toothbrushes?

allie1

New member
I'm still new to CF(my daughter was diagnosed 5 months ago) and I've been reading the recent posts about Pseudomonas. If I understand right, it is more likely to grow in moist things. Wouldn't toothbrushes be a risk? What does everyone do about their toothbrushes? Do you clean or soak them every day or do you replace them frequently? Any advice? Thanks.

Amy
 

anonymous

New member
My hubbie was diagnosed with CF at 18 months and he is 24 now. He says that he has never heard anything about cleaning toothbrushes daily and while that might be a reasonable question, it probably falls under the category of "overprotecting the CF child". He can't seem to stress enough that the more one tries to "overprotect" and "shelter" their CF child, the harder REAL LIFE is going to be for them. He lived without all the fancy smanchy stuff for years-his single mm just could not afford it. He kept his lungs clean by doing sports, basketball, soccer, baseball, running. Believe it or not, he said that was the best way to clean his lungs out. Every once in a while the activity would promote a "coughing attack". But that is a double edged sword because as much energy as it takes and how much it hurts, it also naturally gets the mucous out of the lungs. therefore reducing the infection risk. I'ts understandable that you want to protect your daughter, but honestly it will make life much more difficult later on.
Julie
 

NoDayButToday

New member
Iagree that some people go to far in trying to protect their CF children, but I don't think this is a case of that. Toothbrushes are really gross when you think about them- they sit a few feet awayt from the toilet (which spews particles onto them every time they are flushed), and damp places are a breeding ground for bacteria. I replace my toothbrush probably every two months or so, and also always after a round of antibiotics/ IVs. This isn't just something I do on my own; doctors in the past have told me it's a good idea.
 

anonymous

New member
Pseudomonous is impossible to avoid. It's in the water, soil..everywhere. This does not mean that you daughter will culture it, or that it will always be there. Changing your toothbrush is a good idea every two months or so (CF or not) and after you've been sick.
Debbie
23 w/ CF
 

anonymous

New member
coll, the toilet factor is a little far out there-not everyone has their toilet and sink in the same room. I do agree with him, and the post after him that changing it once every two months or so is a good idea.
 

NoDayButToday

New member
I wouldn't say the toilet concept is far out there- studies have shown that toilet water get spawned up to ten feet away from the toilet when it is flushed. Obvioulsy if your toilet and sink aren't in the same room (although I alway thought most bathrooms were laid out in that way) , this wouldn't apply- bacteria can't make it through walls. And yes, unfortunately pseudomonas is everywhere, avoiding it forever is impossible, but replacing toothbrushes is a good idea. Oh, and for future reference I'm a she, not a he. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I'd agree with Coll -- leaving toothbrushes near a toilet risks contamination with gram-negative bacteria, such as Pseudomonas or Serratia, which are particularly problematic for people with CF. We try to make sure that toilets are always covered when they are flushed. We also keep the tootbrushes for our son, who has CF, in the kitchen -- but not near the sink, since kitchen sinks have been shown to be more germ-laden than almost any other place in the house. Jordan has several working toothbrushes, which are cleaned with soap and boiled water after each use, then allowed to dry. Our CF doctor, who confirmed that tootbrushes can be a source of infection, recently took a swab from one of Jordan's brushes for a culture, which came back clean.

Jordan's mom
 

anonymous

New member
Jordan's mom, what about when your child moves out? What if they don't want to boil their toothbrushes and go out of their way for things like that. I just see so many problems in the future for children of parents who over protect them. My husband was 19 before he cultured pseudomonas, and he never did anything rediculious like boil his toothbrushes or have special air conditioners or air purifiers like all the parents are doing now. He was a regular old kid aside from his diagnosis at 18 months. You are honestly just setting your child up to fail. What about when they go to a dorm, although CF is a disease, schools are NOT required to accomodate everything related to CF and as I have posted many times before-then you child will be once sick person. I am not writing this to be rude, but I just want parents to take a look at what they are setting their kids up for. You can't keep them in a bubble forevery, so why ever put them in a bubble? You are just going to end up with more complications in the long run when their bodies are suddenly exposed to things all at once that their mom and dad were always protecting them from.

Julie
 

oliver68

New member
Hi.
That's for our experience., we have raised the same question and here's our we proceed for our CF girl :

After every use, we shake it strongly, we wipe it with a clean towel, and let it dry upright, the brush on the top. I would say it remains "wet" around 1 hour max.
once a week we put it in a mouth-cleaning solution (non-alcoholic formula as she's still young). The brush is changed every 6 weeks.

The brush remains in the bathroom.
 

anonymous

New member
Hello. This is Jordan (son of "Jordan's Mom," above). I am 16, and though I do occasionally resent some of the measures taken to protect my health (what do you expect?<img src="i/expressions/face-icon-small-happy.gif" border="0">), I disagree with the idea that these measures are "setting me up for failure." Though I am all too aware that many of the precautions my parents take and have taken throughout my life may not be feasible in college, I believe that my family should continue to be as careful as possible in regards to germs, bacteria, fungi, standing water, etc, so that I enter college in as good health as possible. Furthermore, it seems to me that if I can figure out how to deal with a pretty intensive treatment regimin now (including washing toothbrushes daily), I will have good preparation for college, and might not skimp back as much as others who have not had such preparation.
I would also like to take issue with the idea that my parents are "damaging" or "overprotecting" me. True, I have never been on an airplane, or been able to go on water-rides, or visit water parks. And I use very clean toothbrushes. However, along with all these "unnecessary" complications, I have one of the best CF track-records my docters have ever seen. I run cross country, and can run 3.1 miles in roughly 21 minutes. I mountain-bike in very steep canyons. I play tennis. And I have not seen the insides of a hospital (except for the occasions on which I was visiting someone else) in over 11 years (knock-wood). So - you decide. Is sterilizing tootbrushes that high of a price to pay for a higher quality of life?

P.S. - It might interest someone to know that my mom had to change the way she cleaned toothbrushes last summer (she had been dousing them in vinegar, which turns out to be an innefective disinfectant). At that point, I came up with some interesting methods for cleaning toothbrushes myself (forget cleaning; I wanted them even more sterile than she did):
1. Soak Toothbrushes in alcohol for twenty minutes. Results: Some toothbrushes disintegrated.
2. Boil Toothbrushes in distilled water for ten minutes at medium heat. Results: Toothbrushes melted.
3. Douse Toothbrushes in alcohol and light on fire. Results: ???

Jordan (who has not been too badly damaged yet)
 

Emily65Roses

New member
I 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.

This is not pointed at anyone specific. I myself wouldn't go so far as to clean my toothbrush every day, but to each his own. Basically, I'm just supporting Julie's point, because I do agree with it. There are certain things about sterilizing and cleaning everything that may screw you later. They may not too, but it's possible. I grew up around other kids, around germs, all sorts of pets, with no spectacular measures taken to clean anything, and I have a pretty good immune system. There are good and bad points to both, but the idea is just that, if you clean too much now, your immune system may not have any "practice" in fighting stuff off. When you're in the presence of new bacteria, your body is going to stand there with a blank expression saying "Huh?? What the hell do I do here??" It's always good to have the practice. And there's a difference between trying to avoid pseudomonas and pneumonia and things that are a big problem.... vs. colds and dirt and just general "germs" that don't really hurt anything.
 

anonymous

New member
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
 

NoDayButToday

New member
Coll is short for Colleen, though hardly anyone calls me by my full name. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

allie1

New member
I'm the original poster and I want to thank you for all of your suggestions. I am learning as I go <img src="i/expressions/face-icon-small-smile.gif" border="0">

Julie, I don't understand why you think wanting our children to have clean toothbrushes is "overprotecting the CF child." All I wanted was some suggestions for cleaning my daughter's toothbrush....I don't need a lecture about keeping my child in a bubble. I have no intention of doing that.......she will grow up just as any of her friends will. Making sure her toothbrush is clean is a simple thing for me to do and she won't even know I'm doing it.
 

anonymous

New member
Julie, not to offend you in any way, but I just wanted to remind you that the severity of this disease is different for everyone. It's great that your husband has been relatively healthy but not everyone is as lucky. Taking a few extra precautions never hurt anyone. I would think that what Oliver suggested would be sufficient. I know a lot of orthodontists recommend soaking retainers and other dental appliances in mouthwash. As far as the toothbrush thing, Coll is absolutely right, there are a lot of studies which do prove that when flushed, the toilet sprays for up to 10 ft. We have a large bathroom but even so, 10 ft is a long way!
 

anonymous

New member
Julie, Julie, Julie. That's great your husband is doing so well. However, I don't think it's possible to be overprotective. Weather it's avoiding someone with a cough at work, washing your hands often, using a hand sanitizer, cleaning your toothbrush, etc..., these simple things can protect you from catching something. I'm 30 and am extremely careful of these things. You have to be.
 

anonymous

New member
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>
 

jenhum

New member
Well I have to say I am feeling quite guilty about my own toothbrush right now, b/c it is next to my toilet and I've had it for at least 5-6 months. And needless to say, I have never cleaned it. I always thought you switched toothbrushes when you go to the dentist twice a year? oops....

I think there are some precautions that are great and very important to take (even though I'm not great about following them...hence the 2nd cold in the last 3 weeks!!!) Washing hands, not hanging around people that are sick and coughing, and absolutely avoiding any kind of smoke.

I think there has to be a balance though. Too much germ-free and you will not have a strong immune system. My parents are tyrants about me doing my treatments and physical therapy, but other than that I've lead a very normal life! When I was young I went to daycare and pre-school with sick snotty nosed kids (<img src="i/expressions/face-icon-small-tongue.gif" border="0">), and I've flown on planes and played in water parks all my life! (I'm not trying to pick on you Jordan, you just mentioned those so I thought of them!).

And you know what? I may have gotten sick a few more times b/c of those things. And who knows, I might be a little healthier today if I had been super cautious...but I might not be!!! I get sick everytime I go on vacation..it just wears my body out. But I've seen Paris and New York and Washington DC and I wouldn't trade those experiences for ANYTHING- not even better health.

Obviously I am not saying that sanitizing toothbrushes will lead to a boring life...lol! <img src="i/expressions/face-icon-small-happy.gif" border="0"> Heck, it might be a good idea even if I never do it. I'm just asking parents to consider the quality of life that we DO have. I am SO GRATEFUL to my parents, b/c either out of ignorance or great intelligence (I suspect the latter), they haven't sheltered me and in turn I've had a fantastic life. When I'm on my deathbed, I'm not going to remember those extra bouts of IV's. I'm going to remember the vacations and the waterparks and all the times I spent having FUN.

Please don't think I'm saying to live recklessly- you couldn't pay me to go into a smoky club or bar...but there are two aspects to life- Quantity and Quality. You have to find a balance that works for you I suppose. Alright, that's enough from me. I apologize for getting so far away from the toothbrush subject! And kudos to those who made it to the end of this monster post. Thank you and goodnight <img src="i/expressions/face-icon-small-wink.gif" border="0">.
 

jenhum

New member
ps- Amy I just realized that I haven't e-mailed you back. So sorry!!! I'm headed to bed now but I'll write you tomorrow. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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