Which Doctor?

daisymae

New member
Hi Everyone,

I've posted on here only a few times. My daughter is almost 11 months old and had 2 sweat tests done when she was 4 months old. Her scores were 34 and 30. She also had the mutation screening done (I think 23 mutations) and came back negative. So, her pediatrician, pediatric GI doctor and pediatric allergist all think she does not have CF. While it is quite possible that she doesn't there is a nagging fear in the back of my mind (mainly because of her sweat test scores and what I read on these message boards) that she may have an A-typical form. Did any of you go through this with doctors not thinking your child had it and not wanting to get a full genetic screen done? If so, how did you convince them to test further and which doctor would be the best to get the test ordered from? Should I try to contact a genetic counselor or even our local CF center? Thanks!
 

daisymae

New member
Hi Everyone,

I've posted on here only a few times. My daughter is almost 11 months old and had 2 sweat tests done when she was 4 months old. Her scores were 34 and 30. She also had the mutation screening done (I think 23 mutations) and came back negative. So, her pediatrician, pediatric GI doctor and pediatric allergist all think she does not have CF. While it is quite possible that she doesn't there is a nagging fear in the back of my mind (mainly because of her sweat test scores and what I read on these message boards) that she may have an A-typical form. Did any of you go through this with doctors not thinking your child had it and not wanting to get a full genetic screen done? If so, how did you convince them to test further and which doctor would be the best to get the test ordered from? Should I try to contact a genetic counselor or even our local CF center? Thanks!
 

daisymae

New member
Hi Everyone,

I've posted on here only a few times. My daughter is almost 11 months old and had 2 sweat tests done when she was 4 months old. Her scores were 34 and 30. She also had the mutation screening done (I think 23 mutations) and came back negative. So, her pediatrician, pediatric GI doctor and pediatric allergist all think she does not have CF. While it is quite possible that she doesn't there is a nagging fear in the back of my mind (mainly because of her sweat test scores and what I read on these message boards) that she may have an A-typical form. Did any of you go through this with doctors not thinking your child had it and not wanting to get a full genetic screen done? If so, how did you convince them to test further and which doctor would be the best to get the test ordered from? Should I try to contact a genetic counselor or even our local CF center? Thanks!
 

daisymae

New member
Hi Everyone,

I've posted on here only a few times. My daughter is almost 11 months old and had 2 sweat tests done when she was 4 months old. Her scores were 34 and 30. She also had the mutation screening done (I think 23 mutations) and came back negative. So, her pediatrician, pediatric GI doctor and pediatric allergist all think she does not have CF. While it is quite possible that she doesn't there is a nagging fear in the back of my mind (mainly because of her sweat test scores and what I read on these message boards) that she may have an A-typical form. Did any of you go through this with doctors not thinking your child had it and not wanting to get a full genetic screen done? If so, how did you convince them to test further and which doctor would be the best to get the test ordered from? Should I try to contact a genetic counselor or even our local CF center? Thanks!
 

daisymae

New member
Hi Everyone,
<br />
<br />I've posted on here only a few times. My daughter is almost 11 months old and had 2 sweat tests done when she was 4 months old. Her scores were 34 and 30. She also had the mutation screening done (I think 23 mutations) and came back negative. So, her pediatrician, pediatric GI doctor and pediatric allergist all think she does not have CF. While it is quite possible that she doesn't there is a nagging fear in the back of my mind (mainly because of her sweat test scores and what I read on these message boards) that she may have an A-typical form. Did any of you go through this with doctors not thinking your child had it and not wanting to get a full genetic screen done? If so, how did you convince them to test further and which doctor would be the best to get the test ordered from? Should I try to contact a genetic counselor or even our local CF center? Thanks!
 
S

sdelorenzo

Guest
Yes, I would make an appt with the local cf center. Hopefully they will run full genetic testing. If anything, it will give you peace of mind.
Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Yes, I would make an appt with the local cf center. Hopefully they will run full genetic testing. If anything, it will give you peace of mind.
Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Yes, I would make an appt with the local cf center. Hopefully they will run full genetic testing. If anything, it will give you peace of mind.
Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Yes, I would make an appt with the local cf center. Hopefully they will run full genetic testing. If anything, it will give you peace of mind.
Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 
S

sdelorenzo

Guest
Yes, I would make an appt with the local cf center. Hopefully they will run full genetic testing. If anything, it will give you peace of mind.
<br />Sharon, mom of Sophia, 7 and Jack, 4 both with cf
 

Buckeye

New member
You could contact your local CF clinic and let them decide if she needs futher testing. What are your daughter's symptons that lead you think she may have CF? Why did they do the sweat test in the first place?
 

Buckeye

New member
You could contact your local CF clinic and let them decide if she needs futher testing. What are your daughter's symptons that lead you think she may have CF? Why did they do the sweat test in the first place?
 

Buckeye

New member
You could contact your local CF clinic and let them decide if she needs futher testing. What are your daughter's symptons that lead you think she may have CF? Why did they do the sweat test in the first place?
 

Buckeye

New member
You could contact your local CF clinic and let them decide if she needs futher testing. What are your daughter's symptons that lead you think she may have CF? Why did they do the sweat test in the first place?
 

Buckeye

New member
You could contact your local CF clinic and let them decide if she needs futher testing. What are your daughter's symptons that lead you think she may have CF? Why did they do the sweat test in the first place?
 

JORDYSMOM

New member
Always listen to your mommy voice. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In my opinion, testing for 23 mutations out of over 1500 is completely inadequate. If there were sufficient symptoms to test in the first place, you should do the full genetic test. It is becomeing more and more common for people with CF to be diagnosed in their later years; even as adults. My son was 15!

Go to your local CF center, and get the full panel genetic test. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Always listen to your mommy voice. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In my opinion, testing for 23 mutations out of over 1500 is completely inadequate. If there were sufficient symptoms to test in the first place, you should do the full genetic test. It is becomeing more and more common for people with CF to be diagnosed in their later years; even as adults. My son was 15!

Go to your local CF center, and get the full panel genetic test. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Always listen to your mommy voice. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In my opinion, testing for 23 mutations out of over 1500 is completely inadequate. If there were sufficient symptoms to test in the first place, you should do the full genetic test. It is becomeing more and more common for people with CF to be diagnosed in their later years; even as adults. My son was 15!

Go to your local CF center, and get the full panel genetic test. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Always listen to your mommy voice. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In my opinion, testing for 23 mutations out of over 1500 is completely inadequate. If there were sufficient symptoms to test in the first place, you should do the full genetic test. It is becomeing more and more common for people with CF to be diagnosed in their later years; even as adults. My son was 15!

Go to your local CF center, and get the full panel genetic test. Please keep us posted.

Stacey
 

JORDYSMOM

New member
Always listen to your mommy voice. <img src="i/expressions/face-icon-small-smile.gif" border="0"> In my opinion, testing for 23 mutations out of over 1500 is completely inadequate. If there were sufficient symptoms to test in the first place, you should do the full genetic test. It is becomeing more and more common for people with CF to be diagnosed in their later years; even as adults. My son was 15!
<br />
<br />Go to your local CF center, and get the full panel genetic test. Please keep us posted.
<br />
<br />Stacey
 
Top