Which Doctor?

[Ratatosk]

Ditto on the genetic testing. DS one of the most common mutations, so his CF was identified with the initial genetic test; however, his sweat test was 32.

Oh, and I read somewhere about the CFRI conference and there now being 1601 cf mutations identified. Wow!

 

[Ratatosk]

Ditto on the genetic testing. DS one of the most common mutations, so his CF was identified with the initial genetic test; however, his sweat test was 32.

Oh, and I read somewhere about the CFRI conference and there now being 1601 cf mutations identified. Wow!

 

[Ratatosk]

Ditto on the genetic testing. DS one of the most common mutations, so his CF was identified with the initial genetic test; however, his sweat test was 32.

Oh, and I read somewhere about the CFRI conference and there now being 1601 cf mutations identified. Wow!

 

[Ratatosk]

Ditto on the genetic testing. DS one of the most common mutations, so his CF was identified with the initial genetic test; however, his sweat test was 32.

Oh, and I read somewhere about the CFRI conference and there now being 1601 cf mutations identified. Wow!

 

[Ratatosk]

Ditto on the genetic testing. DS one of the most common mutations, so his CF was identified with the initial genetic test; however, his sweat test was 32.
<br />
<br />Oh, and I read somewhere about the CFRI conference and there now being 1601 cf mutations identified. Wow!

 

[daisymae]

Thank you all for your replies. I'm going to call the CF center here in town and see what they think. I'll let you know how it goes. Oh, to answer your question about why she was sweat tested in the first place. From 3-4 months of age she had failure to thrive. The GI Dr ordered an upper GI and it was determined she had severe reflux (which I already suspected was why she wasn't gaining weight. She wasn't keeping any food down). It was also determined through blood test that she has a dairy allergy. Once we figured out the dairy allergy and got her on Prevacid, she started packing on the pounds. At that time they also did a stool test for fat malabsorption and found that she was absorbing fat perfectly fine. So, the doctors attributed the month of "failure to thrive" to the dairy allergy/reflux. But in the back of my mind, because she had the sweat test score of 34 and 30 (I requested the second sweat test and CF genetic screen) I can't seem to get the possibility of CF out of my mind. I just don't know if I'm being overly paranoid or doing the right thing by still pursuing this. This message board has been so helpful!!!!

 

[daisymae]

Thank you all for your replies. I'm going to call the CF center here in town and see what they think. I'll let you know how it goes. Oh, to answer your question about why she was sweat tested in the first place. From 3-4 months of age she had failure to thrive. The GI Dr ordered an upper GI and it was determined she had severe reflux (which I already suspected was why she wasn't gaining weight. She wasn't keeping any food down). It was also determined through blood test that she has a dairy allergy. Once we figured out the dairy allergy and got her on Prevacid, she started packing on the pounds. At that time they also did a stool test for fat malabsorption and found that she was absorbing fat perfectly fine. So, the doctors attributed the month of "failure to thrive" to the dairy allergy/reflux. But in the back of my mind, because she had the sweat test score of 34 and 30 (I requested the second sweat test and CF genetic screen) I can't seem to get the possibility of CF out of my mind. I just don't know if I'm being overly paranoid or doing the right thing by still pursuing this. This message board has been so helpful!!!!

 

[daisymae]

Thank you all for your replies. I'm going to call the CF center here in town and see what they think. I'll let you know how it goes. Oh, to answer your question about why she was sweat tested in the first place. From 3-4 months of age she had failure to thrive. The GI Dr ordered an upper GI and it was determined she had severe reflux (which I already suspected was why she wasn't gaining weight. She wasn't keeping any food down). It was also determined through blood test that she has a dairy allergy. Once we figured out the dairy allergy and got her on Prevacid, she started packing on the pounds. At that time they also did a stool test for fat malabsorption and found that she was absorbing fat perfectly fine. So, the doctors attributed the month of "failure to thrive" to the dairy allergy/reflux. But in the back of my mind, because she had the sweat test score of 34 and 30 (I requested the second sweat test and CF genetic screen) I can't seem to get the possibility of CF out of my mind. I just don't know if I'm being overly paranoid or doing the right thing by still pursuing this. This message board has been so helpful!!!!

 

[daisymae]

Thank you all for your replies. I'm going to call the CF center here in town and see what they think. I'll let you know how it goes. Oh, to answer your question about why she was sweat tested in the first place. From 3-4 months of age she had failure to thrive. The GI Dr ordered an upper GI and it was determined she had severe reflux (which I already suspected was why she wasn't gaining weight. She wasn't keeping any food down). It was also determined through blood test that she has a dairy allergy. Once we figured out the dairy allergy and got her on Prevacid, she started packing on the pounds. At that time they also did a stool test for fat malabsorption and found that she was absorbing fat perfectly fine. So, the doctors attributed the month of "failure to thrive" to the dairy allergy/reflux. But in the back of my mind, because she had the sweat test score of 34 and 30 (I requested the second sweat test and CF genetic screen) I can't seem to get the possibility of CF out of my mind. I just don't know if I'm being overly paranoid or doing the right thing by still pursuing this. This message board has been so helpful!!!!

 

[daisymae]

Thank you all for your replies. I'm going to call the CF center here in town and see what they think. I'll let you know how it goes. Oh, to answer your question about why she was sweat tested in the first place. From 3-4 months of age she had failure to thrive. The GI Dr ordered an upper GI and it was determined she had severe reflux (which I already suspected was why she wasn't gaining weight. She wasn't keeping any food down). It was also determined through blood test that she has a dairy allergy. Once we figured out the dairy allergy and got her on Prevacid, she started packing on the pounds. At that time they also did a stool test for fat malabsorption and found that she was absorbing fat perfectly fine. So, the doctors attributed the month of "failure to thrive" to the dairy allergy/reflux. But in the back of my mind, because she had the sweat test score of 34 and 30 (I requested the second sweat test and CF genetic screen) I can't seem to get the possibility of CF out of my mind. I just don't know if I'm being overly paranoid or doing the right thing by still pursuing this. This message board has been so helpful!!!!

 

[daisymae]

I just wanted to update everyone. I contacted our local CF center and spoke to a nurse telling her my concerns and questions. She took this to the Pulmonologist on call and he suggested I bring her in to see him in his office. So I'm going to call tomorrow for an appointment. The nurse did tell me something that struck me though. She said that in their care center (and it's in a decent sized Texas city) they don't have anyone that had a sweat test score under 60. Don't know what to think about that.

 

[daisymae]

I just wanted to update everyone. I contacted our local CF center and spoke to a nurse telling her my concerns and questions. She took this to the Pulmonologist on call and he suggested I bring her in to see him in his office. So I'm going to call tomorrow for an appointment. The nurse did tell me something that struck me though. She said that in their care center (and it's in a decent sized Texas city) they don't have anyone that had a sweat test score under 60. Don't know what to think about that.

 

[daisymae]

I just wanted to update everyone. I contacted our local CF center and spoke to a nurse telling her my concerns and questions. She took this to the Pulmonologist on call and he suggested I bring her in to see him in his office. So I'm going to call tomorrow for an appointment. The nurse did tell me something that struck me though. She said that in their care center (and it's in a decent sized Texas city) they don't have anyone that had a sweat test score under 60. Don't know what to think about that.

 

[daisymae]

I just wanted to update everyone. I contacted our local CF center and spoke to a nurse telling her my concerns and questions. She took this to the Pulmonologist on call and he suggested I bring her in to see him in his office. So I'm going to call tomorrow for an appointment. The nurse did tell me something that struck me though. She said that in their care center (and it's in a decent sized Texas city) they don't have anyone that had a sweat test score under 60. Don't know what to think about that.

 

[daisymae]

I just wanted to update everyone. I contacted our local CF center and spoke to a nurse telling her my concerns and questions. She took this to the Pulmonologist on call and he suggested I bring her in to see him in his office. So I'm going to call tomorrow for an appointment. The nurse did tell me something that struck me though. She said that in their care center (and it's in a decent sized Texas city) they don't have anyone that had a sweat test score under 60. Don't know what to think about that.

 

[letefk]

We heard that too when our girls tested in at 11 and 49. The 49 was borderline, so they did the genetic test, but they told us it was rare to see CF with numbers below the 60s and 70s. Both tested for atypical CF, and since receiving CF care, it is very clear that CF was the source of their health issues. I can't say that is the case for you, but I am glad that we pursued the genetic testing.

 

[letefk]

We heard that too when our girls tested in at 11 and 49. The 49 was borderline, so they did the genetic test, but they told us it was rare to see CF with numbers below the 60s and 70s. Both tested for atypical CF, and since receiving CF care, it is very clear that CF was the source of their health issues. I can't say that is the case for you, but I am glad that we pursued the genetic testing.

 

[letefk]

We heard that too when our girls tested in at 11 and 49. The 49 was borderline, so they did the genetic test, but they told us it was rare to see CF with numbers below the 60s and 70s. Both tested for atypical CF, and since receiving CF care, it is very clear that CF was the source of their health issues. I can't say that is the case for you, but I am glad that we pursued the genetic testing.

 

[letefk]

We heard that too when our girls tested in at 11 and 49. The 49 was borderline, so they did the genetic test, but they told us it was rare to see CF with numbers below the 60s and 70s. Both tested for atypical CF, and since receiving CF care, it is very clear that CF was the source of their health issues. I can't say that is the case for you, but I am glad that we pursued the genetic testing.

 

[letefk]

We heard that too when our girls tested in at 11 and 49. The 49 was borderline, so they did the genetic test, but they told us it was rare to see CF with numbers below the 60s and 70s. Both tested for atypical CF, and since receiving CF care, it is very clear that CF was the source of their health issues. I can't say that is the case for you, but I am glad that we pursued the genetic testing.