Relatives and healthy kids

[Guest guest]

I am brand new to CF parents - Our daughter Eleanor was diagnosed a

week after her birth - she was born with a strangulated, perforated

bowel, a long, horrific story..... but she's doing incredibly well

now, (she's nearly a year old) and I am so thankful! I am also so

thankful that my two older children tested negative ...

My questions for the veterans out there center around the rest of the

family.

1) Do you get together with extended family at Christmas, etc? -

Everyone has kids, and it seems as if someone is always sick... We

have been asked by relatives a few times to host either Thanksgiving

or Christmas this year, and it scares me to death. This year we've

asked that someone else host the holidays, so that if someone is

sick - we would be the ones to stay home, rather than being put in

the position of asking someone who is sick not to come. I've

heard " through the grapevine " that some think we are overreacting to

this illness, and maybe we are. On the hand, last year, even taking

every precaution we could think of, Eleanor caught RSV @ 3 months of

age- and watching that tiny little baby cough just ripped my heart

out. - How do you handle this?

2) How do you deal with a healthy, older child that " wants " to be

sick. My 6 yr old daughter almost " wishes " to be sick. Her

4 yr old brother doesn't have CF, but he gets a really bad case of

croup every few weeks during the winter, and has been doing this

since he was 18 months old, and of course her baby sister has CF. So

far I have played along to a limited extent, giving her some extra

attention, taking her temperature, etc. Does anyone else see

this?

[Guest guest]

In a message dated 10/27/2002 6:06:11 PM Central Standard Time,

blruf@... writes:

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick. Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF. So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone else see

> this?

Hi I have 3 girls and two of my girls have CF my middle child does not and

she many times have said to me she it's not fair I wish I had CF. I have told

her one day she will see that it is know fun. Well, the time has come the

other day when my oldest was doing her nose irrigation's she said

(my oldest with CF) I am so glad I am not you I would hate to have water

going up my nose. All I said to her was you never know you might but at least

she least realizes she really is the lucky one. The thinks she miss is not

getting out of school to go to doctor appointments and getting prizes out of

the treasure box after doing PFT. But she also know she doesn't have to do

shots. So the older they get they will realize they are the lucky ones. Deb A

[Guest guest]

In a message dated 10/27/2002 6:06:11 PM Central Standard Time,

blruf@... writes:

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick. Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF. So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone else see

> this?

Hi I have 3 girls and two of my girls have CF my middle child does not and

she many times have said to me she it's not fair I wish I had CF. I have told

her one day she will see that it is know fun. Well, the time has come the

other day when my oldest was doing her nose irrigation's she said

(my oldest with CF) I am so glad I am not you I would hate to have water

going up my nose. All I said to her was you never know you might but at least

she least realizes she really is the lucky one. The thinks she miss is not

getting out of school to go to doctor appointments and getting prizes out of

the treasure box after doing PFT. But she also know she doesn't have to do

shots. So the older they get they will realize they are the lucky ones. Deb A

[Guest guest]

In a message dated 10/27/2002 6:06:11 PM Central Standard Time,

blruf@... writes:

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick. Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF. So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone else see

> this?

Hi I have 3 girls and two of my girls have CF my middle child does not and

she many times have said to me she it's not fair I wish I had CF. I have told

her one day she will see that it is know fun. Well, the time has come the

other day when my oldest was doing her nose irrigation's she said

(my oldest with CF) I am so glad I am not you I would hate to have water

going up my nose. All I said to her was you never know you might but at least

she least realizes she really is the lucky one. The thinks she miss is not

getting out of school to go to doctor appointments and getting prizes out of

the treasure box after doing PFT. But she also know she doesn't have to do

shots. So the older they get they will realize they are the lucky ones. Deb A

[Guest guest]

-Welcome : )

My daughter was born premature with a perforated bowel- " meconium

illeus " so Im sure I can relate to your " long story " . Touching on

the Holiday thing- I know from experience that family get togethers

are not always the best things for a CF child those first couple

years of life. We went to visit family her 1st and 2nd Christmas-

both times she ended up in the hospital in January. And that was with

my family all seemingly in good health. I have decided just to stay

home- at least for Christmas and let others come our way- HEALTHY

that is. I try to make up for lack of family by instituting our own

family traditions.

I have 2 older ones without Cf like you. I think one of the

ways to get your older ones not feeling like they are lacking in

attention is by letting them participate " as much as they can " in

the care of the little one- it makes them feel important and helpful.

Again Welcome,

Deborah McClintock- homeschooling mother of 3- the youngest -

Elisabeth -4 with CF

-- In cfparents@y..., " blruf " wrote:

> I am brand new to CF parents - Our daughter Eleanor was diagnosed a

> week after her birth - she was born with a strangulated, perforated

> bowel, a long, horrific story..... but she's doing incredibly well

> now, (she's nearly a year old) and I am so thankful! I am also so

> thankful that my two older children tested negative ...

>

> My questions for the veterans out there center around the rest of

the

> family.

>

> 1) Do you get together with extended family at Christmas, etc? -

> Everyone has kids, and it seems as if someone is always sick... We

> have been asked by relatives a few times to host either

Thanksgiving

> or Christmas this year, and it scares me to death. This year we've

> asked that someone else host the holidays, so that if someone is

> sick - we would be the ones to stay home, rather than being put in

> the position of asking someone who is sick not to come. I've

> heard " through the grapevine " that some think we are overreacting

to

> this illness, and maybe we are. On the hand, last year, even

taking

> every precaution we could think of, Eleanor caught RSV @ 3 months

of

> age- and watching that tiny little baby cough just ripped my heart

> out. - How do you handle this?

>

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick.

Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF.

So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone else see

> this?

[Guest guest]

REgarding family:

Yes, we get together with extended family on holidays (even though

both my sisters also have kids with CF) (except one holiday when we

had a false lab report..a misidentification error, where we thought my

kids had cepacia)

RSV is a concern at any time....esp at walmart, etc. rotavirus at

your child's age is also an issue. and, of course, the flu. Is she

getting synagis to prevent RSV since she had it as a little one? was

she hospitalized with it? Because Mallory had it twice, both times

really bad, she got synagis til she was 4.

AS far as the siblings...I guess we have been lucky in that

route...never had the problem you mention except with our oldest

adopted child...(in kgarten, she actually stole iv supplies and on the

bus taped up tubing and stuff to her arm to make it look like she was

on ivs!!!!!) That problem, ironically, ended when she herself was

diagnosed with juv. diabetes (JD), in weird way, she got what she

wanted. The other kids are very protective of the kids with CF and we

just have not had the problem. Maybe it helps that my kids without CF

are the oldest kids (now 10 and 8...they were 5 and 3 when their sibs

were diagnosed) and not the youngest in the family. I am just not

sure what is the difference.

HOpe this helps.

Jen

Mommy of 7, 3 with CF, 1 with JD plus two neices with CF

>

> 1) Do you get together with extended family at Christmas, etc? -

> Everyone has kids, and it seems as if someone is always sick... We

> have been asked by relatives a few times to host either Thanksgiving

> or Christmas this year, and it scares me to death. This year we've

> asked that someone else host the holidays, so that if someone is

> sick - we would be the ones to stay home, rather than being put in

> the position of asking someone who is sick not to come. I've

> heard " through the grapevine " that some think we are overreacting to

> this illness, and maybe we are. On the hand, last year, even taking

> every precaution we could think of, Eleanor caught RSV @ 3 months of

> age- and watching that tiny little baby cough just ripped my heart

> out. - How do you handle this?

>

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick. Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF.

So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone

[Guest guest]

REgarding family:

Yes, we get together with extended family on holidays (even though

both my sisters also have kids with CF) (except one holiday when we

had a false lab report..a misidentification error, where we thought my

kids had cepacia)

RSV is a concern at any time....esp at walmart, etc. rotavirus at

your child's age is also an issue. and, of course, the flu. Is she

getting synagis to prevent RSV since she had it as a little one? was

she hospitalized with it? Because Mallory had it twice, both times

really bad, she got synagis til she was 4.

AS far as the siblings...I guess we have been lucky in that

route...never had the problem you mention except with our oldest

adopted child...(in kgarten, she actually stole iv supplies and on the

bus taped up tubing and stuff to her arm to make it look like she was

on ivs!!!!!) That problem, ironically, ended when she herself was

diagnosed with juv. diabetes (JD), in weird way, she got what she

wanted. The other kids are very protective of the kids with CF and we

just have not had the problem. Maybe it helps that my kids without CF

are the oldest kids (now 10 and 8...they were 5 and 3 when their sibs

were diagnosed) and not the youngest in the family. I am just not

sure what is the difference.

HOpe this helps.

Jen

Mommy of 7, 3 with CF, 1 with JD plus two neices with CF

>

> 1) Do you get together with extended family at Christmas, etc? -

> Everyone has kids, and it seems as if someone is always sick... We

> have been asked by relatives a few times to host either Thanksgiving

> or Christmas this year, and it scares me to death. This year we've

> asked that someone else host the holidays, so that if someone is

> sick - we would be the ones to stay home, rather than being put in

> the position of asking someone who is sick not to come. I've

> heard " through the grapevine " that some think we are overreacting to

> this illness, and maybe we are. On the hand, last year, even taking

> every precaution we could think of, Eleanor caught RSV @ 3 months of

> age- and watching that tiny little baby cough just ripped my heart

> out. - How do you handle this?

>

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick. Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF.

So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone

[Guest guest]

WELCOME BRENDA,

You will find this a very caring & knowledgeable group. Folks you can relate

too & help each other. Enjoy!!

LOVE & HUGS, GrandmomBEV

Re: Relatives and healthy kids

Hi ,

welcome to the list! And sorry for the delayed approval of your

introduction. To keep unwanted spam from the list the first message

from a new member requires an approval from me or . From now

on all your messages will go straight through to the list.

Many of us are of the opinion that the first year is the most

difficult one and I don't think that you are overreacting at all. At

least for the first year it's very much okay that another family

member hosts the holidays.

Can't help you on the other question, Fiona is our only child. But

for sure others will share their experiences.

Peace

Torsten

> I am brand new to CF parents - Our daughter Eleanor was diagnosed a

> week after her birth - she was born with a strangulated, perforated

> bowel, a long, horrific story..... but she's doing incredibly well

> now, (she's nearly a year old) and I am so thankful! I am also so

> thankful that my two older children tested negative ...

>

> My questions for the veterans out there center around the rest of

the

> family.

>

> 1) Do you get together with extended family at Christmas, etc? -

> Everyone has kids, and it seems as if someone is always sick... We

> have been asked by relatives a few times to host either

Thanksgiving

> or Christmas this year, and it scares me to death. This year we've

> asked that someone else host the holidays, so that if someone is

> sick - we would be the ones to stay home, rather than being put in

> the position of asking someone who is sick not to come. I've

> heard " through the grapevine " that some think we are overreacting

to

> this illness, and maybe we are. On the hand, last year, even

taking

> every precaution we could think of, Eleanor caught RSV @ 3 months

of

> age- and watching that tiny little baby cough just ripped my heart

> out. - How do you handle this?

>

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick.

Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF.

So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone else see

> this?

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]

WELCOME BRENDA,

You will find this a very caring & knowledgeable group. Folks you can relate

too & help each other. Enjoy!!

LOVE & HUGS, GrandmomBEV

Re: Relatives and healthy kids

Hi ,

welcome to the list! And sorry for the delayed approval of your

introduction. To keep unwanted spam from the list the first message

from a new member requires an approval from me or . From now

on all your messages will go straight through to the list.

Many of us are of the opinion that the first year is the most

difficult one and I don't think that you are overreacting at all. At

least for the first year it's very much okay that another family

member hosts the holidays.

Can't help you on the other question, Fiona is our only child. But

for sure others will share their experiences.

Peace

Torsten

> I am brand new to CF parents - Our daughter Eleanor was diagnosed a

> week after her birth - she was born with a strangulated, perforated

> bowel, a long, horrific story..... but she's doing incredibly well

> now, (she's nearly a year old) and I am so thankful! I am also so

> thankful that my two older children tested negative ...

>

> My questions for the veterans out there center around the rest of

the

> family.

>

> 1) Do you get together with extended family at Christmas, etc? -

> Everyone has kids, and it seems as if someone is always sick... We

> have been asked by relatives a few times to host either

Thanksgiving

> or Christmas this year, and it scares me to death. This year we've

> asked that someone else host the holidays, so that if someone is

> sick - we would be the ones to stay home, rather than being put in

> the position of asking someone who is sick not to come. I've

> heard " through the grapevine " that some think we are overreacting

to

> this illness, and maybe we are. On the hand, last year, even

taking

> every precaution we could think of, Eleanor caught RSV @ 3 months

of

> age- and watching that tiny little baby cough just ripped my heart

> out. - How do you handle this?

>

> 2) How do you deal with a healthy, older child that " wants " to be

> sick. My 6 yr old daughter almost " wishes " to be sick.

Her

> 4 yr old brother doesn't have CF, but he gets a really bad case of

> croup every few weeks during the winter, and has been doing this

> since he was 18 months old, and of course her baby sister has CF.

So

> far I have played along to a limited extent, giving her some extra

> attention, taking her temperature, etc. Does anyone else see

> this?

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]

Thank you.

(I LOVE the name Fiona - reminds me of Brigadoon!)

> Hi ,

>

> welcome to the list! And sorry for the delayed approval of your

> introduction. To keep unwanted spam from the list the first message

> from a new member requires an approval from me or . From now

> on all your messages will go straight through to the list.

>

> Many of us are of the opinion that the first year is the most

> difficult one and I don't think that you are overreacting at all. At

> least for the first year it's very much okay that another family

> member hosts the holidays.

> Can't help you on the other question, Fiona is our only child. But

> for sure others will share their experiences.

>

> Peace

> Torsten

>

>

>

> > I am brand new to CF parents - Our daughter Eleanor was diagnosed a

> > week after her birth - she was born with a strangulated, perforated

> > bowel, a long, horrific story..... but she's doing incredibly well

> > now, (she's nearly a year old) and I am so thankful! I am also so

> > thankful that my two older children tested negative ...

> >

> > My questions for the veterans out there center around the rest of

> the

> > family.

> >

> > 1) Do you get together with extended family at Christmas, etc? -

> > Everyone has kids, and it seems as if someone is always sick... We

> > have been asked by relatives a few times to host either

> Thanksgiving

> > or Christmas this year, and it scares me to death. This year we've

> > asked that someone else host the holidays, so that if someone is

> > sick - we would be the ones to stay home, rather than being put in

> > the position of asking someone who is sick not to come. I've

> > heard " through the grapevine " that some think we are overreacting

> to

> > this illness, and maybe we are. On the hand, last year, even

> taking

> > every precaution we could think of, Eleanor caught RSV @ 3 months

> of

> > age- and watching that tiny little baby cough just ripped my heart

> > out. - How do you handle this?

> >

> > 2) How do you deal with a healthy, older child that " wants " to be

> > sick. My 6 yr old daughter almost " wishes " to be sick.

> Her

> > 4 yr old brother doesn't have CF, but he gets a really bad case of

> > croup every few weeks during the winter, and has been doing this

> > since he was 18 months old, and of course her baby sister has CF.

> So

> > far I have played along to a limited extent, giving her some extra

> > attention, taking her temperature, etc. Does anyone else see

> > this?

>

>

>

> 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 , I am new to the list also and I have found it very

reasuring that I can come here and read the posts and really relate.

We are also new to CF, my 13 yr old daughter Amber was Diagnosed

just last yr at this time. We have had one hospitilization last

March and she even came home after a week in the hospital and we did

her IV antibiotics for another week.

As far as Holidays go, we need to probably limit the amount of

people she is exposed to during that time. I never really thought

about that until your post. She is around a lot of other kids at

school and there's nothing I can do about that, but have tried to

tell her she needs to stay away from the kids that seem to be coming

down with any thing. The last thing she wants is to be back in the

hospital, she hated the pic(ms)line they put in her. I know it will

be hard now with the holidays because I have 3 grandkids under the

age of four that I probably won't get to see, and she loves her

nieces and nephew, so will be hard on her also. The only thing that

matters to me right now is just keeping her healthy. My family has

been very supportive and always let me know if they haven't been

feeling well, and maybe we should come another time. I really

respect them for that.

This is a great group, welcome.

Margo

In cfparents@y..., blruf@a... wrote:

> Thank you.

>

> (I LOVE the name Fiona - reminds me of Brigadoon!)

>

> > Hi ,

> >

> > welcome to the list! And sorry for the delayed approval of your

> > introduction. To keep unwanted spam from the list the first

message

> > from a new member requires an approval from me or . From

now

> > on all your messages will go straight through to the list.

> >

> > Many of us are of the opinion that the first year is the most

> > difficult one and I don't think that you are overreacting at

all. At

> > least for the first year it's very much okay that another family

> > member hosts the holidays.

> > Can't help you on the other question, Fiona is our only child.

But

> > for sure others will share their experiences.

> >

> > Peace

> > Torsten

> >

> >

> >

> > > I am brand new to CF parents - Our daughter Eleanor was

diagnosed a

> > > week after her birth - she was born with a strangulated,

perforated

> > > bowel, a long, horrific story..... but she's doing incredibly

well

> > > now, (she's nearly a year old) and I am so thankful! I am

also so

> > > thankful that my two older children tested negative ...

> > >

> > > My questions for the veterans out there center around the rest

of

> > the

> > > family.

> > >

> > > 1) Do you get together with extended family at Christmas,

etc? -

> > > Everyone has kids, and it seems as if someone is always

sick... We

> > > have been asked by relatives a few times to host either

> > Thanksgiving

> > > or Christmas this year, and it scares me to death. This year

we've

> > > asked that someone else host the holidays, so that if someone

is

> > > sick - we would be the ones to stay home, rather than being

put in

> > > the position of asking someone who is sick not to come. I've

> > > heard " through the grapevine " that some think we are

overreacting

> > to

> > > this illness, and maybe we are. On the hand, last year, even

> > taking

> > > every precaution we could think of, Eleanor caught RSV @ 3

months

> > of

> > > age- and watching that tiny little baby cough just ripped my

heart

> > > out. - How do you handle this?

> > >

> > > 2) How do you deal with a healthy, older child that " wants " to

be

> > > sick. My 6 yr old daughter almost " wishes " to be

sick.

> > Her

> > > 4 yr old brother doesn't have CF, but he gets a really bad

case of

> > > croup every few weeks during the winter, and has been doing

this

> > > since he was 18 months old, and of course her baby sister has

CF.

> > So

> > > far I have played along to a limited extent, giving her some

extra

> > > attention, taking her temperature, etc. Does anyone else see

> > > this?

> >

> >

> >

> > 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 there,

> 1) Do you get together with extended family at Christmas, etc? -

> Everyone has kids, and it seems as if someone is always sick...

Yes - I know, and I know of no way around it! I do host the family/bible

group get togethers, and am (generally) blessed by a group of people who

will do the right thing by my daughter. I am travelling to a family party

in December - this one makes me nervous. It's my grandmother's 85th

birthday, around half the adults on that side of my family smoke, and we're

having a BBQ at my grandmother's house. (She's one of the smokers!) As

long as we stay outside I'm not too tense about the smoking thing, but if we

get there after 750km travelling to discover that someone has some

cold/virus/whatever I'm going to be really pissed off!

>

> 2) How do you deal with a healthy, older child that " wants " to be

> sick.

I offer my 10 year old the blood tests, the extra immunisations, the

hospital visits, the flushing out of the bowel and she generally stops

whinging that Sian is " lucky " to get all this extra stuff/attention. If my

youngest (wcf) isn't around, I ask whether she would really like to have a

disease that has been known to kill people younger than she is. That really

shuts her up!! (Yes, I know, I'm an evil, cruel, heartless bitch - you

don't need to tell me.....)

Love you all,

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD.

Currently housing 2 extra people and one mastiff dog for the foreseeable

future. (Feeling somewhat cranky and not a little depressed.)

Canberra Australia