This is new to me, I need guidance please

[Quandushi]

My 6 year old daughter has textbook CF symptoms:

> Constipation and bowel obsruction issues since birth

> Frequent respiratory infections, hopsitlized for pnemoenia at age 4

> Failure to gain weight despite healthy appetite (She is about 33 pounds at age 6)

I had her do a sweat test a few weeks ago and the result on both arms was 41. Both the nurse who adminstered the test as well as our pediatrician said not to worry about CFbased on thise results, but her symptoms continue and I cant help but worry. I have an appointment with a pediatric pulmonologist on 2/25/11 but I am going out of my mind wanting to know something more before then.

Any advice?

 

[Quandushi]

My 6 year old daughter has textbook CF symptoms:

> Constipation and bowel obsruction issues since birth

> Frequent respiratory infections, hopsitlized for pnemoenia at age 4

> Failure to gain weight despite healthy appetite (She is about 33 pounds at age 6)

I had her do a sweat test a few weeks ago and the result on both arms was 41. Both the nurse who adminstered the test as well as our pediatrician said not to worry about CFbased on thise results, but her symptoms continue and I cant help but worry. I have an appointment with a pediatric pulmonologist on 2/25/11 but I am going out of my mind wanting to know something more before then.

Any advice?

 

[Quandushi]

My 6 year old daughter has textbook CF symptoms:
<br />
<br />> Constipation and bowel obsruction issues since birth
<br />
<br />> Frequent respiratory infections, hopsitlized for pnemoenia at age 4
<br />
<br />> Failure to gain weight despite healthy appetite (She is about 33 pounds at age 6)
<br />
<br />I had her do a sweat test a few weeks ago and the result on both arms was 41. Both the nurse who adminstered the test as well as our pediatrician said not to worry about CFbased on thise results, but her symptoms continue and I cant help but worry. I have an appointment with a pediatric pulmonologist on 2/25/11 but I am going out of my mind wanting to know something more before then.
<br />
<br />Any advice?

 

[Ratatosk]

I believe the CFF indicates sweat tests should be conducted at an accredditted CF facility.

IMO, she does have quite a few symptoms similar to CF. Keep pushing for answers!

 

[Ratatosk]

I believe the CFF indicates sweat tests should be conducted at an accredditted CF facility.

IMO, she does have quite a few symptoms similar to CF. Keep pushing for answers!

 

[Ratatosk]

I believe the CFF indicates sweat tests should be conducted at an accredditted CF facility.
<br />
<br />IMO, she does have quite a few symptoms similar to CF. Keep pushing for answers!

 

[Mommafirst]

I think you are smart to keep pushing. A 41 is a borderline not a clear negative outcome. Considering her very classic CF issues and the borderline sweat test, she should have blood drawn to run genetics for CF. They will probably start with a small panel of CF mutations. This can be as few as 30 of the over 1500 mutations. However, those 30 account for more than 75% of all CF patients -- at least one of their mutations. Its much cheaper to run the small panel, and then move to the more extensive search if you need to.

Don't drop the fight. Knowing what is going on will help your daughter so much.

 

[Mommafirst]

I think you are smart to keep pushing. A 41 is a borderline not a clear negative outcome. Considering her very classic CF issues and the borderline sweat test, she should have blood drawn to run genetics for CF. They will probably start with a small panel of CF mutations. This can be as few as 30 of the over 1500 mutations. However, those 30 account for more than 75% of all CF patients -- at least one of their mutations. Its much cheaper to run the small panel, and then move to the more extensive search if you need to.

Don't drop the fight. Knowing what is going on will help your daughter so much.

 

[Mommafirst]

I think you are smart to keep pushing. A 41 is a borderline not a clear negative outcome. Considering her very classic CF issues and the borderline sweat test, she should have blood drawn to run genetics for CF. They will probably start with a small panel of CF mutations. This can be as few as 30 of the over 1500 mutations. However, those 30 account for more than 75% of all CF patients -- at least one of their mutations. Its much cheaper to run the small panel, and then move to the more extensive search if you need to.
<br />
<br />Don't drop the fight. Knowing what is going on will help your daughter so much.