Re: Question

June 1, 2001

I bet the only job that woman had in the CF clinic was dumping Trash!!!

Obviously right!!!

Just when you think someone's got a clue, bingo they open their mouth and start

rambling off garbage!!!

Those are the people you really want to Dope slap!

I'm no expert, but I too have not heard about children coughing up blood. Maybe

some do for different reasons, I'm sure some of the folk here can elaborate on

this subject.

BTW...have you gone to your pre-school yet and talked to them about Santosh and

what you would like the school to know and help educate the other parents about

hygene and illnesses. That may help lessen some of the stress about having your

child start school and the worries that go with it.

Take Care,

Stein.......mom to CF (! yr) & Tori wo/CF (3 1/2 yr)

Question

Wow - I've come out of lurking status for sure with two posts in two days.

I have a question for the group. Yesterday I was at a playground and ran

into a woman who had a son Santosh's age who will coincidentally be starting

preschool in his class. I decided to mention that Santosh has CF, hoping to

drop little hints about washing hands and not bringing your child to school

sick, etc.

She told me she had " worked in a CF clinic " so I assumed she knew something

about the disease. To my HORROR, at some point in the conversation she

said, " well, you'd better tell the other kids about it, in case he starts

coughing up a lot of blood or something. "

My question is - is it common for 3-4 year olds to cough up blood? I know

several CF children in this age group and have NEVER heard of them coughing

up blood, despite various other complications (e.g. surgery to remove a

blockage, feeding tubes, pneumonia, bronchoscopies, etc.). I did not think

that children this young " coughed up blood " on a normal day-to-day basis. I

know they cough up other things, but LOTS of blood? Please correct me if I'm

wrong and educate me about what would bring that on.

And secondly, (this is just a comment) if my 4 year old child WERE coughing

up " a lot of blood " I don't think I'd be sending him in to a class of

preschoolers - first of all I wouldn't want to scare other children and make

my own be a pariah, and secondly, I would hope to get it under control or

homeschool him.

After I managed to say, " He's not at that point yet. " She added, " Oh, but he

LOOKS so healthy, what IS wrong with him? " I squeaked out that he has some

GI issues.

I know lots of you have dealt with these comments but this is my first

go-round. I'm really horrified - I cannot find another word. I usually

don't tell people Santosh has CF in order that they see him like other kids.

I guess the fact that she said she had worked in a CF clinic made me think

that she had had some experience, but perhaps it was only with adults? Am I

getting worked up over nothing? I know I have to develop a thicker skin and

try to educate, but for now I'm still in shock.

Thanks for any help or suggestions,

Krishnan

Mom to Santosh, 4 in August w/CF and Leela, 2 in August wocf

June 1, 2001

Hi my daughter has never done that and I believe that

to happen with the progression of lung problems

Something that we intend to stall/prevent : ) with

treatments supplements activity etc. I am sure it can

come at any age depending on how the lungs are doing.

Just my opinion by the way : )

--- and Suresh Krishnan

wrote:

> Wow - I've come out of lurking status for sure with

> two posts in two days.

>

> I have a question for the group. Yesterday I was at

> a playground and ran

> into a woman who had a son Santosh's age who will

> coincidentally be starting

> preschool in his class. I decided to mention that

> Santosh has CF, hoping to

> drop little hints about washing hands and not

> bringing your child to school

> sick, etc.

>

> She told me she had " worked in a CF clinic " so I

> assumed she knew something

> about the disease. To my HORROR, at some point in

> the conversation she

> said, " well, you'd better tell the other kids about

> it, in case he starts

> coughing up a lot of blood or something. "

>

> My question is - is it common for 3-4 year olds to

> cough up blood? I know

> several CF children in this age group and have NEVER

> heard of them coughing

> up blood, despite various other complications (e.g.

> surgery to remove a

> blockage, feeding tubes, pneumonia, bronchoscopies,

> etc.). I did not think

> that children this young " coughed up blood " on a

> normal day-to-day basis. I

> know they cough up other things, but LOTS of blood?

> Please correct me if I'm

> wrong and educate me about what would bring that on.

>

> And secondly, (this is just a comment) if my 4 year

> old child WERE coughing

> up " a lot of blood " I don't think I'd be sending him

> in to a class of

> preschoolers - first of all I wouldn't want to scare

> other children and make

> my own be a pariah, and secondly, I would hope to

> get it under control or

> homeschool him.

>

> After I managed to say, " He's not at that point

> yet. " She added, " Oh, but he

> LOOKS so healthy, what IS wrong with him? " I

> squeaked out that he has some

> GI issues.

>

> I know lots of you have dealt with these comments

> but this is my first

> go-round. I'm really horrified - I cannot find

> another word. I usually

> don't tell people Santosh has CF in order that they

> see him like other kids.

> I guess the fact that she said she had worked in a

> CF clinic made me think

> that she had had some experience, but perhaps it was

> only with adults? Am I

> getting worked up over nothing? I know I have to

> develop a thicker skin and

> try to educate, but for now I'm still in shock.

>

> Thanks for any help or suggestions,

>

> Krishnan

> Mom to Santosh, 4 in August w/CF and Leela, 2 in

> August wocf

>

=====

, Mommy Of The Great!

__________________________________________________

June 1, 2001

,

First, let me just say how happy I am that you are " out of lurking "

and into posting.

Perhaps this woman only had experience with adults with cf, perhaps

she had this experience years ago when there was less control over

the progression of the disease, or perhaps her " experience " was

limited to the front desk and she only heard the really bad stories

about the patients who attended clinic there. (I doubt if the staff

gossips about how GREAT so-and-so is doing and how symptom-free some

of the kids are, but rather yaks about the really unusually

frightening cases instead.)

I would bet that she isn't a nurse, probably isn't even one of what

we'd call the " cf team " (dietician, social worker, etc.) or she would

have said so. I'm not making excuses for her obvious ignorance, I'm

just saying that some people are GENUINELY IGNORANT.

And no, it's not " common " for preschoolers with cf to cough up blood,

but unfortunately, I am sure that it does happen to some kids. I

know that lung-bleeds are more " common " in older people with cf. I

believe they will be less common in time, as treatments improve.

And I think you handled the situation very well by not telling the

lady that she's an insensitive dim-wit. Good for you!

~

>

> She told me she had " worked in a CF clinic " so I assumed she knew

something

> about the disease. > Krishnan

> Mom to Santosh, 4 in August w/CF and Leela, 2 in August wocf

June 24, 2001

Hi Tammy

-I also have a 10 year old boy with cf so I would also like to know

more about the reprodution thing.

But as to your questions about chest pain. My son also has chest

pain a lot. Mainly when he has been coughing a lot which is

understandable but also he will complain about chest pain sometimes

when he hasn't been coughing much. I've noticed that a treatment

with his PEP or cpt can help this, I think he gets the pain when

there is some mucus in his chest that he just hasn't been able to

clear through the normal course of the day with coughing and

exercise. He also complains of headaches a lot when he is not

feeling too good and I think that this is caused because he is having

a hard time breathing and he is not getting enough oxygen.

Well anyway probably not much of a help to you but I just thought I'd

share my experiences.

NZ mum to Zach nearly 10wcf and Rikki-Lee 8wcf

-- In cfparents@y..., " etneal " <etneal@s...> wrote:

> can anyone tell me about reproduction in males with cf. don't know

very much about it. have son that is 10 with cf.

> and does you children have chest pains often? mine does sometimes,

it worries me but doc always seems to think its the cough or med. is

this true? my family has history of heart disease. sometimes his head

in the back hurts too. am i worrying to much or should i call the doc

everytime he hurts.? thanks

> tammie

>

June 25, 2001

,

I'm no expert on this either, as my son was just diagnosed. Our pulm. told

us that chlorinated pools were safe and beaches were also because of the salt

water. She told us to be really careful with lakes and ponds and " to be on

the safe side " stay away from them all together. That's just my 2 cents - I

hope you are still able to get out & do something fun! Carey - mom to liam -

15 mo. w/ cf

June 25, 2001

,

We use a pool three times a week, nut have never went into a lake,etc. I've

heard they are not good either as they are not germ free. But you may get

better info from the more experienced on this list.

Question

> I was wondering if anyone could tell me weither or not taking my 16

> mos old son that has cf to the lake or river to play in the water

> would harm him. I have read only once on the board something about

> it not being could for them, but never had the docs say anything to

> me. See we are going to visit my mom in KY and we were looking

> forward to going to the river. We alsa live about 1-2 miles from

> lake michigan. Seeing that there is no pool in our tonw and it is so

> expensive to go to the public pools this year we were thinking about

> going to the beach.

>

> 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.

>

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

>

June 25, 2001

We are going to Union Star, ky Near hardensburg

jennifer

> jennifer,

> our doc in ky. said for us not to take our son that has cf. to the

lake. he

> said a mouth ful of water could make him very sick. we decided to

put in a

> small 18 foot pool for us. we love it. we play in it daily. it's

great

> exercise. it was expensive but think about being in the hospital

and taking

> a chance with their health. we got ours at the pool place, they

will work

> with you on payments. don't take the chance. we live in ky. where

are you

> going in ky? hope this helps.

> tammie

> Question

>

> > I was wondering if anyone could tell me weither or not taking my

16

> > mos old son that has cf to the lake or river to play in the water

> > would harm him. I have read only once on the board something

about

> > it not being could for them, but never had the docs say anything

to

> > me. See we are going to visit my mom in KY and we were looking

> > forward to going to the river. We alsa live about 1-2 miles from

> > lake michigan. Seeing that there is no pool in our tonw and it is

so

> > expensive to go to the public pools this year we were thinking

about

> > going to the beach.

> >

> > 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.

> >

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

> >

June 25, 2001

jennifer,

they say since the river and lakes could carry bacteria and contamination

that is why they don't want you in that type of water.

the ocean and well maintained pools are ok.

when we go and stay at a hotel, we don't let brandon swim there, usually

they are the most contaminated.

but we have let him swim in rivers. he is 12 yrs old , and he is ok. no

new bacteria from the water. only if they have warnings out not to swim in

it. then we don't.

but of course a little one will swallow alot of that water.

chris

mom of 3

brandon 12 yrs w cf

On Mon, 25 Jun 2001 22:57:47 -0000, cfparents wrote: