Re: Hi, I am a new member to CF parents

[Guest guest]

Hi Sharon. Welcome to the list. Clean and dust free is the best policy. I

wouldn't get rid of my house plants unless they have mold growing in their

soil. In that case I would just repot them. Personally we don't have

squirting bath toys. Of course that could just be a me thing. But I still

remember when I was little and my mom wanted to throw away a squirty baby

that I played in the bath with all the time. I wouldn't let her and finally

she took a knife and cut it open for me to see all of the mold and goo on

the inside. I know that today's toys are coated with microban, but I just

can't bear the thought of stuff like that growing. Air or heat dry your

dishes if they are still wet. Toweling can lead to bacteria on them.

Otherwise just be clean. We use clorox wipes a lot to wipe down surfaces

and things like grocery carts when we are going to set Patti in them. I

don't really think you can totally avoid pseudomonas and staph completely.

It is basically every where. I don't mean to scare you, just keep your

daughter away from other cf kids as much as possible. But in the 6 months

since Patti's diagnosis I've come to think that it is probably just a

waiting game until you culture pseudomonas, and that when that happens if it

is treated aggresively enough, it is liveable.

I don't know about the transatlantic flights as we never fly anywhere. :-)

Take care and visit often.

Dawn, mom to 5, 4, Sammye 3, (adopted sibling group with out

cf), and Pattimae 9 months wcf

Hi, I am a new member to CF parents

> Hi, My daughter, has CF. She is just 6 months old and we only

> found out about 1 month ago. So this is all very new to us. I have

> loads of questions, and maybe some of you can help me as the doctors

> are not being specific enough for me.

>

> Firstly, how do I protect my home from pseudomonas and staph. I need

> to know how to keep my house extra clean. what special things should

> I be doing, should I get rid of my house plants, should i dry off

> everything that comes out of the dishwasher, that isnt fully dry,

> should i get rid of squirty bath toys, that are difficult to clean???

> I hope these dont seem like silly questions, but I am just so

> confused. How clean should clean be?? Should we take off our shoes

> before comming in the house?

>

> Second, Air travel, we do alot of trans atlantic flighing, does

> anyone have any useful information on how to avoid infections on

> airplanes, should wear a mask, how llikely is she to get sick

> after air travel? Dont long trans atlantic flights put her at extra

> risk???

>

> thanks for any help anyone can offer as I am really worried, and I

> dont want to live in a bubble or home educate or anything, but just

> want to know the best way to live for us.

> Thanks,

> Sharon, mother of , CF, 6 months

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

I always made it a habit of microwaving my son's bottles and other

plasticware after coming out of the dishwasher. Don't know if it helps, but

we've been pseudo-free (so far). But short of this easy adjustment, I don't

think there's too much we can do to actually prevent these bugs.

[Guest guest]

Hi Sharon,

I am happy you found this list...there is so much great support here. Have you

asked your CF clinic about the plane trips? They may have some ideas, maybe

even a round of antibiotics, flu shots etc in advance of a flight. In my

experience, most things I've picked up from planes have been viral, but it can

still set off a secondary infection in the CF kids especially.

How is your little girl doing now?

Jane mom of (10), Tony (9), (6), Meredith (4) (all no cf), Eleanora

(22 mos) rad/ftt/?cf and one due in November

smithcranfield@... wrote:

> Hi, My daughter, has CF. She is just 6 months old and we only

> found out about 1 month ago. So this is all very new to us. I have

> loads of questions, and maybe some of you can help me as the doctors

> are not being specific enough for me.

>

> Firstly, how do I protect my home from pseudomonas and staph. I need

> to know how to keep my house extra clean. what special things should

> I be doing, should I get rid of my house plants, should i dry off

> everything that comes out of the dishwasher, that isnt fully dry,

> should i get rid of squirty bath toys, that are difficult to clean???

> I hope these dont seem like silly questions, but I am just so

> confused. How clean should clean be?? Should we take off our shoes

> before comming in the house?

>

> Second, Air travel, we do alot of trans atlantic flighing, does

> anyone have any useful information on how to avoid infections on

> airplanes, should wear a mask, how llikely is she to get sick

> after air travel? Dont long trans atlantic flights put her at extra

> risk???

>

> thanks for any help anyone can offer as I am really worried, and I

> dont want to live in a bubble or home educate or anything, but just

> want to know the best way to live for us.

> Thanks,

> Sharon, mother of , CF, 6 months

>

> PLEASE do not post religious emails to the list.

>

> -------------------------------------------

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

Hi Sharon,

welcome to the list!!

When our Fiona was dxed more than 4 years ago, we had the same

worries and thoughts that you have now. From today's perspective I

think it's important that you feel comfortable with your protective

measures. It is still unknown how and why the lungs of 80% of the

pwcf get colonized with PA until they reach the age of 18. I have

come to the conclusion, that you can't do much to prevent that, but

maybe you can postpone the first culture for a few years. Honestly, I

even doubt that because PA is ubiquitous. We have drawn the line for

us in such a way, that we don't let Fiona get in contact with other

pwcf and we avoid unnecessary contact with mold (e.g. the squirty

bath toys), as long as it doesn't lessen Fiona's quality of life.

But we let her play in the mud, we have plants in and around the

house. And my wife makes sure that our house is clean, regardless

whether Fiona has CF or not. Hardly anyone gets beyond the hall with

his shoes on, unless you are very quick and Silke is very tired, LOL.

Point is, you have to feel comfortable with what you are doing. Take

your time to adjust to everything. I hope that won't culture

for PA for a long time.

Regarding the staph, we have become used to it. Fiona cultures it for

four years now, it doesn't cause real problems and I think that it

helps to keep the PA away from Fiona's lung.

Bye

Torsten, dad of Fiona 4wcf

[Guest guest]

Hi Sharon. Welcome. My son is just turning a year old and he was

diagnosed last month. So we are in the same boat...and what a boat it is.

I worried for a while about pseudo and staph, but the fact is, they are

everywhere...you need to get to a level of comfort for you in terms of

cleanliness. We got bottles of Purell for each bathroom and started making

an effort to wash hands more often, use the Purell, change towels and

sponges more often, and wash our kitchen towels every single day rather than

letting them sit a day before going through the washer. We don't use bleach

or any harsh cleaning products, just vinegar and baking soda, but I will now

add some antibacterial essential oils to our cleaners like lavender, lemon

and tea tree, to help them do their job even better.

We also watch out for dust and are getting a HEPA purifier and allergy

covers for all the bedding. Eventually we will save up for wooden floors to

replace our carpeting. Dust as an irritant and potential allergen needs to

be addressed -- my whole family is allergic to dust and mold.

Our clinic said air travel wasn't a problem...but this is domestic. For me

the biggest risk of transatlantic flight is the smoking. Yuck. I remember

coming home from England and all I could smell was smoke coming out of the

air jets. Maybe you can get smokefree transatlantic flights now though? Just

make sure you take meds and all that with you so you don't have to fill a

prescription while away from home.

HTH, welcome, this is a great group.

mama to , 3 ?CF and , 1 wCF

[Guest guest]

I always made it a habit of microwaving my son's bottles and other

plasticware after coming out of the dishwasher. Don't know if it helps, but

we've been pseudo-free (so far). But short of this easy adjustment, I don't

think there's too much we can do to actually prevent these bugs.

How long do you microwave and on what power setting?

I am interested in using this method and also is it possible to use the

mircowave to " dry " the nebulisers? Not the masks as they may melt!!!

Margaret - Grandma Maags (LOL) to Shelby wcf 9 months

today 16/08/01

[Guest guest]

Sharon

Welcome to the group, we are happy to have you here.

Lorenzen

[Guest guest]

Hi Sharon,

Welcome to this group. I have a daughter wcf who is 4 today. I dont think

you can protect against Pseudo. as we did all the " right " things and didn't

have any contact with cf kids but Eilish first cultured it at about2.6yrs.

Thankfully her last two broncs. are clear of it. The only thing I do

differently is make sure no-one with a cold gets into our home. Im not a

cleaning freak but Im clean if you know what I mean. I dont use wet towels

on her and I also microwave her neb for 8 seconds to kill bugs.

Weve travel with Eilish a fair bit and she's never gotten ill. You can

pick just as much germs up going to the supermarket, so I think if

travelling is your thing then do it. We try to live normal and I think we

do except for the physio and mask but unless someone is ill we dont let cf

dictate what we are going to do. I know this is hard in the beginning as

for the first 12 months I sort of hibernated just incase she got ill and

then realised this wasn't living.

Hi, I am a new member to CF parents

> Hi, My daughter, has CF. She is just 6 months old and we only

> found out about 1 month ago. So this is all very new to us. I have

> loads of questions, and maybe some of you can help me as the doctors

> are not being specific enough for me.

>

> Firstly, how do I protect my home from pseudomonas and staph. I need

> to know how to keep my house extra clean. what special things should

> I be doing, should I get rid of my house plants, should i dry off

> everything that comes out of the dishwasher, that isnt fully dry,

> should i get rid of squirty bath toys, that are difficult to clean???

> I hope these dont seem like silly questions, but I am just so

> confused. How clean should clean be?? Should we take off our shoes

> before comming in the house?

>

> Second, Air travel, we do alot of trans atlantic flighing, does

> anyone have any useful information on how to avoid infections on

> airplanes, should wear a mask, how llikely is she to get sick

> after air travel? Dont long trans atlantic flights put her at extra

> risk???

>

> thanks for any help anyone can offer as I am really worried, and I

> dont want to live in a bubble or home educate or anything, but just

> want to know the best way to live for us.

> Thanks,

> Sharon, mother of , CF, 6 months

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

Thanks for your info. Dont people with colds and bugs on planes pass it into

the plane air conditioning???

Hi, I am a new member to CF parents

>

>

> > Hi, My daughter, has CF. She is just 6 months old and we only

> > found out about 1 month ago. So this is all very new to us. I have

> > loads of questions, and maybe some of you can help me as the doctors

> > are not being specific enough for me.

> >

> > Firstly, how do I protect my home from pseudomonas and staph. I need

> > to know how to keep my house extra clean. what special things should

> > I be doing, should I get rid of my house plants, should i dry off

> > everything that comes out of the dishwasher, that isnt fully dry,

> > should i get rid of squirty bath toys, that are difficult to clean???

> > I hope these dont seem like silly questions, but I am just so

> > confused. How clean should clean be?? Should we take off our shoes

> > before comming in the house?

> >

> > Second, Air travel, we do alot of trans atlantic flighing, does

> > anyone have any useful information on how to avoid infections on

> > airplanes, should wear a mask, how llikely is she to get sick

> > after air travel? Dont long trans atlantic flights put her at extra

> > risk???

> >

> > thanks for any help anyone can offer as I am really worried, and I

> > dont want to live in a bubble or home educate or anything, but just

> > want to know the best way to live for us.

> > Thanks,

> > Sharon, mother of , CF, 6 months

> >

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

> > -------------------------------------------

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

> > --------------------------------------------------

> >

> >

> >

[Guest guest]

Thanks for your support, I am also like you, just trying to be more

conscious about hygene, but I am finding it hard to know where to draw the

line but I suppose I will learn over the next few months.

We fly with Air Llingus to Ireland and its non-smoking, thank god, as

otherwise, I wouldnt travel!!! But I still find it hard to believe that the

rist is minimal as one of our doctors told us. The risk must be more than

going to the supermarket, as you re in the supermarket for about 1 hr, its

open space and not recycled pressureized air. On a plane its small space

with a lot of people all close together, that must be putting at

risk. I cant understand why people dont see the worry that I see, or am I

just paronoid already!!!

Thanks again

Sharon, Mom of 6 months with CF and , 2 with no CF

PS We live in Reston, Virginia, for the forseeable future, but will be

moving back to Europe in a few years, but maybe sooner than later, depending

on how does with air travel.. I am Irish and my husband is

Brittish, So even with our Anglo-Irish genes, still has CF. It makes

all the troubles in the north of Ireland seem so futile. We are all the

same!!! Put the money time and energy into CF research!!!

Re: Hi, I am a new member to CF parents

> Hi Sharon. Welcome. My son is just turning a year old and he was

> diagnosed last month. So we are in the same boat...and what a boat it is.

>

> I worried for a while about pseudo and staph, but the fact is, they are

> everywhere...you need to get to a level of comfort for you in terms of

> cleanliness. We got bottles of Purell for each bathroom and started making

> an effort to wash hands more often, use the Purell, change towels and

> sponges more often, and wash our kitchen towels every single day rather

than

> letting them sit a day before going through the washer. We don't use

bleach

> or any harsh cleaning products, just vinegar and baking soda, but I will

now

> add some antibacterial essential oils to our cleaners like lavender, lemon

> and tea tree, to help them do their job even better.

>

> We also watch out for dust and are getting a HEPA purifier and allergy

> covers for all the bedding. Eventually we will save up for wooden floors

to

> replace our carpeting. Dust as an irritant and potential allergen needs to

> be addressed -- my whole family is allergic to dust and mold.

>

> Our clinic said air travel wasn't a problem...but this is domestic. For me

> the biggest risk of transatlantic flight is the smoking. Yuck. I remember

> coming home from England and all I could smell was smoke coming out of the

> air jets. Maybe you can get smokefree transatlantic flights now though?

Just

> make sure you take meds and all that with you so you don't have to fill a

> prescription while away from home.

>

> HTH, welcome, this is a great group.

>

>

> mama to , 3 ?CF and , 1 wCF

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

Hi, Thanks for your info, how do you do this, do you use a microwave

sterilizer or just put them in for a few seconds???

Thanks

Sharon, Mum of 6 months with CF and 2 wocf

Re: Hi, I am a new member to CF parents

> I always made it a habit of microwaving my son's bottles and other

> plasticware after coming out of the dishwasher. Don't know if it helps,

but

> we've been pseudo-free (so far). But short of this easy adjustment, I

don't

> think there's too much we can do to actually prevent these bugs.

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

Hi Torston,

Thanks for your reply, its comforting to know that others are concerned like

me, and do want our kids to have a normal life too. I got rid of my squirty

toys from the bath, but can we take them to the pool, as our pool is

clorinated, or is that still dangerous? are there other places I should

watch out for Mould?

Thanks,

Sharon, Mum of 6 months with CF and 2 wocf

Re: Hi, I am a new member to CF parents

> Hi Sharon,

>

> welcome to the list!!

>

> When our Fiona was dxed more than 4 years ago, we had the same

> worries and thoughts that you have now. From today's perspective I

> think it's important that you feel comfortable with your protective

> measures. It is still unknown how and why the lungs of 80% of the

> pwcf get colonized with PA until they reach the age of 18. I have

> come to the conclusion, that you can't do much to prevent that, but

> maybe you can postpone the first culture for a few years. Honestly, I

> even doubt that because PA is ubiquitous. We have drawn the line for

> us in such a way, that we don't let Fiona get in contact with other

> pwcf and we avoid unnecessary contact with mold (e.g. the squirty

> bath toys), as long as it doesn't lessen Fiona's quality of life.

>

> But we let her play in the mud, we have plants in and around the

> house. And my wife makes sure that our house is clean, regardless

> whether Fiona has CF or not. Hardly anyone gets beyond the hall with

> his shoes on, unless you are very quick and Silke is very tired, LOL.

>

> Point is, you have to feel comfortable with what you are doing. Take

> your time to adjust to everything. I hope that won't culture

> for PA for a long time.

>

> Regarding the staph, we have become used to it. Fiona cultures it for

> four years now, it doesn't cause real problems and I think that it

> helps to keep the PA away from Fiona's lung.

>

> Bye

> Torsten, dad of Fiona 4wcf

>

>

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

Hi Jane,

Thanks for your reply, I did ask the doctors about air travel, and they said

the risk was minimal, but I dont see how they can say that, as if we are on

a flight with a few people who are sick, the air is recycled round and

round for 9 hours or so!!! How can that be good. They just said she how she

does, and if every time we go on a plane she gets sick, then we will have to

make some choices about lifestyle. So I guess if she doesnt get sick, we

can stay living in the US, but if she keeps getting sick every time we go

home to Europe, then maybe we will move back sooner than we thought. I just

can believe thsi has not been documented? There must be other CF kids who

have done alot of air travel, or maybe not??

Its so hard to find good information out there on these subjects. I am the

only one who finds this. I think we should all get together with our

thoughts and worries and write a book on all the practical stuff that

doctors dont tell you and that you just have to find out fo your self.

Thanks again,

Sharon, Mum to 6 months with CF and 2 wocf

Re: Hi, I am a new member to CF parents

> Hi Sharon,

> I am happy you found this list...there is so much great support here.

Have you

> asked your CF clinic about the plane trips? They may have some ideas,

maybe

> even a round of antibiotics, flu shots etc in advance of a flight. In my

> experience, most things I've picked up from planes have been viral, but it

can

> still set off a secondary infection in the CF kids especially.

> How is your little girl doing now?

> Jane mom of (10), Tony (9), (6), Meredith (4) (all no cf),

Eleanora

> (22 mos) rad/ftt/?cf and one due in November

>

> smithcranfield@... wrote:

>

> > Hi, My daughter, has CF. She is just 6 months old and we only

> > found out about 1 month ago. So this is all very new to us. I have

> > loads of questions, and maybe some of you can help me as the doctors

> > are not being specific enough for me.

> >

> > Firstly, how do I protect my home from pseudomonas and staph. I need

> > to know how to keep my house extra clean. what special things should

> > I be doing, should I get rid of my house plants, should i dry off

> > everything that comes out of the dishwasher, that isnt fully dry,

> > should i get rid of squirty bath toys, that are difficult to clean???

> > I hope these dont seem like silly questions, but I am just so

> > confused. How clean should clean be?? Should we take off our shoes

> > before comming in the house?

> >

> > Second, Air travel, we do alot of trans atlantic flighing, does

> > anyone have any useful information on how to avoid infections on

> > airplanes, should wear a mask, how llikely is she to get sick

> > after air travel? Dont long trans atlantic flights put her at extra

> > risk???

> >

> > thanks for any help anyone can offer as I am really worried, and I

> > dont want to live in a bubble or home educate or anything, but just

> > want to know the best way to live for us.

> > Thanks,

> > Sharon, mother of , CF, 6 months

> >

> > PLEASE do not post religious emails to the list.

> >

> > -------------------------------------------

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

> >

> > --------------------------------------------------

> >

> >

> >

[Guest guest]

Hi Dawn, thanks for your reply, I do know that eventually, will be

infected with PA and it is just a waiting game.

Is towling really dangerous, should I not dry anything with a towel, and use

kitchen towel instead. I wash my tea towel every day, but it does get damp

over the course of the day and I just let it dry out. But is it still

colonizing bacteria???

The clorox on the grocery cart is a good idea, But I can just see it now,

people looking at me saying, she has compulsive behaviour disorder, (clean

freak) which I am not but some things I guess we shold be doing for our

kids, even if we do get the odd funny look!!!

Thanks, Sharon, Mum of 6 months wcf and 2 wocf

Hi, I am a new member to CF parents

>

>

> > Hi, My daughter, has CF. She is just 6 months old and we only

> > found out about 1 month ago. So this is all very new to us. I have

> > loads of questions, and maybe some of you can help me as the doctors

> > are not being specific enough for me.

> >

> > Firstly, how do I protect my home from pseudomonas and staph. I need

> > to know how to keep my house extra clean. what special things should

> > I be doing, should I get rid of my house plants, should i dry off

> > everything that comes out of the dishwasher, that isnt fully dry,

> > should i get rid of squirty bath toys, that are difficult to clean???

> > I hope these dont seem like silly questions, but I am just so

> > confused. How clean should clean be?? Should we take off our shoes

> > before comming in the house?

> >

> > Second, Air travel, we do alot of trans atlantic flighing, does

> > anyone have any useful information on how to avoid infections on

> > airplanes, should wear a mask, how llikely is she to get sick

> > after air travel? Dont long trans atlantic flights put her at extra

> > risk???

> >

> > thanks for any help anyone can offer as I am really worried, and I

> > dont want to live in a bubble or home educate or anything, but just

> > want to know the best way to live for us.

> > Thanks,

> > Sharon, mother of , CF, 6 months

> >

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

> > -------------------------------------------

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

> > --------------------------------------------------

> >

> >

> >

[Guest guest]

Yes, Sharon, our CF docs brush off most of your hygiene concerns.

Unfortunately, they seem very fatalistic -- the nurse just said " PA is

everywhere and sooner or later they are going to get it. "

Well, I'd like that to be as " later " as possible thank you very much! So I

understand your concern. Frustratingly, I haven't found a lot out there on

this subject.

[Guest guest]

Wow, , Santosh and Eilish are just days apart - I didn't know they were

so close in age! Happy Birthday Eilish!

Krishnan

Mom to Santosh, 4wcf and Leela, almost 2 wocf

[Guest guest]

Yes, I believe germs can be transmitted through the a/c on a plane,

but no more so than they can be transmitted through a grocery store

by someone sneezing.

If you're fortunate enough to breastfeed, that should be enough

protection. Joy's pulmonologist recommended we keep her relatively

infection free the first years while her lungs were developing, so we

didn't fly during cold and flu season unless Joy was nursing. She has

now been on airplanes more times than I can count during her meager

21 months of life, and she's gotten sick twice. Once in September

and once in March, too close to cold & flu season I guess. We've

only flown once internationally, though.

There are things you can do to reduce the likelyhood of getting sick

on an airplane. If you can secure a surgical mask on her face, that

would be helpful. We take additional precations and wipe down the

seats and areas around us on the plane with those antibacterial wipes

by Clorox or other makers (not the hand wipes). Also, one key to not

getting sick on an airplane is staying hydrated with lots of water,

but don't count on the flight attendants bringing it when you want

it. Using saline nose sprays help keep your nose hydrated. We try

to avoid people who are obviously sick, especially in the airport.

You may ask for a seat assignment change, too.

There are a bunch of old messages on the topic of travel here:

http://groups.yahoo.com/group/cfparents/messagesearch/18448?

query=travel

Regarding Pseudomonas, Joy's pulmonologist at the CF clinic believes

the highest risk of contracting it is from nebulizer cups, since

pseudomonas is typically in our tap water. She says that the

dishwasher's sanitizing methods should be enough, though, for the

Pari cups.

Welcome to the group,

Ann, Mommy of Joy w/CF at almost 21 months.

> Thanks for your info. Dont people with colds and bugs on planes

pass it into

> the plane air conditioning???

>

[Guest guest]

Regarding Grocery Carts, we use this cover:

http://www.cleanshopper.com/howtoorder.htm

Everyone in the store just wants to know where they can get one.

There's another brand out there that may be even better, but I don't

know where to get it. No store I know of sells them.

Ann, Mommy of Joy w/CF at almost 21 months

> The clorox on the grocery cart is a good idea, But I can just see

it now,

> people looking at me saying, she has compulsive behaviour disorder,

(clean

> freak) which I am not but some things I guess we shold be doing for

our

> kids, even if we do get the odd funny look!!!

> Thanks, Sharon, Mum of 6 months wcf and 2 wocf

[Guest guest]

Ask your doc. if your kids can use vicam. It is a thick, viscus zinc spray

that you put in their nostrils. My aunt, a nurse practioner RN, who worked

in neonatal and childrens wings for years recommended it for our kids a

couple of months ago when we all had colds. She said her hubby uses it

every time he flies and he hasn't gotten sick since. It is basically a zinc

formula that absorbs into your nasal pasages. It doesn't spray so it won't

go into the lungs. But please be sure to ask your doc. as this is only an

sugestion for an over the counter med and I have not asked my doc. yet about

its use with my cfer and I wouldn't try it with out asking first.

Dawn mom of 4, 5 and under, the youngest wcf

Re: Hi, I am a new member to CF parents

>

>

> > Hi Sharon. Welcome. My son is just turning a year old and he was

> > diagnosed last month. So we are in the same boat...and what a boat it

is.

> >

> > I worried for a while about pseudo and staph, but the fact is, they are

> > everywhere...you need to get to a level of comfort for you in terms of

> > cleanliness. We got bottles of Purell for each bathroom and started

making

> > an effort to wash hands more often, use the Purell, change towels and

> > sponges more often, and wash our kitchen towels every single day rather

> than

> > letting them sit a day before going through the washer. We don't use

> bleach

> > or any harsh cleaning products, just vinegar and baking soda, but I will

> now

> > add some antibacterial essential oils to our cleaners like lavender,

lemon

> > and tea tree, to help them do their job even better.

> >

> > We also watch out for dust and are getting a HEPA purifier and allergy

> > covers for all the bedding. Eventually we will save up for wooden floors

> to

> > replace our carpeting. Dust as an irritant and potential allergen needs

to

> > be addressed -- my whole family is allergic to dust and mold.

> >

> > Our clinic said air travel wasn't a problem...but this is domestic. For

me

> > the biggest risk of transatlantic flight is the smoking. Yuck. I

remember

> > coming home from England and all I could smell was smoke coming out of

the

> > air jets. Maybe you can get smokefree transatlantic flights now though?

> Just

> > make sure you take meds and all that with you so you don't have to fill

a

> > prescription while away from home.

> >

> > HTH, welcome, this is a great group.

> >

> >

> > mama to , 3 ?CF and , 1 wCF

> >

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

> > -------------------------------------------

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

> > --------------------------------------------------

> >

> >

> >

[Guest guest]

I don't think that toweling is going to kill you. :-) but if it gets over

damp get a dry one and always start with a fresh one.

I just let people stare when I wipe down a grocery buggy. Our town is

really small and there are only two grocery stores and a walmart. So the

people who don't know us know people who do so eventually every one quit

staring because they knew what was going on. :-) But I have let my older

daughter push Patti in a stroller in the store when I didn't have any wipees

with me, and I think the store managers prefer I bring the wipes. :-)

If you get squirty toys look for something that is see though. Then you can

throw it away if you notice that it gets nasty. I wouldn't see having them

in the pool would be that bad. If you want to know for sure take a dark

colored sippy cup with a lid and fill it with some pool water, empty it and

then let it sit with your squirty toys. If the next time you go back, and

you open the cup if there is a bit of a film or slime on it then you know it

isn't safe.

Dawn, mom of 4, 5 and under, the youngest wcf

Hi, I am a new member to CF parents

> >

> >

> > > Hi, My daughter, has CF. She is just 6 months old and we only

> > > found out about 1 month ago. So this is all very new to us. I have

> > > loads of questions, and maybe some of you can help me as the doctors

> > > are not being specific enough for me.

> > >

> > > Firstly, how do I protect my home from pseudomonas and staph. I need

> > > to know how to keep my house extra clean. what special things should

> > > I be doing, should I get rid of my house plants, should i dry off

> > > everything that comes out of the dishwasher, that isnt fully dry,

> > > should i get rid of squirty bath toys, that are difficult to clean???

> > > I hope these dont seem like silly questions, but I am just so

> > > confused. How clean should clean be?? Should we take off our shoes

> > > before comming in the house?

> > >

> > > Second, Air travel, we do alot of trans atlantic flighing, does

> > > anyone have any useful information on how to avoid infections on

> > > airplanes, should wear a mask, how llikely is she to get sick

> > > after air travel? Dont long trans atlantic flights put her at extra

> > > risk???

> > >

> > > thanks for any help anyone can offer as I am really worried, and I

> > > dont want to live in a bubble or home educate or anything, but just

> > > want to know the best way to live for us.

> > > Thanks,

> > > Sharon, mother of , CF, 6 months

> > >

> > >

> > >

> > > PLEASE do not post religious emails to the list.

> > >

> > >

> > > -------------------------------------------

> > >

> > >

> > > The opinions and information exchanged on this list should

> > > IN NO WAY

> > > be construed as medical advice.

> > >

> > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> > TREATMENTS.

> > >

> > > --------------------------------------------------

> > >

> > >

> > >

[Guest guest]

In a message dated 8/16/01 9:12:14 AM Mountain Daylight Time,

smithcranfield@... writes:

<< But I can just see it now,

people looking at me saying, she has compulsive behaviour disorder, (clean

freak) which I am not but some things I guess we shold be doing for our

kids, even if we do get the odd funny look!!! >>

I know what you mean....and every time I do something like this that draws

attention, I just have to remind myself that I won't ever see these people

again.... lol. Carey

[Guest guest]

Sharon

I agree wholeheartedly about the lack of information on practical matters.

We have travelled by air a few times but I have been worried about Alison

catching something. A national air travel health organisation in the UK is

recommending the use of masks by everyone who travels by air.

from Scotland

Mum to (11 no CF) and Alison (7 with CF)

Re: Hi, I am a new member to CF parents

>

>

> > Hi Sharon,

> > I am happy you found this list...there is so much great support here.

> Have you

> > asked your CF clinic about the plane trips? They may have some ideas,

> maybe

> > even a round of antibiotics, flu shots etc in advance of a flight. In

my

> > experience, most things I've picked up from planes have been viral, but

it

> can

> > still set off a secondary infection in the CF kids especially.

> > How is your little girl doing now?

> > Jane mom of (10), Tony (9), (6), Meredith (4) (all no cf),

> Eleanora

> > (22 mos) rad/ftt/?cf and one due in November

> >

> > smithcranfield@... wrote:

> >

> > > Hi, My daughter, has CF. She is just 6 months old and we only

> > > found out about 1 month ago. So this is all very new to us. I have

> > > loads of questions, and maybe some of you can help me as the doctors

> > > are not being specific enough for me.

> > >

> > > Firstly, how do I protect my home from pseudomonas and staph. I need

> > > to know how to keep my house extra clean. what special things should

> > > I be doing, should I get rid of my house plants, should i dry off

> > > everything that comes out of the dishwasher, that isnt fully dry,

> > > should i get rid of squirty bath toys, that are difficult to clean???

> > > I hope these dont seem like silly questions, but I am just so

> > > confused. How clean should clean be?? Should we take off our shoes

> > > before comming in the house?

> > >

> > > Second, Air travel, we do alot of trans atlantic flighing, does

> > > anyone have any useful information on how to avoid infections on

> > > airplanes, should wear a mask, how llikely is she to get sick

> > > after air travel? Dont long trans atlantic flights put her at extra

> > > risk???

> > >

> > > thanks for any help anyone can offer as I am really worried, and I

> > > dont want to live in a bubble or home educate or anything, but just

> > > want to know the best way to live for us.

> > > Thanks,

> > > Sharon, mother of , CF, 6 months

> > >

> > > PLEASE do not post religious emails to the list.

> > >

> > > -------------------------------------------

> > >

> > > The opinions and information exchanged on this list should

> > > IN NO WAY

> > > be construed as medical advice.

> > >

> > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> > >

> > > --------------------------------------------------

> > >

> > >

> > >

[Guest guest]

Sharon,

I remember feeling the same way especially when we couldn't get rid of the

psuedomonas. I would do and buy everything I could find that would say

antibacterial. But you can't keep you daughter in a bubble psuedomonas is

everywhere. The best prevention is good old fashion hand washing. I also

think washing the sheets a lot help too. I had an adult CF person tell me

that one and I think it makes sense because when the had psuedomonas and the

sleep at night and drawled on the pillows they would reinfect themselves.

Also put tooth brushes in the dishwasher a lot of just soak them in hot water

helps to but you won't have to worry about that for a while. I hope this has

helped. Deb mom of w/CF, Lynzie wo/CF and Natalynn w/CF

[Guest guest]

In a message dated 8/15/01 9:37:20 AM Central Daylight Time,

aberdeen95@... writes:

<< Regarding the staph, we have become used to it. Fiona cultures it for

four years now, it doesn't cause real problems and I think that it

helps to keep the PA away from Fiona's lung. >>

Torsten,

Why do you say this? Because my oldest just did her first bronchoscope and

they found staph but No psuedomonas. Deb Mom of w/CF, Lynzie wo/CF

and Natalynn w/CF

[Guest guest]

Wow, thats cool, I am going to get one of them!!!

Thanks

Sharon

Re: Hi, I am a new member to CF parents

> Regarding Grocery Carts, we use this cover:

>

> http://www.cleanshopper.com/howtoorder.htm

>

> Everyone in the store just wants to know where they can get one.

> There's another brand out there that may be even better, but I don't

> know where to get it. No store I know of sells them.

>

> Ann, Mommy of Joy w/CF at almost 21 months

>

>

> > The clorox on the grocery cart is a good idea, But I can just see

> it now,

> > people looking at me saying, she has compulsive behaviour disorder,

> (clean

> > freak) which I am not but some things I guess we shold be doing for

> our

> > kids, even if we do get the odd funny look!!!

> > Thanks, Sharon, Mum of 6 months wcf and 2 wocf

>

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>