What things did CF Center tell you to do/not do re avoiding infections

[Aboveallislove]

If folks could share, I'd appreciate.

We were told stagnant water and then specifically bathtub toys.
Not to play in leaf piles in the fall.
Avoid smoke exposure
Get immunizations and flu shot and avoid those who are sick
Not to interact with others with CF.

What did your doctors tell you?

 

[Ratatosk]

Avoid other people wcf due to cross contamination.
Get immunizations, including flu shots.
Anyone in close contact with ds needed to get flu shots.
Avoid hot tubs.
Avoid smoke -- 2nd hand & 3rd hand
Cats --- this is one I've only heard from our doctor who is an infectious disease specialist, but I believe he's concerned with Toxoplasmosis. http://www.cdc.gov/parasites/toxoplasmosis/ Although could be due to potential allergies and inflammation. In any event, dh isn't a cat person, so it's not an issue.
Avoid sick people.
Avoid people with MRSA -- which has caused issues in our family as a relative by marriage had MRSA pneumonia and we just aren't willing to risk ds' health.

We wash hands or use hand sanitizer after we're shopping, at church....

 

[ponytails]

Avoid gardening, rotting onions, dont eat raw mushrooms, no humidifiers, reptiles, poorly chlorinated pools.

 

[believingjesus]

May I ask why no reptiles from anyone who knows? We have had a leopard gecko since my younger son was in 3rd grade, he is 21 now. I would like to know so we can give him away if we need to. Please. I wish I had known all this back when my son was diagnosed in 1994. I remember the CF doctor that we had back then specifically telling us to use a humidifier which we did. Also we didnt know about raw mushrooms. I wish to God they had told us. I also wish that I had known about this forum back then, if it was around, as we could have learned from others who are learning each day like us.

My older son does not live with us anymore but visits when he flys here but I don't want to have the gecko if we should not. I wish I had known all I do now. I am to blame as I should have known.

P.S. we quit using the humidifier about 15 years ago when they told us differently.

 

[Gammaw]

This is a great thread. There is no consistent "handout" of which I'm aware given to new CF parents by the Centers. I remember how our Center sent us a handout on Pseudemonas telling us to avoid hot tubs AFTER our son tested positive. I was livid. That was a heck of a time to tell us since he had jumped in a friend's hot tub at pool party just a few weeks earlier. Keep the thread going guys.....what do you avoid or what precautions do you take?

 

[Gammaw]

Let me add....no swimming in rivers or lakes. Ocean and well chlorinated pools are ok - and salt water pools are NOT better than chlorinated ones - avoid salt water pools. The level of salt is insufficient to kill bacteria. They're worse. But that is not from our CF Center. It's from our research.

 

[believingjesus]

Thanks for saying that Gammaw about the center not telling as I know they never told us anything about any of that.

 

[Gammaw]

Hi Believing. I know what it's like to feel as though you should have done something to prevent an infection. I have kicked myself many times. I suspect it's a common feeling! But the truth is that CF is an immensely complicated condition. With risks both hidden and otherwise, at every turn. I know I want a list to check off so we can eliminate every possible problem, but they occur despite our best intentions. It's the nature of the beast. And we really can't blame ourselves for running the race, jumping every hurdle successfully until we inevitably miss one. Known or unknown. We do our best. Which isn't going to be perfect.
I would really appreciate and even expect the Foundation and the Centers to be better about preparing us with information about known risks. I really don't understand why they don't. Although I understand their attempts to run this race aren't perfect either. And I suspect they feel a tremendous responsibility to ensure precautionary statements are scientifically - empirically - documented before cautioning everyone. That is one of the reasons I find this forum so helpful. It is a great place to gain information that isn't always coming from the Centers. And it provides a great opportunity to exchange info on emerging trends and experiences and otherwise anecdotal information that may resonate with you, although it may not apply to the larger segment. This is an invaluable resource for me. Heck I never thought about reptile bacteriology either! But now my little lizard lover is NEVER getting one for a pet, though his chances have always been pretty slim anyway! YUK! Be gentle and forgiving with ourselves. We have enough happening in a day that we don't need to heap guilt on top of it all. That would be doubly exhausting! I just keep learning......! Thank you all for teaching me more everyday. Blessings.

 

[Gammaw]

Hi Ratatosk. Could you find out more about the cat precaution? We have TWO! And my little guy absolutely worships one of them. My assumption too was that we had to keep our CFer from cleaning litter boxes but not necessarily away from the cats.....?!

 

[ponytails]

I'm sorry to have worried you believingjesus. Reptiles have the potential to carry salmonela, pseudomonas, and mycobacteria. But it doesn't mean that all do. Its just they have the potential to. Considering the length of time you have owned your reptile I'm sure if it hasn't been an issue yet then there is no need to be concerned. Some choose to own one regardless and just practice good hand hygiene. As far as the mushrooms, I was surprised too as my daughter had just discovered a love for them. Apparently there is a high probability that raw mushrooms can carry psuedomonas due to the environment they are grown in.

 

[Gammaw]

AboveAll . . . I never heard a tip about avoiding bathtub toys from my CF Center. I absolutely believe that is right, but they never told me. I discovered it one day when a particularly strong squeeze on one delivered something brackish out of the hole! I realized it was mold!! How foolish could I be not thinking water stayed inside the thing and caused problems out of sight. I tried at first to simply figure out how to keep them clean and the best tip I found was to get new, and put a dot of glue over the hole to seal it up. It works! Now I can't promise that the material out of which bathtub toys are made, and their constant contact with water doesn't still render them risky, but it was a way to minimize the problem. I kept just a few to make our nonCFer happy, and ran the little suckers through the dishwasher on a regular basis......

 

[Diana4Natasha]

Hi, They also told us not to play with sand in parks.
Wash hands as often as possible.
no plants, no pets
Never told us any thing about mushrooms, just rotten onions.

 

[liveitup]

I only ever heard no swimming in ponds and lakes (which I have done.) I also heard about the rotting onions. We always jumped in the leaves in the fall - but I can see why that is not a good idea. Aside from that, I was told just wash your hands. I've had pets my whole life, I clean litter boxes, and have kept lizards, etc. I garden, and I play in sand (with my kids ..) I adore mushrooms. You need to do what you feel comfortable with, and don't beat yourself up for things done in the past!

I am the one with cf, not my kids (3 for them )

 

[welshwitch]

I concur with LiveItUp! I'm 35 and in great health. The only things I ever heard were no-no's growing up were smoking, and bad air quality. It was only in recent years that the no other people with CF rule came into play (a sad one). Here are all the things I did as a kid:

*play in leaves, lakes, rivers, ponds
*play with animals
*onions, mushrooms, gardens, dirt, sand
*etc. etc. etc.

I know that as we learn more about CF and the other ways it can be exacerbated by harmful materials we learn more about what not to do and I get that. But please remember that we have to live life and not live in a bubble. Don't beat yourself up, do your best, and take it a day at a time.

 

[believingjesus]

Thank you for seeing it that way welshwitch. We did allow my son to live a full and complete life. He has done everything like parasailing, playing in the dirt, etc. He was never in a bubble. I do however regret that. I wish I had known about ways to contract bacteria in your lungs. We were only told by the CF clinic to wash hands frequently, stay away from others with CF, and to use a humidifier as we were told that's what people with CF need, the moisture. We did learn about 15 or so years ago that the advice of the humidifier was wrong. I should have learned about all this but I was doing everything the doctors always told us and going to each appointment and doing all the tests and treatments each day. He always did it properly when he had me to nag at him. He does skip some treatments now but mostly does what he is supposed to. I love that he has had a full and fulfilling life but I regret that too.

 

[imported_Momto2]

welshcwitch. Similar boat here. I grew up with cats, dogs, chickens, goats, etc. Spent tons of time in lakes, ponds, and hottubs. I STILL garden extensively. THe things my parents and I were rabid about while I was a child- NO contact with other CF people. Avoid hospitals like the plague, did as much outpatient IV treatment as possible. No exposure to smoke or other known airborn crud. So far my cultures are pretty clean, though I do have a fair amount of lung damage at this point, but nothing unusual growing in my lungs. *knock on wood* As an adult, I wear a mask on airplanes and wash my hands extensively. I also wear a mask if I have to walk into a docs office or hospital. But, you gotta live life.

 

[Dank]

Don't be overbearing parents. Don't take away a childhood for your kids. Try to instill good values with diet, exercise, and treatments and they will be just fine. If your kids are already grown, then don't sit here and look back with regret, you can't go back in time no more than anyone else.... I find this entire thread to be rather....unnerving. This is coming from someone who grew up rather outcasted. The best thing you can do is encourage creativity and encourage to live life the best you can. I live with 2 cats now (my body has started to build a resistance too), I was in public schools my whole life, and I've swam in lakes and fished out of streams in my bare feet, without much issues growing up.

I've heard some horror stories about kids dying because of cross contaminating their CF germs with each other. Hopefully they are only rumors (have not researched), but that's at least one piece of advice I can agree with here.

 

[nmw0615]

I have to side with Dank on this. Reading this thread has made me a little uncomfortable because a lot of suggestions of things to avoid are the very same things I did growing up. I helped my dad dig a pit for the sandbox. I swam in any body of water I was allowed to. I jumped in huge piles of leaves, then jumped out and helped my dad retake them just to I could jump again. The only suggestion I follow religiously is to avoid close contact with other CFers.

I have pseudomonas and MRSA. Who knows where I got the pseudomonas and I'm pretty sure I got MRSA from the hospital. But I got to have the same childhood experiences every single one of my friends did. Not once have I ever blamed my parents for any of my health issues. Never. Even when my mother told me, crying, that she was sorry for giving me this life. I may wish I had been born without CF, but I was. And so I make the most of it, just like I did when I was growing up. Maybe I wouldn't have pseudomonas if I hadn't swam in lakes or dug in the dirt, but having the memories and feelings of joy and happiness from those times makes dealing with the infections possible.

 

[Aboveallislove]

Thanks all for sharing what your doctors' recommended. Early on, we met with an infection control doctor to get a handle on things and I still remember him saying its a balance: Some parents do one extreme ("my kid is doing everything other kids do") or the other ("living in a bubble"), and neither are good--it's somewhere in the middle. I think the doctor's are the best to guide us for that middle ground and trust our doctor's judgment when she said no jumping in leaves or bath toys.

I do think there's a generational divide going on, though. I vividly recall before having kids scoffing at over protective parents putting helmets on their kids to ride their bikes. I had the best memories racing around our neighborhood doubled-up and riding like wildcats (less pleasant ones of the nasty spill I took and the horrible headache!) But as a mom, our ped recommends helmets for bikes and as a mom, that's my responsibility. Ditto on the "youth boaster" seats in cars. Come on, we road piled in the back of trucks and station wagons. Or lead paint. Knowledge advances. Doctor's recommendations change. And fond memories will change.

 

[believingjesus]

Yes there is a generational divide. If we had been advised or even knew in any way that our child could catch something from the environment we would have done everything to avoid it. We were not told anything. They said it must be from the environment. Even then they did not tell us where in the environment as I went crazy trying to find out where. I know other parents in my generation would have done everything possible to keep their child safe too. I am glad that my son has had a wonderful life and gets to see the world. I am glad that he graduated and has a job he loves. I am fortunate as he is the most wonderful son. He is responsible, intelligent, handsome, mature beyond his years, caring, an excellent brother and soon to be uncle. Mostly awesome!