What do you do to discourage pseudomonas while keeping your child happily "normal"?

[edan]

Hi Lisa,

So, in the world of newly diagnosed, I am trying to regain some balance in my family's life, particularly concerning pseudomonas and how to avoid them. I konw about the hot tub issue, but I need to understand if I should keep my daughter away from other things. For example, this last week we have come in contact with the following. Should I have avoided them?

1.) Bubble machines! All kids LOVE them, but are they safe? Should I stear her away from them when we see them at the park/etc?

2.) Water fountains. Not to drink from, but the decorative ones at the park. She loves to play around those as well.

Thanks for your input.

 

[LisaGreene]

Hi Edan,
This is such a tough question and there are opinions about this across the board. But I can give you my ideas about what has worked for us and what I know about healthy child development.

So, first of all, as much as we try, we can't avoid our child getting pseud. My son got it at age 2, even though we were quite paranoid about bugs early on with him as many "newly diagnosed parents" understandably are. And my daughter, now age 9, has never had a culture with it yet and we were alot more relaxed with her. Go figure. Pseud is everywhere. That being said, we can certainly be prudent about what we allow our children to do- just not paranoid!

So, for us, we avoid hot tubs and indoor pools. Does this mean we never go in them? No. If we are with special people at a special event, we go with the flow and allow the kids to swim with the others. This happens maybe 2-3x year.

Water fountains? We do our best to not need them but if we do, we use them. Soda fountains are probably just as bad but we still buy pop at McDonald's every now and then (we don't drink alot of pop for other reasons like the sugar and diabetes risks).

Bubble machines I've never thought of but I would probably let my kids play with bubbles- I'm sure we came in contact with them at times when our kids were little, I just don't remember. The soap might actually help to keep things clean (I'm guessing here) and I'd be sure to wash hands afterwards. I suspect that the nasty taste of soap would keep most little ones from putting hands in mouths.

So, my motto has always been: prudent, not paranoid. I take measured risks weighing the following:

1. Will my kid feel left out if he doesn't do it?
2. Will this make my kid feel different?
3. Will this make my kid resent CF (and me)if I say No?
4. Will this action that I am taking likely make my kid feel like a victim of CF?
5. Is this something that my doctors have said "don't do" or am I just being worried and scared?
6. Is this something my kid is likely to do anyway if I am not around?

We want to raise children who enjoy life, see themselves as a person and not a disease, are empowered to be all they can be, and who take charge of their lives and fight CF instead of simply sitting on the sidelines of life waiting to die.

Over-protection creates a victim mentality as well as is likely to result in either rebellion or depression when they are teens. The book and movie "The Secret Garden" is a good example of what can happen with over-protection and medical issues and is not far off the mark of reality.

If you want more information about the dangers of over-protection and how to prevent the problems associated with it, we have several articles on our website at www.ParentingChildrenWithHealthIssues.com.

Of course the BEST things you can do is good handwashing, often. Avoid obviously sick people whenever possible without being obnoxious. Set limits around sick people coming into your home. Teach your child early on about good health habits and why it's so important; good CF care. Help your children learn about choices and consequences at a young age (even 12 month old babies can learn "If you pull mommy's hair, then mommy will put you down.") Have fun, enjoy life, and be prudent- but not paranoid.

I hope this helps give you some ideas. They are simply my humble opinions...

Hugs and hope,
Lisa

 

[dolphinsrule]

Hi there,
Lisa - Curious about the indoor pool rule - if it is properly maintained, is there still more risk with this? For the original poster, my son was diagnosed with CF at the age of 8 and he is 14 now. He cultured staph aureus from day 1. At the age of 10, he cultured pseudomonas (non-mucoid). We did the usual protocol for months and months and no change of status. We opted to then put him in for IV antibiotics and still no change. Both his pulmonologist and I were baffled and frustrated. At that point, we began to examine any environmental sources; of course, pseudo is everywhere. Around that time, my son was ready to start taking showers instead of baths. We have air purifiers in the home, no carpeting, we take shoes off at the door. He drinks only purified water - no fountains or dispensers. We use disposable nebs. I wash everything with Clorox 2. Lots of hand gel. I could go on and on. We take precautions with certain activities and he is exempted at school from same. We bumped up his daily exercise regime, both at school and home, to meet that hour a day requirement that is recommended. We also bumped up respiratory therapy after nebs - he does alot of cycles of airway clearance. He has been staph and pseudo clear on all cultures for about two years now; additionally, he used to CF exacerbate about once a month and that has subsided as well. He is very proactive with staying healthy, because he has seen the alternative. HTH

 

[Aboveallislove]

Out of curiosity, did you change something and then got two clear years or are you just saying he had and then got I'd of and throughout you we're doing that? Thans!

 

[dolphinsrule]

From the point in time after IVs did not eradicate pseudo, I addressed the environmental exposure more seriously. He stopped taking baths, no tap, fountain or cooler water and drinks only purified water. More physical activity, disposable nebs, more airway clearance. He has an IEP and a Health Plan that addresses precautions, etc. The other things in my original post were already in place.

 

[ymikhale]

I agree that opinions diverge on this. I am part of "conservatives". My dd cultured PA twice, at 18 mo and 3 y/o and we eradicated it each time. I always took precautions that might be considered "extreme" by some, like no pools at all, we swim only in the sea, but for me it is totally worth it. Not only b/c of its consequences healthwise, but also b/c treating PA pretty much takes a lot ot time, and I would rather spend it doing other things. Of course, there is no guarantee that all the precautions will postpone her getting PA, but at least I know I did all I could. It is not always easy to explain to my dd that she cannot do this or that like other kids, but in the end she got used to it. I try to make it up to her with things that other kids don't do, so she feels special in a positive way. hope it helps. In the end you have to go with what you are comfortable with.

 

[Beccamom]

We have a pool at home that I check everyday for levels or no swimming. I just swam twice in the indoor pool at the gym and have been sick since.

 

[Ratatosk]

The times ds cultured pseudo in the past happened when he was very, very young -- prior to being in daycare or exposed to pools. He was home with me for 12 weeks. No symptoms, but his first culture was at 3 months. I suspect he brought it home from the NICU along with another bug. At the time the RTs on the ward would use the same bottle of albuterol for each child and go from cot to cot, would glove up but not use gowns and would hold the babies up to their chests to do physio.

We do avoid hot tubs, areas with stagnant water, clinic environment with other CFers in a crowded waiting room. I boil nebs after each use. He does take swimming lessons, swims in the lake at his grandparents vacation home.

 

[Aboveallislove]

Completely agree that there is a range of ways to handle and we too are probably more at the extreme end of things. But I don’t really think of it as stressing "normal." Rather, to me, it is stressing "perfect." To me, there is nothing "normal" about cystic fibrosis. DS has to have figured that out on his own and does treatments while we watch kids playing out the window; and while he suffered from daily tummy aches. For me, I try to be very matter-of-fact about it, so when he says he hates his treatments, I agree that sometimes they aren’t any fun, but that we always get to do fun things when he does it. And that most other little boys and girls don’t have to do treatments and he knows why...because he has cystic fibrosis. But some other boys and girls can’t see, or hear, or walk and that that’s okay too. And Mommy needs meds for her thyroid. Everyone’s body has something that doesn’t work right. Aunt Elizabeth can’t have babies grow in her tummy and some have that with cystic fibrosis. But she is a mommy to her three little ones who grew in someone else’s belly. This isn’t constant. But it is a "normal" conversation when he asks why he has to do something or can’t do something and I ask him why and he says "because I have cystic fibrosis." And it isn’t out of sadness or anger...it is merely a fact of life. However, I also stress he is perfect and how we prayed for a baby and God gave us a perfect baby–DS. And he is perfect. He is perfect in God’s image and likeness. And God didn’t intend for us to suffer, but that is the result of Adam and Eve disobeying, but that in Heaven he will never have a tummy ache. And in heaven we will know why God allowed him to have cystic fibrosis....probably because he was so tough and would do such a good job taking care of himself ...and why God sometimes says "no" to our prayers ...because He’s God and He loves us and knows what’s best for us. So normal, no. Perfect, Yes.

 

[Helenlight]

I tend to judge mainly on how new/fresh the water is. Bubble machines would generally be regularly re-filled with soapy water, so I think it would be quite unlikely that any significant amounts of bacteria would be growing in them. Decorative water fountains on the other hand could have quite old water in them, bits of dirt, leaves, duck poo, and which would probably be left still over night (so no continuous aeration). I've seen park water fountains that are quite discoloured, so I try to keep our daughter away from them. When they are switched on I also try to keep her away from the spray-drift, because it's basically fine particles of bacteria soup (!) which I'm not willing to risk.
Indoor pools I believe are generally considered safe, if they are well-maintained, and our kids don't play in the puddles on the side of the pool or changing room. My own precautions would be to try and go in the mornings and on quiet days to minimise contact with the secretions of hundreds of kids coming through and splashing around, but that's easier said than done sometimes!
The bathroom is a source of p.aeruginosa, and I still put Leyla (2.5 yrs) in a baby bath at to minimise contact with the big bath/shower and shower curtain.
I'm generally more cautious in winter and less in summer, when there are less bugs around and our bodies more resilient.
Like other's have said, sometimes it can depend on the situation and balancing out whether the child is going to suffer in other ways from missing out on activities, and you'll find your own way around this. If in doubt about anything, it's a good idea to consult your medical team.

Best of luck!

 

[Ratatosk]

One thing that never dawned on me when ds was smaller, because there weren't any in our area are "splash pads". Parks that have water features where kids can play in areas where water shoots out and kids can play around, splash in the water. I noticed a sign when we were at Disney last year warning parents not to let children use them if they have skin rashes, gi issues, are wearing diapers and not to let them ingest the water because they RECIRCULATE the water. Ewww!