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Thread: Cub Scouting Precautions?

  1. #11
    When I was a child in the 1970's my family used to go on 2-3 day camping trips down a river in Michigan. The conditions were filthy, the food totally inadequate and filled with bugs, we always tipped the canoes and got soaked, my only meds we could bring were enzymes, no nebulizer since there wasnt was AMAZING and we had trips of a lifetime together that I will never forget. God bless my parents for treating me like a normal kid. Not once do I remember being sick afterwards or picking up any nasty bugs...well, OK, there was the time that I got into a hornets nest and got stung over 30 times, but thats another story........but the point is, I have those memories to draw strength from when I am sick now, because I HAVE LIVED

  2. #12
    So what did you decided to do?

    I totally agree with the above statements about having a parent come along for the first 1-2 campouts. I did tons of scout camping as a kid including 2 weeklong Boy Scout camps, a JLT, and a few high adventure trips. One weeklong camp I had bad guts every morning during my Senior Patrol Leader meetings. I learned to delegate my responsibilities to my Assistants while I ran off to the outhouse to take care of business. Despite the bad guts I still earned several merit badges at that camp.

    Finding the right troop might take some looking. Find a Scoutmaster that is willing to make it work for your boy, and not one that thinks the badges or outings are more important than the boys. My dad was on the troop committee and came on a few camps which probably helped me more than I know. As a teen I went to a national Jamboree and historical tour back East for 18 nights. For that one I was in with a Troop where the assistant Scoutmaster was a Dr. whose wife had CF. So he was able to keep his eye on me (not that I think I needed it). I'd take the risk for those memories any day.

    In a couple years, if you make it out to Utah your boy can be in my Boy Scout Troop. I've done multiple week long camps and high adventures as an adult (including a 50 mile backpack trip). I bring a generator to week-long camps for doing the vest and nebs. Nothing like puffing hypersal around a campfire. For shorter camps I'll bring a MDI and a Pep mask and hit my more serious nebs right before I leave and right after I get home. I've been looking at getting a power inverter or a 12V neb pump, so I could just do nebs in the car. For multi-night backpacking trips, I'll miss my pulmozyme or hypersal for a day or two when we are deep backwoods, but then I plan for a support vehicle to meet us somewhere so I can do my treatments.

    In many ways I feel better when I'm up in the mountains than at home. I hope your boy can have some of those same great outdoors experiences.
    Thirtysomething Dad of three (IVFw/ICSI), Mormon, Engineer in Utah.
    I was dx at 1 yr (failure to thrive), D▲F508, FEV1~94%, PA and MSSA, PI.
    2 brothers w/CF, 3 siblings w/out. My wife and parents are saints.

  3. #13
    Wow Ethan. You have scouting and camping down to a science. That helps a lot. Really. I decided he should go camping but I really wanted an adult with him specifically who could help point out ways of doing things that would avoid particularly risky situations - like no swimming in rivers, take your meds and let me know if you're wheezing. I was in the process of assessing relatives as potential candidates when the outing was canceled. I know many think that parents shouldn't in any way restrict their children's activities based on their CF status, but I don't feel that's prudent. The more we know about sources of infections and the more accurately we can assess risks, the more I feel compelled to just make good decisions. Some CFERS have mild versions and can greater afford risks. Some are in the severe category like my little guy who already has several strikes against his potential longevity. I will not wrap him in a bubble. He enjoys most everything but hot tubs! But I won't throw him into harms way either and tell him to enjoy. I love him. It's my job to protect him, prepare him, and help him manage his condition. I want him around with good lung function when this disease is conquered. Soon I hope. Your post is wonderful to hear. And when the camping season comes around again, I would love to ask you more questions! Thanks so much for your post.

  4. #14
    Well, I really have to update the scouting saga here. Perhaps I'm the only parent who ever worried about this, but that wouldn't surprise me. My Scout has now spent an entire week in the wild - well, not quite so wild. The Boy Scout Camp here is huge and remote, but it does have a number of buildings, including a health cabin, equipped with electricity although of course the camping sites do not. I hauled his Respirtech vest and a portable nebulizer compressor (Pari Vios) up there and a lovely nurse who volunteers her time had him come in twice a day to do his treatments. That was a lot easier for me. Nothing else so far works on him as well as his vest. They routinely sent a Gator to go get him and bring him in for treatments. We hauled lots of Gatorade that the nurse kept in the fridge (although he's perfectly happy with it at room temperature) and of course his usual meds. He was allowed to keep his enzymes in his pocket but his Scout leader reminded him when to take them. That's one of the problems when your CFer is also dyslexic - he forgets a lot of things! But he had the time of his life and learned that sleeping under the stars is great, even when covered with mosquito bites (yes I sent bug repellant, but . . . . well, he forgets things!)

    There are, however, lots of trips they take to places without electricity. So the suggestions I received from so many included using PEP devices and using generators and inverters, hookups to car batteries, etc. would doubtlessly work in various configurations. While discussing these options with his troop administrators, I was amazed to find that several of the Scout officials were engineers, electricians, etc with specialized knowledge and an amazing willingness to find a way. They decided to start fund raising for solar panels to install on the troop trailer, so they could hook them up to batteries with enough charge to power his daily treatments. While discussing it with various parents, one kindly soul whose company sells them donated a set! They are planning on using some troop funds to buy the batteries and others have volunteered to install everything on the troop trailer. An incredible group of people who care about my one enthusiastic smiling scout. I am touched, heartened and grateful. Anyone who says anything bad about the Boy Scouts should come talk to me. They don't just say they are all inclusive. They ARE all inclusive beyond expectation. Thank you all.
    Buy popcorn from your Boy Scout Troop. It can be higher priced than Walmart, I'll grant you. But the money goes to a really good cause and a really good use.

  5. #15
    So glad they were able to make it work for him and he had a great time!
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  6. #16
    Both my CF boys are Eagle Scouts. They had many wonderful experiences through Scouting. It wasn't easy but we made it work too. The Boy Scouts are a wonderful organization!

  7. #17
    I'm going to think hard about that one!
    Last edited by ghostwriter; 01-07-2018 at 02:36 PM.

  8. #18
    What are you thinking hard about ghostwriter?

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