WWYD

[BarbaraW]

DD takes gymnastics. She has a favorite teacher, who does not teach her class, but does have her on occassion. I mentioned something in passing a few weeks ago, about DD and DS having CF. She told me the next week that she did as well. DD REALLY, REALLY, REALLY wants to take private lessons from her. She adores her. Her teacheris very healthy - healthier than DD. I actually think it is good for DD to have her to look up to.DD has been struggling a lot at school with kids teasing her b/c of her enzymes, and is being a pill about all things CF related.
How bad would it be to do private lessons? DD's greatest wish is to make the team, and they would then be spending a lot more time together. I will not take her out of gymnastics - her LFTs have improved so much since she started, and there is no other form of physical activity that she enjoys as much as gymnastics. Her additude has also improved 1000 times over, after learning that he teacher also has CF.
Her pulm. kind of did not give me an answer one way or the other when I called him. His gut response was that as long as neither one has cultured anything, it would probably be ok, as long as we were careful.
Any advice?

 

[BarbaraW]

DD takes gymnastics. She has a favorite teacher, who does not teach her class, but does have her on occassion. I mentioned something in passing a few weeks ago, about DD and DS having CF. She told me the next week that she did as well. DD REALLY, REALLY, REALLY wants to take private lessons from her. She adores her. Her teacheris very healthy - healthier than DD. I actually think it is good for DD to have her to look up to.DD has been struggling a lot at school with kids teasing her b/c of her enzymes, and is being a pill about all things CF related.
How bad would it be to do private lessons? DD's greatest wish is to make the team, and they would then be spending a lot more time together. I will not take her out of gymnastics - her LFTs have improved so much since she started, and there is no other form of physical activity that she enjoys as much as gymnastics. Her additude has also improved 1000 times over, after learning that he teacher also has CF.
Her pulm. kind of did not give me an answer one way or the other when I called him. His gut response was that as long as neither one has cultured anything, it would probably be ok, as long as we were careful.
Any advice?

 

[Mommafirst]

That's a really tough one. 20 years ago it would have been seen as a very fortunate twist of fate and be great for all involved. But with all they know aobut cross contamination, even if its largely safe (I know families that have two kids with CF that never culture the same things) it does mean you will always be worried and if your dd cultures something new, you'll always wonder if it was due to this relationship.

I don't think there is a good answer here. You'll have to figure out what works best for you and your family and what you can live with in terms of the consequences.

 

[Mommafirst]

That's a really tough one. 20 years ago it would have been seen as a very fortunate twist of fate and be great for all involved. But with all they know aobut cross contamination, even if its largely safe (I know families that have two kids with CF that never culture the same things) it does mean you will always be worried and if your dd cultures something new, you'll always wonder if it was due to this relationship.

I don't think there is a good answer here. You'll have to figure out what works best for you and your family and what you can live with in terms of the consequences.

 

[Anomie]

Can the teacher wear a mask during these private sessions. Its sounds like your daughter really loves this teacher and they could probably be a real inspiration to her that people with CF can succeed. Hope you figure out a way to make it work!

 

[Anomie]

Can the teacher wear a mask during these private sessions. Its sounds like your daughter really loves this teacher and they could probably be a real inspiration to her that people with CF can succeed. Hope you figure out a way to make it work!

 

[Incomudrox]

As long as they aren't culturing anything it's fine.
If they are culturing something, as long as its the same thing, it's fine.

Use common sense, wash hands, shower when she comes home. The changes of your DD getting something from the mats they use is probably higher than getting something from this teacher. To be a gymnastics teacher she is obviously in great health. It's not practical to use masks. Also how much touching is involved anyways? most of it is demonstration I know they do make contact some times but hand washing should take care of that part. Most of the demonstrations will probably be more than 3ft apart. I think its fine, but who am I?

 

[Incomudrox]

As long as they aren't culturing anything it's fine.
If they are culturing something, as long as its the same thing, it's fine.

Use common sense, wash hands, shower when she comes home. The changes of your DD getting something from the mats they use is probably higher than getting something from this teacher. To be a gymnastics teacher she is obviously in great health. It's not practical to use masks. Also how much touching is involved anyways? most of it is demonstration I know they do make contact some times but hand washing should take care of that part. Most of the demonstrations will probably be more than 3ft apart. I think its fine, but who am I?

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> As long as they aren't culturing anything it's fine. If they are culturing something, as long as its the same thing, it's fine. </end quote>

I actually disagree. Let's say you both culture pan-sensitive PA. You can still catch PA from each other - nearly every strain is differet and can set up shop in a different part of the lungs.

I think it's crazy to expose your kid to extra bacteria when you can avoid it, especially from a CFer. Coughing can always spread germs, even if you're 3 feet away. Particles fall on the ground, it touches the other CFer yadi yadi. PA can stay alive on surfaces for over a week.

Your daughter can get role modeling in other ways - you will feel guilty for the rest of your life if she picks up something from this other CFer.

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> As long as they aren't culturing anything it's fine. If they are culturing something, as long as its the same thing, it's fine. </end quote>

I actually disagree. Let's say you both culture pan-sensitive PA. You can still catch PA from each other - nearly every strain is differet and can set up shop in a different part of the lungs.

I think it's crazy to expose your kid to extra bacteria when you can avoid it, especially from a CFer. Coughing can always spread germs, even if you're 3 feet away. Particles fall on the ground, it touches the other CFer yadi yadi. PA can stay alive on surfaces for over a week.

Your daughter can get role modeling in other ways - you will feel guilty for the rest of your life if she picks up something from this other CFer.

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> As long as they aren't culturing anything it's fine. If they are culturing something, as long as its the same thing, it's fine. </end quote> I actually disagree. Let's say you both culture pan-sensitive PA. You can still catch PA from each other - nearly every strain is differet and can set up shop in a different part of the lungs. I think it's crazy to expose your kid to extra bacteria when you can avoid it, especially from a CFer. Coughing can always spread germs, even if you're 3 feet away. Particles fall on the ground, it touches the other CFer yadi yadi. PA can stay alive on surfaces for over a week. Your daughter can get role modeling in other ways - you will feel guilty for the rest of your life if she picks up something from this other CFer.</end quote>

I knew someone would call me out on this. Haha. While the genes on the PA are different, if they were both mucoid etc, both had the same sensitvities etc, idk how bad it really would be? If they culture nothing at all I can hardly see the harm. Nothing would be quantified by 5+ clean cultures for me. While PA that grows up inside of a CFer can be slightly different than that which grows up in the enviorment they're quite similar. If we are going to live in a bubble we sholdn't take showers either, as everytime you take a shower you are dosing yourself in PA, EVERYTIME. I don't know the whole back story on the teacher or DD, but if they don't cough either of them and take precautions such has hand sanitizer etc. If we lived in a perfect world I would agree but it's not a perfect world YOLO.

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> <div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Incomudrox</b></i> As long as they aren't culturing anything it's fine. If they are culturing something, as long as its the same thing, it's fine. </end quote> I actually disagree. Let's say you both culture pan-sensitive PA. You can still catch PA from each other - nearly every strain is differet and can set up shop in a different part of the lungs. I think it's crazy to expose your kid to extra bacteria when you can avoid it, especially from a CFer. Coughing can always spread germs, even if you're 3 feet away. Particles fall on the ground, it touches the other CFer yadi yadi. PA can stay alive on surfaces for over a week. Your daughter can get role modeling in other ways - you will feel guilty for the rest of your life if she picks up something from this other CFer.</end quote>

I knew someone would call me out on this. Haha. While the genes on the PA are different, if they were both mucoid etc, both had the same sensitvities etc, idk how bad it really would be? If they culture nothing at all I can hardly see the harm. Nothing would be quantified by 5+ clean cultures for me. While PA that grows up inside of a CFer can be slightly different than that which grows up in the enviorment they're quite similar. If we are going to live in a bubble we sholdn't take showers either, as everytime you take a shower you are dosing yourself in PA, EVERYTIME. I don't know the whole back story on the teacher or DD, but if they don't cough either of them and take precautions such has hand sanitizer etc. If we lived in a perfect world I would agree but it's not a perfect world YOLO.

 

[saveferris2009]

I agree about the shower - I consider the shower a necessity that can't be avoided.

I consider an hobby with another CFer less of a necessity. Very different activities and not apples to apples in my mind.

This isn't a bubble - it's about making smart choices. A bubble would be no gymnastics at all. Or no school at all.

If you both have mucoid PA with the same sensitivites, the point is that the PA can take up shop in a NEW part of the lungs. Or a different lobe. A PA in the right middle lobe doesn't know about its brand new colleague in the upper left lobe - and they could each mutate differently and become sensitive to different abx.

What if the right middle lobe has substantial damage, so it's tough to access when doing TOBI every other month. So some TOBI gets to the right middle lobe, but not adequately due to damage, so the PA mutations and becomes resistant to TOBI. The upper left lobe is exposed to TOBI and doesn't become resistant - TOBI manages to kill lots of the PA but of course not all, because the patient is colonized.

PFTs go down, and it is decided that the patient needs IV abx. Of course TOBI won't be used because one PA strain is now resistant, so we use ceftaz. Ceftaz helps to kill the resistant PA in the right middle lobe, helping with exacerbation. But remember the few bacteria left in the left upper lobe that TOBI didn't kill (because even if PA is sensitive to a drug, it doesn't kill ALL PA because the patient is colonized) - well guess what? Those few little PA's left that didn't get killed by TOBI are resistant to ceftaz. So they have a party.

This story could go on and on, and it goes. Which is why we all have different resistance patters to our various PA strains.

Why would you put yourself in a situation where you could get another PA strain? Showering is hygiene. Gymnastics - well, it's optional.

 

[saveferris2009]

I agree about the shower - I consider the shower a necessity that can't be avoided.

I consider an hobby with another CFer less of a necessity. Very different activities and not apples to apples in my mind.

This isn't a bubble - it's about making smart choices. A bubble would be no gymnastics at all. Or no school at all.

If you both have mucoid PA with the same sensitivites, the point is that the PA can take up shop in a NEW part of the lungs. Or a different lobe. A PA in the right middle lobe doesn't know about its brand new colleague in the upper left lobe - and they could each mutate differently and become sensitive to different abx.

What if the right middle lobe has substantial damage, so it's tough to access when doing TOBI every other month. So some TOBI gets to the right middle lobe, but not adequately due to damage, so the PA mutations and becomes resistant to TOBI. The upper left lobe is exposed to TOBI and doesn't become resistant - TOBI manages to kill lots of the PA but of course not all, because the patient is colonized.

PFTs go down, and it is decided that the patient needs IV abx. Of course TOBI won't be used because one PA strain is now resistant, so we use ceftaz. Ceftaz helps to kill the resistant PA in the right middle lobe, helping with exacerbation. But remember the few bacteria left in the left upper lobe that TOBI didn't kill (because even if PA is sensitive to a drug, it doesn't kill ALL PA because the patient is colonized) - well guess what? Those few little PA's left that didn't get killed by TOBI are resistant to ceftaz. So they have a party.

This story could go on and on, and it goes. Which is why we all have different resistance patters to our various PA strains.

Why would you put yourself in a situation where you could get another PA strain? Showering is hygiene. Gymnastics - well, it's optional.

 

[Havoc]

Yeah I have to agree, PA is ubiquitous you don't need another CFer involved at all to expose yourself to it. Personally, I would ask the teacher if she cultures anything. If the answer isn't something like B cepacia, Achromobacter, really resistant mucoid PA or MRSA then I would say go for it. BTW wearing a mask is totally doable. When I was in gymnastics they had this really old heater which spewed black crap everywhere. I wore a mask in gymnastics all winter when it was in use. Furthermore, I mostly credit my good health and really high PFT's to gymnastics.

I don't know what her skill level is, so I don't know how much spotting she will be receiving. It's a judgement call for sure, but in my experience the exercise is worth the elevated risk of exposure (so long as it's nothing really nasty as I mentioned before).

 

[Havoc]

Yeah I have to agree, PA is ubiquitous you don't need another CFer involved at all to expose yourself to it. Personally, I would ask the teacher if she cultures anything. If the answer isn't something like B cepacia, Achromobacter, really resistant mucoid PA or MRSA then I would say go for it. BTW wearing a mask is totally doable. When I was in gymnastics they had this really old heater which spewed black crap everywhere. I wore a mask in gymnastics all winter when it was in use. Furthermore, I mostly credit my good health and really high PFT's to gymnastics.

I don't know what her skill level is, so I don't know how much spotting she will be receiving. It's a judgement call for sure, but in my experience the exercise is worth the elevated risk of exposure (so long as it's nothing really nasty as I mentioned before).

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> I agree about the shower - I consider the shower a necessity that can't be avoided. I consider an hobby with another CFer less of a necessity. Very different activities and not apples to apples in my mind. This isn't a bubble - it's about making smart choices. A bubble would be no gymnastics at all. Or no school at all. If you both have mucoid PA with the same sensitivites, the point is that the PA can take up shop in a NEW part of the lungs. Or a different lobe. A PA in the right middle lobe doesn't know about its brand new colleague in the upper left lobe - and they could each mutate differently and become sensitive to different abx. What if the right middle lobe has substantial damage, so it's tough to access when doing TOBI every other month. So some TOBI gets to the right middle lobe, but not adequately due to damage, so the PA mutations and becomes resistant to TOBI. The upper left lobe is exposed to TOBI and doesn't become resistant - TOBI manages to kill lots of the PA but of course not all, because the patient is colonized. PFTs go down, and it is decided that the patient needs IV abx. Of course TOBI won't be used because one PA strain is now resistant, so we use ceftaz. Ceftaz helps to kill the resistant PA in the right middle lobe, helping with exacerbation. But remember the few bacteria left in the left upper lobe that TOBI didn't kill (because even if PA is sensitive to a drug, it doesn't kill ALL PA because the patient is colonized) - well guess what? Those few little PA's left that didn't get killed by TOBI are resistant to ceftaz. So they have a party. This story could go on and on, and it goes. Which is why we all have different resistance patters to our various PA strains. Why would you put yourself in a situation where you could get another PA strain? Showering is hygiene. Gymnastics - well, it's optional.</end quote>

Yeah, you're right I was blowing it a little bit out of porportion. Basically what you're saying is if the bacteria are physical too far apart they can't effectively use quorum sensing? I think that's what you're saying. Maybe there is an answer for the OP such as, maybe the teacher would be willing to get Skype or something of the like, and they could have cameras setup at home to show eachother what they've been wokring on. I think for DD it's a matter of knowing someone who has CF AND is interested in something she likes. There can be a balance and I think technology (video feeds) can be of help while keeping bacteria risk at a low. In any event this can go on and on as you said. I think for the OP the answer is in technology and her daughter just having knowing someone OLDER with common interests that is of the same sex and able to help her cope.

 

[Incomudrox]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i> I agree about the shower - I consider the shower a necessity that can't be avoided. I consider an hobby with another CFer less of a necessity. Very different activities and not apples to apples in my mind. This isn't a bubble - it's about making smart choices. A bubble would be no gymnastics at all. Or no school at all. If you both have mucoid PA with the same sensitivites, the point is that the PA can take up shop in a NEW part of the lungs. Or a different lobe. A PA in the right middle lobe doesn't know about its brand new colleague in the upper left lobe - and they could each mutate differently and become sensitive to different abx. What if the right middle lobe has substantial damage, so it's tough to access when doing TOBI every other month. So some TOBI gets to the right middle lobe, but not adequately due to damage, so the PA mutations and becomes resistant to TOBI. The upper left lobe is exposed to TOBI and doesn't become resistant - TOBI manages to kill lots of the PA but of course not all, because the patient is colonized. PFTs go down, and it is decided that the patient needs IV abx. Of course TOBI won't be used because one PA strain is now resistant, so we use ceftaz. Ceftaz helps to kill the resistant PA in the right middle lobe, helping with exacerbation. But remember the few bacteria left in the left upper lobe that TOBI didn't kill (because even if PA is sensitive to a drug, it doesn't kill ALL PA because the patient is colonized) - well guess what? Those few little PA's left that didn't get killed by TOBI are resistant to ceftaz. So they have a party. This story could go on and on, and it goes. Which is why we all have different resistance patters to our various PA strains. Why would you put yourself in a situation where you could get another PA strain? Showering is hygiene. Gymnastics - well, it's optional.</end quote>

Yeah, you're right I was blowing it a little bit out of porportion. Basically what you're saying is if the bacteria are physical too far apart they can't effectively use quorum sensing? I think that's what you're saying. Maybe there is an answer for the OP such as, maybe the teacher would be willing to get Skype or something of the like, and they could have cameras setup at home to show eachother what they've been wokring on. I think for DD it's a matter of knowing someone who has CF AND is interested in something she likes. There can be a balance and I think technology (video feeds) can be of help while keeping bacteria risk at a low. In any event this can go on and on as you said. I think for the OP the answer is in technology and her daughter just having knowing someone OLDER with common interests that is of the same sex and able to help her cope.

 

[imported_Momto2]

I would have a chat with the coach, make sure she is aware of the issues. You both need to have constant communication about any illness on either DD's or the coaches. Cancellation policies sholdnt apply here, and if the coach is ill, another coach should be found to stand in. I think a mask is impractical. Lots of handwashing too, since a coach often has contact with the gymnast.

 

[imported_Momto2]

I would have a chat with the coach, make sure she is aware of the issues. You both need to have constant communication about any illness on either DD's or the coaches. Cancellation policies sholdnt apply here, and if the coach is ill, another coach should be found to stand in. I think a mask is impractical. Lots of handwashing too, since a coach often has contact with the gymnast.