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Carrier testing for extended family members
- Thread starter ktsmom
- Start date
T
tammykrumrey
Guest
We have done the same as others. You can tell people that they should be tested as to carrier status prior to having a baby, but that's about it. I guess I can look at it from both sides since I have been there. When my nephew was dx with CF, I was 23 years old. The internet was not what is now, and I truely was just not that informed. I knew that it meant that I could carry the gene since my sister carried it, but that was about as far as the thought went. I don't remember anyone saying 'You should be tested before having children.' When I married my husband at 26 years old, all I knew was that I COULD carry the gene and that there was noone in his family history with CF, so no big deal. Now looking back I realize how foolish that thought was because we didn't know CF was in our family either! What was I thinking?! I knew that there was a one in about 30 chance that my husband could carry the gene as well, but besides speaking it in conversation, I just never thought about being tested. Well, long story a bit shorter, I have two daughters who both have CF. Wow! What a shocker to me because it really never even crossed my mind. (And I happen to be a college graduate who runs a business with over 40 employees--so I really am not a dumb person but my brain wasn't working too good I guess at that time in my life) And as I said, with internet access, I know SO MUCH more than I did then! Had I had access to so much information, maybe I would had been more prepared. Who knows! But I do suggest to my younger, childless cousins, to get the test so there are no surprises.
T
tammykrumrey
Guest
We have done the same as others. You can tell people that they should be tested as to carrier status prior to having a baby, but that's about it. I guess I can look at it from both sides since I have been there. When my nephew was dx with CF, I was 23 years old. The internet was not what is now, and I truely was just not that informed. I knew that it meant that I could carry the gene since my sister carried it, but that was about as far as the thought went. I don't remember anyone saying 'You should be tested before having children.' When I married my husband at 26 years old, all I knew was that I COULD carry the gene and that there was noone in his family history with CF, so no big deal. Now looking back I realize how foolish that thought was because we didn't know CF was in our family either! What was I thinking?! I knew that there was a one in about 30 chance that my husband could carry the gene as well, but besides speaking it in conversation, I just never thought about being tested. Well, long story a bit shorter, I have two daughters who both have CF. Wow! What a shocker to me because it really never even crossed my mind. (And I happen to be a college graduate who runs a business with over 40 employees--so I really am not a dumb person but my brain wasn't working too good I guess at that time in my life) And as I said, with internet access, I know SO MUCH more than I did then! Had I had access to so much information, maybe I would had been more prepared. Who knows! But I do suggest to my younger, childless cousins, to get the test so there are no surprises.
T
tammykrumrey
Guest
We have done the same as others. You can tell people that they should be tested as to carrier status prior to having a baby, but that's about it. I guess I can look at it from both sides since I have been there. When my nephew was dx with CF, I was 23 years old. The internet was not what is now, and I truely was just not that informed. I knew that it meant that I could carry the gene since my sister carried it, but that was about as far as the thought went. I don't remember anyone saying 'You should be tested before having children.' When I married my husband at 26 years old, all I knew was that I COULD carry the gene and that there was noone in his family history with CF, so no big deal. Now looking back I realize how foolish that thought was because we didn't know CF was in our family either! What was I thinking?! I knew that there was a one in about 30 chance that my husband could carry the gene as well, but besides speaking it in conversation, I just never thought about being tested. Well, long story a bit shorter, I have two daughters who both have CF. Wow! What a shocker to me because it really never even crossed my mind. (And I happen to be a college graduate who runs a business with over 40 employees--so I really am not a dumb person but my brain wasn't working too good I guess at that time in my life) And as I said, with internet access, I know SO MUCH more than I did then! Had I had access to so much information, maybe I would had been more prepared. Who knows! But I do suggest to my younger, childless cousins, to get the test so there are no surprises.
M
Mommafirst
Guest
We've informed our siblings and suggested that they have their kids tested. None want to, or maybe they will someday, I don't know. Everyone is done having babies, so I guess this generation isn't as concerned about their carrier status and they will test their kids if the need arises. I have no idea what I would do in their shoes, but our CF center did think that even without symptoms, all the first cousins should be sweat tested. And then know they may be carriers when they are older.
M
Mommafirst
Guest
We've informed our siblings and suggested that they have their kids tested. None want to, or maybe they will someday, I don't know. Everyone is done having babies, so I guess this generation isn't as concerned about their carrier status and they will test their kids if the need arises. I have no idea what I would do in their shoes, but our CF center did think that even without symptoms, all the first cousins should be sweat tested. And then know they may be carriers when they are older.
M
Mommafirst
Guest
We've informed our siblings and suggested that they have their kids tested. None want to, or maybe they will someday, I don't know. Everyone is done having babies, so I guess this generation isn't as concerned about their carrier status and they will test their kids if the need arises. I have no idea what I would do in their shoes, but our CF center did think that even without symptoms, all the first cousins should be sweat tested. And then know they may be carriers when they are older.
T
tammykrumrey
Guest
Heather,
I think that having all first cousins sweat tested is a GREAT idea! My older daughter went 14 months before being dx, even though she started having symptoms much earlier. Her ped. (at the time) was also my nephews (who also has CF) ped. and never once even suggested it, even though I had taken her in with complaints (in which I now know were symptoms of CF). I even had her in his office one day complaining about having so many bowel movements and that they were yellow and mushy and smelly. He said she was normal and that it was common that some babies had yellow mushy poops! Again, my CF nephews ped. She was rushed by ambulance that same night with a rectal prolapse and was sweat tested the following day at the advice of the childrens hospital. The ped. called and just said that he was sorry. Ughhhh! Looking back it was so clear...but again, I am not a doctor. And my nephew didn't have many of the same symptoms because he was on enzymes right away because he was dx at two days old with MI. Sorry to get on my soap box. It still frustrates me that he never suggested it knowing the family history (and it's been almost 8 years).
I think that having all first cousins sweat tested is a GREAT idea! My older daughter went 14 months before being dx, even though she started having symptoms much earlier. Her ped. (at the time) was also my nephews (who also has CF) ped. and never once even suggested it, even though I had taken her in with complaints (in which I now know were symptoms of CF). I even had her in his office one day complaining about having so many bowel movements and that they were yellow and mushy and smelly. He said she was normal and that it was common that some babies had yellow mushy poops! Again, my CF nephews ped. She was rushed by ambulance that same night with a rectal prolapse and was sweat tested the following day at the advice of the childrens hospital. The ped. called and just said that he was sorry. Ughhhh! Looking back it was so clear...but again, I am not a doctor. And my nephew didn't have many of the same symptoms because he was on enzymes right away because he was dx at two days old with MI. Sorry to get on my soap box. It still frustrates me that he never suggested it knowing the family history (and it's been almost 8 years).
T
tammykrumrey
Guest
Heather,
I think that having all first cousins sweat tested is a GREAT idea! My older daughter went 14 months before being dx, even though she started having symptoms much earlier. Her ped. (at the time) was also my nephews (who also has CF) ped. and never once even suggested it, even though I had taken her in with complaints (in which I now know were symptoms of CF). I even had her in his office one day complaining about having so many bowel movements and that they were yellow and mushy and smelly. He said she was normal and that it was common that some babies had yellow mushy poops! Again, my CF nephews ped. She was rushed by ambulance that same night with a rectal prolapse and was sweat tested the following day at the advice of the childrens hospital. The ped. called and just said that he was sorry. Ughhhh! Looking back it was so clear...but again, I am not a doctor. And my nephew didn't have many of the same symptoms because he was on enzymes right away because he was dx at two days old with MI. Sorry to get on my soap box. It still frustrates me that he never suggested it knowing the family history (and it's been almost 8 years).
I think that having all first cousins sweat tested is a GREAT idea! My older daughter went 14 months before being dx, even though she started having symptoms much earlier. Her ped. (at the time) was also my nephews (who also has CF) ped. and never once even suggested it, even though I had taken her in with complaints (in which I now know were symptoms of CF). I even had her in his office one day complaining about having so many bowel movements and that they were yellow and mushy and smelly. He said she was normal and that it was common that some babies had yellow mushy poops! Again, my CF nephews ped. She was rushed by ambulance that same night with a rectal prolapse and was sweat tested the following day at the advice of the childrens hospital. The ped. called and just said that he was sorry. Ughhhh! Looking back it was so clear...but again, I am not a doctor. And my nephew didn't have many of the same symptoms because he was on enzymes right away because he was dx at two days old with MI. Sorry to get on my soap box. It still frustrates me that he never suggested it knowing the family history (and it's been almost 8 years).
T
tammykrumrey
Guest
Heather,
I think that having all first cousins sweat tested is a GREAT idea! My older daughter went 14 months before being dx, even though she started having symptoms much earlier. Her ped. (at the time) was also my nephews (who also has CF) ped. and never once even suggested it, even though I had taken her in with complaints (in which I now know were symptoms of CF). I even had her in his office one day complaining about having so many bowel movements and that they were yellow and mushy and smelly. He said she was normal and that it was common that some babies had yellow mushy poops! Again, my CF nephews ped. She was rushed by ambulance that same night with a rectal prolapse and was sweat tested the following day at the advice of the childrens hospital. The ped. called and just said that he was sorry. Ughhhh! Looking back it was so clear...but again, I am not a doctor. And my nephew didn't have many of the same symptoms because he was on enzymes right away because he was dx at two days old with MI. Sorry to get on my soap box. It still frustrates me that he never suggested it knowing the family history (and it's been almost 8 years).
I think that having all first cousins sweat tested is a GREAT idea! My older daughter went 14 months before being dx, even though she started having symptoms much earlier. Her ped. (at the time) was also my nephews (who also has CF) ped. and never once even suggested it, even though I had taken her in with complaints (in which I now know were symptoms of CF). I even had her in his office one day complaining about having so many bowel movements and that they were yellow and mushy and smelly. He said she was normal and that it was common that some babies had yellow mushy poops! Again, my CF nephews ped. She was rushed by ambulance that same night with a rectal prolapse and was sweat tested the following day at the advice of the childrens hospital. The ped. called and just said that he was sorry. Ughhhh! Looking back it was so clear...but again, I am not a doctor. And my nephew didn't have many of the same symptoms because he was on enzymes right away because he was dx at two days old with MI. Sorry to get on my soap box. It still frustrates me that he never suggested it knowing the family history (and it's been almost 8 years).
No one in my family has been tested, even my brother. They all have been informed about it but no one has chosen to at the moment. None have had kids yet so I don't know if they will. I am assuming my brother will when he is ready. All you can do is inform them the risks and then it really is up to them.
No one in my family has been tested, even my brother. They all have been informed about it but no one has chosen to at the moment. None have had kids yet so I don't know if they will. I am assuming my brother will when he is ready. All you can do is inform them the risks and then it really is up to them.
No one in my family has been tested, even my brother. They all have been informed about it but no one has chosen to at the moment. None have had kids yet so I don't know if they will. I am assuming my brother will when he is ready. All you can do is inform them the risks and then it really is up to them.
No one in my family has been tested, even my brother. They all have been informed about it but no one has chosen to at the moment. None have had kids yet so I don't know if they will. I am assuming my brother will when he is ready. All you can do is inform them the risks and then it really is up to them.
No one in my family has been tested, even my brother. They all have been informed about it but no one has chosen to at the moment. None have had kids yet so I don't know if they will. I am assuming my brother will when he is ready. All you can do is inform them the risks and then it really is up to them.
No one in my family has been tested, even my brother. They all have been informed about it but no one has chosen to at the moment. None have had kids yet so I don't know if they will. I am assuming my brother will when he is ready. All you can do is inform them the risks and then it really is up to them.
We waited awhile to have children -- our siblings, cousins have already had kids and now their kids are having kids; however, one of DH's cousin's was talking about how her teenage daughter wondered if she could have CF. Years ago they thought she had asthma, which she's apparently outgrown, though she still seems to get really sick anytime she gets a cold. Anyway, she was told by her doctor that she didn't have CF because she passed her sweat test. To which I replied, DS passed his, too! A couple of another cousin's kids also seem to have chronic coughs, problems gaining weight and have been diagnosed with asthma and allergies -- I still wonder though, but I'm just a gloom and doom naysayer if I try to say anything.
My nephew has breathing problems, has to use a nebulizer and inhaler from time to time. They've had to call for an ambulance at school a few times because he's turned blue, chest sunken in and once one of the EMT's thought he had a collapsed lung. My sister won't take him to a pulmonologist she was referred to, because she thought she was snooty. Shaking my head...
My nephew has breathing problems, has to use a nebulizer and inhaler from time to time. They've had to call for an ambulance at school a few times because he's turned blue, chest sunken in and once one of the EMT's thought he had a collapsed lung. My sister won't take him to a pulmonologist she was referred to, because she thought she was snooty. Shaking my head...
We waited awhile to have children -- our siblings, cousins have already had kids and now their kids are having kids; however, one of DH's cousin's was talking about how her teenage daughter wondered if she could have CF. Years ago they thought she had asthma, which she's apparently outgrown, though she still seems to get really sick anytime she gets a cold. Anyway, she was told by her doctor that she didn't have CF because she passed her sweat test. To which I replied, DS passed his, too! A couple of another cousin's kids also seem to have chronic coughs, problems gaining weight and have been diagnosed with asthma and allergies -- I still wonder though, but I'm just a gloom and doom naysayer if I try to say anything.
My nephew has breathing problems, has to use a nebulizer and inhaler from time to time. They've had to call for an ambulance at school a few times because he's turned blue, chest sunken in and once one of the EMT's thought he had a collapsed lung. My sister won't take him to a pulmonologist she was referred to, because she thought she was snooty. Shaking my head...
My nephew has breathing problems, has to use a nebulizer and inhaler from time to time. They've had to call for an ambulance at school a few times because he's turned blue, chest sunken in and once one of the EMT's thought he had a collapsed lung. My sister won't take him to a pulmonologist she was referred to, because she thought she was snooty. Shaking my head...
We waited awhile to have children -- our siblings, cousins have already had kids and now their kids are having kids; however, one of DH's cousin's was talking about how her teenage daughter wondered if she could have CF. Years ago they thought she had asthma, which she's apparently outgrown, though she still seems to get really sick anytime she gets a cold. Anyway, she was told by her doctor that she didn't have CF because she passed her sweat test. To which I replied, DS passed his, too! A couple of another cousin's kids also seem to have chronic coughs, problems gaining weight and have been diagnosed with asthma and allergies -- I still wonder though, but I'm just a gloom and doom naysayer if I try to say anything.
My nephew has breathing problems, has to use a nebulizer and inhaler from time to time. They've had to call for an ambulance at school a few times because he's turned blue, chest sunken in and once one of the EMT's thought he had a collapsed lung. My sister won't take him to a pulmonologist she was referred to, because she thought she was snooty. Shaking my head...
My nephew has breathing problems, has to use a nebulizer and inhaler from time to time. They've had to call for an ambulance at school a few times because he's turned blue, chest sunken in and once one of the EMT's thought he had a collapsed lung. My sister won't take him to a pulmonologist she was referred to, because she thought she was snooty. Shaking my head...
Tammy - we had the rectal prolapse thing, too, and also the pediatrician in denial; I believe I'll be frustrated about that forever.......
np2 - glad to hear an update from you on your search for answers. Our daughter is double DF508. Let us know about today's results.
Thanks everyone for your thoughts and input! I think at this point many members of our family just want to say: OKAY we GET it KATY HAS CF. It is so nice to be able to post here..........<img src="i/expressions/face-icon-small-smile.gif" border="0">
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
np2 - glad to hear an update from you on your search for answers. Our daughter is double DF508. Let us know about today's results.
Thanks everyone for your thoughts and input! I think at this point many members of our family just want to say: OKAY we GET it KATY HAS CF. It is so nice to be able to post here..........<img src="i/expressions/face-icon-small-smile.gif" border="0">
Dana
Mom to Katy (3, cf) and Kyra (6, no cf)