Carrier testing for extended family members

K

ktsmom

New member
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)
 
K

ktsmom

New member
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)
 
S

sdelorenzo

Guest
All of my children's grandparents were tested within a few months after my daughter was diagnosed. That helped us know what side of the family was carrying the gene so we could let them know they might be a carrier. Two of my three siblings have been tested and five of my neices and nephews. One of my nephews ended up having cf. He was four at the time.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph with cf
 
S

sdelorenzo

Guest
All of my children's grandparents were tested within a few months after my daughter was diagnosed. That helped us know what side of the family was carrying the gene so we could let them know they might be a carrier. Two of my three siblings have been tested and five of my neices and nephews. One of my nephews ended up having cf. He was four at the time.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph with cf
 
S

sdelorenzo

Guest
All of my children's grandparents were tested within a few months after my daughter was diagnosed. That helped us know what side of the family was carrying the gene so we could let them know they might be a carrier. Two of my three siblings have been tested and five of my neices and nephews. One of my nephews ended up having cf. He was four at the time.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph with cf
 
A

Augustmom0003

New member
My dad had a carrier test done (long story, but my cousin has a son whose always had unexplained breathing problems). They (my dad's side of the family) was in such denial (and basking in their ignorance)...that they told me RIGHT AFTER Ethan was diagnosed..."Well, Grandma said it's not from OUR side b/c no one's ever had it!" REALLY? Pick up a book, surf the internet...anything...just get some knowlege on CF, please???? Well...dad got the test done and TAKE A GUESS WHERE I GOT MY BIG, FAT F508 gene from???????????

So, he got it done so my cousin would either get tested or get her son tested. Don't know if either ever happened. Whenever ANYONE suggested she get him tested, she'd freak! (OF COURSE, HER son couldn't have it!!!!!!!) You can only do so much. (Did I mention that this family has a HUGE history of different diseases????)

Now, my husband's side has been awesome about it. Two of his cousins were tested before they conceived. I tried to tell them Ambry...who knows if anyone listened. But, since they are more than likely looking for F508, I'm sure it would've been found. But, I don't think my BIL has been tested or had my niece tested yet. <img src="i/expressions/face-icon-small-blush.gif" border="0">( Ahhhh...ignorance is bliss, isn't it???????
 
A

Augustmom0003

New member
My dad had a carrier test done (long story, but my cousin has a son whose always had unexplained breathing problems). They (my dad's side of the family) was in such denial (and basking in their ignorance)...that they told me RIGHT AFTER Ethan was diagnosed..."Well, Grandma said it's not from OUR side b/c no one's ever had it!" REALLY? Pick up a book, surf the internet...anything...just get some knowlege on CF, please???? Well...dad got the test done and TAKE A GUESS WHERE I GOT MY BIG, FAT F508 gene from???????????

So, he got it done so my cousin would either get tested or get her son tested. Don't know if either ever happened. Whenever ANYONE suggested she get him tested, she'd freak! (OF COURSE, HER son couldn't have it!!!!!!!) You can only do so much. (Did I mention that this family has a HUGE history of different diseases????)

Now, my husband's side has been awesome about it. Two of his cousins were tested before they conceived. I tried to tell them Ambry...who knows if anyone listened. But, since they are more than likely looking for F508, I'm sure it would've been found. But, I don't think my BIL has been tested or had my niece tested yet. <img src="i/expressions/face-icon-small-blush.gif" border="0">( Ahhhh...ignorance is bliss, isn't it???????
 
A

Augustmom0003

New member
My dad had a carrier test done (long story, but my cousin has a son whose always had unexplained breathing problems). They (my dad's side of the family) was in such denial (and basking in their ignorance)...that they told me RIGHT AFTER Ethan was diagnosed..."Well, Grandma said it's not from OUR side b/c no one's ever had it!" REALLY? Pick up a book, surf the internet...anything...just get some knowlege on CF, please???? Well...dad got the test done and TAKE A GUESS WHERE I GOT MY BIG, FAT F508 gene from???????????

So, he got it done so my cousin would either get tested or get her son tested. Don't know if either ever happened. Whenever ANYONE suggested she get him tested, she'd freak! (OF COURSE, HER son couldn't have it!!!!!!!) You can only do so much. (Did I mention that this family has a HUGE history of different diseases????)

Now, my husband's side has been awesome about it. Two of his cousins were tested before they conceived. I tried to tell them Ambry...who knows if anyone listened. But, since they are more than likely looking for F508, I'm sure it would've been found. But, I don't think my BIL has been tested or had my niece tested yet. <img src="i/expressions/face-icon-small-blush.gif" border="0">( Ahhhh...ignorance is bliss, isn't it???????
 
R

Ratatosk

Administrator
Staff member
One of my coworkers has a child with failure to thrive, frequent UR infections, bowel issues... Anyway, when her pediatrician suggested testing for CF (or cerebral fibrosis as she called it), she and her husband got angry stormed out of the exam room and vowed never to go back because her child isn't stupid. Sigh! I've gone out of my way to try to explain DS's symptoms, how he was diagnosed, but she just doesn't want to know.
 
R

Ratatosk

Administrator
Staff member
One of my coworkers has a child with failure to thrive, frequent UR infections, bowel issues... Anyway, when her pediatrician suggested testing for CF (or cerebral fibrosis as she called it), she and her husband got angry stormed out of the exam room and vowed never to go back because her child isn't stupid. Sigh! I've gone out of my way to try to explain DS's symptoms, how he was diagnosed, but she just doesn't want to know.
 
R

Ratatosk

Administrator
Staff member
One of my coworkers has a child with failure to thrive, frequent UR infections, bowel issues... Anyway, when her pediatrician suggested testing for CF (or cerebral fibrosis as she called it), she and her husband got angry stormed out of the exam room and vowed never to go back because her child isn't stupid. Sigh! I've gone out of my way to try to explain DS's symptoms, how he was diagnosed, but she just doesn't want to know.
 
M

Mommafirst

Guest
What is WRONG with people??? How could soo many of our extended families be so happy being blissfully ignorant??? I just don't understand!! Don't most people WANT to figure out if their child has an illness and be able to TREAT them and get them as much help as possible???? UGGGH!! <br>
<br>
Sorry, I just had to interject here, it seems like you all have a story of someone in the family who just doesn't get it! Same here!!!! WHY WHY WHY???
 
M

Mommafirst

Guest
What is WRONG with people??? How could soo many of our extended families be so happy being blissfully ignorant??? I just don't understand!! Don't most people WANT to figure out if their child has an illness and be able to TREAT them and get them as much help as possible???? UGGGH!! <br>
<br>
Sorry, I just had to interject here, it seems like you all have a story of someone in the family who just doesn't get it! Same here!!!! WHY WHY WHY???
 
M

Mommafirst

Guest
What is WRONG with people??? How could soo many of our extended families be so happy being blissfully ignorant??? I just don't understand!! Don't most people WANT to figure out if their child has an illness and be able to TREAT them and get them as much help as possible???? UGGGH!! <br>
<br>
Sorry, I just had to interject here, it seems like you all have a story of someone in the family who just doesn't get it! Same here!!!! WHY WHY WHY???
 
R

Ratatosk

Administrator
Staff member
Fear of the outcome... That and I'm surrounded by morons, both in the workplace and in our extended family <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS was diagnosed shortly after he was born, I sometimes wished that he wouldn't have been diagnosed until he was older. I was so overwhelmed with treatments, meds, new schedule, all the stuff we had to remember... Would've been nice to just sit back and enjoy having a plain old, normal baby, normal infant. Which is silly...

While it didn't seem like it at the time, we were very very fortunate that DS was born with meconium illeus and required emergency surgery and therefore was diagnosed early, so we could begin treatment and to keep the weight on and keep his lungs healthy and happy. And he got so used to CPT that he'd fall asleep thru it. A friend of mine's grandaughter wasn't diagnosed until she was almost two and treatments were a huge struggle -- a 1 1/2 hour screaming fest -- 3 times a day <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not to mention lung damage, malnutrition....
 
R

Ratatosk

Administrator
Staff member
Fear of the outcome... That and I'm surrounded by morons, both in the workplace and in our extended family <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS was diagnosed shortly after he was born, I sometimes wished that he wouldn't have been diagnosed until he was older. I was so overwhelmed with treatments, meds, new schedule, all the stuff we had to remember... Would've been nice to just sit back and enjoy having a plain old, normal baby, normal infant. Which is silly...

While it didn't seem like it at the time, we were very very fortunate that DS was born with meconium illeus and required emergency surgery and therefore was diagnosed early, so we could begin treatment and to keep the weight on and keep his lungs healthy and happy. And he got so used to CPT that he'd fall asleep thru it. A friend of mine's grandaughter wasn't diagnosed until she was almost two and treatments were a huge struggle -- a 1 1/2 hour screaming fest -- 3 times a day <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not to mention lung damage, malnutrition....
 
R

Ratatosk

Administrator
Staff member
Fear of the outcome... That and I'm surrounded by morons, both in the workplace and in our extended family <img src="i/expressions/face-icon-small-smile.gif" border="0">

When DS was diagnosed shortly after he was born, I sometimes wished that he wouldn't have been diagnosed until he was older. I was so overwhelmed with treatments, meds, new schedule, all the stuff we had to remember... Would've been nice to just sit back and enjoy having a plain old, normal baby, normal infant. Which is silly...

While it didn't seem like it at the time, we were very very fortunate that DS was born with meconium illeus and required emergency surgery and therefore was diagnosed early, so we could begin treatment and to keep the weight on and keep his lungs healthy and happy. And he got so used to CPT that he'd fall asleep thru it. A friend of mine's grandaughter wasn't diagnosed until she was almost two and treatments were a huge struggle -- a 1 1/2 hour screaming fest -- 3 times a day <img src="i/expressions/face-icon-small-sad.gif" border="0"> Not to mention lung damage, malnutrition....
 
T

tammykrumrey

Guest
Another thing regarding some extended families that does upset me...although maybe it shouldn't...
After there were three children in our family with CF, I have had two cousins who have had at least one of their children tested at the request of the pediatrians who cared for them due to issues they were having and family history. These cousins are some that I see on a at least monthly basis. They were scared to death. They were very worried and upset and asked for a lot of information. And then the results would come back negative and they would go back into their 'perfect' world. My family holds a lot of CF fundraisers for the CF Foundation, as well as I chair our local walk for the CFF. Now, do either one of these cousins and their families attend or so much as make a donation?! Nope. Not even $1. I try not to be negative about it, but it just doesn't make sense. I just think, you ran to me for support when you were afraid your child had it, and now that they don't, you don't want to support the cause for my children. And it's not even the money. They could even volunteer to help me, which would not cost anything.
Oh, it is just frustrating and I don't understand.
 
T

tammykrumrey

Guest
Another thing regarding some extended families that does upset me...although maybe it shouldn't...
After there were three children in our family with CF, I have had two cousins who have had at least one of their children tested at the request of the pediatrians who cared for them due to issues they were having and family history. These cousins are some that I see on a at least monthly basis. They were scared to death. They were very worried and upset and asked for a lot of information. And then the results would come back negative and they would go back into their 'perfect' world. My family holds a lot of CF fundraisers for the CF Foundation, as well as I chair our local walk for the CFF. Now, do either one of these cousins and their families attend or so much as make a donation?! Nope. Not even $1. I try not to be negative about it, but it just doesn't make sense. I just think, you ran to me for support when you were afraid your child had it, and now that they don't, you don't want to support the cause for my children. And it's not even the money. They could even volunteer to help me, which would not cost anything.
Oh, it is just frustrating and I don't understand.
 
T

tammykrumrey

Guest
Another thing regarding some extended families that does upset me...although maybe it shouldn't...
After there were three children in our family with CF, I have had two cousins who have had at least one of their children tested at the request of the pediatrians who cared for them due to issues they were having and family history. These cousins are some that I see on a at least monthly basis. They were scared to death. They were very worried and upset and asked for a lot of information. And then the results would come back negative and they would go back into their 'perfect' world. My family holds a lot of CF fundraisers for the CF Foundation, as well as I chair our local walk for the CFF. Now, do either one of these cousins and their families attend or so much as make a donation?! Nope. Not even $1. I try not to be negative about it, but it just doesn't make sense. I just think, you ran to me for support when you were afraid your child had it, and now that they don't, you don't want to support the cause for my children. And it's not even the money. They could even volunteer to help me, which would not cost anything.
Oh, it is just frustrating and I don't understand.
 
You must log in or register to reply here.
Top