Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Hi - I just read somewhere else that people w/ cf should not go around others w/ cf and now again when Angie mentioned that she dont bring her child around others w/cf, why is that? Im new to all this, we go to our 1st clinic on the 31st. we have family that too has cf and now I am wondering why that is? Thanks Kari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Have you considered getting a baby sitter for the 4 month old on the day of the walk? If you want to let everyone see her, you could have some t-shirts or buttons made up with her picture on them to wear while you walk. That way you'd get her image out, but eliminate any risks to her health. At four months old, I doubt if she'll feel left out! Also, you could raise the money and send it in without actually walking (or, at least that is allowed in the Pittsburgh, PA walk, yours may be different.) just some suggestions, ~ > Our family would like to join in on the fundraising walk for CF, but > are concerned about the exposure to B. Cepecia for our 4 month old > daughter with CF. Any suggestions??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 If you are walking in a CFF Great Strides Walk, people who culture B. cepecia are asked not to attend. Also, I don't take my 3 year old anywhere there might be others with cf. He has never cultured anything other than an occasional staff a. and I don't want him exposed to pseudo, b. cepacia or anything else he might catch. I go to the walk each year but leave him with dad or grandma. Angie P. (Ma to JC, 3yo cowboy, wcf) Risk of B. Cepecia > Our family would like to join in on the fundraising walk for CF, but > are concerned about the exposure to B. Cepecia for our 4 month old > daughter with CF. Any suggestions??? > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Our daughter is 4 months old as well and our Dr. advised us to leave her at home and not take her to the fundraisers or any event where there may be others with CF. They are just too little at this point and people have a hard time keeping their hands off little babies! Risk of B. Cepecia > Our family would like to join in on the fundraising walk for CF, but > are concerned about the exposure to B. Cepecia for our 4 month old > daughter with CF. Any suggestions??? > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2003 Report Share Posted March 22, 2003 As a CFF sponsored activity, people are requested not to come if hey culture B Cepacia. But there is no guarantee. Because it is outdoors, I don't worry too much. But it is a personal decision. Funny, the CFF stopped supporting CF Camps and get-togethers, but they still encourage CF'ers to come to the FUNDRAISING events! Seems a little hypocritical. No flames, please. Just a little irritated today. Anyway, with your little one in a stroller, you can just keep moving when people come to peer inside! A " WASH YOUR HANDS " button on the stroller is a good idea, cepacia of not! I hope you do join the walk. It is such a positive event for me. Lenora Mom of , 6, with CF and , 12, no cf >Our family would like to join in on the fundraising walk for CF, but >are concerned about the exposure to B. Cepecia for our 4 month old >daughter with CF. Any suggestions??? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Hi Kari, This is an issue that has often been debated, and will probably continue to be debated until a cure is finally found. There is always a risk when two or more pwcf come in contact with each other, that they will pass on a bug. Sometimes that bug can be fairly benign and easily treated and sometimes it can be really destructive, like in the case of antibiotic-resistent bugs like MRSA, p.a. and b. cepacia. How easily these bugs are passed back and forth between pwcf is not known and studies continue to try to sort it out. In the meantime, clinics have their own rules regarding cross-infection and they vary widely, but are generally based on recommendations from national and world-wide CF organizations like CFF. Parents and pwcf have their own comfort zone, given the recommendations of their doctors and their own values and perceptions. A person wcf can limit his or her exposure to these pathogens by simply avoiding others with cf, though they can't eliminate exposure to them just by doing so. They are, unfortunately, lurking everywhere in our environment. For some of us, and I belong in this camp, the support you get from others wcf who understand what you are dealing with, and can help you deal with the emotions and stress you're bound to feel, far outweighs the slight advantage you may get by avoiding them (if you are indeed getting any advantage - the jury is still out on that). You can take reasonable precautions to avoid passing bugs back and forth, and if you know you are culturing something nasty, you can avoid your cf friends until it is cleared up (and if they are your friends, they'll do the same for you). I can certainly understand those that feel more comfortable simply avoiding others wcf whenever possible. After having been to several cf education conferences, though, I was always struck by the teen panels, and every one of them said that the cf camps they attended and the cf friends they had meant far more to them than any risk they may be courting by being around them. Hope this helps. C Mommy to Mick and Alli, 3 yo twins wcf --- JKDORA@... wrote: > Hi - I just read somewhere else that people w/ cf > should not go around others > w/ cf and now again when Angie mentioned that she > dont bring her child > around others w/cf, why is that? Im new to all this, > we go to our 1st clinic > on the 31st. we have family that too has cf and now > I am wondering why that > is? > Thanks Kari > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2003 Report Share Posted March 24, 2003 Hi, Obviously, I responded to a response to this question without seeing the original question... 4 month olds are probably a little young to be exposing them to anything - let alone B. Cepacia - which actually isn't a really huge risk - since a fairly small percentage of pwcf are actually culturing it in any given cf community. I think it would be best in general though to get a babysitter, just to avoid any kind of germ. Even a common cold can turn into something nasty for a cf infant. When our twins were babies, we kept them home and had t-shirts made with their pictures. Everyone in our group wore them and it was a nice way to show our thanks for their support. hugs, C Mommmy to Mick and Alli, 3 yo twins wcf --- nikaeto wrote: > Our family would like to join in on the fundraising > walk for CF, but > are concerned about the exposure to B. Cepecia for > our 4 month old > daughter with CF. Any suggestions??? > > Quote Link to comment Share on other sites More sharing options...
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