Additional risk of CF kids playing with other CF kids?

[harvey]

Please pardon the sensitive question but we're new to the CF scene
and are learning all we can as fast as we can.  I'd heard that
certain bacteria are worse for CF patients than others...and that
if one CF patient happens to be fighting this bacteria...that its
transmission to another CF kid might be something to be
particularly cautious of.  What are your thoughts on
this?<br>
<br>
Thanks, again.  Your informed insights have been wonderfully
reassuring.<br>
<br>
Harvey

 

[Scarlett81]

Hi Harvey,

This is a topic that can be kinda controversial. Some people feel that the association with other cfers is vital to a child-despite the risk.
There are several germs that can be serious that you've heard of. The one that is the most serious is called b. cepacia. It can aggrivate your lung inflammation and make you resistant to drugs that you need.

When I was around 12 I caught cepacia. Back then, they told you that it would kill you within a few years. Now, that is typically not true. But, it has happened absolutely. I've had it for 12 years or so and I'm doing great. BUT- having cepacia means there are less antibiotics that will work for me. So unless they come out with new drugs for the lungs, techincally in the future I'm sunk.

In my opinion its a balance. There can be a little too much hype about it. But, I also see some people view it way to nonchalantly. Cepacia has made my life much more difficult at times. Longer infections, worse infections, less drugs to use. I've used Tobramycin so much I have hearing loss.

Speaking with experience, since I have one of these bad bugs-If I were a parent to a kid with cf I'd never let them hang out. Email, talk on the phone, write letters, ect if the kid needs association with other cfers.

On a side note, I don't think its healthy sometimes either if a kid has their cf friends and their other friends. Be normal, be a kid. If you need that connection to cope as a teen or adult, then go ahead.

 

[NoExcuses]

The Cystic Fibrosis Foundation recommends keeping all CFers seperate. If they must be in the same room, the 3 feet rule should be abided by.

Christian is right - cepacia is a risk.

Another risk is PA - with increased exposure to antibiotics and no new antibiotics in the pipeline, there is an increased risk of patients sharing resistant organisms.

The bottomline is that CFers shouldn't be near eachother. Especially as children.

 

[Momtana]

I have met a couple of families in our community whose children have CF. When they get together (often after clinic visits 2+ hours away) they plan outdoor activities for the kids.

 

[EnergyGal]

I say you can see one another but keep your hands to yourselves. I think that would be very difficult if there are children playing. If I had a child with CF they would not be allowed to play together. When they got older it would be their choice but at least they would be wise enough to decide for themselves.

As a child I always wondered why the doctors would put a cf patient in a hopsital room together. That never made sense to me but I rolled with the punches.

Germs are germs and what is the difference if it is cepacia or MRSA? Germs are contagious. If you have two patients with the same organism one can be sensitive to one antibiotic and other resistant. there are so many similar situations. You cannot run and hide but you do not have to sniff around and look for trouble.

 

[JennifersHope]

Hi,

Yes without a doubt their is a risk for cross contamination. It would be really hard in a small child to teach them the proper hygiene that they would need to not share germs...


I think it is different as an adult or for an older teen who can really be careful about cross contamination.

 

[Ratatosk]

We don't allow DS to play with other cfers. Our local CF clinic has a community waiting room, complete with toys with the option of a private room on clinic days. I believe we're the only family who opts for the private room. Apparently they at the clinic feel interaction is much more important as a number of families come from small towns and don't have the opportunity to visit with other cfer families. When we questioned their policy, they said, they've never had a case of cepacia at their clinic. I do know of a couple individuals in town who do or did have it. They may not go to the CF clinic, but they still see the same doctors. We are still concerned with MRSA, Staph, PA, etc, -- plus, cultures are done during clinic days, so what's to say someone comes in with a nasty bug, sits in waiting room and afterwards they discover this person has cepacia or something else.

 

[Cheryl]

RE: Daycare, doctor's offices, etc., would face masks and hand
cleanser take care of most bugs or would this just look weird and
little kids wouldn't do it anyway?<br>
<br>
Cheryl

 

[dmarsing]

My son was diagnosed w/cf at 8 mos. He is now 12 and his cf clinic has just implemented a new policy. Cfers must wear a mask in the waiting room and you must bring hand sanitizer with you ( they supply both there). Also, they schedule so that no 2 cfers are in the same waiting room at the same time. And only 1 cfer per day is allowed in each treatment room.

 

[dmarsing]

My son was diagnosed w/cf at 8 mos. He is now 12 and his cf clinic has just implemented a new policy. Cfers must wear a mask in the waiting room and you must bring hand sanitizer with you ( they supply both there). Also, they schedule so that no 2 cfers are in the same waiting room at the same time. And only 1 cfer per day is allowed in each treatment room.

 

[dmarsing]

My son was diagnosed w/cf at 8 mos. He is now 12 and his cf clinic has just implemented a new policy. Cfers must wear a mask in the waiting room and you must bring hand sanitizer with you ( they supply both there). Also, they schedule so that no 2 cfers are in the same waiting room at the same time. And only 1 cfer per day is allowed in each treatment room.

 

[MCGrad2006]

At my clinic they immediatyly put me in a room ( i do NOT have cepacia, but do have MRSA and PA). They do this with all patients and if for some reason they cant, they give you a beeper (in a plastic bag) and send you off somewhere. Speaking as a patient with CF, I do agree that the CF contact is important for an individual...but there are ways to avoid germs and such. Like Jennifershope said:

<div class="FTQUOTE"><begin quote>I think it is different as an adult or for an older teen who can really be careful about cross contamination. </end quote></div>

As a kid, they always had me in the hosp. doing treatment with other CFers and there wasnt so much paranoia about germs. Things have changed since then though. I cant say when or where I came up with PA (b/c I dont remember)...but it very well could have been that exposure back when I was in my early teens. I always knew of other CFers around my area but was never in real contact with them. I would hear of them every once in a while and/or talk to them...but never in very close contact. Since Ive gotten older, I know what to be careful of and if I did want to see this ppl what precautions I would have to take.

Since I didnt have much contact with CFers as a kid, I wasnt able to see the importance in learning from others and finding comfort in others. Now that I come on this website, I am able to how great it is to talk to others who are going through similar obstacles.

 

[MCGrad2006]

At my clinic they immediatyly put me in a room ( i do NOT have cepacia, but do have MRSA and PA). They do this with all patients and if for some reason they cant, they give you a beeper (in a plastic bag) and send you off somewhere. Speaking as a patient with CF, I do agree that the CF contact is important for an individual...but there are ways to avoid germs and such. Like Jennifershope said:

<div class="FTQUOTE"><begin quote>I think it is different as an adult or for an older teen who can really be careful about cross contamination. </end quote></div>

As a kid, they always had me in the hosp. doing treatment with other CFers and there wasnt so much paranoia about germs. Things have changed since then though. I cant say when or where I came up with PA (b/c I dont remember)...but it very well could have been that exposure back when I was in my early teens. I always knew of other CFers around my area but was never in real contact with them. I would hear of them every once in a while and/or talk to them...but never in very close contact. Since Ive gotten older, I know what to be careful of and if I did want to see this ppl what precautions I would have to take.

Since I didnt have much contact with CFers as a kid, I wasnt able to see the importance in learning from others and finding comfort in others. Now that I come on this website, I am able to how great it is to talk to others who are going through similar obstacles.

 

[MCGrad2006]

At my clinic they immediatyly put me in a room ( i do NOT have cepacia, but do have MRSA and PA). They do this with all patients and if for some reason they cant, they give you a beeper (in a plastic bag) and send you off somewhere. Speaking as a patient with CF, I do agree that the CF contact is important for an individual...but there are ways to avoid germs and such. Like Jennifershope said:

<div class="FTQUOTE"><begin quote>I think it is different as an adult or for an older teen who can really be careful about cross contamination. </end quote></div>

As a kid, they always had me in the hosp. doing treatment with other CFers and there wasnt so much paranoia about germs. Things have changed since then though. I cant say when or where I came up with PA (b/c I dont remember)...but it very well could have been that exposure back when I was in my early teens. I always knew of other CFers around my area but was never in real contact with them. I would hear of them every once in a while and/or talk to them...but never in very close contact. Since Ive gotten older, I know what to be careful of and if I did want to see this ppl what precautions I would have to take.

Since I didnt have much contact with CFers as a kid, I wasnt able to see the importance in learning from others and finding comfort in others. Now that I come on this website, I am able to how great it is to talk to others who are going through similar obstacles.

 

[eli]

Hey All,

Liza mentioned clinic visits, which i was i was thinking of posting a separate topic for.

I have alos been told by Olivia's doc's about cfer's being around cfer's and the risks inovloved.
But what happens when we go to clinic? We are all in the waiting room together, we all sit next to eachother (we don't have private rooms) as Liza mentioned, and the children are running around playing with all the toy's, blocks and ride on cars supplied by the hospital.

So what i can't understand is, our doc's warn us about this but then again how do we avoid other families whent they come in the waiting room and sit with you and all the kids are running around and playing. Kids are kids, they come up to and say hello and want to have a chat with Olivia. WHAT DO YOU SAY, go away we don't want to chat with you.

What i'm trying to say is, it just makes it very difficult when you are all in tha same room. Its very hard to avoid being less then 1 metre apart from, actually its not possible.

What are we supposed to do?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[eli]

Hey All,

Liza mentioned clinic visits, which i was i was thinking of posting a separate topic for.

I have alos been told by Olivia's doc's about cfer's being around cfer's and the risks inovloved.
But what happens when we go to clinic? We are all in the waiting room together, we all sit next to eachother (we don't have private rooms) as Liza mentioned, and the children are running around playing with all the toy's, blocks and ride on cars supplied by the hospital.

So what i can't understand is, our doc's warn us about this but then again how do we avoid other families whent they come in the waiting room and sit with you and all the kids are running around and playing. Kids are kids, they come up to and say hello and want to have a chat with Olivia. WHAT DO YOU SAY, go away we don't want to chat with you.

What i'm trying to say is, it just makes it very difficult when you are all in tha same room. Its very hard to avoid being less then 1 metre apart from, actually its not possible.

What are we supposed to do?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[eli]

Hey All,

Liza mentioned clinic visits, which i was i was thinking of posting a separate topic for.

I have alos been told by Olivia's doc's about cfer's being around cfer's and the risks inovloved.
But what happens when we go to clinic? We are all in the waiting room together, we all sit next to eachother (we don't have private rooms) as Liza mentioned, and the children are running around playing with all the toy's, blocks and ride on cars supplied by the hospital.

So what i can't understand is, our doc's warn us about this but then again how do we avoid other families whent they come in the waiting room and sit with you and all the kids are running around and playing. Kids are kids, they come up to and say hello and want to have a chat with Olivia. WHAT DO YOU SAY, go away we don't want to chat with you.

What i'm trying to say is, it just makes it very difficult when you are all in tha same room. Its very hard to avoid being less then 1 metre apart from, actually its not possible.

What are we supposed to do?<img src="i/expressions/face-icon-small-confused.gif" border="0">

 

[Ratatosk]

We actually stopped going to our CF clinic and go see one or two of the doctors at the peds clinic. At our last visit I got into an argument with the nurse about playing musical rooms. She wanted us to trade rooms with another CFer. A teenager with a productive cough. They weren't going to clean the room, just wanted us to switch. I refused to switch and we threatened to leave.

And I'm not so sure how well they clean the rooms on a regular basis. They have other clinics on other days for different illnesses -- our room smelled like b.o. and the kiddy table in the waiting room was covered with a dried, sticky pink substance that looked as if it'd been there awhile.

 

[Ratatosk]

We actually stopped going to our CF clinic and go see one or two of the doctors at the peds clinic. At our last visit I got into an argument with the nurse about playing musical rooms. She wanted us to trade rooms with another CFer. A teenager with a productive cough. They weren't going to clean the room, just wanted us to switch. I refused to switch and we threatened to leave.

And I'm not so sure how well they clean the rooms on a regular basis. They have other clinics on other days for different illnesses -- our room smelled like b.o. and the kiddy table in the waiting room was covered with a dried, sticky pink substance that looked as if it'd been there awhile.

 

[Ratatosk]

We actually stopped going to our CF clinic and go see one or two of the doctors at the peds clinic. At our last visit I got into an argument with the nurse about playing musical rooms. She wanted us to trade rooms with another CFer. A teenager with a productive cough. They weren't going to clean the room, just wanted us to switch. I refused to switch and we threatened to leave.

And I'm not so sure how well they clean the rooms on a regular basis. They have other clinics on other days for different illnesses -- our room smelled like b.o. and the kiddy table in the waiting room was covered with a dried, sticky pink substance that looked as if it'd been there awhile.