cross contamination

[mom2owen]

I wanted to re-ask this question away from the emotions of the other post. I do not have an opinion about the level of fear, except to say that as a mother, I know the mother-bear feelings of trying, at all costs to protect your child. But I have a different dilemma.
We have a very important person in our life with CF. My son (currently dx with clinical CF,awaiting Ambry test results, etc.) is in weekly, close contact with him. They hug, shake hands and talk to each other each time they are together and I want to know, would people discontinue this?
I did hear from one mom who has a similar situation, and she and I are on the same page. Hand washing, and other precautions are crucial. But so is the relationship we have with our dear friend, so I do not want to keep him out of our lives. He does culture pseudomonas though, while Owen is clear on his culture. And, they have been together for two years.
In the end, we will make the decision with our doctor but for now, I would love opinions since this is really bothering me. I hadn't given this any thought until I read the other post about it and we have not talked about it with our CF doctor though he knows we are friends with his other patient.
Thanks.

 

[mom2owen]

I wanted to re-ask this question away from the emotions of the other post. I do not have an opinion about the level of fear, except to say that as a mother, I know the mother-bear feelings of trying, at all costs to protect your child. But I have a different dilemma.
We have a very important person in our life with CF. My son (currently dx with clinical CF,awaiting Ambry test results, etc.) is in weekly, close contact with him. They hug, shake hands and talk to each other each time they are together and I want to know, would people discontinue this?
I did hear from one mom who has a similar situation, and she and I are on the same page. Hand washing, and other precautions are crucial. But so is the relationship we have with our dear friend, so I do not want to keep him out of our lives. He does culture pseudomonas though, while Owen is clear on his culture. And, they have been together for two years.
In the end, we will make the decision with our doctor but for now, I would love opinions since this is really bothering me. I hadn't given this any thought until I read the other post about it and we have not talked about it with our CF doctor though he knows we are friends with his other patient.
Thanks.

 

[mom2owen]

I wanted to re-ask this question away from the emotions of the other post. I do not have an opinion about the level of fear, except to say that as a mother, I know the mother-bear feelings of trying, at all costs to protect your child. But I have a different dilemma.
<br />We have a very important person in our life with CF. My son (currently dx with clinical CF,awaiting Ambry test results, etc.) is in weekly, close contact with him. They hug, shake hands and talk to each other each time they are together and I want to know, would people discontinue this?
<br />I did hear from one mom who has a similar situation, and she and I are on the same page. Hand washing, and other precautions are crucial. But so is the relationship we have with our dear friend, so I do not want to keep him out of our lives. He does culture pseudomonas though, while Owen is clear on his culture. And, they have been together for two years.
<br />In the end, we will make the decision with our doctor but for now, I would love opinions since this is really bothering me. I hadn't given this any thought until I read the other post about it and we have not talked about it with our CF doctor though he knows we are friends with his other patient.
<br />Thanks.

 

[Ratatosk]

Here are a link to the CFF page regarding germs

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/StoppingTheSpread/Stopping-the-Spread-of-Germs.pdf
">http://www.cff.org/UploadedFil...e-Spread-of-Germs.pdf
</a>
Link to Amy -- no excuses blog regarding cross contamination

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/cross%20contamination
">http://noexcusesnoexcuses.blog...cross%20contamination
</a>
It's my understanding that pseuodomonas can live a very long time on surfaces. They normally say to keep a 3 foot distance, use hand sanitizer...

I'm not surprised that your clinic has mentioned cross contamination. A friend of mine let her 18 month old play in the playroom with other children during a clinic day and nobody said a word to her.

 

[Ratatosk]

Here are a link to the CFF page regarding germs

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/StoppingTheSpread/Stopping-the-Spread-of-Germs.pdf
">http://www.cff.org/UploadedFil...e-Spread-of-Germs.pdf
</a>
Link to Amy -- no excuses blog regarding cross contamination

<a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/cross%20contamination
">http://noexcusesnoexcuses.blog...cross%20contamination
</a>
It's my understanding that pseuodomonas can live a very long time on surfaces. They normally say to keep a 3 foot distance, use hand sanitizer...

I'm not surprised that your clinic has mentioned cross contamination. A friend of mine let her 18 month old play in the playroom with other children during a clinic day and nobody said a word to her.

 

[Ratatosk]

Here are a link to the CFF page regarding germs
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/StoppingTheSpread/Stopping-the-Spread-of-Germs.pdf
">http://www.cff.org/UploadedFil...e-Spread-of-Germs.pdf
</a><br />
<br />Link to Amy -- no excuses blog regarding cross contamination
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://noexcusesnoexcuses.blogspot.com/search/label/cross%20contamination
">http://noexcusesnoexcuses.blog...cross%20contamination
</a><br />
<br />It's my understanding that pseuodomonas can live a very long time on surfaces. They normally say to keep a 3 foot distance, use hand sanitizer...
<br />
<br />I'm not surprised that your clinic has mentioned cross contamination. A friend of mine let her 18 month old play in the playroom with other children during a clinic day and nobody said a word to her.

 

[pipersmom]

Sometimes I think you have to think of emotional health as much as physical. To some extent, I think we all keep our CF kids in a bubble, you could say with different sizes. Piper's bubble was probably a ten foot one when she was first diagnosed, and until she was 3 or so. Once she got really active it got smaller. To each their own, but she played in the dirt, made mud pies, etc as a young child. When she started school, there was another CFer in the same grade. I already knew them somewhat, and agreed on how the school should handle it. When we went to a PTA meeting, and the PTA teacher asked kids to come up to do a demo, neither myself or the other parents jumped up from our chairs screaming when the two kids ended up right next to each other. We kind of gave each other a rueful grin and just enjoyed watching them. At Piper's last 2 hospitalizations, we got to know a teenaged girl with CF, that also has a port, and carries the same bugs that Piper does. Piper thinks it's wonderful and they still text each other now. They weren't in each other's faces, we maintained the 3 feet for the most part, but the day we were leaving they did sneak in a hug.

So I guess to answer your question, I would expect your CF Dr to give you the standard three foot answer, but I think sometimes you have to take other things into consideration as well. Would I let Piper hug him if he was in the middle of an exacerbation? No. But otherwise I don't think I'd change the relationship at all, sometimes other things are just as, if not more important. I did not want Piper growing up thinking of everything she'd missed because I kept her in that ten foot bubble, three feet is fine, and if that three foot one occasionally pops, I don't see it as the end of the world.

 

[pipersmom]

Sometimes I think you have to think of emotional health as much as physical. To some extent, I think we all keep our CF kids in a bubble, you could say with different sizes. Piper's bubble was probably a ten foot one when she was first diagnosed, and until she was 3 or so. Once she got really active it got smaller. To each their own, but she played in the dirt, made mud pies, etc as a young child. When she started school, there was another CFer in the same grade. I already knew them somewhat, and agreed on how the school should handle it. When we went to a PTA meeting, and the PTA teacher asked kids to come up to do a demo, neither myself or the other parents jumped up from our chairs screaming when the two kids ended up right next to each other. We kind of gave each other a rueful grin and just enjoyed watching them. At Piper's last 2 hospitalizations, we got to know a teenaged girl with CF, that also has a port, and carries the same bugs that Piper does. Piper thinks it's wonderful and they still text each other now. They weren't in each other's faces, we maintained the 3 feet for the most part, but the day we were leaving they did sneak in a hug.

So I guess to answer your question, I would expect your CF Dr to give you the standard three foot answer, but I think sometimes you have to take other things into consideration as well. Would I let Piper hug him if he was in the middle of an exacerbation? No. But otherwise I don't think I'd change the relationship at all, sometimes other things are just as, if not more important. I did not want Piper growing up thinking of everything she'd missed because I kept her in that ten foot bubble, three feet is fine, and if that three foot one occasionally pops, I don't see it as the end of the world.

 

[pipersmom]

Sometimes I think you have to think of emotional health as much as physical. To some extent, I think we all keep our CF kids in a bubble, you could say with different sizes. Piper's bubble was probably a ten foot one when she was first diagnosed, and until she was 3 or so. Once she got really active it got smaller. To each their own, but she played in the dirt, made mud pies, etc as a young child. When she started school, there was another CFer in the same grade. I already knew them somewhat, and agreed on how the school should handle it. When we went to a PTA meeting, and the PTA teacher asked kids to come up to do a demo, neither myself or the other parents jumped up from our chairs screaming when the two kids ended up right next to each other. We kind of gave each other a rueful grin and just enjoyed watching them. At Piper's last 2 hospitalizations, we got to know a teenaged girl with CF, that also has a port, and carries the same bugs that Piper does. Piper thinks it's wonderful and they still text each other now. They weren't in each other's faces, we maintained the 3 feet for the most part, but the day we were leaving they did sneak in a hug.
<br />
<br />So I guess to answer your question, I would expect your CF Dr to give you the standard three foot answer, but I think sometimes you have to take other things into consideration as well. Would I let Piper hug him if he was in the middle of an exacerbation? No. But otherwise I don't think I'd change the relationship at all, sometimes other things are just as, if not more important. I did not want Piper growing up thinking of everything she'd missed because I kept her in that ten foot bubble, three feet is fine, and if that three foot one occasionally pops, I don't see it as the end of the world.

 

[mag6125]

Very well said Amanda! I think a lot of times some of is older patients get a little defensive when we read about parents keeping their younger kids more isolated, not just from other cfers but in general buts it's only because most of us grew up before so much was known about contamination and procautions and we lived as normal kids. I know for me that was the best thing my parents did for me and I always say what's the point of doing everything you can to live longer if you're not getting to live a normal as possible life. That said I do have a couple friends with cf and we'll get together for dinner but for the most part we maintain the 3 ft rule, use hand sanitizer, and don't share appetizers from the same plate/basket. I do think it's important to know and have relationships with other cf patients because sometimes you need someone to talk/complain to who really understands. So I dont see the situation as a big deal as long as neither is sick and maybe just use hand sanitizer around each other.

 

[mag6125]

Very well said Amanda! I think a lot of times some of is older patients get a little defensive when we read about parents keeping their younger kids more isolated, not just from other cfers but in general buts it's only because most of us grew up before so much was known about contamination and procautions and we lived as normal kids. I know for me that was the best thing my parents did for me and I always say what's the point of doing everything you can to live longer if you're not getting to live a normal as possible life. That said I do have a couple friends with cf and we'll get together for dinner but for the most part we maintain the 3 ft rule, use hand sanitizer, and don't share appetizers from the same plate/basket. I do think it's important to know and have relationships with other cf patients because sometimes you need someone to talk/complain to who really understands. So I dont see the situation as a big deal as long as neither is sick and maybe just use hand sanitizer around each other.

 

[mag6125]

Very well said Amanda! I think a lot of times some of is older patients get a little defensive when we read about parents keeping their younger kids more isolated, not just from other cfers but in general buts it's only because most of us grew up before so much was known about contamination and procautions and we lived as normal kids. I know for me that was the best thing my parents did for me and I always say what's the point of doing everything you can to live longer if you're not getting to live a normal as possible life. That said I do have a couple friends with cf and we'll get together for dinner but for the most part we maintain the 3 ft rule, use hand sanitizer, and don't share appetizers from the same plate/basket. I do think it's important to know and have relationships with other cf patients because sometimes you need someone to talk/complain to who really understands. So I dont see the situation as a big deal as long as neither is sick and maybe just use hand sanitizer around each other.

 

[mom2owen]

Yes, well said. Thanks so much for the replies! I didn't want to sound reckless or careless in the other thread but our friend is so important to us, and our outlook on our new diagnosis that I could not bare the thought of losing our connection. I agree that there is a balance and I will certainly be vigilant with precautions but to remove him from our weekly routine would have such a negative impact on our mental health that I think we will not panic, but be very careful. Ironically, even before Owen's first CF clinic visit, we all knew not to get together if either of them had issues, I think our friend knew CF was the situation before we did.
Anyway, thanks so much for the replies, and not just because you told me what I wanted to hear <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2owen]

Yes, well said. Thanks so much for the replies! I didn't want to sound reckless or careless in the other thread but our friend is so important to us, and our outlook on our new diagnosis that I could not bare the thought of losing our connection. I agree that there is a balance and I will certainly be vigilant with precautions but to remove him from our weekly routine would have such a negative impact on our mental health that I think we will not panic, but be very careful. Ironically, even before Owen's first CF clinic visit, we all knew not to get together if either of them had issues, I think our friend knew CF was the situation before we did.
Anyway, thanks so much for the replies, and not just because you told me what I wanted to hear <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2owen]

Yes, well said. Thanks so much for the replies! I didn't want to sound reckless or careless in the other thread but our friend is so important to us, and our outlook on our new diagnosis that I could not bare the thought of losing our connection. I agree that there is a balance and I will certainly be vigilant with precautions but to remove him from our weekly routine would have such a negative impact on our mental health that I think we will not panic, but be very careful. Ironically, even before Owen's first CF clinic visit, we all knew not to get together if either of them had issues, I think our friend knew CF was the situation before we did.
<br />Anyway, thanks so much for the replies, and not just because you told me what I wanted to hear <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Mommafirst]

Well, whatever you decide you'll have to do some sole searching, because really there aren't any clear answers. I think its smart to talk to your center can come up with a solution you can live with.

I don't know what I'll do as Alyssa gets older. For now, she is a pretty normal little girl who has friends and is very active. But I don't encourage he spending time with the other CFers I know. I have a dear friend who is an adult CF patient, and sadly she has never met Alyssa. Maybe someday it will be okay to have playdate out in the park or somewhere else, but we'll have to see over time.

 

[Mommafirst]

Well, whatever you decide you'll have to do some sole searching, because really there aren't any clear answers. I think its smart to talk to your center can come up with a solution you can live with.

I don't know what I'll do as Alyssa gets older. For now, she is a pretty normal little girl who has friends and is very active. But I don't encourage he spending time with the other CFers I know. I have a dear friend who is an adult CF patient, and sadly she has never met Alyssa. Maybe someday it will be okay to have playdate out in the park or somewhere else, but we'll have to see over time.

 

[Mommafirst]

Well, whatever you decide you'll have to do some sole searching, because really there aren't any clear answers. I think its smart to talk to your center can come up with a solution you can live with.
<br />
<br />I don't know what I'll do as Alyssa gets older. For now, she is a pretty normal little girl who has friends and is very active. But I don't encourage he spending time with the other CFers I know. I have a dear friend who is an adult CF patient, and sadly she has never met Alyssa. Maybe someday it will be okay to have playdate out in the park or somewhere else, but we'll have to see over time.
<br />
<br />

 

[mamaScarlett]

I also understand the mother bear feelings being a mom myself, but sit on both sides of the fence since I have Cf, and also have bcepacia and have strong feelings about cross contamination and protection.
But I feel theres more to it than bacteria, and living looking at everything like its a petri dish. <img src="i/expressions/face-icon-small-smile.gif" border="0"> (which I will admit is a struggle for me at times bc my health is so important to me)
Feelings and emotions are as important to Cf care as is doing your chest pt.
I have a cousin with Cf. She comes from a broken family background and has been through alot for her young years, even regardless of her Cf which has been pretty rough itself. Every few years we have a huge family picnic (100 people) and we invite her and her family every time. We've had very open discussions about what we both culture, and she knows what is expected of her and vice versa. We have a separate relative put aside sealed plates, forks, napkins for her each year and go to lengths to make her protected. Its always an outdoor event, so staying more than 3 ft away is never a problem.
I have a bathroom I use thats away from everyone else and everyone quietly does their part to help protect the situation.
But its a delicate situation bc she should feel welcome to our home, which she is, and neither her nor I should feel like walking bacteria. Its possible to make it work as long as both sides know whats expected of them.
And the benefits are that I get to see her grow up, and she gets to be with her family, and gets to know me which is big-an older Cfer, working hard, raising a family, having success despite Cf...Its important for her to feel like there's something for her to work for, for the future.
My point is there has to be a balance.

 

[mamaScarlett]

I also understand the mother bear feelings being a mom myself, but sit on both sides of the fence since I have Cf, and also have bcepacia and have strong feelings about cross contamination and protection.
But I feel theres more to it than bacteria, and living looking at everything like its a petri dish. <img src="i/expressions/face-icon-small-smile.gif" border="0"> (which I will admit is a struggle for me at times bc my health is so important to me)
Feelings and emotions are as important to Cf care as is doing your chest pt.
I have a cousin with Cf. She comes from a broken family background and has been through alot for her young years, even regardless of her Cf which has been pretty rough itself. Every few years we have a huge family picnic (100 people) and we invite her and her family every time. We've had very open discussions about what we both culture, and she knows what is expected of her and vice versa. We have a separate relative put aside sealed plates, forks, napkins for her each year and go to lengths to make her protected. Its always an outdoor event, so staying more than 3 ft away is never a problem.
I have a bathroom I use thats away from everyone else and everyone quietly does their part to help protect the situation.
But its a delicate situation bc she should feel welcome to our home, which she is, and neither her nor I should feel like walking bacteria. Its possible to make it work as long as both sides know whats expected of them.
And the benefits are that I get to see her grow up, and she gets to be with her family, and gets to know me which is big-an older Cfer, working hard, raising a family, having success despite Cf...Its important for her to feel like there's something for her to work for, for the future.
My point is there has to be a balance.