Wanting 2nd Granddaughter Tested

Ratatosk · Feb 24, 2009

Hopefully they'll get her tested. We've had similar issues in our family. For whatever reason, despite symptoms, relatives won't get tested. Maybe it's fear. Sometimes I think it's a mindset that they're thinking that if the doctors were really concerned about it, they'd TELL them to get tested.

In our area I think a good part of it has to do with the local clinic and the one and only pediatric pulmologist not pushing for testing. Time and time again in our town I hear stories of children with asthma and pancreatic insufficiency/failure to thrive and wonder if they might in fact have CF.

In fact a cousin tried to get carrier testing a couple years ago and was discouraged by the head of the CF clinic despite her explaining there was a family history (meaning us).

Ratatosk · Feb 24, 2009

Hopefully they'll get her tested. We've had similar issues in our family. For whatever reason, despite symptoms, relatives won't get tested. Maybe it's fear. Sometimes I think it's a mindset that they're thinking that if the doctors were really concerned about it, they'd TELL them to get tested.

In our area I think a good part of it has to do with the local clinic and the one and only pediatric pulmologist not pushing for testing. Time and time again in our town I hear stories of children with asthma and pancreatic insufficiency/failure to thrive and wonder if they might in fact have CF.

In fact a cousin tried to get carrier testing a couple years ago and was discouraged by the head of the CF clinic despite her explaining there was a family history (meaning us).

Ratatosk · Feb 24, 2009

Hopefully they'll get her tested. We've had similar issues in our family. For whatever reason, despite symptoms, relatives won't get tested. Maybe it's fear. Sometimes I think it's a mindset that they're thinking that if the doctors were really concerned about it, they'd TELL them to get tested.

In our area I think a good part of it has to do with the local clinic and the one and only pediatric pulmologist not pushing for testing. Time and time again in our town I hear stories of children with asthma and pancreatic insufficiency/failure to thrive and wonder if they might in fact have CF.

In fact a cousin tried to get carrier testing a couple years ago and was discouraged by the head of the CF clinic despite her explaining there was a family history (meaning us).

Ratatosk · Feb 24, 2009

Hopefully they'll get her tested. We've had similar issues in our family. For whatever reason, despite symptoms, relatives won't get tested. Maybe it's fear. Sometimes I think it's a mindset that they're thinking that if the doctors were really concerned about it, they'd TELL them to get tested.

In our area I think a good part of it has to do with the local clinic and the one and only pediatric pulmologist not pushing for testing. Time and time again in our town I hear stories of children with asthma and pancreatic insufficiency/failure to thrive and wonder if they might in fact have CF.

In fact a cousin tried to get carrier testing a couple years ago and was discouraged by the head of the CF clinic despite her explaining there was a family history (meaning us).

Ratatosk · Feb 24, 2009

Hopefully they'll get her tested. We've had similar issues in our family. For whatever reason, despite symptoms, relatives won't get tested. Maybe it's fear. Sometimes I think it's a mindset that they're thinking that if the doctors were really concerned about it, they'd TELL them to get tested.
 
 In our area I think a good part of it has to do with the local clinic and the one and only pediatric pulmologist not pushing for testing. Time and time again in our town I hear stories of children with asthma and pancreatic insufficiency/failure to thrive and wonder if they might in fact have CF.
 
 In fact a cousin tried to get carrier testing a couple years ago and was discouraged by the head of the CF clinic despite her explaining there was a family history (meaning us).

tammykrumrey · Feb 24, 2009

I absolutely agree-if Lyric is a sibling, she should had already been tested. Hannah was tested at birth b/c of her sister having CF.

If it is that they are cousins, it should most definatly be mentioned. Kayla was misdiagnosed for the first 14 months of her life, even though she was seen by the same pediatrician as my nephew w/cf. The Dr. KNEW of the family history and still missed it. Looking back now, I have no idea how he did!

But anyways, it still took somthing to happen b/f she was diagnosed-in Kayla's case she suffered a rectal prolapse. Maybe had I had someone urge me to test her I would had pushed the issue with the dr. myself. I was in my own world of denial, I guess.

tammykrumrey · Feb 24, 2009

I absolutely agree-if Lyric is a sibling, she should had already been tested. Hannah was tested at birth b/c of her sister having CF.

If it is that they are cousins, it should most definatly be mentioned. Kayla was misdiagnosed for the first 14 months of her life, even though she was seen by the same pediatrician as my nephew w/cf. The Dr. KNEW of the family history and still missed it. Looking back now, I have no idea how he did!

But anyways, it still took somthing to happen b/f she was diagnosed-in Kayla's case she suffered a rectal prolapse. Maybe had I had someone urge me to test her I would had pushed the issue with the dr. myself. I was in my own world of denial, I guess.

tammykrumrey · Feb 24, 2009

I absolutely agree-if Lyric is a sibling, she should had already been tested. Hannah was tested at birth b/c of her sister having CF.

If it is that they are cousins, it should most definatly be mentioned. Kayla was misdiagnosed for the first 14 months of her life, even though she was seen by the same pediatrician as my nephew w/cf. The Dr. KNEW of the family history and still missed it. Looking back now, I have no idea how he did!

But anyways, it still took somthing to happen b/f she was diagnosed-in Kayla's case she suffered a rectal prolapse. Maybe had I had someone urge me to test her I would had pushed the issue with the dr. myself. I was in my own world of denial, I guess.

tammykrumrey · Feb 24, 2009

I absolutely agree-if Lyric is a sibling, she should had already been tested. Hannah was tested at birth b/c of her sister having CF.

If it is that they are cousins, it should most definatly be mentioned. Kayla was misdiagnosed for the first 14 months of her life, even though she was seen by the same pediatrician as my nephew w/cf. The Dr. KNEW of the family history and still missed it. Looking back now, I have no idea how he did!

But anyways, it still took somthing to happen b/f she was diagnosed-in Kayla's case she suffered a rectal prolapse. Maybe had I had someone urge me to test her I would had pushed the issue with the dr. myself. I was in my own world of denial, I guess.

tammykrumrey · Feb 24, 2009

I absolutely agree-if Lyric is a sibling, she should had already been tested. Hannah was tested at birth b/c of her sister having CF.
 
 If it is that they are cousins, it should most definatly be mentioned. Kayla was misdiagnosed for the first 14 months of her life, even though she was seen by the same pediatrician as my nephew w/cf. The Dr. KNEW of the family history and still missed it. Looking back now, I have no idea how he did!
 
 But anyways, it still took somthing to happen b/f she was diagnosed-in Kayla's case she suffered a rectal prolapse. Maybe had I had someone urge me to test her I would had pushed the issue with the dr. myself. I was in my own world of denial, I guess.

Buckeye · Feb 24, 2009

At the very least your son and daughter-in-law should be telling Lyric's doctor that there is a family history of CF. If not they are hiding some very important information from their daughter's doctor that may or may not be able to let the doctor do his job better. But ultimately it is up to the parents of the child and if they want to act like there's not an elephant in the room then that's their perogative. I guess if I were the grandma I would just keep bringing it up again and again and again. It's got to be a hard position to be in.

Buckeye · Feb 24, 2009

At the very least your son and daughter-in-law should be telling Lyric's doctor that there is a family history of CF. If not they are hiding some very important information from their daughter's doctor that may or may not be able to let the doctor do his job better. But ultimately it is up to the parents of the child and if they want to act like there's not an elephant in the room then that's their perogative. I guess if I were the grandma I would just keep bringing it up again and again and again. It's got to be a hard position to be in.

Buckeye · Feb 24, 2009

At the very least your son and daughter-in-law should be telling Lyric's doctor that there is a family history of CF. If not they are hiding some very important information from their daughter's doctor that may or may not be able to let the doctor do his job better. But ultimately it is up to the parents of the child and if they want to act like there's not an elephant in the room then that's their perogative. I guess if I were the grandma I would just keep bringing it up again and again and again. It's got to be a hard position to be in.

Buckeye · Feb 24, 2009

At the very least your son and daughter-in-law should be telling Lyric's doctor that there is a family history of CF. If not they are hiding some very important information from their daughter's doctor that may or may not be able to let the doctor do his job better. But ultimately it is up to the parents of the child and if they want to act like there's not an elephant in the room then that's their perogative. I guess if I were the grandma I would just keep bringing it up again and again and again. It's got to be a hard position to be in.

Buckeye · Feb 24, 2009

At the very least your son and daughter-in-law should be telling Lyric's doctor that there is a family history of CF. If not they are hiding some very important information from their daughter's doctor that may or may not be able to let the doctor do his job better. But ultimately it is up to the parents of the child and if they want to act like there's not an elephant in the room then that's their perogative. I guess if I were the grandma I would just keep bringing it up again and again and again. It's got to be a hard position to be in.

valigirl21 · Feb 25, 2009