Not sure what to do

[grannylana]

I am sorry you are going through this but this web site will be a great help to you.
I agree - get the test. You can hope and pray the diagnosis is negative but then you will know for sure. Take charge of your daughters health.
I can not understand doctors and their reluctance to test further but I know from experience that it happens often. I have heard from several on this site about that and the advise they have all given me for my granddaughter is knowledge is power so get the answers to your questions.
We are continuing to ask - and ask - and if no mutations are found we will keep asking until we know what is wrong with our child.

I hope for you only good news!

Keep your chin up mom!

 

[grannylana]

I am sorry you are going through this but this web site will be a great help to you.
I agree - get the test. You can hope and pray the diagnosis is negative but then you will know for sure. Take charge of your daughters health.
I can not understand doctors and their reluctance to test further but I know from experience that it happens often. I have heard from several on this site about that and the advise they have all given me for my granddaughter is knowledge is power so get the answers to your questions.
We are continuing to ask - and ask - and if no mutations are found we will keep asking until we know what is wrong with our child.

I hope for you only good news!

Keep your chin up mom!

 

[grannylana]

I am sorry you are going through this but this web site will be a great help to you.
I agree - get the test. You can hope and pray the diagnosis is negative but then you will know for sure. Take charge of your daughters health.
I can not understand doctors and their reluctance to test further but I know from experience that it happens often. I have heard from several on this site about that and the advise they have all given me for my granddaughter is knowledge is power so get the answers to your questions.
We are continuing to ask - and ask - and if no mutations are found we will keep asking until we know what is wrong with our child.

I hope for you only good news!

Keep your chin up mom!

 

[grannylana]

I am sorry you are going through this but this web site will be a great help to you.
I agree - get the test. You can hope and pray the diagnosis is negative but then you will know for sure. Take charge of your daughters health.
I can not understand doctors and their reluctance to test further but I know from experience that it happens often. I have heard from several on this site about that and the advise they have all given me for my granddaughter is knowledge is power so get the answers to your questions.
We are continuing to ask - and ask - and if no mutations are found we will keep asking until we know what is wrong with our child.

I hope for you only good news!

Keep your chin up mom!

 

[Confused]

No, it was just done recently and yes at an accredited facility, so I know it means it is right. Are there ever patients diagnosed with CF when their score is so low?

 

[Confused]

No, it was just done recently and yes at an accredited facility, so I know it means it is right. Are there ever patients diagnosed with CF when their score is so low?

 

[Confused]

No, it was just done recently and yes at an accredited facility, so I know it means it is right. Are there ever patients diagnosed with CF when their score is so low?

 

[Confused]

No, it was just done recently and yes at an accredited facility, so I know it means it is right. Are there ever patients diagnosed with CF when their score is so low?

 

[Confused]

No, it was just done recently and yes at an accredited facility, so I know it means it is right. Are there ever patients diagnosed with CF when their score is so low?

 

[Confused]

No, it was just done recently and yes at an accredited facility, so I know it means it is right. Are there ever patients diagnosed with CF when their score is so low?

 

[okok]

If the score is really that low (not a false negative) then it is unlikely your daughter has CF. I have not heard of any CF cases where the individual's sweat chloride was physiologically that low (meaning the sweat test results acurately represented the person's sweat chloride level and was not altered due to malnutrition or other factors) but that doesn't mean it can't happen. However, it is possible for some kids (usually breastfed or soy formula fed) with CF to have a false negative if they are protien malnourished (my daughter had a false negative test as an infant). This causes the blood vessals to be leaky and swelling can occur in the extremities which makes the sweat chloride value lower than normal. Your doctor can probably test your daughter for protien malnourishment if you are concerned about that. If you think that your daughter's symptoms could be explained by CF and feel strongly the sweat test was not accurate then i would push for genetic testing and repeat the sweat test.

Even if you are just not sure and want/need to be sure i would talk with your doctor about repeating the sweat test and seeking genetic testing preferablly from ambry or quest.

good luck and let us know what happens!

PS there was member, Edna, who had two kids both with pancreatic insuffiency and some lung issues. All of their sweat tests (repeated a couple times at least) were negative. I know she got the ambry amplified genetic testing but don't know if it ended up showing any mutations or not. i think the results should be in for her by now but maybe not yet. Anyway Edna if you around, your insight might help this poster! Plus i'd love to hear how the kiddos are doing and if they are any closer to knowing what is going on with their health.

 

[okok]

If the score is really that low (not a false negative) then it is unlikely your daughter has CF. I have not heard of any CF cases where the individual's sweat chloride was physiologically that low (meaning the sweat test results acurately represented the person's sweat chloride level and was not altered due to malnutrition or other factors) but that doesn't mean it can't happen. However, it is possible for some kids (usually breastfed or soy formula fed) with CF to have a false negative if they are protien malnourished (my daughter had a false negative test as an infant). This causes the blood vessals to be leaky and swelling can occur in the extremities which makes the sweat chloride value lower than normal. Your doctor can probably test your daughter for protien malnourishment if you are concerned about that. If you think that your daughter's symptoms could be explained by CF and feel strongly the sweat test was not accurate then i would push for genetic testing and repeat the sweat test.

Even if you are just not sure and want/need to be sure i would talk with your doctor about repeating the sweat test and seeking genetic testing preferablly from ambry or quest.

good luck and let us know what happens!

PS there was member, Edna, who had two kids both with pancreatic insuffiency and some lung issues. All of their sweat tests (repeated a couple times at least) were negative. I know she got the ambry amplified genetic testing but don't know if it ended up showing any mutations or not. i think the results should be in for her by now but maybe not yet. Anyway Edna if you around, your insight might help this poster! Plus i'd love to hear how the kiddos are doing and if they are any closer to knowing what is going on with their health.

 

[okok]

If the score is really that low (not a false negative) then it is unlikely your daughter has CF. I have not heard of any CF cases where the individual's sweat chloride was physiologically that low (meaning the sweat test results acurately represented the person's sweat chloride level and was not altered due to malnutrition or other factors) but that doesn't mean it can't happen. However, it is possible for some kids (usually breastfed or soy formula fed) with CF to have a false negative if they are protien malnourished (my daughter had a false negative test as an infant). This causes the blood vessals to be leaky and swelling can occur in the extremities which makes the sweat chloride value lower than normal. Your doctor can probably test your daughter for protien malnourishment if you are concerned about that. If you think that your daughter's symptoms could be explained by CF and feel strongly the sweat test was not accurate then i would push for genetic testing and repeat the sweat test.

Even if you are just not sure and want/need to be sure i would talk with your doctor about repeating the sweat test and seeking genetic testing preferablly from ambry or quest.

good luck and let us know what happens!

PS there was member, Edna, who had two kids both with pancreatic insuffiency and some lung issues. All of their sweat tests (repeated a couple times at least) were negative. I know she got the ambry amplified genetic testing but don't know if it ended up showing any mutations or not. i think the results should be in for her by now but maybe not yet. Anyway Edna if you around, your insight might help this poster! Plus i'd love to hear how the kiddos are doing and if they are any closer to knowing what is going on with their health.

 

[okok]

If the score is really that low (not a false negative) then it is unlikely your daughter has CF. I have not heard of any CF cases where the individual's sweat chloride was physiologically that low (meaning the sweat test results acurately represented the person's sweat chloride level and was not altered due to malnutrition or other factors) but that doesn't mean it can't happen. However, it is possible for some kids (usually breastfed or soy formula fed) with CF to have a false negative if they are protien malnourished (my daughter had a false negative test as an infant). This causes the blood vessals to be leaky and swelling can occur in the extremities which makes the sweat chloride value lower than normal. Your doctor can probably test your daughter for protien malnourishment if you are concerned about that. If you think that your daughter's symptoms could be explained by CF and feel strongly the sweat test was not accurate then i would push for genetic testing and repeat the sweat test.

Even if you are just not sure and want/need to be sure i would talk with your doctor about repeating the sweat test and seeking genetic testing preferablly from ambry or quest.

good luck and let us know what happens!

PS there was member, Edna, who had two kids both with pancreatic insuffiency and some lung issues. All of their sweat tests (repeated a couple times at least) were negative. I know she got the ambry amplified genetic testing but don't know if it ended up showing any mutations or not. i think the results should be in for her by now but maybe not yet. Anyway Edna if you around, your insight might help this poster! Plus i'd love to hear how the kiddos are doing and if they are any closer to knowing what is going on with their health.

 

[okok]

If the score is really that low (not a false negative) then it is unlikely your daughter has CF. I have not heard of any CF cases where the individual's sweat chloride was physiologically that low (meaning the sweat test results acurately represented the person's sweat chloride level and was not altered due to malnutrition or other factors) but that doesn't mean it can't happen. However, it is possible for some kids (usually breastfed or soy formula fed) with CF to have a false negative if they are protien malnourished (my daughter had a false negative test as an infant). This causes the blood vessals to be leaky and swelling can occur in the extremities which makes the sweat chloride value lower than normal. Your doctor can probably test your daughter for protien malnourishment if you are concerned about that. If you think that your daughter's symptoms could be explained by CF and feel strongly the sweat test was not accurate then i would push for genetic testing and repeat the sweat test.

Even if you are just not sure and want/need to be sure i would talk with your doctor about repeating the sweat test and seeking genetic testing preferablly from ambry or quest.

good luck and let us know what happens!

PS there was member, Edna, who had two kids both with pancreatic insuffiency and some lung issues. All of their sweat tests (repeated a couple times at least) were negative. I know she got the ambry amplified genetic testing but don't know if it ended up showing any mutations or not. i think the results should be in for her by now but maybe not yet. Anyway Edna if you around, your insight might help this poster! Plus i'd love to hear how the kiddos are doing and if they are any closer to knowing what is going on with their health.

 

[okok]

If the score is really that low (not a false negative) then it is unlikely your daughter has CF. I have not heard of any CF cases where the individual's sweat chloride was physiologically that low (meaning the sweat test results acurately represented the person's sweat chloride level and was not altered due to malnutrition or other factors) but that doesn't mean it can't happen. However, it is possible for some kids (usually breastfed or soy formula fed) with CF to have a false negative if they are protien malnourished (my daughter had a false negative test as an infant). This causes the blood vessals to be leaky and swelling can occur in the extremities which makes the sweat chloride value lower than normal. Your doctor can probably test your daughter for protien malnourishment if you are concerned about that. If you think that your daughter's symptoms could be explained by CF and feel strongly the sweat test was not accurate then i would push for genetic testing and repeat the sweat test.

Even if you are just not sure and want/need to be sure i would talk with your doctor about repeating the sweat test and seeking genetic testing preferablly from ambry or quest.

good luck and let us know what happens!

PS there was member, Edna, who had two kids both with pancreatic insuffiency and some lung issues. All of their sweat tests (repeated a couple times at least) were negative. I know she got the ambry amplified genetic testing but don't know if it ended up showing any mutations or not. i think the results should be in for her by now but maybe not yet. Anyway Edna if you around, your insight might help this poster! Plus i'd love to hear how the kiddos are doing and if they are any closer to knowing what is going on with their health.

 

[janddburke]

my daughter had 3 sweat tests from 5 months to a year old. not one was positive. Confirmed diagnosis thru bloodwork.
her scores were higher, but still not definitive diagnosis range.
not sure why they still do sweat tests?

 

[janddburke]

my daughter had 3 sweat tests from 5 months to a year old. not one was positive. Confirmed diagnosis thru bloodwork.
her scores were higher, but still not definitive diagnosis range.
not sure why they still do sweat tests?

 

[janddburke]

my daughter had 3 sweat tests from 5 months to a year old. not one was positive. Confirmed diagnosis thru bloodwork.
her scores were higher, but still not definitive diagnosis range.
not sure why they still do sweat tests?

 

[janddburke]

my daughter had 3 sweat tests from 5 months to a year old. not one was positive. Confirmed diagnosis thru bloodwork.
her scores were higher, but still not definitive diagnosis range.
not sure why they still do sweat tests?