Hi there,I am wondering what other parents might recommend or consider risks that they keep their children away from?In particular risk from Pseudomonas etc.My son is on TOBI currently and is have another culture to see if it is gone in a few days.However I feel like a nervous wreck, I am paranoid that he is going to pick up something or put something in his mouth that will cause him to get them again.He is 1 so everything ends up in his mouth at the moment.Today I discovered that he had gone into the bathroom and was playing with a bottle that was sitting in the shower which he had also just stuck in his mouth as I was walking in!Am I overreacting?I don't want him to get them again for as along as I can possibly help it, but realize that I cannot wrap him up in a ball and stop him from doing things either.Help, my anxiety is getting to me!RebekahMother to Matt 12mths w/CF<img src="i/expressions/face-icon-small-frown.gif" border="0">
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Wisdom from parents please!
- Thread starter anonymous
- Start date
Hi RebekahI can't emphasize enough on how not to overprotect cf children or any children for that matter.I tried to "wrap my child in cotton wool" when he was growing up, not knowingly of course, but none the less, I did overtprotect him when I look back. So many times people would try to tell me but I just would not listen and would just think to myself "they have no idea". It may not make any difference just yet, but believe me, in later years you will have done more harm than good. You will have a child being told "you can't do this, can't do that "....... into an adult that say's "I can't do this, can't do that" and believe me, there is nothing worse than having an adult thinking this way constantly. Trust me, take it from someone that has been there, done that. Sandy
Rebekah,Hi, I am 37 w/ CF and I can tell you that my parents never really caudled me as a child. They did do the obvious things such as keep me out of smoky environments, not let me go to the dirt track races w/ a neighbor friend, etc, but didn't hold me back from sports, playing w/ toys at the Dr, etc. Maybe they didn't know any better too?My suggestion to you is probably what you're already doing. Wash your little guys hands alot. Carry antibacterial wipes & make sure to use them while/after being at the Dr's office especially if he's played w/ the toys there, after playing at any type of playground, after sitting in a shopping cart, etc.Also, ask your Dr the risks. I think I had a milder case of CF when I was little, so maybe wasn't as susceptible as others. I hope this has helped!<img src="i/expressions/face-icon-small-smile.gif" border="0">
Many years ago, when a CF child was diagnosed with pseudomonas, that was the "beginning of the end"...not so anymore. There are so many good drugs now to fight the infection that it's not so frightening. Learn all you can about psuedomonas and where it can grow. Those poofie things people have in their showers...pseudomonas LOVES them. Replace them often or throw them in the washer often.
I can totally empathize with your feelings! May daughter is 3 now and I am almost neurotic about hand washings what she touches etc. I think this just comes with the territory. You are doing a great job with your son and it will get easier and he grows older. I still tell Lauren not to touch things even though it may produce a little fear or may stifle her but it really is for her own good and health.Do they know where he may have picked the psuedomonas from? I constantly use the hand sanitizing stuff all day long and carries tons of bottles of it with us. She knows the routine now. Easier said than done, try to relax a little. I still find this hard to do but just try!<img src="i/expressions/face-icon-small-smile.gif" border="0">
RebekahI guess I emphasized quite a bit in my last message about overprotecting but I certainly didn't mean that you forget the obvious such as avoiding contact with others that are sick, smokey areas etc. I just wanted to point out that it is almost next to impossible to keep your child away from everything that you think is bad for him/her and by trying to do so will cause problems eventually.Sandy
Really the only thing you can do is teach your child to wash their hands, and not share food with kids with colds...basic hygene stuff. In reality, it's good for CFers to catch little bugs so our immune systems have a better chance at handeling the big ones. I can't speak for anyone else, but I've cultured pseudomonous off and on since I was ten and I live a totally normal life...I just finished college.Debbie23 w/ CF
AbsintheSorrow
New member
<b>Rock on Debbie!!!</b> I've cultured pseudomonas for years also. And though I haven't graduated... I just finished my freshman year at college on the Dean's List. <img src="i/expressions/face-icon-small-happy.gif" border="0">PS-- I'm just adding this moon because I really want to know what it looks like. Hehe. <img src="i/expressions/moon.gif" border="0">
Hey Rebekah,don't flip out if your son still cultures psuedomonas or gets it back. My daughter cultured it from the time she was diagnosed at 9 months until this past October when she turned 5. She hasn't had it since, but if she gets it back, there are a lot of good meds out there for it. since you know where all things picked up at theis stage in his life end up, maybe the best thing to do at home is to make sure that the stuff he can get to is clean. We kept a gate up at the bathroom door to keep Rachel away from the wet stuff that usually harbors the worst bacteria. But everyone is right, don't go too far overboard. Good luck!Andrea
Thanks to everyone who replied to me.You are absolutely right, I am going to do my best to keep him away from obvious risks but I cannot prevent him from doing "normal" activities it just wouldn't be fair.I have taken Andrea's advice and purchased a gate for the bathroom and that will keep him away from the bottom of the shower in future!I am pretty sure that is where he got pseudomonas from in the beginning.So thanks for all the advice and I will try to stop worrying!Rebekah Mother to Matt 12mths W/cf<img src="i/expressions/face-icon-small-happy.gif" border="0">
Rebekah, You seem to be doing a great job with your son, my son has tested positive for Pseudomonas off and on since he was about 9 months old, he is on Tobi and his last 3 cultures were negative. I had asked his Drs. about the seriousness of the Pseudo and they said it was a serious finding awhile ago but now they do have many excellent antibiotics to treat it. I remember also reading that most CF patients do end up with pseudo. it's just a matter of when not if. I will find out where I did read it and let you know. We all know that you can't keep kids from touching or putting things in thier mouths, so we have our lil one wash his hands often, keep antibacterial wipes all over the place , and wipe his toys off, and keep him out of the bathroom and shower . He is going to preschool this Sept. we are somewhat nervous knowing that we can't keep everything clean there , but we have taught him how important it is to wash his hands after touching toys and before meal times . Hang in there and God Bless you and your family!.<img src="i/expressions/rose.gif" border="0">Donna Mom to Mikey 3 w/CF and Hannah 5 w/o CF<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/sun.gif" border="0">
Rebekah, I spray a bleach/ water soultion all over my bathroom and kitchen every couple of days, as well as an alcohol, eucalyptus and lavender oil mix in the air. Both are pretty good disinfectants ( and the oils smell good)Debbie23 w/ CF<img src="i/expressions/face-icon-small-smile.gif" border="0">
AbsintheSorrow
New member
I'm no parent. I just wanted to say... unless something weird happens in the next few years, your son will culture pseudomonas at some time or another. The stuff is everywhere. It won't help to try and shelter him from touching stuff, and putting things in his mouth. Not more than any other parent, anyway. And --- mind you this is a general statement and doesn't apply to everyone or every strain --- pseudomonas is easy enough to live with. I've cultured it for a bunch of years now, and I'm still alive and kickin'
midwestmama
New member
Hi. I'm new to CF. My DS (19 mos) was just diagnosed 2 weeks ago. Can you explain pseudomonas to me? They did a culture at his appt last week. Was it for this? Thanks.
AbsintheSorrow
New member
Pseudomonas is a type of infection that CFers get in their lungs. It's actually in the air all the time, and just doesn't affect healthy people. There are a lot of different strains of it, and once a CFer gets it, it's permanent. You can make it somewhat dormant with meds when needed, but it never leaves. I have.. 3 or 4 different strains, and every once a while (maybe twice a year), I have to go back on meds to stop it from growing again. The thing is, obviously, every parent wants to shelter their CF kids from it, because it does create problems, and it does start health to go downhill, even if slowly. But, pseudomonas is EVERYWHERE. It is in everything. You can't keep your kids from getting it. It <i>will</i> happen some time. And then you just deal with it and keep going. But don't try to keep your kids from being among people or whatever, it won't work. One piece of advice I was given... those poofies people use in the shower - pseudomonas LOVES those! So about once a week, either replace it, or throw it in the washer to kill whatever's living in it. But don't feel the need to get rid of them altogether. I not only shower in the same bathroom with one, but I actually use them myself (love 'em!). So just wash or replace and you're set. As far as the culture your child was given? Yes, that was more than likely for pseudomonas. It's also for staph and whatever else may be growing, but I'm sure they're looking for pseudomonas as well.
Hi
I just stumbled upon this chat while looking up pseudimonas in Google. I am an Australian mother of 4 yo girl with CF. I know most of the stuff about it, but I want to know more. How to prevent it. I tell people to take their shoes off when coming into the house, and they look at me like I am an alien. The CF nurses from the hospital visited me today, and left their shoes on. Being the paranoid mother I am, I then washed all the floors with disinfectant after they left. I have asked and asked at the hospital how anal should I be, and noone can tell me. Everyone thinks I overreact, but this is the second time my daughter has had it in 8 months, with a clean freak for a mother!!!
I just want to know am I wasting my time being this clean cause she's going to get it anyway. <img src="i/expressions/rose.gif" border="0">
I just stumbled upon this chat while looking up pseudimonas in Google. I am an Australian mother of 4 yo girl with CF. I know most of the stuff about it, but I want to know more. How to prevent it. I tell people to take their shoes off when coming into the house, and they look at me like I am an alien. The CF nurses from the hospital visited me today, and left their shoes on. Being the paranoid mother I am, I then washed all the floors with disinfectant after they left. I have asked and asked at the hospital how anal should I be, and noone can tell me. Everyone thinks I overreact, but this is the second time my daughter has had it in 8 months, with a clean freak for a mother!!!
I just want to know am I wasting my time being this clean cause she's going to get it anyway. <img src="i/expressions/rose.gif" border="0">
Emily65Roses
New member
Being clean is never a waste of time. However, she will get it at some point or another, so going as far as you're going may be overboard. In the end, it's your daughter, and your choice. Hospitals can be pretty dirty, contrary to popular belief, and there's nothing wrong with telling the nurses and staff and doctors that enter your child's room to do ____ (insert cleaning habit here). However, the one point I always try to make is, yes you want to try and avoid things like pneumonia and pseudmonas, and what have you, but don't overdo it on things like the common cold. When your daughter is exposed to these things, it will help build up her immune system, make her a little stronger. So avoid the things that are liable to cause big problems, but don't worry about over-cleaning when it comes to things like stuffy noses and colds. You won't like it while it's there (no one likes a cold!), but in the end, it'll do her good. Just like with any other kid. <img src="i/expressions/rose.gif" border="0">
to the clean freak australian mum lol. you sound just like my mum! except, she cleans because she is genuinely weird and likes everything to be sparkling, just incase the queen visits <img src="i/expressions/face-icon-small-wink.gif" border="0"> people always comment on how nice and tidy her house is. anyway, you will never ever escape pseudomonas, no matter how clean your house is. but if you wish to stay a clean freak, at least people will be impressed with the state of your house <img src="i/expressions/face-icon-small-happy.gif" border="0">