How do you suggest

[Ratatosk]

DS has a couple of 2nd cousins who have productive coughs, are constantly sick with bronchitis, etc. Had bowel & reflux issues early one. Failure to thrive. Their mother just isn't very approachable, so DH and I have expressed our concerns with my MIL. Apparently the eldest is now seeing the pulmonologist who also is part of the local CF clinic and is being treated for asthma.

My own nephew has issues with asthma, partially collapsed lung, episodes where he gets cyanotic (blue lips/breathing troubles). Also had stomach, bowel, reflux issues as an infant. However, my sister didn't like the pulmonolgist she was referred to who wanted additional tests and never went back. Figure there's only so much we can do to encourage testing.

It's very, very frustrating. But people seem to think that "it can't happen to them" and that we're maybe overreacting and looking for CF at every corner.

 

[Ratatosk]

DS has a couple of 2nd cousins who have productive coughs, are constantly sick with bronchitis, etc. Had bowel & reflux issues early one. Failure to thrive. Their mother just isn't very approachable, so DH and I have expressed our concerns with my MIL. Apparently the eldest is now seeing the pulmonologist who also is part of the local CF clinic and is being treated for asthma.

My own nephew has issues with asthma, partially collapsed lung, episodes where he gets cyanotic (blue lips/breathing troubles). Also had stomach, bowel, reflux issues as an infant. However, my sister didn't like the pulmonolgist she was referred to who wanted additional tests and never went back. Figure there's only so much we can do to encourage testing.

It's very, very frustrating. But people seem to think that "it can't happen to them" and that we're maybe overreacting and looking for CF at every corner.

 

[Ratatosk]

DS has a couple of 2nd cousins who have productive coughs, are constantly sick with bronchitis, etc. Had bowel & reflux issues early one. Failure to thrive. Their mother just isn't very approachable, so DH and I have expressed our concerns with my MIL. Apparently the eldest is now seeing the pulmonologist who also is part of the local CF clinic and is being treated for asthma.

My own nephew has issues with asthma, partially collapsed lung, episodes where he gets cyanotic (blue lips/breathing troubles). Also had stomach, bowel, reflux issues as an infant. However, my sister didn't like the pulmonolgist she was referred to who wanted additional tests and never went back. Figure there's only so much we can do to encourage testing.

It's very, very frustrating. But people seem to think that "it can't happen to them" and that we're maybe overreacting and looking for CF at every corner.

 

[Ratatosk]

DS has a couple of 2nd cousins who have productive coughs, are constantly sick with bronchitis, etc. Had bowel & reflux issues early one. Failure to thrive. Their mother just isn't very approachable, so DH and I have expressed our concerns with my MIL. Apparently the eldest is now seeing the pulmonologist who also is part of the local CF clinic and is being treated for asthma.

My own nephew has issues with asthma, partially collapsed lung, episodes where he gets cyanotic (blue lips/breathing troubles). Also had stomach, bowel, reflux issues as an infant. However, my sister didn't like the pulmonolgist she was referred to who wanted additional tests and never went back. Figure there's only so much we can do to encourage testing.

It's very, very frustrating. But people seem to think that "it can't happen to them" and that we're maybe overreacting and looking for CF at every corner.

 

[Ratatosk]

DS has a couple of 2nd cousins who have productive coughs, are constantly sick with bronchitis, etc. Had bowel & reflux issues early one. Failure to thrive. Their mother just isn't very approachable, so DH and I have expressed our concerns with my MIL. Apparently the eldest is now seeing the pulmonologist who also is part of the local CF clinic and is being treated for asthma.

My own nephew has issues with asthma, partially collapsed lung, episodes where he gets cyanotic (blue lips/breathing troubles). Also had stomach, bowel, reflux issues as an infant. However, my sister didn't like the pulmonolgist she was referred to who wanted additional tests and never went back. Figure there's only so much we can do to encourage testing.

It's very, very frustrating. But people seem to think that "it can't happen to them" and that we're maybe overreacting and looking for CF at every corner.

 

[LouLou]

Mark my words, if everyone was sequenced there would be tons of people found to have 2 mutations.

Was your sister ever carrier tested? She could take that approach...find out if she is a carrier of either of your mutations. If not, then there's nothing to worry about. If so, she should get her kiddos tested. You could tell her that cf doctors and the CFF are pushing out a national campaign and encouraging all siblings of cfers to be carrier tested. It boggles my mind how hands off the CFF and doctors are so blaze about carrier status. Personally I think there's a fundraiser silver lining to it...call it an alterior motive... if all the people like my son were diagnosed with cf (which he's not) it would make cf look mild therefore they aren't even pushing to get people tested. The doom and gloom stat of 37 life expectancy brings in more money. What I don't get though is if more people were diagnosed with cf wouldn't that mean more people would be fundraising and more money would be generated?? I figure they've run the #'s and don't think it will. Errr!

 

[LouLou]

Mark my words, if everyone was sequenced there would be tons of people found to have 2 mutations.

Was your sister ever carrier tested? She could take that approach...find out if she is a carrier of either of your mutations. If not, then there's nothing to worry about. If so, she should get her kiddos tested. You could tell her that cf doctors and the CFF are pushing out a national campaign and encouraging all siblings of cfers to be carrier tested. It boggles my mind how hands off the CFF and doctors are so blaze about carrier status. Personally I think there's a fundraiser silver lining to it...call it an alterior motive... if all the people like my son were diagnosed with cf (which he's not) it would make cf look mild therefore they aren't even pushing to get people tested. The doom and gloom stat of 37 life expectancy brings in more money. What I don't get though is if more people were diagnosed with cf wouldn't that mean more people would be fundraising and more money would be generated?? I figure they've run the #'s and don't think it will. Errr!

 

[LouLou]

Mark my words, if everyone was sequenced there would be tons of people found to have 2 mutations.

Was your sister ever carrier tested? She could take that approach...find out if she is a carrier of either of your mutations. If not, then there's nothing to worry about. If so, she should get her kiddos tested. You could tell her that cf doctors and the CFF are pushing out a national campaign and encouraging all siblings of cfers to be carrier tested. It boggles my mind how hands off the CFF and doctors are so blaze about carrier status. Personally I think there's a fundraiser silver lining to it...call it an alterior motive... if all the people like my son were diagnosed with cf (which he's not) it would make cf look mild therefore they aren't even pushing to get people tested. The doom and gloom stat of 37 life expectancy brings in more money. What I don't get though is if more people were diagnosed with cf wouldn't that mean more people would be fundraising and more money would be generated?? I figure they've run the #'s and don't think it will. Errr!

 

[LouLou]

Mark my words, if everyone was sequenced there would be tons of people found to have 2 mutations.

Was your sister ever carrier tested? She could take that approach...find out if she is a carrier of either of your mutations. If not, then there's nothing to worry about. If so, she should get her kiddos tested. You could tell her that cf doctors and the CFF are pushing out a national campaign and encouraging all siblings of cfers to be carrier tested. It boggles my mind how hands off the CFF and doctors are so blaze about carrier status. Personally I think there's a fundraiser silver lining to it...call it an alterior motive... if all the people like my son were diagnosed with cf (which he's not) it would make cf look mild therefore they aren't even pushing to get people tested. The doom and gloom stat of 37 life expectancy brings in more money. What I don't get though is if more people were diagnosed with cf wouldn't that mean more people would be fundraising and more money would be generated?? I figure they've run the #'s and don't think it will. Errr!

 

[LouLou]

Mark my words, if everyone was sequenced there would be tons of people found to have 2 mutations.

Was your sister ever carrier tested? She could take that approach...find out if she is a carrier of either of your mutations. If not, then there's nothing to worry about. If so, she should get her kiddos tested. You could tell her that cf doctors and the CFF are pushing out a national campaign and encouraging all siblings of cfers to be carrier tested. It boggles my mind how hands off the CFF and doctors are so blaze about carrier status. Personally I think there's a fundraiser silver lining to it...call it an alterior motive... if all the people like my son were diagnosed with cf (which he's not) it would make cf look mild therefore they aren't even pushing to get people tested. The doom and gloom stat of 37 life expectancy brings in more money. What I don't get though is if more people were diagnosed with cf wouldn't that mean more people would be fundraising and more money would be generated?? I figure they've run the #'s and don't think it will. Errr!

 

[Ratatosk]

Yeah, and it doesn't help when the CF doctors aren't very supportive or encouraging about CF/Carrier testing. Last spring DH's cousin asked about carrier testing, she asked her OB/GYN, who is also who I go to and KNOWS ds has CF and got the run around for several weeks. She finally ended up contacting the University's genetic department for information, who told her they COULD do testing but $$$. So she asked me what to do.

I contacted DS's local CF doctor and got an emailed response about how she should look at the reasons behind why she would want to be tested because it probably wasn't covered under insurance. Hello, she's planning to have a child. I got the run around for several weeks to, don't know if she ever managed to get tested. It was soooo incredibly frustrating to have doctors who KNOW your history, know your child has CF and discouraging testing because it might be too expensive and not covered by insurance.

A friend of mine whose granddaughter is the same age as DS, was going to a family reunion and wanted to educate everyone about the possibility of CF. Her children, siblings, grandchildren, nieces, nephews -- about 40 total went to the clinic and got tested. Out of the group only one person -- an older aunt -- wasn't covered under insurance and being that she wasn't planning to have any more children and her daughter was able to get tested, she opted out.

 

[Ratatosk]

Yeah, and it doesn't help when the CF doctors aren't very supportive or encouraging about CF/Carrier testing. Last spring DH's cousin asked about carrier testing, she asked her OB/GYN, who is also who I go to and KNOWS ds has CF and got the run around for several weeks. She finally ended up contacting the University's genetic department for information, who told her they COULD do testing but $$$. So she asked me what to do.

I contacted DS's local CF doctor and got an emailed response about how she should look at the reasons behind why she would want to be tested because it probably wasn't covered under insurance. Hello, she's planning to have a child. I got the run around for several weeks to, don't know if she ever managed to get tested. It was soooo incredibly frustrating to have doctors who KNOW your history, know your child has CF and discouraging testing because it might be too expensive and not covered by insurance.

A friend of mine whose granddaughter is the same age as DS, was going to a family reunion and wanted to educate everyone about the possibility of CF. Her children, siblings, grandchildren, nieces, nephews -- about 40 total went to the clinic and got tested. Out of the group only one person -- an older aunt -- wasn't covered under insurance and being that she wasn't planning to have any more children and her daughter was able to get tested, she opted out.

 

[Ratatosk]

Yeah, and it doesn't help when the CF doctors aren't very supportive or encouraging about CF/Carrier testing. Last spring DH's cousin asked about carrier testing, she asked her OB/GYN, who is also who I go to and KNOWS ds has CF and got the run around for several weeks. She finally ended up contacting the University's genetic department for information, who told her they COULD do testing but $$$. So she asked me what to do.

I contacted DS's local CF doctor and got an emailed response about how she should look at the reasons behind why she would want to be tested because it probably wasn't covered under insurance. Hello, she's planning to have a child. I got the run around for several weeks to, don't know if she ever managed to get tested. It was soooo incredibly frustrating to have doctors who KNOW your history, know your child has CF and discouraging testing because it might be too expensive and not covered by insurance.

A friend of mine whose granddaughter is the same age as DS, was going to a family reunion and wanted to educate everyone about the possibility of CF. Her children, siblings, grandchildren, nieces, nephews -- about 40 total went to the clinic and got tested. Out of the group only one person -- an older aunt -- wasn't covered under insurance and being that she wasn't planning to have any more children and her daughter was able to get tested, she opted out.

 

[Ratatosk]

Yeah, and it doesn't help when the CF doctors aren't very supportive or encouraging about CF/Carrier testing. Last spring DH's cousin asked about carrier testing, she asked her OB/GYN, who is also who I go to and KNOWS ds has CF and got the run around for several weeks. She finally ended up contacting the University's genetic department for information, who told her they COULD do testing but $$$. So she asked me what to do.

I contacted DS's local CF doctor and got an emailed response about how she should look at the reasons behind why she would want to be tested because it probably wasn't covered under insurance. Hello, she's planning to have a child. I got the run around for several weeks to, don't know if she ever managed to get tested. It was soooo incredibly frustrating to have doctors who KNOW your history, know your child has CF and discouraging testing because it might be too expensive and not covered by insurance.

A friend of mine whose granddaughter is the same age as DS, was going to a family reunion and wanted to educate everyone about the possibility of CF. Her children, siblings, grandchildren, nieces, nephews -- about 40 total went to the clinic and got tested. Out of the group only one person -- an older aunt -- wasn't covered under insurance and being that she wasn't planning to have any more children and her daughter was able to get tested, she opted out.

 

[Ratatosk]

Yeah, and it doesn't help when the CF doctors aren't very supportive or encouraging about CF/Carrier testing. Last spring DH's cousin asked about carrier testing, she asked her OB/GYN, who is also who I go to and KNOWS ds has CF and got the run around for several weeks. She finally ended up contacting the University's genetic department for information, who told her they COULD do testing but $$$. So she asked me what to do.

I contacted DS's local CF doctor and got an emailed response about how she should look at the reasons behind why she would want to be tested because it probably wasn't covered under insurance. Hello, she's planning to have a child. I got the run around for several weeks to, don't know if she ever managed to get tested. It was soooo incredibly frustrating to have doctors who KNOW your history, know your child has CF and discouraging testing because it might be too expensive and not covered by insurance.

A friend of mine whose granddaughter is the same age as DS, was going to a family reunion and wanted to educate everyone about the possibility of CF. Her children, siblings, grandchildren, nieces, nephews -- about 40 total went to the clinic and got tested. Out of the group only one person -- an older aunt -- wasn't covered under insurance and being that she wasn't planning to have any more children and her daughter was able to get tested, she opted out.

 

[Rickiesmom]

I would clearly say to her- ya know sis better safe than sorry, it's such a simple and cheap test to eliminate cf (sweat test.) I wish you would get kiddo tested. I guess the direct approach I feel is the best. And you can tell her if its not, hopefully your neice or nephew will outgrow whatever he/she has. (allergies etc)

my son is 6 and just diagnosed two and a half months ago I really wished they would of dx him sooner-because he does have lung damage already...and especially since you have cf it's in your family. My sister-in-law is testing her three kids to see if there carriers. I really hope she listens to you...let us know what happens.

Carey

 

[Rickiesmom]

I would clearly say to her- ya know sis better safe than sorry, it's such a simple and cheap test to eliminate cf (sweat test.) I wish you would get kiddo tested. I guess the direct approach I feel is the best. And you can tell her if its not, hopefully your neice or nephew will outgrow whatever he/she has. (allergies etc)

my son is 6 and just diagnosed two and a half months ago I really wished they would of dx him sooner-because he does have lung damage already...and especially since you have cf it's in your family. My sister-in-law is testing her three kids to see if there carriers. I really hope she listens to you...let us know what happens.

Carey

 

[Rickiesmom]

I would clearly say to her- ya know sis better safe than sorry, it's such a simple and cheap test to eliminate cf (sweat test.) I wish you would get kiddo tested. I guess the direct approach I feel is the best. And you can tell her if its not, hopefully your neice or nephew will outgrow whatever he/she has. (allergies etc)

my son is 6 and just diagnosed two and a half months ago I really wished they would of dx him sooner-because he does have lung damage already...and especially since you have cf it's in your family. My sister-in-law is testing her three kids to see if there carriers. I really hope she listens to you...let us know what happens.

Carey

 

[Rickiesmom]

I would clearly say to her- ya know sis better safe than sorry, it's such a simple and cheap test to eliminate cf (sweat test.) I wish you would get kiddo tested. I guess the direct approach I feel is the best. And you can tell her if its not, hopefully your neice or nephew will outgrow whatever he/she has. (allergies etc)

my son is 6 and just diagnosed two and a half months ago I really wished they would of dx him sooner-because he does have lung damage already...and especially since you have cf it's in your family. My sister-in-law is testing her three kids to see if there carriers. I really hope she listens to you...let us know what happens.

Carey

 

[Rickiesmom]

I would clearly say to her- ya know sis better safe than sorry, it's such a simple and cheap test to eliminate cf (sweat test.) I wish you would get kiddo tested. I guess the direct approach I feel is the best. And you can tell her if its not, hopefully your neice or nephew will outgrow whatever he/she has. (allergies etc)

my son is 6 and just diagnosed two and a half months ago I really wished they would of dx him sooner-because he does have lung damage already...and especially since you have cf it's in your family. My sister-in-law is testing her three kids to see if there carriers. I really hope she listens to you...let us know what happens.

Carey