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]

As for visiting with relatives, I am with you. I would not host the event in

that case. One year my mom drive five hours to be here for the holidays but got

sick on the way. She never even came to the house but went to a hotel until she

was better and then went home. I felt terrible. However, she would not have

come over even if I had begged her (which I wouldn't have) because she wouldn't

do anything to expose my daughter. As your child gets older and you know her

patterns you may feel better about hosting a get together with a warning that

sick people need not attend.

As to your other question, I have no ideas other than what you are doing. My

son has this tendency to a certain extent too. Does your older child have a

doctor kit? Maybe she could doctor her dolls or something and be close to the

" sickness " in that way?

Lori in Florida--Welcome to our group!

Relatives and healthy kids

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]

As for visiting with relatives, I am with you. I would not host the event in

that case. One year my mom drive five hours to be here for the holidays but got

sick on the way. She never even came to the house but went to a hotel until she

was better and then went home. I felt terrible. However, she would not have

come over even if I had begged her (which I wouldn't have) because she wouldn't

do anything to expose my daughter. As your child gets older and you know her

patterns you may feel better about hosting a get together with a warning that

sick people need not attend.

As to your other question, I have no ideas other than what you are doing. My

son has this tendency to a certain extent too. Does your older child have a

doctor kit? Maybe she could doctor her dolls or something and be close to the

" sickness " in that way?

Lori in Florida--Welcome to our group!

Relatives and healthy kids

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]

I come from a very large family and we do Christmas at someone's house every

year. My family is great about understanding that Jack simply can't even be

around someone who has a cold. The big joke is the reason everyone is so

careful is that noone wants to be the one to give Jack his first cold. If

someone thinks you are overreacting-TOUGH! It is not their child, they are not

in the situation you are and really have no clue what you have been through

and/or are going through. We call before we go anywhere to see how everyone is.

One Christmas, everyone at my mother's had been sick the week before we came.

We still wouldn't stay at her house because we were afraid the germs would still

be there. I do have to say, our families are very supportive and do understand

why we have to be so careful with Jack. You need to do what you feel

comfortable with, your family will eventually ( I hope!) respect and understand

why you are doing this.

Good Luck!

Kim, mom to Jack 4, wcf

Relatives and healthy kids

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]

--- 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.

> >

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

> >

> >

> >