To CF camp or not to CF camp that is the question???

brewz2 · Mar 7, 2008

I know everybody is different, but I tend to err on the side of caution. I know there's another child in our local community/school that has cf, but when I go to Walmart, or out to eat - when and where the other child has been is so far out of my hands - I just can't keep track of something like that. On the other hand, sending my kids off to camp would be something I can control, an atmosphere that I know they can avoid.

I know our CF clinic made sure that our school distrct didn't even have my daughter, and the other child on the same bus...

That's just my opinion, but I hope it helps.

Tracey, mom to Sydney, 6 and Seth 2 - both w/cf df508

brewz2 · Mar 7, 2008

I know everybody is different, but I tend to err on the side of caution. I know there's another child in our local community/school that has cf, but when I go to Walmart, or out to eat - when and where the other child has been is so far out of my hands - I just can't keep track of something like that. On the other hand, sending my kids off to camp would be something I can control, an atmosphere that I know they can avoid.

I know our CF clinic made sure that our school distrct didn't even have my daughter, and the other child on the same bus...

That's just my opinion, but I hope it helps.

Tracey, mom to Sydney, 6 and Seth 2 - both w/cf df508

brewz2 · Mar 7, 2008

I know everybody is different, but I tend to err on the side of caution. I know there's another child in our local community/school that has cf, but when I go to Walmart, or out to eat - when and where the other child has been is so far out of my hands - I just can't keep track of something like that. On the other hand, sending my kids off to camp would be something I can control, an atmosphere that I know they can avoid.

I know our CF clinic made sure that our school distrct didn't even have my daughter, and the other child on the same bus...

That's just my opinion, but I hope it helps.

Tracey, mom to Sydney, 6 and Seth 2 - both w/cf df508

brewz2 · Mar 7, 2008

I know everybody is different, but I tend to err on the side of caution. I know there's another child in our local community/school that has cf, but when I go to Walmart, or out to eat - when and where the other child has been is so far out of my hands - I just can't keep track of something like that. On the other hand, sending my kids off to camp would be something I can control, an atmosphere that I know they can avoid.

I know our CF clinic made sure that our school distrct didn't even have my daughter, and the other child on the same bus...

That's just my opinion, but I hope it helps.

Tracey, mom to Sydney, 6 and Seth 2 - both w/cf df508

brewz2 · Mar 7, 2008

I know everybody is different, but I tend to err on the side of caution. I know there's another child in our local community/school that has cf, but when I go to Walmart, or out to eat - when and where the other child has been is so far out of my hands - I just can't keep track of something like that. On the other hand, sending my kids off to camp would be something I can control, an atmosphere that I know they can avoid.
 
 I know our CF clinic made sure that our school distrct didn't even have my daughter, and the other child on the same bus...
 
 That's just my opinion, but I hope it helps.
 
 Tracey, mom to Sydney, 6 and Seth 2 - both w/cf df508

TinyGreenTurtles · Mar 7, 2008

I LOVED cf camp. Granted, yeah, there were probably a million chances for cross contamination and stuff, but even if I'd caught something from it (I didn't) I wouldn't regret it. It gave me a chance to be with kids like me, kids that understood what I went through, etc. I have met people that didn't grow up with the chance to spend time with other cf'ers, and they felt like something was missing because of it. No one can understand what people with cf go through like another person who goes through the exact same things can. As Amy said though, some probably never feel that way. My camp didn't focus only on cf though, we did sooo much that wasn't centered around cf at all. I am the type of person who doesn't avoid everything risky though. I would rather wash my hands, keep a distance from others, and have as many exciting experiences as I can while I am able. I would hate if I missed out on so much because of my cf. Just offering my point of view on this one, it all boils down to personal choices for you and your children.

EDIT: I wanted to add that people with cf can pick up things from people without cf as well. Most cf camps will try to avoid the contamination, whereas another camp may not be as careful. Just a thought.

TinyGreenTurtles · Mar 7, 2008

I LOVED cf camp. Granted, yeah, there were probably a million chances for cross contamination and stuff, but even if I'd caught something from it (I didn't) I wouldn't regret it. It gave me a chance to be with kids like me, kids that understood what I went through, etc. I have met people that didn't grow up with the chance to spend time with other cf'ers, and they felt like something was missing because of it. No one can understand what people with cf go through like another person who goes through the exact same things can. As Amy said though, some probably never feel that way. My camp didn't focus only on cf though, we did sooo much that wasn't centered around cf at all. I am the type of person who doesn't avoid everything risky though. I would rather wash my hands, keep a distance from others, and have as many exciting experiences as I can while I am able. I would hate if I missed out on so much because of my cf. Just offering my point of view on this one, it all boils down to personal choices for you and your children.

EDIT: I wanted to add that people with cf can pick up things from people without cf as well. Most cf camps will try to avoid the contamination, whereas another camp may not be as careful. Just a thought.

TinyGreenTurtles · Mar 7, 2008

I LOVED cf camp. Granted, yeah, there were probably a million chances for cross contamination and stuff, but even if I'd caught something from it (I didn't) I wouldn't regret it. It gave me a chance to be with kids like me, kids that understood what I went through, etc. I have met people that didn't grow up with the chance to spend time with other cf'ers, and they felt like something was missing because of it. No one can understand what people with cf go through like another person who goes through the exact same things can. As Amy said though, some probably never feel that way. My camp didn't focus only on cf though, we did sooo much that wasn't centered around cf at all. I am the type of person who doesn't avoid everything risky though. I would rather wash my hands, keep a distance from others, and have as many exciting experiences as I can while I am able. I would hate if I missed out on so much because of my cf. Just offering my point of view on this one, it all boils down to personal choices for you and your children.

EDIT: I wanted to add that people with cf can pick up things from people without cf as well. Most cf camps will try to avoid the contamination, whereas another camp may not be as careful. Just a thought.

TinyGreenTurtles · Mar 7, 2008

I LOVED cf camp. Granted, yeah, there were probably a million chances for cross contamination and stuff, but even if I'd caught something from it (I didn't) I wouldn't regret it. It gave me a chance to be with kids like me, kids that understood what I went through, etc. I have met people that didn't grow up with the chance to spend time with other cf'ers, and they felt like something was missing because of it. No one can understand what people with cf go through like another person who goes through the exact same things can. As Amy said though, some probably never feel that way. My camp didn't focus only on cf though, we did sooo much that wasn't centered around cf at all. I am the type of person who doesn't avoid everything risky though. I would rather wash my hands, keep a distance from others, and have as many exciting experiences as I can while I am able. I would hate if I missed out on so much because of my cf. Just offering my point of view on this one, it all boils down to personal choices for you and your children.

EDIT: I wanted to add that people with cf can pick up things from people without cf as well. Most cf camps will try to avoid the contamination, whereas another camp may not be as careful. Just a thought.

TinyGreenTurtles · Mar 7, 2008

I LOVED cf camp. Granted, yeah, there were probably a million chances for cross contamination and stuff, but even if I'd caught something from it (I didn't) I wouldn't regret it. It gave me a chance to be with kids like me, kids that understood what I went through, etc. I have met people that didn't grow up with the chance to spend time with other cf'ers, and they felt like something was missing because of it. No one can understand what people with cf go through like another person who goes through the exact same things can. As Amy said though, some probably never feel that way. My camp didn't focus only on cf though, we did sooo much that wasn't centered around cf at all. I am the type of person who doesn't avoid everything risky though. I would rather wash my hands, keep a distance from others, and have as many exciting experiences as I can while I am able. I would hate if I missed out on so much because of my cf. Just offering my point of view on this one, it all boils down to personal choices for you and your children.
 
 EDIT: I wanted to add that people with cf can pick up things from people without cf as well. Most cf camps will try to avoid the contamination, whereas another camp may not be as careful. Just a thought.

rubyroselee · Mar 7, 2008

Hi there,

This is just from my own experience at CF camp...

When I was a kid/teen, I was feeling pretty secluded about my CF. My parents found out about a local CF camp for me to attend and I was SOOO excited. They told me that I'd be around kids that would have CPT and meds just like me. So my parents tried to get everything set up for me to go that year (when I was 12 yrs old), but we cut it too close for my cultures and I couldn't go.

Luckily I didn't go, because they closed the camp down after that year due to problems with cross-infection with B. cepacia.

I was so upset about not being able to go, that my parents found another camp in the next state over for me to attend. I started going to that CF camp (and it was also open to other respiratory diseases) the following year when I was 13 yrs old.

It was the best experience of my life! I attended that camp as a camper until I was 16 yrs old, and then I became a staff member up until a couple years ago. It has now turned into a camp for kids with any medical problems because CFers no longer came. They just dwindled and dwindled until there were none left. Some have passed, but most do not come because of the cross-contamination issue and it's almost impossible to recruit anyone anymore.

I just have the fondest memories of all us kids doing CPT together on therapy tables, taking our enzymes at mealtimes, and laughing and coughing at all the funny things at camp. For the first time I didn't feel alone.

If I were you, I would see what kinds of other respiratory diseases the kids have at that camp. If they allow other CFers, do they have strict infection control rules? Do they do several cultures ahead of time?

I have spent a lot of time around other CFers and I don't have much worry unless there's MRSA or B. cepacia. But that's just me.

But if your son is comfortable with his CF and does not feel the need to meet or talk to other kids with it, then maybe he'd be better off going to one of the other camps. I just hope he won't feel excluded because of the extra treatments/meds he has to do when no one else has to do that.

Everyone is different with regards to being around others with CF. My experience was so great at the CF camp that I would never regret going there. The experience was worth the risk. I think going to that camp really changed my life to be honest.

rubyroselee · Mar 7, 2008

Hi there,

This is just from my own experience at CF camp...

When I was a kid/teen, I was feeling pretty secluded about my CF. My parents found out about a local CF camp for me to attend and I was SOOO excited. They told me that I'd be around kids that would have CPT and meds just like me. So my parents tried to get everything set up for me to go that year (when I was 12 yrs old), but we cut it too close for my cultures and I couldn't go.

Luckily I didn't go, because they closed the camp down after that year due to problems with cross-infection with B. cepacia.

I was so upset about not being able to go, that my parents found another camp in the next state over for me to attend. I started going to that CF camp (and it was also open to other respiratory diseases) the following year when I was 13 yrs old.

It was the best experience of my life! I attended that camp as a camper until I was 16 yrs old, and then I became a staff member up until a couple years ago. It has now turned into a camp for kids with any medical problems because CFers no longer came. They just dwindled and dwindled until there were none left. Some have passed, but most do not come because of the cross-contamination issue and it's almost impossible to recruit anyone anymore.

I just have the fondest memories of all us kids doing CPT together on therapy tables, taking our enzymes at mealtimes, and laughing and coughing at all the funny things at camp. For the first time I didn't feel alone.

If I were you, I would see what kinds of other respiratory diseases the kids have at that camp. If they allow other CFers, do they have strict infection control rules? Do they do several cultures ahead of time?

I have spent a lot of time around other CFers and I don't have much worry unless there's MRSA or B. cepacia. But that's just me.

But if your son is comfortable with his CF and does not feel the need to meet or talk to other kids with it, then maybe he'd be better off going to one of the other camps. I just hope he won't feel excluded because of the extra treatments/meds he has to do when no one else has to do that.

Everyone is different with regards to being around others with CF. My experience was so great at the CF camp that I would never regret going there. The experience was worth the risk. I think going to that camp really changed my life to be honest.

rubyroselee · Mar 7, 2008

Hi there,

This is just from my own experience at CF camp...

When I was a kid/teen, I was feeling pretty secluded about my CF. My parents found out about a local CF camp for me to attend and I was SOOO excited. They told me that I'd be around kids that would have CPT and meds just like me. So my parents tried to get everything set up for me to go that year (when I was 12 yrs old), but we cut it too close for my cultures and I couldn't go.

Luckily I didn't go, because they closed the camp down after that year due to problems with cross-infection with B. cepacia.

I was so upset about not being able to go, that my parents found another camp in the next state over for me to attend. I started going to that CF camp (and it was also open to other respiratory diseases) the following year when I was 13 yrs old.

It was the best experience of my life! I attended that camp as a camper until I was 16 yrs old, and then I became a staff member up until a couple years ago. It has now turned into a camp for kids with any medical problems because CFers no longer came. They just dwindled and dwindled until there were none left. Some have passed, but most do not come because of the cross-contamination issue and it's almost impossible to recruit anyone anymore.

I just have the fondest memories of all us kids doing CPT together on therapy tables, taking our enzymes at mealtimes, and laughing and coughing at all the funny things at camp. For the first time I didn't feel alone.

If I were you, I would see what kinds of other respiratory diseases the kids have at that camp. If they allow other CFers, do they have strict infection control rules? Do they do several cultures ahead of time?

I have spent a lot of time around other CFers and I don't have much worry unless there's MRSA or B. cepacia. But that's just me.

But if your son is comfortable with his CF and does not feel the need to meet or talk to other kids with it, then maybe he'd be better off going to one of the other camps. I just hope he won't feel excluded because of the extra treatments/meds he has to do when no one else has to do that.

Everyone is different with regards to being around others with CF. My experience was so great at the CF camp that I would never regret going there. The experience was worth the risk. I think going to that camp really changed my life to be honest.

rubyroselee · Mar 7, 2008

Hi there,

This is just from my own experience at CF camp...

When I was a kid/teen, I was feeling pretty secluded about my CF. My parents found out about a local CF camp for me to attend and I was SOOO excited. They told me that I'd be around kids that would have CPT and meds just like me. So my parents tried to get everything set up for me to go that year (when I was 12 yrs old), but we cut it too close for my cultures and I couldn't go.

Luckily I didn't go, because they closed the camp down after that year due to problems with cross-infection with B. cepacia.

I was so upset about not being able to go, that my parents found another camp in the next state over for me to attend. I started going to that CF camp (and it was also open to other respiratory diseases) the following year when I was 13 yrs old.

It was the best experience of my life! I attended that camp as a camper until I was 16 yrs old, and then I became a staff member up until a couple years ago. It has now turned into a camp for kids with any medical problems because CFers no longer came. They just dwindled and dwindled until there were none left. Some have passed, but most do not come because of the cross-contamination issue and it's almost impossible to recruit anyone anymore.

I just have the fondest memories of all us kids doing CPT together on therapy tables, taking our enzymes at mealtimes, and laughing and coughing at all the funny things at camp. For the first time I didn't feel alone.

If I were you, I would see what kinds of other respiratory diseases the kids have at that camp. If they allow other CFers, do they have strict infection control rules? Do they do several cultures ahead of time?

I have spent a lot of time around other CFers and I don't have much worry unless there's MRSA or B. cepacia. But that's just me.

But if your son is comfortable with his CF and does not feel the need to meet or talk to other kids with it, then maybe he'd be better off going to one of the other camps. I just hope he won't feel excluded because of the extra treatments/meds he has to do when no one else has to do that.

Everyone is different with regards to being around others with CF. My experience was so great at the CF camp that I would never regret going there. The experience was worth the risk. I think going to that camp really changed my life to be honest.

rubyroselee · Mar 7, 2008

Hi there,
 
 This is just from my own experience at CF camp...
 
 When I was a kid/teen, I was feeling pretty secluded about my CF. My parents found out about a local CF camp for me to attend and I was SOOO excited. They told me that I'd be around kids that would have CPT and meds just like me. So my parents tried to get everything set up for me to go that year (when I was 12 yrs old), but we cut it too close for my cultures and I couldn't go.
 
 Luckily I didn't go, because they closed the camp down after that year due to problems with cross-infection with B. cepacia.
 
 I was so upset about not being able to go, that my parents found another camp in the next state over for me to attend. I started going to that CF camp (and it was also open to other respiratory diseases) the following year when I was 13 yrs old.
 
 It was the best experience of my life! I attended that camp as a camper until I was 16 yrs old, and then I became a staff member up until a couple years ago. It has now turned into a camp for kids with any medical problems because CFers no longer came. They just dwindled and dwindled until there were none left. Some have passed, but most do not come because of the cross-contamination issue and it's almost impossible to recruit anyone anymore.
 
 I just have the fondest memories of all us kids doing CPT together on therapy tables, taking our enzymes at mealtimes, and laughing and coughing at all the funny things at camp. For the first time I didn't feel alone.
 
 If I were you, I would see what kinds of other respiratory diseases the kids have at that camp. If they allow other CFers, do they have strict infection control rules? Do they do several cultures ahead of time?
 
 I have spent a lot of time around other CFers and I don't have much worry unless there's MRSA or B. cepacia. But that's just me.
 
 But if your son is comfortable with his CF and does not feel the need to meet or talk to other kids with it, then maybe he'd be better off going to one of the other camps. I just hope he won't feel excluded because of the extra treatments/meds he has to do when no one else has to do that.
 
 Everyone is different with regards to being around others with CF. My experience was so great at the CF camp that I would never regret going there. The experience was worth the risk. I think going to that camp really changed my life to be honest.

mcbrash · Mar 8, 2008

My son went to CF camp for a few years before the cross contamination became an issue. Myself and his medical team believe the cepacia he had was contracted from camp. Although I think it is important for them to have some kind of contact with each other, camp would be the last place I would send my child.

Sandy
Mom to Matt
Jan 6/78 - May 15/2005

mcbrash · Mar 8, 2008

My son went to CF camp for a few years before the cross contamination became an issue. Myself and his medical team believe the cepacia he had was contracted from camp. Although I think it is important for them to have some kind of contact with each other, camp would be the last place I would send my child.

Sandy
Mom to Matt
Jan 6/78 - May 15/2005

mcbrash · Mar 8, 2008

My son went to CF camp for a few years before the cross contamination became an issue. Myself and his medical team believe the cepacia he had was contracted from camp. Although I think it is important for them to have some kind of contact with each other, camp would be the last place I would send my child.

Sandy
Mom to Matt
Jan 6/78 - May 15/2005

mcbrash · Mar 8, 2008

My son went to CF camp for a few years before the cross contamination became an issue. Myself and his medical team believe the cepacia he had was contracted from camp. Although I think it is important for them to have some kind of contact with each other, camp would be the last place I would send my child.

Sandy
Mom to Matt
Jan 6/78 - May 15/2005

mcbrash · Mar 8, 2008

My son went to CF camp for a few years before the cross contamination became an issue. Myself and his medical team believe the cepacia he had was contracted from camp. Although I think it is important for them to have some kind of contact with each other, camp would be the last place I would send my child.
 
 Sandy
 Mom to Matt
 Jan 6/78 - May 15/2005

To CF camp or not to CF camp that is the question???

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