toothbrushes?

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Jordan, this is Julie and I posted the previous subject about the toothbrush and over protecting... I understand what you and your mom are saying, but my husband is 24 with CF and he NEVER did any special regimine other than medications when needed, he has ONLY been in the hospital to do STUDIES, he had a remarkable childhood with CF and was a posterchild for 6 years, he was never sick, he played soccer until he was 21 years old and has not had many complications until the recent 1.5 years. And thats just because it's what comes with the territory as you get older. i guess my point is though although it's nice that your family goes out of their way to do all this stuff to protect you and keep family members with germs away and such...are you going to avoid friends in college, how are you ever going to have a job. You can't tell a coworker to go home because he has a cough, and you certainly can't go home every time a co worke gets sick or you will never have a job. That is real life. And it's going to be a brutal wake up call to you if your parents try to protect you from everything. That's all I am trying to say. I don't think they are bad for doing it, it is natural to care about your children, especially when their health is such a big deal-but the reality of the fact is that such overprotection doesn't benefit anyone in the end.



Julie<hr></blockquote>

Julie,

I'm happy your boyfriend is enjoying a relatively mild form of CF so far! And I agree with you that not overprotecting your CF child is a good goal.

However, you seem to attribute your boyfriend NOT culturing pseudomonas until his later teen years SOLELY to the fact that no special measures were taken to avoid him being around germs. I think it's a quite a bit more complicated than that.

There are probably many factors which determine the age at which one first culttures pseudomonas - some of which we have some control over and many which we do not. (For instance, my daughter was NOT overprotected with regard to germs - yet she still cultured pseudomonas by age 6). Some other factors include the degree of lung damage incurred before diagnosis, allergies, pancreatic sufficiency, a modifying gene which may impact severity, etc. etc. Basically, doctors still don't know what combination of factors impacts CF severity.

Also, I think it takes some parents of newly diagnosed several years to relax and realize their child is not going to get real sick every time they're exposed to germs...but sometimes we have to give them the time to realize this!

Hope everyone has a good week!





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Emily65Roses

New member
I just wanted to say ditto to pretty much everything Jenny said. I may have gotten sicker from some vacations (Barceclona, woo!), and some extra activities I've done, concerts I've gone to, etc... But I wouldn't trade any of it.
 

anonymous

New member
Anonymous, I agree with you about the psud. culuturing. It is in the water, the air and fairly unavoidable in life. and everyones different severity of cf also makes a difference. But the point I was trying to make when I was writing up that whole "big picture" is that children who are not "overprotected" do very well in life. And it is very important that cfers are not "overprotected" because their body will go into shock when they are suddenly exposed if they have been sheltered from it for a long time. when people come to this site they ask for opinions and examples, what did you do and what would you do' s on this site. I don't think it is inappropriate to share our specific story, what worked for us and what didn't. It may not work for someone on this site and a few people may disagree, but another person might read it an agree or consider something they have never thought about before.

I don't attribute my husband not culturing psud. soley on the fact that he took no special measures, I was just trying to make a note of the fact that someone who did no special measures didn't culture it until later in life, juts to attest to the fact that maybe such special measures are sometimes unnecessary and that people seem to do fine without them . There are many reasons behind why he didn't culture it until later.

and I am sypmathetic for the parents, just because I am not a parent of a cfer doesn't discredit the fact that I still struggle with some of the same feelings and emotions that the parents have. I have a loved one, my soul mate, with CF. I understand they want to protect their children and I know i would feel the same way, and I too know that it takes time to cope and relax and that it is not going to immendiately sit well with them, actually it never sits well with anyone. But how is anyone ever going to learn, get other opinions (doctors aren't always right you know) and such if nobody shares personal situations or stories with them. It doesn't mean I am right, this is just what worked for my husband and might be beneficial to someone else. That is all.

And it's my husband that has CF, he hasn't been my boyfriend in 3 years.

Julie
 

anonymous

New member
I don't think that parents can be too over protecting of their kids it shows that they care and they only want to do the best things for them my BF has CF and it is sad cause his parents don't even acknowledge his CF which frustrates me a lot cause my BF finds it really hard to talk about his CF and is very embarrassed about coughing etc etc and this is due to his parents not being concerned with him when he was younger due to this he has never really learnt about CF I have even told him things about it which he didn't know.
 

anonymous

New member
Not being concerned/not acknowledging someone's CF, and being "overprotective" are two very different things. the topic that is being strssed here is that when kids are sheltered because they have CF, it can be more damaging to their immune system in the long run. Especially for someone who has a mild to moderate case of CF and is expected to live into adulthood. They can't not be sheltered in their own home forever, and schools and jobs WONT accomodate every special need, so it becomes a shock on the body when a person is suddenly exposed like if they never go to preeschool or have much interactio with other children on a constant basis, and then they start kindergarde. It has been proven statistically that those who are "sheltered" (in this case didn't attend preeschool or interact on a constant basis) were sicker throughout the year than a child with similar problems (as CF effects everyone differently) who had similar health up until the start of kindergarden. the child who attended preeschool and was around other kids on a constant basis still had the common CF exaserbations, but not to the extend as the "sheltered" child.

I am sorry that your boyfriends parents make it so difficult on him, but you seem like a wonderful person to be there for him and if he doesn't have anything else, at least he has you.

Julie
 

anonymous

New member
I think it's outragous that each time someone has an opinion or a comment about what worked for someone else we are constantly defending each other. To me life is a learning expieriance if we don't have people to ask questions and make comments to we don't have anything. That would mean we would have to trust every dr that crosses our path and we all know that's no good. When I read Julie's post I didn't feel she was attributing the fact her husband didn't get pseudonomas just because he was't overprotected. I beleive everyone reads too much into peoples words. I felt more like she was commenting as this maybe a factor in it but not solely. You don't have to have CF to feel empathy for someone with it. Loosen up people. Eva
 

anonymous

New member
Hey, people come on this site for information, advice, to hear what worked for some people, and not everyone is going agree with everything-it's just food for though basically...if you personally have a problem with that don't post and don't read them. There is no need for synical comments like you made.

Julie
 

Jo

New member
FIGHT FIGHT FIGHT!!!! just kidding!! people get very tense on this site. chill people.. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Here's my two cents:

I brush my "dogs" teeth three to four times weekly with a special enzyme toothpaste from the pet store. Once every two weeks I place my dogs toothbrush in a paper cup filled with hydrogen peroxide to help disinfect.

Nothing wrong with good hygiene.
 

anonymous

New member
her dog doesn't have CF though. LOL, a little humor never hurt anything or anyone I guess <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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