CF children having to be confinded to hospital rooms

[anonymous]

I don't allow ds to play with any toys and any clinic -- cf or otherwise. I don't let him go to the playroom at the fast food place either. When I put him in a grocery cart -- I wipe down the handles. I have him wash his hands when he comes in from playing outdoors, out shopping, before he eats.

My concern is with CFers and cross contamination. Our clinic assures us that none of their patients has ever had cepacia. How do they know if they're constantly accepting new patients from other areas until AFTER the clinic appointments? Plus a local cfer died awaiting a lung transpant two years ago had cepacia. I read on another site of a person who had cepacia and particpated in the climb for a cure in Minnesota. A number of people with cepacia indicated they used to all go to camp together, hang out in each other's rooms while in the hospital.

I am not going to unnecessarily risk exposing my child to the big bad -- aka cepacia. I am not going to be GUILTED into letting my child interact with other cfers at the clinic or let him play with the toys at the CF clinic by complete strangers on the internet

 

[anonymous]

I don't allow ds to play with any toys and any clinic -- cf or otherwise. I don't let him go to the playroom at the fast food place either. When I put him in a grocery cart -- I wipe down the handles. I have him wash his hands when he comes in from playing outdoors, out shopping, before he eats.

My concern is with CFers and cross contamination. Our clinic assures us that none of their patients has ever had cepacia. How do they know if they're constantly accepting new patients from other areas until AFTER the clinic appointments? Plus a local cfer died awaiting a lung transpant two years ago had cepacia. I read on another site of a person who had cepacia and particpated in the climb for a cure in Minnesota. A number of people with cepacia indicated they used to all go to camp together, hang out in each other's rooms while in the hospital.

I am not going to unnecessarily risk exposing my child to the big bad -- aka cepacia. I am not going to be GUILTED into letting my child interact with other cfers at the clinic or let him play with the toys at the CF clinic by complete strangers on the internet

 

[anonymous]

I agree with everything you are saying. Better to be safe than sorry.

 

[anonymous]

I agree with everything you are saying. Better to be safe than sorry.

 

[kybert]

no need to get nasty about it anon. no ones guilting you into anything. we are just stating the facts. seems you have more of a problem with the actual patients rather than cepacia itself! cepacia patients arent lepers you know and they have every right to try to live a 'normal life'. if you dont like that then its up to you to protect your daughter. but you have no right to speak about them like they are purposely trying to get everyone sick. thats ridiculous.

<blockquote>Quote
<hr>Plus a local cfer died awaiting a lung transpant two years ago had cepacia<hr></blockquote>

i dont see what you are trying to get at here. heaps of people WITHOUT cepacia die waiting for a transplant.

<blockquote>Quote
<hr>I read on another site of a person who had cepacia and particpated in the climb for a cure in Minnesota<hr></blockquote>

if someone with cepacia wants to climb stairs they can. heck, as long as they take precautons to protect other cfers [i doubt that many would participate anyway] i applaud them! it takes alot to climb stairs. id be more scared of a perfect looking healthy person with a raging cold whos coughing on everyone. please dont say it like the person wanted to get everyone sick thanks.

<blockquote>Quote
<hr>A number of people with cepacia indicated they used to all go to camp together, hang out in each other's rooms while in the hospital. <hr></blockquote>

the camps happened years ago and were stopped, but i say good on em for going at the time even though i think the camps were a bad idea. im sure they had a great time. i dont understand why you are talking about these people as if they are evil for doing something they and everyone else at the time thought was ok. its not their fault! as for them hanging out in each others rooms, i dont see a problem with cepacia patients hanging out in another cepacia patients room.

 

[kybert]

no need to get nasty about it anon. no ones guilting you into anything. we are just stating the facts. seems you have more of a problem with the actual patients rather than cepacia itself! cepacia patients arent lepers you know and they have every right to try to live a 'normal life'. if you dont like that then its up to you to protect your daughter. but you have no right to speak about them like they are purposely trying to get everyone sick. thats ridiculous.

<blockquote>Quote
<hr>Plus a local cfer died awaiting a lung transpant two years ago had cepacia<hr></blockquote>

i dont see what you are trying to get at here. heaps of people WITHOUT cepacia die waiting for a transplant.

<blockquote>Quote
<hr>I read on another site of a person who had cepacia and particpated in the climb for a cure in Minnesota<hr></blockquote>

if someone with cepacia wants to climb stairs they can. heck, as long as they take precautons to protect other cfers [i doubt that many would participate anyway] i applaud them! it takes alot to climb stairs. id be more scared of a perfect looking healthy person with a raging cold whos coughing on everyone. please dont say it like the person wanted to get everyone sick thanks.

<blockquote>Quote
<hr>A number of people with cepacia indicated they used to all go to camp together, hang out in each other's rooms while in the hospital. <hr></blockquote>

the camps happened years ago and were stopped, but i say good on em for going at the time even though i think the camps were a bad idea. im sure they had a great time. i dont understand why you are talking about these people as if they are evil for doing something they and everyone else at the time thought was ok. its not their fault! as for them hanging out in each others rooms, i dont see a problem with cepacia patients hanging out in another cepacia patients room.

 

[anonymous]

I don't blame you Liza (or anyone else who is worried about cross-contamination). SOME of us go to great lengths to keep our kids as healthy as possible, while others don't go to any lengths at all - the scary thing is that we all get put together at places like CF Clinics and you never know who is who or who has what. I am totally paranoid about clinic, the peds office, hospitals, etc bc I don't want my daughter to pick up anything. I am also cautious about public places during high-risk seasons and just a tad less during lower risk seasons bc she is a toddler and touches everything, puts her hands in her nose/mouth, etc. As far as I am concerned, these are VERY valid points. When she is an adult she will get to decide how to take care of these situations but for now it is up to her parents so we will keep on with our cautiousness, handwipes, handwashing, etc.

Just in case anyone is wondering, she also has TONS of FUN in her life! More fun than I had at her age, that is for sure!

Kelli - mom of Sydney 2.5 wcf
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[anonymous]

I don't blame you Liza (or anyone else who is worried about cross-contamination). SOME of us go to great lengths to keep our kids as healthy as possible, while others don't go to any lengths at all - the scary thing is that we all get put together at places like CF Clinics and you never know who is who or who has what. I am totally paranoid about clinic, the peds office, hospitals, etc bc I don't want my daughter to pick up anything. I am also cautious about public places during high-risk seasons and just a tad less during lower risk seasons bc she is a toddler and touches everything, puts her hands in her nose/mouth, etc. As far as I am concerned, these are VERY valid points. When she is an adult she will get to decide how to take care of these situations but for now it is up to her parents so we will keep on with our cautiousness, handwipes, handwashing, etc.

Just in case anyone is wondering, she also has TONS of FUN in her life! More fun than I had at her age, that is for sure!

Kelli - mom of Sydney 2.5 wcf
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</a>

 

[JazzysMom]

I believe we should take precautions in general. Not just for the CFer, but for all of us. Handwashing has been proven to be the #1 preventive measure against colds etc. Obviously when you go to the store or McDonalds you dont know if someone with cepacia has been there, BUT you do know when going to clinic that a CFer has been there & that chances are DAMN good they have some type of bacteria (pseudmonas, MSRA, cepacia etc). So yes extra precautions should be taken when you KNOW risks are unquestionably higher for not just the average cold, BUT the bacterias that really kick CFers butts! We cant live in bubbles, but I wouldnt want to knowingly live in a toxic dump either.....Common sense Peopl!

 

[JazzysMom]

I believe we should take precautions in general. Not just for the CFer, but for all of us. Handwashing has been proven to be the #1 preventive measure against colds etc. Obviously when you go to the store or McDonalds you dont know if someone with cepacia has been there, BUT you do know when going to clinic that a CFer has been there & that chances are DAMN good they have some type of bacteria (pseudmonas, MSRA, cepacia etc). So yes extra precautions should be taken when you KNOW risks are unquestionably higher for not just the average cold, BUT the bacterias that really kick CFers butts! We cant live in bubbles, but I wouldnt want to knowingly live in a toxic dump either.....Common sense Peopl!

 

[anonymous]

My point about cepacia is that the CFF has protocol regarding people with cepacia -- that the shouldn't attend CF events. So you may have people participating in the climb for a cure in the stairwell of the IDS center -- breathing heavily, coughing, touching the railing/banister..... Thinking they're relatively safe from that bug and they're not.

New parents of CFers may not realize the risks of exposing their children to other cfers -- cross contamination issue, etc. When your child is diagnosed with CF a lot of info is thrown at you regarding treatments, medications, etc. And a lot of people think they should find a support group for themselves or their child, not realizing the risks. Our local clinic has told us that they feel it is more important that patients have the opportunity to socialize and interact during clinic appointments and think it's safe because they've never had a case of cepacia in their clinic. The pulmonologist basically told me to shut my mouth when I complained about the overcrowding in the waiting room -- I shouldn't be complaining because we send our child to daycare. I'm not willing to risk it with my child. Liza

 

[anonymous]

My point about cepacia is that the CFF has protocol regarding people with cepacia -- that the shouldn't attend CF events. So you may have people participating in the climb for a cure in the stairwell of the IDS center -- breathing heavily, coughing, touching the railing/banister..... Thinking they're relatively safe from that bug and they're not.

New parents of CFers may not realize the risks of exposing their children to other cfers -- cross contamination issue, etc. When your child is diagnosed with CF a lot of info is thrown at you regarding treatments, medications, etc. And a lot of people think they should find a support group for themselves or their child, not realizing the risks. Our local clinic has told us that they feel it is more important that patients have the opportunity to socialize and interact during clinic appointments and think it's safe because they've never had a case of cepacia in their clinic. The pulmonologist basically told me to shut my mouth when I complained about the overcrowding in the waiting room -- I shouldn't be complaining because we send our child to daycare. I'm not willing to risk it with my child. Liza

 

[anonymous]

At our clinic, they put everyone directly into a room when we check in- no waiting area. They bring the pft machines, nurse, social workers etc right to us in the exam room. The only place we have to go to is x-ray. Its kind of isolating, but I guess that's the point. The even installed "no touch" toilets and sinks.

 

[anonymous]

At our clinic, they put everyone directly into a room when we check in- no waiting area. They bring the pft machines, nurse, social workers etc right to us in the exam room. The only place we have to go to is x-ray. Its kind of isolating, but I guess that's the point. The even installed "no touch" toilets and sinks.

 

[anonymous]

CF clinic's are scary for all of us but we cannot go though life scared of everything, or we will just be a nerves wreck!!!!! we all love our children with everything we have and want the best for them, but there is only so much we can do to protect them... i personly do not want my child to be scared of CF and the outside world i want them to be inpowered, that they can live a nomaly healthy life to the best of there ablity,by doing there treatment, taking there meds as the doctor reccomends,personal hygen and common since... if we do to much we will scare our children and make them think the world is a bad place CF IS SOMETHING THEY HAVE;IT IS NOT SOMETHING THAT CONTROLS WHO THEY ARE!!! They need to feel incontrol of there CF !!!

 

[anonymous]

CF clinic's are scary for all of us but we cannot go though life scared of everything, or we will just be a nerves wreck!!!!! we all love our children with everything we have and want the best for them, but there is only so much we can do to protect them... i personly do not want my child to be scared of CF and the outside world i want them to be inpowered, that they can live a nomaly healthy life to the best of there ablity,by doing there treatment, taking there meds as the doctor reccomends,personal hygen and common since... if we do to much we will scare our children and make them think the world is a bad place CF IS SOMETHING THEY HAVE;IT IS NOT SOMETHING THAT CONTROLS WHO THEY ARE!!! They need to feel incontrol of there CF !!!

 

[rcq925]

The point I would like to stress is that a lot of people in the hospital may not know they are contagious or have a bad bug. It takes several days to get culture results back and a person could unknowingly have cultured PA or Cepacia and be out and about, playing with toys in the toyroom ect., not knowing their culture results or you could run into them in the hallway, they cough on you, ect.

I know that I cannot protect my daughter from everything bad in life, CF or not! But because she has CF, I choose to take certain precautions to ensure her safety and health the best that I can because I am her mother and it is my job! When she gets old enough, she will be the one who decides to leave the room or not, to wash her hand, ect. But a hospital can be a very dangerous place for a CF'er to pick up bad bugs, it is that plain and simple. Yes you could unknowingly run into someone on the street, not knowing they have CF, ect. ect. and get a bad bug from them, but the way I look at it is that there is a much higher chance of that happening in the the hospital. My daughter is only 2 and she has been in the hospital 3 times so far and all three times there have been at least 3 other kids with CF in the peds unit, which is a pretty small unit. At this point in time, I want to preserve her health and hope for a cure. I want every extra day I can have with her and if that means she has to stay in her hospital room while there, then so be it. There are worse things. We bring LOTS of toys, movies, crafts, coloring books, ect. We have lots of family that comes to visit and keep her entertained so it's not like she is sitting in the room all by herself and bored out of her mind!

I know that as a parent of a CF'er I have a much different point of view than those of you who acutally have CF and have to endure the hospital stays and treatments. I just wanted to say that I respect everyone's opinoin and that is why I come to this board because I like hearing everyone's point of view, especially those adults with CF who can share their life experiences.

 

[rcq925]

The point I would like to stress is that a lot of people in the hospital may not know they are contagious or have a bad bug. It takes several days to get culture results back and a person could unknowingly have cultured PA or Cepacia and be out and about, playing with toys in the toyroom ect., not knowing their culture results or you could run into them in the hallway, they cough on you, ect.

I know that I cannot protect my daughter from everything bad in life, CF or not! But because she has CF, I choose to take certain precautions to ensure her safety and health the best that I can because I am her mother and it is my job! When she gets old enough, she will be the one who decides to leave the room or not, to wash her hand, ect. But a hospital can be a very dangerous place for a CF'er to pick up bad bugs, it is that plain and simple. Yes you could unknowingly run into someone on the street, not knowing they have CF, ect. ect. and get a bad bug from them, but the way I look at it is that there is a much higher chance of that happening in the the hospital. My daughter is only 2 and she has been in the hospital 3 times so far and all three times there have been at least 3 other kids with CF in the peds unit, which is a pretty small unit. At this point in time, I want to preserve her health and hope for a cure. I want every extra day I can have with her and if that means she has to stay in her hospital room while there, then so be it. There are worse things. We bring LOTS of toys, movies, crafts, coloring books, ect. We have lots of family that comes to visit and keep her entertained so it's not like she is sitting in the room all by herself and bored out of her mind!

I know that as a parent of a CF'er I have a much different point of view than those of you who acutally have CF and have to endure the hospital stays and treatments. I just wanted to say that I respect everyone's opinoin and that is why I come to this board because I like hearing everyone's point of view, especially those adults with CF who can share their life experiences.

 

[anonymous]

I completely think everyone should be under the SAME protocol, no matter what they culture. It is correct that it takes time to culture something- and there is no way to know you are culturing something THE MINUTE you catch it.

Hospitals started off with no protocols, now its all cepacia protocols- but I think this is ridiculous- it should be across the board, not dependent on different situations- making different rules for different bugs.

Besides, I know everyone is afraid of cepacia, but does it ever occur to everyone that cepacia people are just as concerned about catching other things as people without cepacia??? I have cepacia, and I am a HUGE clean freak in the hospitals--- there are still plenty of things I can catch, and I am clean not only to protect others but to protect myself. Everyone should practice these habits, to avoid catching anything, not just cepacia.

I totally understand everyone's fear- but the attitude about cepacia is a little depressing. I mean, no offense but I dont want to be around other sick CF people JUST as much as they dont want to be around me.

Caitlin
22 w/ CF, b. cepacia

 

[anonymous]

I completely think everyone should be under the SAME protocol, no matter what they culture. It is correct that it takes time to culture something- and there is no way to know you are culturing something THE MINUTE you catch it.

Hospitals started off with no protocols, now its all cepacia protocols- but I think this is ridiculous- it should be across the board, not dependent on different situations- making different rules for different bugs.

Besides, I know everyone is afraid of cepacia, but does it ever occur to everyone that cepacia people are just as concerned about catching other things as people without cepacia??? I have cepacia, and I am a HUGE clean freak in the hospitals--- there are still plenty of things I can catch, and I am clean not only to protect others but to protect myself. Everyone should practice these habits, to avoid catching anything, not just cepacia.

I totally understand everyone's fear- but the attitude about cepacia is a little depressing. I mean, no offense but I dont want to be around other sick CF people JUST as much as they dont want to be around me.

Caitlin
22 w/ CF, b. cepacia