool off in.

bud took him to a football game a couple weeks ago and they spent the first half of the game in the first aid station because nick was so overheated and lightheaded. fortunately he rained and cooled down, plus it stayed overcast, so he was able to enjoy the second half.

this is hard because the kids all talk about the fun they had, they show slide shows about their trips in church and spend a lot of time planning the next activity. nick has been amazing about it all and never complains about missing another event, so i guess i'm just whining. i'm worried nick will begin to resent all he's missing out on and i think he gets upset more than he lets on.

not sure if i'm asking anything but just wanted to talk. thanks for listening.

I thought of something that may help in this situation that comes from hiking in the desert as a child, more than 30 years ago...

I remember setting off for a swimming hole, I believe it was called "Emerald Pool", and it was one of those "Are we there yet???" type of hikes in the extremely hot sun. I recall when we got there, everyone in the party was so hot and sweaty, that we all walked ito the water fully clothed. No one bothered to do more than take foot gear and packs off.

The revelation came on the hike back. Though being in the afternoon now, hotter than it was when we hiked in (remember, it's the desert, about 110 degrees) surprisingly we felt cooler walking out. The guide explained that the vaporization of the water from our clothes was in effect acting as sweat does in cooling our bodies. He also pointed out that we were drinking almost no water on the way back as well....

When we got back, everyone was dry. I've used this tidbit whenever hiking in hot, dry climates.

If Nick can keep a large bottle of water with him to soak a t-shirt with on hot days, it can sweat for him. No need to take my word, suggest this to your doctor. Then he may not have to miss out. Then it will be just a matter of making it habitual.

Hope it helps....

[lacyndarella]

Jimmie was on topamax most of the summer, and our car's air died. I have one of those hot/cold packs. I kept it in the freezer. When Jimmie had to ride in the car, I lashed the pack to the carseat back and then sat him in the carseat. He stayed nice and cool. Rice bags in the freezer also help if thrown around the neck. They get cold, but not ice cold so it isn't too shocking. What's more they hold the cold for a long while. On long trips I took an insulated back with ice packs in it to help keep the cooling stuff cool...of course it only helps for so long (I think the bag will keep things frozen for 4 hours). But for short trips (like to ball games) those things could really help.

[nick's mom]

thanks anne, you know, i forgot all about chess. nick used to play a lot with his brother. that might be a good way to work more pathways. like you said, he can stop if he needs to. my dad used to have a running game going with a neighbor. when one of them was out of town, they'd both set up the board and call each other with their moves. the games went on for days and weeks. so nick's wouldn't have to be done in one sitting! thanks for that idea.

thanks david and lacy, we have done the soaking of the shirt many times and that does help. i like the rice bags idea too. i guess some of this is just realizing that one of his problems alone causes enough limitations, but when you put them together, he really can't do a lot of stuff other teens are doing. even without the overheating issues, for example, his heart and bones still limit him in many ways.

i'll continue to be thankful for how healthy he is and his wonderful attitude through it all. thanks!!

[CasaDe]

I was wondering about chess, myself.

Can you counter some of it by having Nick invite some of the guys to participate in things he CAN do?

Do you belong to a homeschool co-op or anything? Joint science experiments or art projects might help.

[Denae]

((Luanne)) and ((Nick)) Thats tought. Riley didn't sweat a drop once she got up past 175mgs on the Topomax. Even with the switch to Zonegran we see the same thing.. I know Nick must be frustrated by the outings that really exclude him. I always look foward to the fall so Ri can do more stuff outside safely. So far this fall it is still in the 90's... Today it hit 93 :(

I can't imagine living in FLordia! YIKES!

Just sending some more ((hugs))