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Alyssa

New member
I'm sorry to say that 50 is not a normal result. That is clearly in the borderline area, which I personally think should be moved....or done away with anyway, because so many people are testing out in the 20's now...then find two CF genes.

I am quite surprised that a doctor who is aware of CF symptoms WITH an elevated sweat test number is calling it negative.... (or should I say allowing a nurse to call and tell you that) I really feel like you should discuss this with the pulmo doctor who ordered the sweat test....this child should be treated as if they have CF until genetic tests have come back...that's how it normally goes when you have both symptoms + elevated sweat test number. My hunch would be that you will find two CF genes, but even if you don't (or only find one) often times people still treat as if they have CF, assuming their gene(s) have not been identified yet.

Your child would benefit from the CF preventative/maintenance medications (Pulmozyme and chest physical therapy)

Be sure to ask for a full Ambry amplified test to make sure they are looking for all the known genes... there are at least 1561 know genes... do not allow them to only look for 89 or less (they like to do that to save money)

Please check out my blog page for our complete story -- my kids both have very low sweat test numbers (according to the official chart) -- 38 and 41, but we did find two very well known CF genes in them. I went for 8 years thinking my daughter didn't have CF because she was a 38 and anything under 40 is normal.... now I know better....many doctors still do not know that a lot of people are testing out far lower than the 40 mark.

Welcome to the site -- sorry you have to be here :)

Please let us know if there is anything else we can help you with.
 

Alyssa

New member
I'm sorry to say that 50 is not a normal result. That is clearly in the borderline area, which I personally think should be moved....or done away with anyway, because so many people are testing out in the 20's now...then find two CF genes.

I am quite surprised that a doctor who is aware of CF symptoms WITH an elevated sweat test number is calling it negative.... (or should I say allowing a nurse to call and tell you that) I really feel like you should discuss this with the pulmo doctor who ordered the sweat test....this child should be treated as if they have CF until genetic tests have come back...that's how it normally goes when you have both symptoms + elevated sweat test number. My hunch would be that you will find two CF genes, but even if you don't (or only find one) often times people still treat as if they have CF, assuming their gene(s) have not been identified yet.

Your child would benefit from the CF preventative/maintenance medications (Pulmozyme and chest physical therapy)

Be sure to ask for a full Ambry amplified test to make sure they are looking for all the known genes... there are at least 1561 know genes... do not allow them to only look for 89 or less (they like to do that to save money)

Please check out my blog page for our complete story -- my kids both have very low sweat test numbers (according to the official chart) -- 38 and 41, but we did find two very well known CF genes in them. I went for 8 years thinking my daughter didn't have CF because she was a 38 and anything under 40 is normal.... now I know better....many doctors still do not know that a lot of people are testing out far lower than the 40 mark.

Welcome to the site -- sorry you have to be here :)

Please let us know if there is anything else we can help you with.
 

Alyssa

New member
I'm sorry to say that 50 is not a normal result. That is clearly in the borderline area, which I personally think should be moved....or done away with anyway, because so many people are testing out in the 20's now...then find two CF genes.

I am quite surprised that a doctor who is aware of CF symptoms WITH an elevated sweat test number is calling it negative.... (or should I say allowing a nurse to call and tell you that) I really feel like you should discuss this with the pulmo doctor who ordered the sweat test....this child should be treated as if they have CF until genetic tests have come back...that's how it normally goes when you have both symptoms + elevated sweat test number. My hunch would be that you will find two CF genes, but even if you don't (or only find one) often times people still treat as if they have CF, assuming their gene(s) have not been identified yet.

Your child would benefit from the CF preventative/maintenance medications (Pulmozyme and chest physical therapy)

Be sure to ask for a full Ambry amplified test to make sure they are looking for all the known genes... there are at least 1561 know genes... do not allow them to only look for 89 or less (they like to do that to save money)

Please check out my blog page for our complete story -- my kids both have very low sweat test numbers (according to the official chart) -- 38 and 41, but we did find two very well known CF genes in them. I went for 8 years thinking my daughter didn't have CF because she was a 38 and anything under 40 is normal.... now I know better....many doctors still do not know that a lot of people are testing out far lower than the 40 mark.

Welcome to the site -- sorry you have to be here :)

Please let us know if there is anything else we can help you with.
 

Alyssa

New member
I'm sorry to say that 50 is not a normal result. That is clearly in the borderline area, which I personally think should be moved....or done away with anyway, because so many people are testing out in the 20's now...then find two CF genes.

I am quite surprised that a doctor who is aware of CF symptoms WITH an elevated sweat test number is calling it negative.... (or should I say allowing a nurse to call and tell you that) I really feel like you should discuss this with the pulmo doctor who ordered the sweat test....this child should be treated as if they have CF until genetic tests have come back...that's how it normally goes when you have both symptoms + elevated sweat test number. My hunch would be that you will find two CF genes, but even if you don't (or only find one) often times people still treat as if they have CF, assuming their gene(s) have not been identified yet.

Your child would benefit from the CF preventative/maintenance medications (Pulmozyme and chest physical therapy)

Be sure to ask for a full Ambry amplified test to make sure they are looking for all the known genes... there are at least 1561 know genes... do not allow them to only look for 89 or less (they like to do that to save money)

Please check out my blog page for our complete story -- my kids both have very low sweat test numbers (according to the official chart) -- 38 and 41, but we did find two very well known CF genes in them. I went for 8 years thinking my daughter didn't have CF because she was a 38 and anything under 40 is normal.... now I know better....many doctors still do not know that a lot of people are testing out far lower than the 40 mark.

Welcome to the site -- sorry you have to be here :)

Please let us know if there is anything else we can help you with.
 

Alyssa

New member
I'm sorry to say that 50 is not a normal result. That is clearly in the borderline area, which I personally think should be moved....or done away with anyway, because so many people are testing out in the 20's now...then find two CF genes.
<br />
<br />I am quite surprised that a doctor who is aware of CF symptoms WITH an elevated sweat test number is calling it negative.... (or should I say allowing a nurse to call and tell you that) I really feel like you should discuss this with the pulmo doctor who ordered the sweat test....this child should be treated as if they have CF until genetic tests have come back...that's how it normally goes when you have both symptoms + elevated sweat test number. My hunch would be that you will find two CF genes, but even if you don't (or only find one) often times people still treat as if they have CF, assuming their gene(s) have not been identified yet.
<br />
<br />Your child would benefit from the CF preventative/maintenance medications (Pulmozyme and chest physical therapy)
<br />
<br />Be sure to ask for a full Ambry amplified test to make sure they are looking for all the known genes... there are at least 1561 know genes... do not allow them to only look for 89 or less (they like to do that to save money)
<br />
<br />Please check out my blog page for our complete story -- my kids both have very low sweat test numbers (according to the official chart) -- 38 and 41, but we did find two very well known CF genes in them. I went for 8 years thinking my daughter didn't have CF because she was a 38 and anything under 40 is normal.... now I know better....many doctors still do not know that a lot of people are testing out far lower than the 40 mark.
<br />
<br />Welcome to the site -- sorry you have to be here :)
<br />
<br />Please let us know if there is anything else we can help you with.
 

kaylasdad

New member
Hi welcome to the site. I see you already got some good advice , I just wanted to add how important it is to make sure you go to a accredited cf clinic. To find one you can go to cff.org .
Sorry you and your family are going through this, you'll be in are thoughts and prayers.
 

kaylasdad

New member
Hi welcome to the site. I see you already got some good advice , I just wanted to add how important it is to make sure you go to a accredited cf clinic. To find one you can go to cff.org .
Sorry you and your family are going through this, you'll be in are thoughts and prayers.
 

kaylasdad

New member
Hi welcome to the site. I see you already got some good advice , I just wanted to add how important it is to make sure you go to a accredited cf clinic. To find one you can go to cff.org .
Sorry you and your family are going through this, you'll be in are thoughts and prayers.
 

kaylasdad

New member
Hi welcome to the site. I see you already got some good advice , I just wanted to add how important it is to make sure you go to a accredited cf clinic. To find one you can go to cff.org .
Sorry you and your family are going through this, you'll be in are thoughts and prayers.
 

kaylasdad

New member
Hi welcome to the site. I see you already got some good advice , I just wanted to add how important it is to make sure you go to a accredited cf clinic. To find one you can go to cff.org .
<br />Sorry you and your family are going through this, you'll be in are thoughts and prayers.
 

JORDYSMOM

New member
Hi there. I just wanted to say welcome to the site, and that I'm sorry you have reason to be here. I agree with everyone else's comments. I know this is all so overwhelming, and frightening. Just take things one step at a time, and we will be here all along the way.

Stacey
 

JORDYSMOM

New member
Hi there. I just wanted to say welcome to the site, and that I'm sorry you have reason to be here. I agree with everyone else's comments. I know this is all so overwhelming, and frightening. Just take things one step at a time, and we will be here all along the way.

Stacey
 

JORDYSMOM

New member
Hi there. I just wanted to say welcome to the site, and that I'm sorry you have reason to be here. I agree with everyone else's comments. I know this is all so overwhelming, and frightening. Just take things one step at a time, and we will be here all along the way.

Stacey
 

JORDYSMOM

New member
Hi there. I just wanted to say welcome to the site, and that I'm sorry you have reason to be here. I agree with everyone else's comments. I know this is all so overwhelming, and frightening. Just take things one step at a time, and we will be here all along the way.

Stacey
 

JORDYSMOM

New member
Hi there. I just wanted to say welcome to the site, and that I'm sorry you have reason to be here. I agree with everyone else's comments. I know this is all so overwhelming, and frightening. Just take things one step at a time, and we will be here all along the way.
<br />
<br />Stacey
 

shimmereestar

New member
Welcome,

I would definitely push for genetic testing, regardless of family history or sweat test resuts. Genetic testing can positively rule out or rule in cf. The doctor will have some blood drawn and send it off to the lab. It will probably take two or three weeks to get back the results. My daughter was diagnosed through genetic testing because she wouldn't sweat for the test. Good luck and my thoughts and prayers are with you and your family. I'm truly sorry you are having to go through all of this.
 

shimmereestar

New member
Welcome,

I would definitely push for genetic testing, regardless of family history or sweat test resuts. Genetic testing can positively rule out or rule in cf. The doctor will have some blood drawn and send it off to the lab. It will probably take two or three weeks to get back the results. My daughter was diagnosed through genetic testing because she wouldn't sweat for the test. Good luck and my thoughts and prayers are with you and your family. I'm truly sorry you are having to go through all of this.
 

shimmereestar

New member
Welcome,

I would definitely push for genetic testing, regardless of family history or sweat test resuts. Genetic testing can positively rule out or rule in cf. The doctor will have some blood drawn and send it off to the lab. It will probably take two or three weeks to get back the results. My daughter was diagnosed through genetic testing because she wouldn't sweat for the test. Good luck and my thoughts and prayers are with you and your family. I'm truly sorry you are having to go through all of this.
 

shimmereestar

New member
Welcome,

I would definitely push for genetic testing, regardless of family history or sweat test resuts. Genetic testing can positively rule out or rule in cf. The doctor will have some blood drawn and send it off to the lab. It will probably take two or three weeks to get back the results. My daughter was diagnosed through genetic testing because she wouldn't sweat for the test. Good luck and my thoughts and prayers are with you and your family. I'm truly sorry you are having to go through all of this.
 

shimmereestar

New member
Welcome,
<br />
<br />I would definitely push for genetic testing, regardless of family history or sweat test resuts. Genetic testing can positively rule out or rule in cf. The doctor will have some blood drawn and send it off to the lab. It will probably take two or three weeks to get back the results. My daughter was diagnosed through genetic testing because she wouldn't sweat for the test. Good luck and my thoughts and prayers are with you and your family. I'm truly sorry you are having to go through all of this.
 
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