how to test for cf when doctors wont approve

M

momtocfr

New member
My MIL has had lung problems ever since she was about 4-5. She is now in her 50's and still has a lot of lung issues. She is currently in the hospital for pneumonia. When my son was diagnosed with cf she thought maybe she had it as well so she went to her pulmo. doc and asked if she could be tested and he refused to refer her to be tested. She really wants to be tested and I feel the same way. My son is 5 and spends a lot of time with his me'me and if she does have it I dont know what that would mean for their relationship. I think being tested would be better than not knowing and also I could be putting my child at risk if she does end up having cf... How do adults get tested when their docs dont feel its necessary??? HELP!


Melissa mom to dylan 8nocf and caleb 5wcf
 
M

momtocfr

New member
My MIL has had lung problems ever since she was about 4-5. She is now in her 50's and still has a lot of lung issues. She is currently in the hospital for pneumonia. When my son was diagnosed with cf she thought maybe she had it as well so she went to her pulmo. doc and asked if she could be tested and he refused to refer her to be tested. She really wants to be tested and I feel the same way. My son is 5 and spends a lot of time with his me'me and if she does have it I dont know what that would mean for their relationship. I think being tested would be better than not knowing and also I could be putting my child at risk if she does end up having cf... How do adults get tested when their docs dont feel its necessary??? HELP!


Melissa mom to dylan 8nocf and caleb 5wcf
 
M

momtocfr

New member
My MIL has had lung problems ever since she was about 4-5. She is now in her 50's and still has a lot of lung issues. She is currently in the hospital for pneumonia. When my son was diagnosed with cf she thought maybe she had it as well so she went to her pulmo. doc and asked if she could be tested and he refused to refer her to be tested. She really wants to be tested and I feel the same way. My son is 5 and spends a lot of time with his me'me and if she does have it I dont know what that would mean for their relationship. I think being tested would be better than not knowing and also I could be putting my child at risk if she does end up having cf... How do adults get tested when their docs dont feel its necessary??? HELP!


Melissa mom to dylan 8nocf and caleb 5wcf
 
N

NoExcuses

New member
go to another doctor. there will be a doc out there that will test for CF.

some docs get slapped on the wrist (money taken out of their annual bonuses) for ordering too many tests.

so find a doc who is more concerned about his patients than his own wallet.

there will be a doc out there who will simply order the test. it's not like he has to do it - it's a simple cheek swab and off to Ambry Genetics for testing.

Just keep at it. Someone will order for you.
 
N

NoExcuses

New member
go to another doctor. there will be a doc out there that will test for CF.

some docs get slapped on the wrist (money taken out of their annual bonuses) for ordering too many tests.

so find a doc who is more concerned about his patients than his own wallet.

there will be a doc out there who will simply order the test. it's not like he has to do it - it's a simple cheek swab and off to Ambry Genetics for testing.

Just keep at it. Someone will order for you.
 
N

NoExcuses

New member
go to another doctor. there will be a doc out there that will test for CF.

some docs get slapped on the wrist (money taken out of their annual bonuses) for ordering too many tests.

so find a doc who is more concerned about his patients than his own wallet.

there will be a doc out there who will simply order the test. it's not like he has to do it - it's a simple cheek swab and off to Ambry Genetics for testing.

Just keep at it. Someone will order for you.
 
R

Ratatosk

Administrator
Staff member
When DS was released from the NICU at 4 weeks, he ended right back in the regular hospital with another infection. We were wondering if he maybe had abscess... So we'd asked for some additional blood tests, a CT or US as per our ID specialist in the city. They refused.

Our attorney once told us that if we ask for a test and the doctor refuses, then say, okay, but please put a note in his file indicating "patient/parent requested such and such a test, but we declined"...
 
R

Ratatosk

Administrator
Staff member
When DS was released from the NICU at 4 weeks, he ended right back in the regular hospital with another infection. We were wondering if he maybe had abscess... So we'd asked for some additional blood tests, a CT or US as per our ID specialist in the city. They refused.

Our attorney once told us that if we ask for a test and the doctor refuses, then say, okay, but please put a note in his file indicating "patient/parent requested such and such a test, but we declined"...
 
R

Ratatosk

Administrator
Staff member
When DS was released from the NICU at 4 weeks, he ended right back in the regular hospital with another infection. We were wondering if he maybe had abscess... So we'd asked for some additional blood tests, a CT or US as per our ID specialist in the city. They refused.

Our attorney once told us that if we ask for a test and the doctor refuses, then say, okay, but please put a note in his file indicating "patient/parent requested such and such a test, but we declined"...
 
J

julie

New member
Get the doc in the hospital to order some genetic testing and/or a sweat test. i guarantee you that with the family history of CF (your child) any doc. in his right mind will test!
 
J

julie

New member
Get the doc in the hospital to order some genetic testing and/or a sweat test. i guarantee you that with the family history of CF (your child) any doc. in his right mind will test!
 
J

julie

New member
Get the doc in the hospital to order some genetic testing and/or a sweat test. i guarantee you that with the family history of CF (your child) any doc. in his right mind will test!
 
S

sdelorenzo

Guest
Both my parents and my husband's parents had genetic testing done at the children's hospital. We were trying to see what side of the family carried the gene. Perhaps you could call the genetic's dept at the children's hospital. I wouldn't go into all of the details about you thinking she might have cf, just that you want to know if she carries the gene as well. Then see what genetic testing says. That is one way easy way to go about it.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Both my parents and my husband's parents had genetic testing done at the children's hospital. We were trying to see what side of the family carried the gene. Perhaps you could call the genetic's dept at the children's hospital. I wouldn't go into all of the details about you thinking she might have cf, just that you want to know if she carries the gene as well. Then see what genetic testing says. That is one way easy way to go about it.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Both my parents and my husband's parents had genetic testing done at the children's hospital. We were trying to see what side of the family carried the gene. Perhaps you could call the genetic's dept at the children's hospital. I wouldn't go into all of the details about you thinking she might have cf, just that you want to know if she carries the gene as well. Then see what genetic testing says. That is one way easy way to go about it.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
J

JustDucky

New member
I say fight for it!MY original pulmo did not test me 4 years ago because he said i didn't show the typical signs of CF. I learned that an internist had written an order for the sweat test but it was later cancelled by him. Two years later, while in hospital again for yet another pseudo infection (B cepacia no less!) my primary doc literally threatened to drive there and do it herself LOL! They expected a totally negative result, instead, they got borderline (50) with chloride being higher than sodium (opposite in normal people). So....now they classify me as atypical CF. I guess my doc showed them!
So, please, if one doc doesn't do it, find one who will. Good luck to you and keep us updated. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I say fight for it!MY original pulmo did not test me 4 years ago because he said i didn't show the typical signs of CF. I learned that an internist had written an order for the sweat test but it was later cancelled by him. Two years later, while in hospital again for yet another pseudo infection (B cepacia no less!) my primary doc literally threatened to drive there and do it herself LOL! They expected a totally negative result, instead, they got borderline (50) with chloride being higher than sodium (opposite in normal people). So....now they classify me as atypical CF. I guess my doc showed them!
So, please, if one doc doesn't do it, find one who will. Good luck to you and keep us updated. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

JustDucky

New member
I say fight for it!MY original pulmo did not test me 4 years ago because he said i didn't show the typical signs of CF. I learned that an internist had written an order for the sweat test but it was later cancelled by him. Two years later, while in hospital again for yet another pseudo infection (B cepacia no less!) my primary doc literally threatened to drive there and do it herself LOL! They expected a totally negative result, instead, they got borderline (50) with chloride being higher than sodium (opposite in normal people). So....now they classify me as atypical CF. I guess my doc showed them!
So, please, if one doc doesn't do it, find one who will. Good luck to you and keep us updated. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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