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Jan,

I understand very well where you are coming from. It just makes good sense

to me too! If your child is well, be thankful. If you can be knowledgeable

about your medical history that is even a better thing. I provided written

documentation to my family and my husbands family when my two girls went

through genetic counseling. I suggested that the siblings be tested to

determine if they were a carrier or not so they would know about passing the

gene on to their children. To my knowledge not one of them had any testing

done. I have a brother and sister and my husband has two sisters and a

brother. The chances are pretty good that one of them could be a carrier.

Ignoring it will not make it go away. You have done all you can do. You

should have a clear conscience knowing that you have advised your childs

bmother. What she does with that information is not your responsibility.

KNOWLEDGE IS POWER!!!

Tina W., mother of , almost 18yoa wcf & , 26yoa ncf

A Vent

My son w/CF is adopted as many of you know. We have an open

adoption arrangement with his birthmother so I have been very

forthcoming about his medical issues and have suggested strongly that

she have her two sons tested (one is oler and another younger than my

son but both live with her). One of the sisters has many of the

symptoms but refused to be tested because she is " well " most of the

time. Neither half brothers to my son have any strong indicators they

have CF but then again neither did my son until he had reoccurring

nasal polyps. His bgrandmother insists there hasn't been any CF in

the family until I mentioned my DS has a rare gene mutation found

primarily of those with ish descent. The bell went off and she

forgot that her ex husband who fathered all of her children was of

ish descent.

Anyhow the bmother wanted the information on the Ambry test because

the boy's pediatrician have never heard of the test. I sent the

website link off several days ago and she called me last night. She

decided that she was not going to her either child tested because

they are so well and that they don't want the possibility of a

preexisting condition to be on their medical records. Perhaps when

they are of age to be married they would have the test and genetic

counseling but not at the moment. So if my pediatrician felt it was

important to my son's health I could have him contact her

pediatrician and they can " duke " out. Huh??? She seemed to think it

was a matter of finger pointing. I told her it wasn't a matter of

finger pointing because it wasn't a question of IF she had a CF

mutation it was a question WHICH one it was and that she is a carrier

and that her other children may be carriers as well. It doesn't make

any difference to my son but she might find it important to know for

the other boys.

To me it is a win win situation. If the boys have been well all

this time- they may only show as carriers. If they do have CF it

benefits them to know now and not later when they are sick. Am I

looking at this the wrong way? What purpose does it serve to NOT do

the testing? I am totally baffled why she is resistant to having the

test done. I swear she thinks it is a " stain " on her family

personally if they are found to be a carrier. Has anyone else found

having CF makes the child and family as tainted? Talk about

discriminating against your own children!

Sorry all - this just annoyed me to no end. Add that to the fact

when I went to sign my son up for traveling football this year they

asked about medical conditions. This was the first year I knew enough

to have to put down cystic fibrosis. He was just diagnosed this

spring at age 7.

jan

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I think that the bmother is absolutely dumb..it is to their advantage

to know. She doesn't have to put a bulletin about it out to all . BUT ,

for future medical info . We should have all we can . It sure helps with

treatments. Bless you .You have done all you can for their family.

I do hope your family is doing well & will continue too

LOVE & HUGS, grandmomBEV

A Vent

My son w/CF is adopted as many of you know. We have an open

adoption arrangement with his birthmother so I have been very

forthcoming about his medical issues and have suggested strongly that

she have her two sons tested (one is oler and another younger than my

son but both live with her). One of the sisters has many of the

symptoms but refused to be tested because she is " well " most of the

time. Neither half brothers to my son have any strong indicators they

have CF but then again neither did my son until he had reoccurring

nasal polyps. His bgrandmother insists there hasn't been any CF in

the family until I mentioned my DS has a rare gene mutation found

primarily of those with ish descent. The bell went off and she

forgot that her ex husband who fathered all of her children was of

ish descent.

Anyhow the bmother wanted the information on the Ambry test because

the boy's pediatrician have never heard of the test. I sent the

website link off several days ago and she called me last night. She

decided that she was not going to her either child tested because

they are so well and that they don't want the possibility of a

preexisting condition to be on their medical records. Perhaps when

they are of age to be married they would have the test and genetic

counseling but not at the moment. So if my pediatrician felt it was

important to my son's health I could have him contact her

pediatrician and they can " duke " out. Huh??? She seemed to think it

was a matter of finger pointing. I told her it wasn't a matter of

finger pointing because it wasn't a question of IF she had a CF

mutation it was a question WHICH one it was and that she is a carrier

and that her other children may be carriers as well. It doesn't make

any difference to my son but she might find it important to know for

the other boys.

To me it is a win win situation. If the boys have been well all

this time- they may only show as carriers. If they do have CF it

benefits them to know now and not later when they are sick. Am I

looking at this the wrong way? What purpose does it serve to NOT do

the testing? I am totally baffled why she is resistant to having the

test done. I swear she thinks it is a " stain " on her family

personally if they are found to be a carrier. Has anyone else found

having CF makes the child and family as tainted? Talk about

discriminating against your own children!

Sorry all - this just annoyed me to no end. Add that to the fact

when I went to sign my son up for traveling football this year they

asked about medical conditions. This was the first year I knew enough

to have to put down cystic fibrosis. He was just diagnosed this

spring at age 7.

jan

-------------------------------------------

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.

------------------------------------

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Hi,

I just wanted to chime in here. I agree with you completely, If it were up to

me anyone with a sib of half sib with CF would be automatically tested to see if

they were a carrier but it's not our choice.

When was dx'd, the CF docs suggested that all of her cousins should

probably be sweat tested and carrier tested. One of my sisters has a son who

was having a lot of health problems and her oldest daughter had a lot of reflux

and respiratory issues when she was small and continuing weight gain probs .

All 3 of her kids were sweat tested and cleared with very low scores, but the

family doc dissuaded her from having them tested to see if they are carriers,

the thinking seemed to be that they could have that testing done when they are

ready to have children. My other sister has 2 sons who are both very healthy

and large no probs with weight or resp. Because of their health and her

hubby's cultural background (he is Native Venezuelan mixed with Spanish and

African or Islander of some type-the family doesn't even remember all the

nationalities they are) the doc refused to even have them sweat tested and told

her that legally, in Florida, he couldn't test them to see if they are carriers

(I think that was just because he doesn't think that they are carriers and had

nothing to do with the law)

But it seems to me that the docs are dissuading people from finding out if they

are carriers. I keep thinking that it is because they insurance companies will

come down on them for ordering " unnecessary testing " But that is just my

opinion and what do I know?

Mom of " Cinderella " , 5 with CF

A Vent

My son w/CF is adopted as many of you know. We have an open

adoption arrangement with his birthmother so I have been very

forthcoming about his medical issues and have suggested strongly that

she have her two sons tested (one is oler and another younger than my

son but both live with her). One of the sisters has many of the

symptoms but refused to be tested because she is " well " most of the

time. Neither half brothers to my son have any strong indicators they

have CF but then again neither did my son until he had reoccurring

nasal polyps. His bgrandmother insists there hasn't been any CF in

the family until I mentioned my DS has a rare gene mutation found

primarily of those with ish descent. The bell went off and she

forgot that her ex husband who fathered all of her children was of

ish descent.

Anyhow the bmother wanted the information on the Ambry test because

the boy's pediatrician have never heard of the test. I sent the

website link off several days ago and she called me last night. She

decided that she was not going to her either child tested because

they are so well and that they don't want the possibility of a

preexisting condition to be on their medical records. Perhaps when

they are of age to be married they would have the test and genetic

counseling but not at the moment. So if my pediatrician felt it was

important to my son's health I could have him contact her

pediatrician and they can " duke " out. Huh??? She seemed to think it

was a matter of finger pointing. I told her it wasn't a matter of

finger pointing because it wasn't a question of IF she had a CF

mutation it was a question WHICH one it was and that she is a carrier

and that her other children may be carriers as well. It doesn't make

any difference to my son but she might find it important to know for

the other boys.

To me it is a win win situation. If the boys have been well all

this time- they may only show as carriers. If they do have CF it

benefits them to know now and not later when they are sick. Am I

looking at this the wrong way? What purpose does it serve to NOT do

the testing? I am totally baffled why she is resistant to having the

test done. I swear she thinks it is a " stain " on her family

personally if they are found to be a carrier. Has anyone else found

having CF makes the child and family as tainted? Talk about

discriminating against your own children!

Sorry all - this just annoyed me to no end. Add that to the fact

when I went to sign my son up for traveling football this year they

asked about medical conditions. This was the first year I knew enough

to have to put down cystic fibrosis. He was just diagnosed this

spring at age 7.

jan

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I have two sisters, a brother, and brother-in-law who could all be

carriers and no one is being tested to see if they are carriers. It

is amazing to me. They all think that this is something that

happened just to Zach. I have tried to explain that our parents

could have had four carriers or only one carrier, but we can't know

until they get the blood tests. I also have a niece who is 11 and

has never even had a cold. (Do I sound jealous??) She weighs more

than me, so I really doubt she could have cf, but she could be a

carrier too. My other niece is four and has had constant

infections. I have suggested that she should be tested, but since

she has not had any digestion problems like Zach, my sister is

convinced she doesn't have cf. All I can do is put the information

out there and hope for the best.

Sara - mommy of Zach 20 months (he is the cutest Eyeore for

Halloween)

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I can relate.

Since Christian's diagnoses my two sisters have completely forgotten about my

family. It is just like you said that they feel it is a stain against our

family. Not to mention they say he " looks fine. " Christian's 12 birthday was

Wednesday and neither of them did so much as send him a birthday card; heck not

even an email, to wish him a happy birthday. He was crushed and says it is

because he has CF that they don't like him. See even though he is young he

already

feels the discrimination from people. I am just so ashamed that it is coming

from my own flesh and blood. How do you explain to a child that it doesn't

matter when up to 2 years ago they were always there for him? He is the first

boy

on my side of the family in 21 years; so he was just a bit spoiled by them ...

now they don't even acknowledge he exists. Hey what can you do?

Tina Mom to Christian 12 yowcf

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Have you shared this fact with them as how he feels & what he said about

him having CF is why they don't see him. That might really shock

them........It sure cant keep them away any longer or more.....they deserve

to know that & have a huge GUILT TRIP . That is terrible to do to someone.

I do hope he got emails , cards from the list though ..

LOVE & HUGS, GRDMBEV

Re: A Vent

I can relate.

Since Christian's diagnoses my two sisters have completely forgotten about

my

family. It is just like you said that they feel it is a stain against our

family. Not to mention they say he " looks fine. " Christian's 12 birthday was

Wednesday and neither of them did so much as send him a birthday card; heck

not

even an email, to wish him a happy birthday. He was crushed and says it is

because he has CF that they don't like him. See even though he is young he

already

feels the discrimination from people. I am just so ashamed that it is coming

from my own flesh and blood. How do you explain to a child that it doesn't

matter when up to 2 years ago they were always there for him? He is the

first boy

on my side of the family in 21 years; so he was just a bit spoiled by them

....

now they don't even acknowledge he exists. Hey what can you do?

Tina Mom to Christian 12 yowcf

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Sometimes people who react this badly don't want to let the wolf in the house so

to speak. ( the wolf being any disease/hardship) We on the other hand have had

to not only let the wolf in, but to let him live with us. Sometimes the wolf

sleeps, but sometimes he raises up and bites. I can honestly say that I

wouldn't want to even open the door to peek at the wolf if I didn't have too.

Dawn mom of 4, 7 and under, the youngest wcf

A Vent

My son w/CF is adopted as many of you know. We have an open

adoption arrangement with his birthmother so I have been very

forthcoming about his medical issues and have suggested strongly that

she have her two sons tested (one is oler and another younger than my

son but both live with her). One of the sisters has many of the

symptoms but refused to be tested because she is " well " most of the

time. Neither half brothers to my son have any strong indicators they

have CF but then again neither did my son until he had reoccurring

nasal polyps. His bgrandmother insists there hasn't been any CF in

the family until I mentioned my DS has a rare gene mutation found

primarily of those with ish descent. The bell went off and she

forgot that her ex husband who fathered all of her children was of

ish descent.

Anyhow the bmother wanted the information on the Ambry test because

the boy's pediatrician have never heard of the test. I sent the

website link off several days ago and she called me last night. She

decided that she was not going to her either child tested because

they are so well and that they don't want the possibility of a

preexisting condition to be on their medical records. Perhaps when

they are of age to be married they would have the test and genetic

counseling but not at the moment. So if my pediatrician felt it was

important to my son's health I could have him contact her

pediatrician and they can " duke " out. Huh??? She seemed to think it

was a matter of finger pointing. I told her it wasn't a matter of

finger pointing because it wasn't a question of IF she had a CF

mutation it was a question WHICH one it was and that she is a carrier

and that her other children may be carriers as well. It doesn't make

any difference to my son but she might find it important to know for

the other boys.

To me it is a win win situation. If the boys have been well all

this time- they may only show as carriers. If they do have CF it

benefits them to know now and not later when they are sick. Am I

looking at this the wrong way? What purpose does it serve to NOT do

the testing? I am totally baffled why she is resistant to having the

test done. I swear she thinks it is a " stain " on her family

personally if they are found to be a carrier. Has anyone else found

having CF makes the child and family as tainted? Talk about

discriminating against your own children!

Sorry all - this just annoyed me to no end. Add that to the fact

when I went to sign my son up for traveling football this year they

asked about medical conditions. This was the first year I knew enough

to have to put down cystic fibrosis. He was just diagnosed this

spring at age 7.

jan

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Tina; the only thing that prevented that in my family is that

on both sides there were so many wcf, that denial was highly unlikely! This may

be sad, but forced us as a clan

to become educated to pieces. You wrote a really good post, and I am so sorry

that this isolation and stigmatisation

has happened in your family,

n Rojas

Re: A Vent

I can relate.

Since Christian's diagnoses my two sisters have completely forgotten about my

family. It is just like you said that they feel it is a stain against our

family. Not to mention they say he " looks fine. " Christian's 12 birthday was

Wednesday and neither of them did so much as send him a birthday card; heck

not

even an email, to wish him a happy birthday. He was crushed and says it is

because he has CF that they don't like him. See even though he is young he

already

feels the discrimination from people. I am just so ashamed that it is coming

from my own flesh and blood. How do you explain to a child that it doesn't

matter when up to 2 years ago they were always there for him? He is the first

boy

on my side of the family in 21 years; so he was just a bit spoiled by them ...

now they don't even acknowledge he exists. Hey what can you do?

Tina Mom to Christian 12 yowcf

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i know how you feel. My cousins little girl has a lot of digestive problems

and lung infections. She has never gotten better. But she refuses to have

her checked for CF. What's the deal, I wish I would've known about cf when my

baby was sick, that could've saved her a lot of damage. It's like they think

it couldn't happen to them. So aggrevating. I just pray for the little girl.

Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo

w/CF - Kaylee

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In a message dated 11/2/2003 12:59:15 PM Central Standard Time,

sandrakkm@... writes:

You have 3 girls too!! and our oldest and youngest have CF! How old were your

girls when they were diagnosed? Deb A

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, given the situation, that was a remarkably re

strained " vent! "

Love to all of you,

n Rojas, wcf, mom of 3 adults (very), youngest

wcf, too

Re: A Vent

> My oldest was diagnosed at 4 months and my youngest was diagnosed before

> birth.

>

> sandra

>

> Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo

> w/CF - Kaylee

>

>

>

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In a message dated 11/4/2003 5:58:25 PM Central Standard Time,

sandrakkm@... writes:

My oldest was diagnosed at 4 months and my youngest was diagnosed before

birth.

sandra

Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo

w/CF - Kaylee

Mine were diagnosed at age 6 and 1. My oldest had polyps in her nose and I

really feel that if it wasn't for that we still would know they have CF. Deb A

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