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UPDATE! I went!! Chaperoning a camp for kids with Crohns?

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Crohn's Disease
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Posted 7/23/2008 12:04 AM (GMT 0)
Our children's hospital is involved in hosting one and one of their child life specialists is a friend of mine and she emailed me today saying they are still needing some more chaperones and thought I might be interested.

Anyone chaperone a Crohn's camp for kids? Or know anything about one?

Update: Just got back, it was an incredible experience! So many fantastic kids, doctors, nurses, and others who either have IBD or work closely with it. We had a blast making fun of the quirks that go along with it - our tshirts even have toilet paper and plungers on it. "My" girls were so fantastic.

It's hosted through CCFA with help from the local children's hospitals, pediatric GIs, and some drug companies. If anyone has a kid with IBD, look into sending your child next summer if one is close enough to you - my understanding is that it's free. Some of the kids fly in just for it.

ETA: It's a Thurs-Sun, here, so people working FT might be able to take off 2 days of work to chaperone. I highly recommend going at least once! I learned SO much about this disease just being surrounded by people who also have it. I didn't know anyone IRL that does before now.

Post Edited (Aimee =)) : 8/24/2008 9:28:48 PM (GMT-6)

Posted 7/23/2008 12:17 AM (GMT 0)
Might help to know where the camp is located?
Posted 7/23/2008 1:06 AM (GMT 0)
I have not personally chaperoned, but I know many people who have. In fact most of the people who work at teh CCFA camps have IBD.
Posted 7/23/2008 11:05 PM (GMT 0)
I was a counselor for the CCFA’s camp located at Lake Hughes in southern Calif. It’s fabulous! My first year, we were at a regular summer camp and it was a little hard on some of us because the camp staff didn’t do the best job accommodating our food needs but it was kind of like eating out anywhere else, I just had to be careful.

The second year, however, the camp’s permanent facility was ready and we moved into a Hole in the Wall Gang (Paul Newman) Camp. The place is specially designed for kids with physical disabilities and chronic illnesses. I was there for its first IBD week. The food was all organic and made in conjunction with nutritionists and tailored to IBD. The medical center is great and the staff is made of some of the best GIs around. All of this on top of the amazing kids (all of whom have either CD or UC) make for two of the best weeks I’ve had yet!

If you have any other q's, let me know.
Posted 7/24/2008 3:11 AM (GMT 0)
that sounds like fun, whats the max age limit to attend? :o
Posted 7/24/2008 4:21 AM (GMT 0)
The particular one I'm looking into is located in Dallas, but they host them all over the country.

I believe this one goes to age 17? Sorry you missed it by a bit, Bane =)

I haven't heard back from the contact yet but I'm holding the dates open just in case. Thanks for the info!
Posted 7/24/2008 5:03 AM (GMT 0)
Yeah they're like 7-17 but a lot of the counselors have IBD too. I wish I could have attended when I was younger, but counseling is the next best thing.
Posted 7/24/2008 4:24 PM (GMT 0)
I would love to be a counselor but I have a full time job Karen
Posted 7/25/2008 4:34 AM (GMT 0)
Bummer. Was worth a shot! Is there a site I can check for the nearest camps? Like you guys said, counseling is the next best thing :D
Posted 7/25/2008 4:52 AM (GMT 0)
http://www.ccfa.org/kidsteens/camp_calendar

My experience is with the CA Lake Hughes one.
Posted 7/25/2008 5:38 PM (GMT 0)
Thanks ^^ theres a couple of them not far from here. Once my health is back under control I'll definitely look into counseling.
Posted 7/25/2008 9:33 PM (GMT 0)
I talked to the lady today and she just emailed me all the paperwork so it looks like I may be going?

It's a long weekend, which I think would be good for people that would have to take off work. Begins on Thurs morning and goes until Sun afternoon - the kids are there Thurs evening through Sun afternoon.

I work FT but am pretty flexible in my scheduling so I can arrange around it.
Posted 7/25/2008 9:59 PM (GMT 0)
Have fun and I hope there's lots of toilet's . Try not to go all at the same time. lol gail
Posted 7/25/2008 11:17 PM (GMT 0)
gosh would i love to be able to participate in one of these programs! too bad i am back to work :/ BOOOOOOO!
Posted 8/25/2008 3:27 AM (GMT 0)
Bumping for the update!
Posted 8/25/2008 5:50 AM (GMT 0)
How do they manage it logistically - food, special diets, toilets, d, things like that?

Are the kids who go in the middle of nightmare flares (if so, how do they manage it?) or are their symptoms a little more stable?

Ivy.
Posted 8/25/2008 1:31 PM (GMT 0)
That's fantastic Aimee! I'm jealous. When I went it was so nice to talk to people who could relate- especially to the horrors of prednisone!

Ivy- the camp I went to was specifically designed for sick kids, they had a special nutrition team and every meal had multiple choices to accommodate many diets. The bathrooms were inside the cabins so if a kid had an issue during the night they were close enough to call us or usually they were ok to deal with it on their own (many of us do handle these issues alone as there tends to be little others can do to help). I found most of the kids were pretty stable, but not all, there were some when I was there that spent a couple nights in the well shell.

But that's just my experience with the camp I went to, I'm sure Aimee can share more about hers.
Posted 8/25/2008 4:14 PM (GMT 0)
Yes, Ivy, they did a great job on handling everything. This one is hosted at Camp John Marc, which is a camp designed just for children with disabilities and ongoing health issues. They have a full medical facility and pediatric GIs from around the state that come and stay the weekend. They fish with the kids, swim, play volleyball, eat in the dining hall, etc and really check in on them. They also have a staff of nurses that come.

Every facility has adequate bathrooms and they are all close. Of course, not all IBD sufferers have the big D on a regular basis so it wasn't like there was a line at the bathroom. And, when someone had to go no kid made fun of another kid when we went running for the bathroom, you know? It's a nice change for those kids to not worry about it.

We were given info on each kid and what they could eat and such but the kids really regulated that themselves. They know what they can or cannot eat and there was a variety of options given each mealtime. The nurses handled all the medication dispensing so we didn't have to worry about that. They had a system for handling soiled beds, as well, where no one would know it was soiled by an accident.

My girls were all pretty good and stable. Some kids couldn't come at hte last minute because they were not well enough, and some kids go home each year because they get ill while there. The camp is very familiar with handling care flight and EMS coming since they host camps for ill children all summer. My understanding is that a kid who is in a bad flare likely won't even want to come... I never want to leave my couch when I am in a bad flare =)
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