CFers playing together?

[anonymous]

Ok, I know this has been discussed before on the forum, so I apologize ahead of time. My daughter Avery is 2 1/2 and has CF. Against all odds there is a little girl accross the streeet who has CF and is 3 or 4 yrs old. Avery adores this little girl. There are many children in our neighborhood and all the parents get along so well. Occasionally the families go outside when all the kids are playing in the street. Our neighborhood is a dream of a neighborhood. Avery does play with her CFer friend, sometimes with the same toys as well as rides in her little motorized Jeep. Am I crazy for letting this happen? It breaks my heart to think I can't let the two girls play with eachother. The other childs parents don't really say much about it. We have discussed the subject with them and they are at a loss just as we are on what to do. I know that they can pass bad things to eachother, but it just feels wrong not let them play. I know many people are going to think I am crazy, and that is ok. I just need to hear others viewpoints on this subject to help me decide what I should do. Its tough trying to explain to Avery that she can't play with her, we have tried. Avery doesn't even really know that she has CF yet, I am not sure when we will start trying to explain it to her...that is a whole other discussion.
Thanks,
Lynsey -mom to Avery 2 1/2 yrs w/CF and Rhett 1 yr. no CF

 

[anonymous]

I'm terrified to let DS play or be around any CFers. Especially hearing about how all the older kids used to hang out in each other's rooms or go to CF camps and how a lot of them have cepacia. I'd rather be safe than sorry.

 

[anonymous]

I would be nervous letting Reece play w/ another Cfer! I know at this age she doesnt understand, but in the long run its best for both of them. When they get older they can talk on the phone.....no its not the same as face to face playing but again it will keep them from any yucky bugs being passed. I even get nervous taking Reece to clinic....they make him go wait by the restrooms now becuz of MRSA but he still is a few feet away when other CFers pass in the hallway.
Leah~mommy 2 Reece 3yrs old w/ CF<img src="i/expressions/angel_ani.gif" border="0">

 

[thelizardqueen]

As a child I attended CF camps and did on the occasion play with other CFer's. In the long run those CF patients did get Cepacia, I however didn't. I guess its just a matter of being very careful.

 

[anonymous]

wow, that is really against all odds huh? I was really suprised (and disappointed) to find out that there is a girl w/cf in our little town that will be 2 grades below my daughter wcf in school but your situation is really suprising. Anyway, I don't have much advice other than if they are going to play together that you keep an eye on them to make sure they aren't putting things in their mouths and such and more importantly I would make an agreement of some sort with the other parents to keep eachother informed of bacterias/sickness, etc and try to come up with a plan for what will happen in the future if someone is culturing something bc it wouldn't be fair for the one with the bacteria to be expected to always stay away from the kids when the other CFer is around or vice-versa (does that make sense?). I know of several siblings (online and in real life) that have CF and it seems that with some somewhat minor precautions problems can be avoided.

 

[Emily65Roses]

Just to have the example, I'm like Liz. I was a CF poster child, and was ALWAYS around them. We had parties, fund raisers, everything. You name it, I was there with many other CFers. I don't have cepacia. And I had MRSA once, but I got it from working in a retirement home, not from other CFers. Do what you like (though if the kids really like each other, my opinion is, let them play sometimes, just be reasonably careful). But keep in mind that not all "old" CFers who used to play with others are now cepacia-ridden and dying. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I never used to get nervous about going to CF events 'cuz I figured anyone with any bad bugs would stay away. DD goes to the CF walk, but it's outside and she pretty much stayed with her cousins, people she knew. But last year I read a post on another site about a fundraiser in a major city -- took place in a skyscraper where people walked up the stairs to raise money for CF and a this person had cepacia and took part in this event. Scared the heck out of me.

 

[anonymous]

That is a hard call. It does sound like an awkward situation in that you don't want to insult your neighbor nor do you want to keep your sweet children inside. I am nervous each time my kids play with their cousin who also has cf. He is eight. I know it is a different situation and Sophia and Jack are his only cousins. Sophia and my nephew spent Saturday afternoon together at a train exhibit and they held hands most of the time. I know they shouldn't have, I just didn't have the heart to tell them it was wrong. As far as your neighbor, I would let them play outside together since that is the best place to be. But use some caution and try not to have them share the same toys if at all possible. You also might want to sit the mom down and share your concerns. Not all cf parents really understand the consequences.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Our local CF clinic (non-accredited) still doesn't believe in keeping CFers apart. They just started offering the option of having patients either wait in the community waiting room or be assigned their own rooms. I guess they felt it was more important for those who live in isolated areas to be able in interact/socialize with other people. And if we hadn't also attended an accredited CF clinic where the patients are isolated, we wouldn't know any better either. It could be that your neighbor doesn't understand the cross contamination issue.

 

[melleemac]

This is a hard one. I have identicle twins with cf, so they have always had each other to play with, cant exactly keep them apart. How ever their health has never really been considered good, so I will protect them by keeping them away from other cfers. At one time there was another little boy at their school in the year below them, at recess they were not permitted to play with each other. His mother and I both talked about it and both decided it was for the best. They have a couple of friends who they are sometimes in hospital at the same time with, but they are not allowed closer than 12 feet to each other and thats wearing masks and gloves. They are not allowed in the playroom at the same time either, everything needs to be wiped down when one leaves and the other enters. My boys are lucky in the aspect that when they are admitted they can share a room, where as other cfers do not.
Mel

 

[anonymous]

My CF daughters are 12 and 9. When they were first diagnosed, we were in a wonderful support group that had parties and events for all of the CF families. Now, however, things have changed the Foundation does not advise Cfers to be together. However, during that initial time, we met some wonderful friends and have remained friendly with them. The girls play together outside only ((in the pool)). Although, I wouldnt advise spending time together in the house.

I also know three adult CFers. They grew up together and would plan their hospital stays together. They would even share the same room. They never passed things to one another.

What are the odds of a Cfer across the street -- probably alot more than having CF. But, you have to live...they were put there for a reason. Maybe, to support one another!!!! Whatever is meant to be will be....Live and Enjoy -- thats the main thing!!

 

[LuvMy2Girls]

My daughter hasn't been diagnosed with cf. But I've been researching, so please forgive me for being ignorant. But why can't kids with cf play with each other? Do they have more germs than a kid without cf?

 

[Emily65Roses]

CFers really get most of their trouble from the bacteria we grow. There's one called pseudomonas that's everywhere around you. You probably have some on or near you (they love wet places: showers, pools, hot tubs). But because your lungs work, it's not a problem. Because CF lungs are so crappy, the bacteria is a big problem. Since our lungs are so wet, it's very easy to get these bacteria. Most of the spreading of bacteria comes from one CFer to another, not from healthy people. So they don't like us to be near each other because it's generally a higher risk of getting new bacteria.