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]

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?

[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]

You are right on! We have a 2 1/2 year old with CF and I have hosted

a few Holidays at our house and am always worried when my brother is

bringing his 4 boys. One of them is Always sick and they

continuously pass Strep around to each other. We now pretty much

have the plan that if they are coming my parents host the holiday and

then we can stay home if the others are sick.

On your second question, my son who is 5 with out CF is jealous of

the time we spend with Hannah. She definately gets more " attention "

but it is in the form of treatments. We just try to have whichever

parent is not doing the treament have quality time with him.

Good luck!

, mom of Hannah 2 1/2 wcf and Tommy 5 wocf

[Guest guest]

You are right on! We have a 2 1/2 year old with CF and I have hosted

a few Holidays at our house and am always worried when my brother is

bringing his 4 boys. One of them is Always sick and they

continuously pass Strep around to each other. We now pretty much

have the plan that if they are coming my parents host the holiday and

then we can stay home if the others are sick.

On your second question, my son who is 5 with out CF is jealous of

the time we spend with Hannah. She definately gets more " attention "

but it is in the form of treatments. We just try to have whichever

parent is not doing the treament have quality time with him.

Good luck!

, mom of Hannah 2 1/2 wcf and Tommy 5 wocf

[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]

-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]

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]

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.

>

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

>

>

>