To the initial poster, please read what emily posted because that is the point that I am trying to get across. I know the severity of CF effects everyone differently and there are many different strands of the gene.
What emily stated there is true, and has been statistically proven. If your body is protected from exposure for a very long time, and then suddenly exposed (like a CF child who doesn't go to preeschool and has very little interaction with other kids and then jumps right into kindergarden, or a CF child whos parents have an air purifier, they disinfect everything, the school has an air system put in the classroom and then the child goes to college or gets a job where those things are not accomodated-and they don't have to be) it has been statistically proven that they are sicker by far, than a CF child who has had very similar CF issues at the same age as the "unexposed child" but has been exposed at a young age to the common cold and whatever else is out there. That's the only point I am trying to get across. Not that you are bad or whatever else for doing it. Like I said earlier I UNDERSTAND and would probably feel compelled to do the same thing if I were in your shoes, but in the long run it can be more damaging to their health so I would definetly take that into consideration first.
and of course, there are different severities of CF. and I can completely understand such a regimine (boling toothburushes, disinfecting, air purifier) in a very severe case of CF, but if the child is completely functional aside from some of the common CF effects, I wouldn't recommend protecting them too much.
Mom of Allie, anytime you come on this site and ask for the opinion of others-you should expect to get all sorts of answers and coming from different angles. And unless someone is outright rude to you, which I don't believe I was, or is using profanity or saying anything inappropriate, it's kind of rude of you to tell them you don't want their opinion. don't post a question if you don't want to hear all the angles. You don't have to do anything you don't feel comfortable doing, nobody is forcing you, just offering suggestions and opinions. I was not trying to lecture you, but only to share insight as to what has worked for us and many other CFers that my husband and I have had the privilege of coming in contact with. Also, insight from doctors who have taken care of CFers as children and choosen to follow them into adulthood. correct me if I am wrong, but your CF doctor is probably a pediatric CF doctor and does not take care of many, if any adults with CF (like I said, please correct me if I am wrong). My husband transitioned 3 years ago from a pedi to adult doctor and some things are very different in what we hear from them and what we here from the pedi doctors. Some of the adult CF doctors have followed CFers from childhood to adulthood and seen what seems to work, doesn't work, is necessary in certain circumstances and what isn't necessary but is done because it makes the parents feel more secure/comfortable. all I am trying to share with you is one way of looking at things and in no means is a definite. To each his own.
Julie
<blockquote>Quote<br><hr> think Julie's main point was not that you won't be able to keep up with these regimens and what have you... I believe (and correct me if I'm wrong here), that her point was simply if you clean too much and disinfect to an extensive degree, when you get out to where things are dirtier, your body won't know how to fight anything off. You can keep your house as clean as you like, but many places are not at all clean. You can avoid some of these places, I'm sure, but unless you intend to live in a bubble, you'll enter dirty places at somepoint. You need to build an immune system. And if you're constantly surrounded by such sterile and clean environments, you won't be able to do so. So that when you do get out there, you could very well be screwed. <hr></blockquote>
