Summer Camp for CF Children

[jshatner]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Thank you for your reply. I appreciate your breakdown of information. This type of forum can be really insightful and educational

 

[jshatner]

Thank you for your reply. I appreciate your breakdown of information. This type of forum can be really insightful and educational

 

[jshatner]

Thank you for your reply. I appreciate your breakdown of information. This type of forum can be really insightful and educational

 

[AleksandraKaczynska]

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]

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]

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]

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]

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.