Carrier Testing for Relatives

[Emily65Roses]

Oh and similar story... when I was dx, my mom got blamed by my fathers' parents. They were all "This came from you, it's YOUR fault." Which is stupid as hell, because while my mom gave me a Delta F508, my dad gave me this really bizarre mutation that's worse. Hah!

It's ridiculous how fast a family jumps to blame genes on one person rather than another. It's GENES, it's not even like you did it on purpose, HELLO!!!

Kay I'm done. But I still wish to slap that woman. <img src="i/expressions/devil.gif" border="0">

 

[ktsmom]

Lastest response from one of our family members: "If we thought it would help Katy, we and/or our children would get tested" (as carriers).

{tries to continue eating lunch without getting angry........}

 

[ktsmom]

Lastest response from one of our family members: "If we thought it would help Katy, we and/or our children would get tested" (as carriers).

{tries to continue eating lunch without getting angry........}

 

[ktsmom]

Lastest response from one of our family members: "If we thought it would help Katy, we and/or our children would get tested" (as carriers).

{tries to continue eating lunch without getting angry........}

 

[folione]

Well, ya know...at the end of the day you can lead a horse's a#% to water but you can't make it think....It's a shame that MIL could end up propagating incorrect advice and you proably just have to hope the geneticist convinces her she's wrong.

 

[folione]

Well, ya know...at the end of the day you can lead a horse's a#% to water but you can't make it think....It's a shame that MIL could end up propagating incorrect advice and you proably just have to hope the geneticist convinces her she's wrong.

 

[folione]

Well, ya know...at the end of the day you can lead a horse's a#% to water but you can't make it think....It's a shame that MIL could end up propagating incorrect advice and you proably just have to hope the geneticist convinces her she's wrong.

 

[janddburke]

when our daughter was first diagnosed we experienced a multitude of responses from our family members.
while frustrating at the time, we do look back now and laugh.

my husband is the youngest of 7 kids most of whom are finished adding to their families. some with asthma, cronic bronchitis and other respiratory issues.
none of them wanted to get tested. not interested even though 1 brother had 2 kids after Jess was diagnosed. my SIL felt it was not necessary because 'it didn't run in HER family'.
I just shrugged and told them that when their kids are ready to be parents (are we ever ready?) just let them know this information is available to them to assist in their testing.

I'm the middle of 3 kids. my sister and brother both got tested right away.
sister is a carrier but her hubby is not but she got each of her 3 kids tested just after they were born anyway.
my brother is not a carrier, but my SIL got tested anyway.

it's just amazing how differently people reacted.

now my parents are divorced. this created the unique situation of one wanting to perhaps blame the other.... I told them they needed the data from me to definitively tell for sure (not true) which I wouldn't give them.
why light that powder keg, eh?

like I said, now we look back and laugh, but at the time not so funny.

If we couldn't laugh we'd all go insane.

 

[janddburke]

when our daughter was first diagnosed we experienced a multitude of responses from our family members.
while frustrating at the time, we do look back now and laugh.

my husband is the youngest of 7 kids most of whom are finished adding to their families. some with asthma, cronic bronchitis and other respiratory issues.
none of them wanted to get tested. not interested even though 1 brother had 2 kids after Jess was diagnosed. my SIL felt it was not necessary because 'it didn't run in HER family'.
I just shrugged and told them that when their kids are ready to be parents (are we ever ready?) just let them know this information is available to them to assist in their testing.

I'm the middle of 3 kids. my sister and brother both got tested right away.
sister is a carrier but her hubby is not but she got each of her 3 kids tested just after they were born anyway.
my brother is not a carrier, but my SIL got tested anyway.

it's just amazing how differently people reacted.

now my parents are divorced. this created the unique situation of one wanting to perhaps blame the other.... I told them they needed the data from me to definitively tell for sure (not true) which I wouldn't give them.
why light that powder keg, eh?

like I said, now we look back and laugh, but at the time not so funny.

If we couldn't laugh we'd all go insane.

 

[janddburke]

when our daughter was first diagnosed we experienced a multitude of responses from our family members.
while frustrating at the time, we do look back now and laugh.

my husband is the youngest of 7 kids most of whom are finished adding to their families. some with asthma, cronic bronchitis and other respiratory issues.
none of them wanted to get tested. not interested even though 1 brother had 2 kids after Jess was diagnosed. my SIL felt it was not necessary because 'it didn't run in HER family'.
I just shrugged and told them that when their kids are ready to be parents (are we ever ready?) just let them know this information is available to them to assist in their testing.

I'm the middle of 3 kids. my sister and brother both got tested right away.
sister is a carrier but her hubby is not but she got each of her 3 kids tested just after they were born anyway.
my brother is not a carrier, but my SIL got tested anyway.

it's just amazing how differently people reacted.

now my parents are divorced. this created the unique situation of one wanting to perhaps blame the other.... I told them they needed the data from me to definitively tell for sure (not true) which I wouldn't give them.
why light that powder keg, eh?

like I said, now we look back and laugh, but at the time not so funny.

If we couldn't laugh we'd all go insane.

 

[Ratatosk]

So I sent and email to the local clinic, which got referred to the CF Clinic and I got a worthless response from one of the doctors there. DH's cousin DID talk to her primary doctor and pretty much got the run-around for two weeks before giving up. Sigh... See below:

Thank you for writing to us.

The following is a reply from one of our CTC Physicians:

I would recommend that anyone who desires carrier testing first sit down with their health care provider and discuss how or how not this information would be of value to them personally or their family. The cost of the testing may be a lot and won't be covered by insurance. This is not question that is easily handled over the phone or by sending off some blood. The results and its implications will need a lot of explaining. That is the reason that they received advice to meet with genetic counselor at the U.

If you have additional questions, please call our ASK-A-NURSE at XXX-XXXX

My question to the Clinic:
Topic: General Comments
Email Response Requested: Yes

Our son was diagnosed shortly after he was born with Cystic Fibrosis -- a
genetic disease. Several of our family members would like to have carrier
testing done and don't know where to start. One also goes to XXX
and asked her family doctor, child's pediatrician, her ob-gyn and finally
after two weeks of calling around was referred to UXXX's genetic's
department. Wondering if we could get some info on having people tested.
A friend of mine just went to the local XXXX clinic and the
bloodwork was sent out...

 

[Ratatosk]

So I sent and email to the local clinic, which got referred to the CF Clinic and I got a worthless response from one of the doctors there. DH's cousin DID talk to her primary doctor and pretty much got the run-around for two weeks before giving up. Sigh... See below:

Thank you for writing to us.

The following is a reply from one of our CTC Physicians:

I would recommend that anyone who desires carrier testing first sit down with their health care provider and discuss how or how not this information would be of value to them personally or their family. The cost of the testing may be a lot and won't be covered by insurance. This is not question that is easily handled over the phone or by sending off some blood. The results and its implications will need a lot of explaining. That is the reason that they received advice to meet with genetic counselor at the U.

If you have additional questions, please call our ASK-A-NURSE at XXX-XXXX

My question to the Clinic:
Topic: General Comments
Email Response Requested: Yes

Our son was diagnosed shortly after he was born with Cystic Fibrosis -- a
genetic disease. Several of our family members would like to have carrier
testing done and don't know where to start. One also goes to XXX
and asked her family doctor, child's pediatrician, her ob-gyn and finally
after two weeks of calling around was referred to UXXX's genetic's
department. Wondering if we could get some info on having people tested.
A friend of mine just went to the local XXXX clinic and the
bloodwork was sent out...

 

[Ratatosk]

So I sent and email to the local clinic, which got referred to the CF Clinic and I got a worthless response from one of the doctors there. DH's cousin DID talk to her primary doctor and pretty much got the run-around for two weeks before giving up. Sigh... See below:

Thank you for writing to us.

The following is a reply from one of our CTC Physicians:

I would recommend that anyone who desires carrier testing first sit down with their health care provider and discuss how or how not this information would be of value to them personally or their family. The cost of the testing may be a lot and won't be covered by insurance. This is not question that is easily handled over the phone or by sending off some blood. The results and its implications will need a lot of explaining. That is the reason that they received advice to meet with genetic counselor at the U.

If you have additional questions, please call our ASK-A-NURSE at XXX-XXXX

My question to the Clinic:
Topic: General Comments
Email Response Requested: Yes

Our son was diagnosed shortly after he was born with Cystic Fibrosis -- a
genetic disease. Several of our family members would like to have carrier
testing done and don't know where to start. One also goes to XXX
and asked her family doctor, child's pediatrician, her ob-gyn and finally
after two weeks of calling around was referred to UXXX's genetic's
department. Wondering if we could get some info on having people tested.
A friend of mine just went to the local XXXX clinic and the
bloodwork was sent out...

 

[Momtana]

My sister's doctor advised her to get testing for her kids "off the record" at an independent lab - said he wouldn't even chart that she asked about CF testing. What do you make of that?

 

[Momtana]

My sister's doctor advised her to get testing for her kids "off the record" at an independent lab - said he wouldn't even chart that she asked about CF testing. What do you make of that?

 

[Momtana]

My sister's doctor advised her to get testing for her kids "off the record" at an independent lab - said he wouldn't even chart that she asked about CF testing. What do you make of that?

 

[Ratatosk]

I know this doctor in the past has always, always had issues with certain tests costing too much money... Gee, wouldn't you think a CF diagnosis might cost a tad bit more in the long run.

I spoke to someone else who had their entire family -- aunts, uncles, grandparents, cousins, siblings, nieces, nephews all tested at the local clinic about 75 miles north of here prior to a family reunion, so they could inform family members about the potential for CF and out of that group only one person couldn't get their test covered by insurance.

 

[Ratatosk]

I know this doctor in the past has always, always had issues with certain tests costing too much money... Gee, wouldn't you think a CF diagnosis might cost a tad bit more in the long run.

I spoke to someone else who had their entire family -- aunts, uncles, grandparents, cousins, siblings, nieces, nephews all tested at the local clinic about 75 miles north of here prior to a family reunion, so they could inform family members about the potential for CF and out of that group only one person couldn't get their test covered by insurance.

 

[Ratatosk]

I know this doctor in the past has always, always had issues with certain tests costing too much money... Gee, wouldn't you think a CF diagnosis might cost a tad bit more in the long run.

I spoke to someone else who had their entire family -- aunts, uncles, grandparents, cousins, siblings, nieces, nephews all tested at the local clinic about 75 miles north of here prior to a family reunion, so they could inform family members about the potential for CF and out of that group only one person couldn't get their test covered by insurance.

 

[blindhearted]

I havent read the other post...

Lisa, are you sure your MIL is a retired nursing instructor? to be a nursing instructor, she doesnt seem to understand much medically. My husband is a nurse and I know they covered CF and how it is genetically passed down. Did she skip that chapter?

Now on family testing. I am the only one in my family with CF. To my knowledge only one of my extended family memebers have been tested and that was because he and his wife was over the age of 30 and it was required. he was a carrier, but his wife was not. My brother has not been tested, neither has his wife. When they had their first child, they told the doctor that I had CF, Dr told them that they did not need testing and would not test them for the CF genes because it was only a concern if the CFer was on the mother-to-be side of the family not the father-to-be. That really made me mad. My brother tried to explain it to the doctors but got fustrated. I explained to my SIL that wasnt the case. Anyone could be carriers. She understood but by then she was already pregnant. Thank goodness neither of my nieces have CF and I continue to be the only one. I have told them both that my CF clinic has offered to test them if they want and when they are ready.

Does your son go to a CF Center? As the doctor that he goes to. My doctor told me if my brother, his wife and kids wanted to be tested to "bring them in. We will test and bill the insurance." Insurance might not pay, but a $200+ dollar test is a lot cheaper than CF, I promise.