Re: CF Friends....advantages

[Guest guest]

LOL n.....

I believe that the social advantages outway the infection rules....with

exceptions of course.

It brings up two helpful points though....

1. Make sure you know what your child or the child if old enough, cultures

2. If you want to be around others Cfers..it teaches good hygeine

measures....Covering your mouth....proper disposal of mucus goo...aka...don't

just spit it out of the ground in a group of people.....YES, I have seen this

done ( Guys think this is cool or something...LOL )...Tried it but it always

stuck to my lips and splattered on my face...LOL

3. We have also found that teens with CF are more compliant about their

treatment if they persoannlly know someone else who is dealing with these

issues....

It gives them special one on one times to whine about Cf.....sure telling no

n-Cfers ( Parents, doctors, nurses )is good but they NEVER truely

understand....

Jut make sure you don't SHARE items....food, drink, spit ( teens know what I

am talking about although I shouldn't be one to say this as I am married to a

CFer..LOL)

Also if you meet with CFers its a good idea ( or heck my hubby and I carry it

to Cf clinic and to the hospital for appts) a small trial size bottle of hand

sanitizer. You just slip it in your purse or pocket and wsh your hands

frequently....

Like I said these are my feelings...I know some freak at the thought of

others with CF meeting....but you cannot live your life in a bubble.

My other observation in planning events are that CF adults are much easier to

get to meet b/c they grew up going to camp and hanging out in the hospital

etc....

The poor kiddos today are plagued by the CF teams ( Not all but quite a lot )

banning contact. Thats well and good and I understand their thought process

but socal interactions are important too.

Besides...think about it...at clinic CFers are piled into a room and their

could be 10 Cepacia Patients in their and you would never know it....they

don't look any diferent than us.

So don't automatically BAN Contact....I encourage a CF camp at least once in

a CF Childs life.... camps now a days won't allow any patients with resistant

buggers or those who do not have pseudo to attend.

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

I agree with this letter, my daughter is 19 1/2 years now and I oftenbabysat my

friends 2 children with CF, my daughter never caught anything from them. One of

them had MRSA and one had PA, they even spent the night several times. They

never slept in the same room with my daughterbut the siblings did as they also

only lived in a 2 bedroom apt. with their mom. And neither ever caught what the

other had. I was sad when my daughter could no longer have contact with other

children that were going through the same thing as her. She could be sitting

next to a person with CF at the movies, grab the cart at the grocery store that

someone else touched , how could I ever stop her from being around people ,I

don't know everyone that has CF in our town. She catches more illness's from a

friend that doesn't have CF, then she ever caught from children she was around

that had CF.

And as for checking the CF gene, she does not have any genes that we can find

therefore testing my other 2 children is out of the question. And now I have

grandchildren (not her's) and we canonly do sweat tests on them as we have no

place to look for the gene. That is very frustating but not much I can do about

that, I deal with it and go on.

I am glad for those of you who can find your gene marker it seems to make lufe

easier for you.

judy

Re: CF Friends....advantages

LOL n.....

I believe that the social advantages outway the infection rules....with

exceptions of course.

It brings up two helpful points though....

1. Make sure you know what your child or the child if old enough, cultures

2. If you want to be around others Cfers..it teaches good hygeine

measures....Covering your mouth....proper disposal of mucus goo...aka...don't

just spit it out of the ground in a group of people.....YES, I have seen this

done ( Guys think this is cool or something...LOL )...Tried it but it always

stuck to my lips and splattered on my face...LOL

3. We have also found that teens with CF are more compliant about their

treatment if they persoannlly know someone else who is dealing with these

issues....

It gives them special one on one times to whine about Cf.....sure telling no

n-Cfers ( Parents, doctors, nurses )is good but they NEVER truely

understand....

Jut make sure you don't SHARE items....food, drink, spit ( teens know what I

am talking about although I shouldn't be one to say this as I am married to a

CFer..LOL)

Also if you meet with CFers its a good idea ( or heck my hubby and I carry it

to Cf clinic and to the hospital for appts) a small trial size bottle of hand

sanitizer. You just slip it in your purse or pocket and wsh your hands

frequently....

Like I said these are my feelings...I know some freak at the thought of

others with CF meeting....but you cannot live your life in a bubble.

My other observation in planning events are that CF adults are much easier to

get to meet b/c they grew up going to camp and hanging out in the hospital

etc....

The poor kiddos today are plagued by the CF teams ( Not all but quite a lot )

banning contact. Thats well and good and I understand their thought process

but socal interactions are important too.

Besides...think about it...at clinic CFers are piled into a room and their

could be 10 Cepacia Patients in their and you would never know it....they

don't look any diferent than us.

So don't automatically BAN Contact....I encourage a CF camp at least once in

a CF Childs life.... camps now a days won't allow any patients with resistant

buggers or those who do not have pseudo to attend.

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

[Guest guest]

Becky,

Thank you for sharing this with us. As parents or grand parents, we

get wrapped up in the physical health and sometimes forget to pay

attention to the emotional health.

Take care,

Gale

> LOL n.....

>

> I believe that the social advantages outway the infection

rules....with

> exceptions of course.

> It brings up two helpful points though....

> 1. Make sure you know what your child or the child if old enough,

cultures

> 2. If you want to be around others Cfers..it teaches good hygeine

> measures....Covering your mouth....proper disposal of mucus

goo...aka...don't

> just spit it out of the ground in a group of people.....YES, I have

seen this

> done ( Guys think this is cool or something...LOL )...Tried it but

it always

> stuck to my lips and splattered on my face...LOL

> 3. We have also found that teens with CF are more compliant about

their

> treatment if they persoannlly know someone else who is dealing with

these

> issues....

> It gives them special one on one times to whine about Cf.....sure

telling no

> n-Cfers ( Parents, doctors, nurses )is good but they NEVER truely

> understand....

>

> Jut make sure you don't SHARE items....food, drink, spit ( teens

know what I

> am talking about although I shouldn't be one to say this as I am

married to a

> CFer..LOL)

> Also if you meet with CFers its a good idea ( or heck my hubby and

I carry it

> to Cf clinic and to the hospital for appts) a small trial size

bottle of hand

> sanitizer. You just slip it in your purse or pocket and wsh your

hands

> frequently....

>

> Like I said these are my feelings...I know some freak at the

thought of

> others with CF meeting....but you cannot live your life in a bubble.

> My other observation in planning events are that CF adults are much

easier to

> get to meet b/c they grew up going to camp and hanging out in the

hospital

> etc....

> The poor kiddos today are plagued by the CF teams ( Not all but

quite a lot )

> banning contact. Thats well and good and I understand their thought

process

> but socal interactions are important too.

> Besides...think about it...at clinic CFers are piled into a room

and their

> could be 10 Cepacia Patients in their and you would never know

it....they

> don't look any diferent than us.

> So don't automatically BAN Contact....I encourage a CF camp at

least once in

> a CF Childs life.... camps now a days won't allow any patients with

resistant

> buggers or those who do not have pseudo to attend.

>

> Becki

> YOUR FAVORITE LilGooberGirl

> YOUNGLUNG EMAIL SUPPORT LIST

> www.topica.com/lists/younglung

> Pediatric Interstitial Lung Disease Society

> http://groups.yahoo.com/group/InterstitialLung_Kids/

>

>

>