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jshatner
11-27-2010, 07:31 PM
Hi everyone,
I'm new and doing research on summer camps for CF kids. In particular, I'm looking for advice from all of you on what you as a parent, deem important, fun, and safe when considering summer camp for your children with CF.

I don't have CF but someone close to me does. I'm in school to become a Respiratory Therapist and am doing research for a proposal I'm putting together for a new summer camp for kids w/CF.


Thanks everyone for your help!

Joseph S

jshatner
11-27-2010, 07:31 PM
Hi everyone,
I'm new and doing research on summer camps for CF kids. In particular, I'm looking for advice from all of you on what you as a parent, deem important, fun, and safe when considering summer camp for your children with CF.

I don't have CF but someone close to me does. I'm in school to become a Respiratory Therapist and am doing research for a proposal I'm putting together for a new summer camp for kids w/CF.


Thanks everyone for your help!

Joseph S

jshatner
11-27-2010, 07:31 PM
Hi everyone,
<br />I'm new and doing research on summer camps for CF kids. In particular, I'm looking for advice from all of you on what you as a parent, deem important, fun, and safe when considering summer camp for your children with CF.
<br />
<br />I don't have CF but someone close to me does. I'm in school to become a Respiratory Therapist and am doing research for a proposal I'm putting together for a new summer camp for kids w/CF.
<br />
<br />
<br />Thanks everyone for your help!
<br />
<br />Joseph S

beansmom
11-27-2010, 07:50 PM
Joseph--

You need to do some more research on this topic. Years ago kids with CF did have summer camps. They were discontinued because of infection control issues and bad bugs being passed back and forth. Infection control issues are taken very seriously in CF centers and I am sure a CF camp would be discouraged by any reputable CF center. As a parent of a child with CF I would not let my child go to a CF specific summer camp for that reason.

beansmom
11-27-2010, 07:50 PM
Joseph--

You need to do some more research on this topic. Years ago kids with CF did have summer camps. They were discontinued because of infection control issues and bad bugs being passed back and forth. Infection control issues are taken very seriously in CF centers and I am sure a CF camp would be discouraged by any reputable CF center. As a parent of a child with CF I would not let my child go to a CF specific summer camp for that reason.

beansmom
11-27-2010, 07:50 PM
Joseph--
<br />
<br />You need to do some more research on this topic. Years ago kids with CF did have summer camps. They were discontinued because of infection control issues and bad bugs being passed back and forth. Infection control issues are taken very seriously in CF centers and I am sure a CF camp would be discouraged by any reputable CF center. As a parent of a child with CF I would not let my child go to a CF specific summer camp for that reason.

jshatner
11-27-2010, 07:54 PM
I have found that to be the case thus far. But, I'm glad to have your feedback on the topic so thank you for the reply

jshatner
11-27-2010, 07:54 PM
I have found that to be the case thus far. But, I'm glad to have your feedback on the topic so thank you for the reply

jshatner
11-27-2010, 07:54 PM
I have found that to be the case thus far. But, I'm glad to have your feedback on the topic so thank you for the reply

hmw
11-27-2010, 08:18 PM
I agree with Beansmom.

As sad as it makes me that Emily is so isolated from other children that she would be able to relate to with her disease, I would not permit her to attend a camp like this either. Strict infection control is HARD to maintain even in the clinic/hospital setting, and I couldn't imagine strict enough protocol being maintained in the camp environment.

I know the justification is frequently made "only kids who don't culture x, y or z would be allowed to attend" when this kind of thing is brought up, but we all know that kids do not always produce in their sputum samples everything they are growing, and there is always a first time~ that period of time one is harboring whatever they are colonizing before it's detected for the first time.

I am not opposed to camp in general for kids with CF as long as their medical needs can be attended to... I believe they should be active and allowed to participate in whatever they are physically capable of (including swimming, sports and as much outdoor activity as possible) but contact with others with CF... unfortunately, no.

hmw
11-27-2010, 08:18 PM
I agree with Beansmom.

As sad as it makes me that Emily is so isolated from other children that she would be able to relate to with her disease, I would not permit her to attend a camp like this either. Strict infection control is HARD to maintain even in the clinic/hospital setting, and I couldn't imagine strict enough protocol being maintained in the camp environment.

I know the justification is frequently made "only kids who don't culture x, y or z would be allowed to attend" when this kind of thing is brought up, but we all know that kids do not always produce in their sputum samples everything they are growing, and there is always a first time~ that period of time one is harboring whatever they are colonizing before it's detected for the first time.

I am not opposed to camp in general for kids with CF as long as their medical needs can be attended to... I believe they should be active and allowed to participate in whatever they are physically capable of (including swimming, sports and as much outdoor activity as possible) but contact with others with CF... unfortunately, no.

hmw
11-27-2010, 08:18 PM
I agree with Beansmom.
<br />
<br />As sad as it makes me that Emily is so isolated from other children that she would be able to relate to with her disease, I would not permit her to attend a camp like this either. Strict infection control is HARD to maintain even in the clinic/hospital setting, and I couldn't imagine strict enough protocol being maintained in the camp environment.
<br />
<br />I know the justification is frequently made "only kids who don't culture x, y or z would be allowed to attend" when this kind of thing is brought up, but we all know that kids do not always produce in their sputum samples everything they are growing, and there is always a first time~ that period of time one is harboring whatever they are colonizing before it's detected for the first time.
<br />
<br />I am not opposed to camp in general for kids with CF as long as their medical needs can be attended to... I believe they should be active and allowed to participate in whatever they are physically capable of (including swimming, sports and as much outdoor activity as possible) but contact with others with CF... unfortunately, no.

jshatner
11-27-2010, 08:29 PM
Thank you for your reply. I appreciate your breakdown of information. This type of forum can be really insightful and educational

jshatner
11-27-2010, 08:29 PM
Thank you for your reply. I appreciate your breakdown of information. This type of forum can be really insightful and educational

jshatner
11-27-2010, 08:29 PM
Thank you for your reply. I appreciate your breakdown of information. This type of forum can be really insightful and educational

AleksandraKaczynska
11-28-2010, 07:18 AM
I also agree.
I would not send Joanna to any place - camp or meeting - oragnised for kids/families with cf.
I was even told not to go to sanatoriums or sanatrium areas - keep away - go camping to the lakes or anywhere - but keep away from places where you can find more people with diseases....

AleksandraKaczynska
11-28-2010, 07:18 AM
I also agree.
I would not send Joanna to any place - camp or meeting - oragnised for kids/families with cf.
I was even told not to go to sanatoriums or sanatrium areas - keep away - go camping to the lakes or anywhere - but keep away from places where you can find more people with diseases....

AleksandraKaczynska
11-28-2010, 07:18 AM
I also agree.
<br />I would not send Joanna to any place - camp or meeting - oragnised for kids/families with cf.
<br />I was even told not to go to sanatoriums or sanatrium areas - keep away - go camping to the lakes or anywhere - but keep away from places where you can find more people with diseases....

65rosessamurai
06-09-2011, 03:10 AM
I was once a CF camper in my younger years.
The reason for the breakdown was already mentioned--some patients who didn't culture "X" or "Y" happened to after returning from camp.
Also, besides the usual Psudomonas, there was a new infection spreading, called "Burkholder's Cepecia". The Cepecia was (and still is) a hard infection to beat, and that was the actual "instigator" to the demise of the CF camps, in my opinion based on what I had seen from experience.
In addition, a rule, called the "3 foot rule" was also made, which means that CF patients were to stay at a distance of 3 feet from each other in order to prevent the exchange of any infections.

65rosessamurai
06-09-2011, 03:10 AM
I was once a CF camper in my younger years.
The reason for the breakdown was already mentioned--some patients who didn't culture "X" or "Y" happened to after returning from camp.
Also, besides the usual Psudomonas, there was a new infection spreading, called "Burkholder's Cepecia". The Cepecia was (and still is) a hard infection to beat, and that was the actual "instigator" to the demise of the CF camps, in my opinion based on what I had seen from experience.
In addition, a rule, called the "3 foot rule" was also made, which means that CF patients were to stay at a distance of 3 feet from each other in order to prevent the exchange of any infections.

65rosessamurai
06-09-2011, 03:10 AM
I was once a CF camper in my younger years.
<br />The reason for the breakdown was already mentioned--some patients who didn't culture "X" or "Y" happened to after returning from camp.
<br />Also, besides the usual Psudomonas, there was a new infection spreading, called "Burkholder's Cepecia". The Cepecia was (and still is) a hard infection to beat, and that was the actual "instigator" to the demise of the CF camps, in my opinion based on what I had seen from experience.
<br />In addition, a rule, called the "3 foot rule" was also made, which means that CF patients were to stay at a distance of 3 feet from each other in order to prevent the exchange of any infections.

tiredme
12-08-2011, 10:25 AM
In a <a href="http://www.militaryschools411.com/military-camp/" target="_blank">website</a> I've read, careful planning is needed in order for the summer camp to be a success. Put in consideration the probability of infection occurring and other problems. No parents will allow their kids to get hurt so this will be a challenge for you. I wish you all the best. <img src="i/expressions/face-icon-small-smile.gif" border="0">

tiredme
12-08-2011, 10:25 AM
In a <a href="http://www.militaryschools411.com/military-camp/" target="_blank">website</a> I've read, careful planning is needed in order for the summer camp to be a success. Put in consideration the probability of infection occurring and other problems. No parents will allow their kids to get hurt so this will be a challenge for you. I wish you all the best. <img src="i/expressions/face-icon-small-smile.gif" border="0">

tiredme
12-08-2011, 10:25 AM
In a <a href="http://www.militaryschools411.com/military-camp/" target="_blank">website</a> I've read, careful planning is needed in order for the summer camp to be a success. Put in consideration the probability of infection occurring and other problems. No parents will allow their kids to get hurt so this will be a challenge for you. I wish you all the best. <img src="i/expressions/face-icon-small-smile.gif" border="0">

TonyaH
12-08-2011, 11:04 AM
Hi Joseph,
The whole idea of a camp just for cf kids seems completely impossible to me. I think one thing you must realize in your research is that parents are told from day one to keep thier cf children away from anyone else with CF. They 'put the fear of God in us", so to speak. Our generation of CF parenting is completely different than the generation or two before us. Better understanding of cross-contamination, mixed with readily available information about this disease makes us much more aware of the way bacteria works and how infection spreads.

That is not to say we want our children to sit in the house and never do anything. Like Harriett mentioned, a camp for the general public, scout camps, school camps, etc., would all be doable if proper treatment and sterilization methods can be enforced. In fact, my son's doctor even told me when he was younger that if he stayed healthy, she would recommend he go away for a week and not even DO his treatments...just be a kid! (Easier said than done..I don't think we would ever agree to that!)

Another bit of information that might help you in your research is camps such as Victory Junction Gang in North Carolina. This is a camp that invites children with medical conditions to spend a week away with full medical support,, doctors, nurses, a camp hospital, etc. They have theme weeks and have all burn victims one week, cancer patient another, etc. They do accept one CF patient to each week camp. That way, CFers can still attend and be around children with medical conditions, but do not have the fear of cross contamination from other CF patients. You might want to learn more about camps like these.

Good luck in your research.

TonyaH
12-08-2011, 11:04 AM
Hi Joseph,
The whole idea of a camp just for cf kids seems completely impossible to me. I think one thing you must realize in your research is that parents are told from day one to keep thier cf children away from anyone else with CF. They 'put the fear of God in us", so to speak. Our generation of CF parenting is completely different than the generation or two before us. Better understanding of cross-contamination, mixed with readily available information about this disease makes us much more aware of the way bacteria works and how infection spreads.

That is not to say we want our children to sit in the house and never do anything. Like Harriett mentioned, a camp for the general public, scout camps, school camps, etc., would all be doable if proper treatment and sterilization methods can be enforced. In fact, my son's doctor even told me when he was younger that if he stayed healthy, she would recommend he go away for a week and not even DO his treatments...just be a kid! (Easier said than done..I don't think we would ever agree to that!)

Another bit of information that might help you in your research is camps such as Victory Junction Gang in North Carolina. This is a camp that invites children with medical conditions to spend a week away with full medical support,, doctors, nurses, a camp hospital, etc. They have theme weeks and have all burn victims one week, cancer patient another, etc. They do accept one CF patient to each week camp. That way, CFers can still attend and be around children with medical conditions, but do not have the fear of cross contamination from other CF patients. You might want to learn more about camps like these.

Good luck in your research.

TonyaH
12-08-2011, 11:04 AM
Hi Joseph,
The whole idea of a camp just for cf kids seems completely impossible to me. I think one thing you must realize in your research is that parents are told from day one to keep thier cf children away from anyone else with CF. They 'put the fear of God in us", so to speak. Our generation of CF parenting is completely different than the generation or two before us. Better understanding of cross-contamination, mixed with readily available information about this disease makes us much more aware of the way bacteria works and how infection spreads.

That is not to say we want our children to sit in the house and never do anything. Like Harriett mentioned, a camp for the general public, scout camps, school camps, etc., would all be doable if proper treatment and sterilization methods can be enforced. In fact, my son's doctor even told me when he was younger that if he stayed healthy, she would recommend he go away for a week and not even DO his treatments...just be a kid! (Easier said than done..I don't think we would ever agree to that!)

Another bit of information that might help you in your research is camps such as Victory Junction Gang in North Carolina. This is a camp that invites children with medical conditions to spend a week away with full medical support,, doctors, nurses, a camp hospital, etc. They have theme weeks and have all burn victims one week, cancer patient another, etc. They do accept one CF patient to each week camp. That way, CFers can still attend and be around children with medical conditions, but do not have the fear of cross contamination from other CF patients. You might want to learn more about camps like these.

Good luck in your research.

Hardak
12-08-2011, 04:19 PM
I was a CF camper years ago, the camp I went to wouldn't let you go to camp if you where culturing anything that couldn't be treated with just oral antibiotics. To me that seems a reasonable cut off/control for keeping from passing something truly nasty from one child to the next.

Keith

Hardak
12-08-2011, 04:19 PM
I was a CF camper years ago, the camp I went to wouldn't let you go to camp if you where culturing anything that couldn't be treated with just oral antibiotics. To me that seems a reasonable cut off/control for keeping from passing something truly nasty from one child to the next.

Keith

Hardak
12-08-2011, 04:19 PM
I was a CF camper years ago, the camp I went to wouldn't let you go to camp if you where culturing anything that couldn't be treated with just oral antibiotics. To me that seems a reasonable cut off/control for keeping from passing something truly nasty from one child to the next.

Keith

Printer
12-08-2011, 04:40 PM
Joseph:

Should you decide to contact any CF Doctor at any APPROVED CF CENTER, that will complete your research very quickly. There is a list of approved centers available by clicking on at the top right of this page.

Good luck,
Bill

Printer
12-08-2011, 04:40 PM
Joseph:

Should you decide to contact any CF Doctor at any APPROVED CF CENTER, that will complete your research very quickly. There is a list of approved centers available by clicking on at the top right of this page.

Good luck,
Bill

Printer
12-08-2011, 04:40 PM
Joseph:

Should you decide to contact any CF Doctor at any APPROVED CF CENTER, that will complete your research very quickly. There is a list of approved centers available by clicking on at the top right of this page.

Good luck,
Bill

KHoyle
12-08-2011, 05:55 PM
<br>So, in this this time of Social Media overload, why don't you do an online virtual camp? With programs like Skype, CF patients can see each other, talk to each other and (essentially) be with each other without sharing bacteria.Granted, you may think it is not as good as direct personal interaction, but it is not far off. Kids nowadays spend more time in this virtual world than they do in the real world. Some would argue that it is not as good as real interactive relatioships, but others woudl argue that it is just as good (without the germs).

KHoyle
12-08-2011, 05:55 PM
<br>So, in this this time of Social Media overload, why don't you do an online virtual camp? With programs like Skype, CF patients can see each other, talk to each other and (essentially) be with each other without sharing bacteria.Granted, you may think it is not as good as direct personal interaction, but it is not far off. Kids nowadays spend more time in this virtual world than they do in the real world. Some would argue that it is not as good as real interactive relatioships, but others woudl argue that it is just as good (without the germs).

KHoyle
12-08-2011, 05:55 PM
<br>So, in this this time of Social Media overload, why don't you do an online virtual camp? With programs like Skype, CF patients can see each other, talk to each other and (essentially) be with each other without sharing bacteria.Granted, you may think it is not as good as direct personal interaction, but it is not far off. Kids nowadays spend more time in this virtual world than they do in the real world. Some would argue that it is not as good as real interactive relatioships, but others woudl argue that it is just as good (without the germs).

imported_Momto2
02-22-2012, 05:33 PM
Very nice idea in theory, bad idea in practice. Frankly, I chalk up some of my longevity to my parents keeping me away from other CF kids, even when it wasnt fashionable. Even if kiddos are cultured prior to attending, I still wouldnt risk my child or anyone elses. An online camp that encourages sharing "camping" experiences (in other words, activities that gets kids out, active, and using their lungs) such as rock climbing, canoeing, hiking, ect, might be very successful. Maybe kids could be paired up, with one kid being capable of doing the camping stuff with another that is stuck doing an IV, or temporarily incapacitated. That are a lot of neat avenues you could pursue! Just need to find a way that keep it safe for all the kids.

imported_Momto2
02-22-2012, 05:33 PM
Very nice idea in theory, bad idea in practice. Frankly, I chalk up some of my longevity to my parents keeping me away from other CF kids, even when it wasnt fashionable. Even if kiddos are cultured prior to attending, I still wouldnt risk my child or anyone elses. An online camp that encourages sharing "camping" experiences (in other words, activities that gets kids out, active, and using their lungs) such as rock climbing, canoeing, hiking, ect, might be very successful. Maybe kids could be paired up, with one kid being capable of doing the camping stuff with another that is stuck doing an IV, or temporarily incapacitated. That are a lot of neat avenues you could pursue! Just need to find a way that keep it safe for all the kids.

Anomie
02-22-2012, 05:47 PM
Swimming, hiking, canoing or just sitting around the camp fire roasting marshmallows and telling ghost stories. Basically all the same things regular kids enjoy doing at summer camp.

Anomie
02-22-2012, 05:47 PM
Swimming, hiking, canoing or just sitting around the camp fire roasting marshmallows and telling ghost stories. Basically all the same things regular kids enjoy doing at summer camp.

KemmyRose
04-03-2012, 07:31 AM
Basically all the same things regular kids enjoy doing at summer camp.
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KemmyRose
04-03-2012, 07:31 AM
Basically all the same things regular kids enjoy doing at summer camp.
criminal law sydney
(http://www.rsacrime.com.au/)