Sweat test 133

[mom4holly]

We finally got enough sweat for a productive sweat test. It was 133--my doc says we are going to do a redo on 12/13 and see what the results are because my insurance is still on the "we dont do genetic testing because there's cheaper ways" wagon. Although I feel like I just lost all control of the situation because there are so many things you can't control when it comes to health we will have to continue the treatments and the antibiotics for right now. Thankfully she has had no digestive issues so my doc says she should not need any enzymes. Atleast we are turning a corner of knowing what to do to help her and that makes me happy.

I am still confused about what makes a sweat test "positive" what is the low? what is the High? Can it come back a false positive? My dr said that has happened before. I am confused even though I think I have read alot of what is on the internet about it and have learned alot from this website. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[mom4holly]

We finally got enough sweat for a productive sweat test. It was 133--my doc says we are going to do a redo on 12/13 and see what the results are because my insurance is still on the "we dont do genetic testing because there's cheaper ways" wagon. Although I feel like I just lost all control of the situation because there are so many things you can't control when it comes to health we will have to continue the treatments and the antibiotics for right now. Thankfully she has had no digestive issues so my doc says she should not need any enzymes. Atleast we are turning a corner of knowing what to do to help her and that makes me happy.

I am still confused about what makes a sweat test "positive" what is the low? what is the High? Can it come back a false positive? My dr said that has happened before. I am confused even though I think I have read alot of what is on the internet about it and have learned alot from this website. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[mom4holly]

We finally got enough sweat for a productive sweat test. It was 133--my doc says we are going to do a redo on 12/13 and see what the results are because my insurance is still on the "we dont do genetic testing because there's cheaper ways" wagon. Although I feel like I just lost all control of the situation because there are so many things you can't control when it comes to health we will have to continue the treatments and the antibiotics for right now. Thankfully she has had no digestive issues so my doc says she should not need any enzymes. Atleast we are turning a corner of knowing what to do to help her and that makes me happy.

I am still confused about what makes a sweat test "positive" what is the low? what is the High? Can it come back a false positive? My dr said that has happened before. I am confused even though I think I have read alot of what is on the internet about it and have learned alot from this website. <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[NoExcuses]

i wouldn't take what your insurance is saying. have your doc do a prior auth. talk to the insurance and let them know of the consequences of undiagnosed/untreated CF. all of this waiting is obnoxious when there is a genetic test than can give you an answer!

i would call and harass the insurance daily if i were you.

 

[NoExcuses]

i wouldn't take what your insurance is saying. have your doc do a prior auth. talk to the insurance and let them know of the consequences of undiagnosed/untreated CF. all of this waiting is obnoxious when there is a genetic test than can give you an answer!

i would call and harass the insurance daily if i were you.

 

[NoExcuses]

i wouldn't take what your insurance is saying. have your doc do a prior auth. talk to the insurance and let them know of the consequences of undiagnosed/untreated CF. all of this waiting is obnoxious when there is a genetic test than can give you an answer!

i would call and harass the insurance daily if i were you.

 

[folione]

I've copied below the paragraph about sweat test results from the CFF.org web site. If you've not spent time looking at cff.org, you might want to give it a look.


"...In general, sweat chloride concentrations less than 40 mmol/L are normal (does not have CF); values between 40 to 60 mmol/L are borderline, and sweat chloride concentrations greater than 60 mmol/L are consistent with the diagnosis of CF.

For individuals who have CF, the sweat chloride test will be positive from birth. Once a test result is positive, it is always positive. Sweat test values do not change from positive to negative or negative to positive, as a person grows older. Sweat test values also do not vary when individuals have colds or other temporary illnesses..."

 

[folione]

I've copied below the paragraph about sweat test results from the CFF.org web site. If you've not spent time looking at cff.org, you might want to give it a look.


"...In general, sweat chloride concentrations less than 40 mmol/L are normal (does not have CF); values between 40 to 60 mmol/L are borderline, and sweat chloride concentrations greater than 60 mmol/L are consistent with the diagnosis of CF.

For individuals who have CF, the sweat chloride test will be positive from birth. Once a test result is positive, it is always positive. Sweat test values do not change from positive to negative or negative to positive, as a person grows older. Sweat test values also do not vary when individuals have colds or other temporary illnesses..."

 

[folione]

I've copied below the paragraph about sweat test results from the CFF.org web site. If you've not spent time looking at cff.org, you might want to give it a look.


"...In general, sweat chloride concentrations less than 40 mmol/L are normal (does not have CF); values between 40 to 60 mmol/L are borderline, and sweat chloride concentrations greater than 60 mmol/L are consistent with the diagnosis of CF.

For individuals who have CF, the sweat chloride test will be positive from birth. Once a test result is positive, it is always positive. Sweat test values do not change from positive to negative or negative to positive, as a person grows older. Sweat test values also do not vary when individuals have colds or other temporary illnesses..."

 

[ktsmom]

The normal range for sweat tests is 0 - 40 and above 60 is a "positive" result.

Why are they doing another one if the first one was 133? If there is ultimately a positive diagnosis then your insurance company will have to spring for a blood test anyway because you will want to know the specific mutations. What morons.

I hope you get a final answer. Waiting and not knowing is the absolute worst.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

The normal range for sweat tests is 0 - 40 and above 60 is a "positive" result.

Why are they doing another one if the first one was 133? If there is ultimately a positive diagnosis then your insurance company will have to spring for a blood test anyway because you will want to know the specific mutations. What morons.

I hope you get a final answer. Waiting and not knowing is the absolute worst.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[ktsmom]

The normal range for sweat tests is 0 - 40 and above 60 is a "positive" result.

Why are they doing another one if the first one was 133? If there is ultimately a positive diagnosis then your insurance company will have to spring for a blood test anyway because you will want to know the specific mutations. What morons.

I hope you get a final answer. Waiting and not knowing is the absolute worst.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)

 

[mom4holly]

I have called my insurance daily and speak to my HR daily and will continue to harrass them until it is taken care of. My doc has attempted a pa 3 times now for test. My insurance has a clause about genetic disorders that I couln't even believe, the sad thing is the reason I am stuck in this clause is because I chose the lowest health insurance plan because that is all that I could afford and we have already finished our open enrollment for 2007. When I am able to move up to the higher plan in 2008 they will cover it.

I am scared about this because I actually found this out from another employee here that has a child that fought like this for a year until she could move her insurance up to the next level. I make too much money to qualify for state assistance. I have been in touch with Ambry to find out what I can do.

My doc says that he has seen the sweat test fluctuate and she is already on all of the nebs and anti's so we are already treating it but I must do what my insurance requires because I can not afford to pay if they do not. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[mom4holly]

I have called my insurance daily and speak to my HR daily and will continue to harrass them until it is taken care of. My doc has attempted a pa 3 times now for test. My insurance has a clause about genetic disorders that I couln't even believe, the sad thing is the reason I am stuck in this clause is because I chose the lowest health insurance plan because that is all that I could afford and we have already finished our open enrollment for 2007. When I am able to move up to the higher plan in 2008 they will cover it.

I am scared about this because I actually found this out from another employee here that has a child that fought like this for a year until she could move her insurance up to the next level. I make too much money to qualify for state assistance. I have been in touch with Ambry to find out what I can do.

My doc says that he has seen the sweat test fluctuate and she is already on all of the nebs and anti's so we are already treating it but I must do what my insurance requires because I can not afford to pay if they do not. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[mom4holly]

I have called my insurance daily and speak to my HR daily and will continue to harrass them until it is taken care of. My doc has attempted a pa 3 times now for test. My insurance has a clause about genetic disorders that I couln't even believe, the sad thing is the reason I am stuck in this clause is because I chose the lowest health insurance plan because that is all that I could afford and we have already finished our open enrollment for 2007. When I am able to move up to the higher plan in 2008 they will cover it.

I am scared about this because I actually found this out from another employee here that has a child that fought like this for a year until she could move her insurance up to the next level. I make too much money to qualify for state assistance. I have been in touch with Ambry to find out what I can do.

My doc says that he has seen the sweat test fluctuate and she is already on all of the nebs and anti's so we are already treating it but I must do what my insurance requires because I can not afford to pay if they do not. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[bmombtoo]

I think I heard, read or esperienced soewhere a loop-hole in insurance that allows you to change your coverage in times of crisis or unplanned events. Ask your employer about that? I maybe thinking of COBRA but i think there is another escape clasue.

 

[bmombtoo]

I think I heard, read or esperienced soewhere a loop-hole in insurance that allows you to change your coverage in times of crisis or unplanned events. Ask your employer about that? I maybe thinking of COBRA but i think there is another escape clasue.

 

[bmombtoo]

I think I heard, read or esperienced soewhere a loop-hole in insurance that allows you to change your coverage in times of crisis or unplanned events. Ask your employer about that? I maybe thinking of COBRA but i think there is another escape clasue.

 

[Ratatosk]

Would it help to talk to legal aid or an attorney who could help you wade thru all the insurance information? Maybe write a letter on your behalf appealing insurance regs? Or write a letter indicating that a delay in medical treatment could cost more and cause more problems in the future?

Also, you indicated it's too late to change your insurance info for 2007.... Is that your office's deadline or the insurance company. I know we once got grief from our benefits person until DH asked for a copy of the section of our policy, which indicated DS wasn't covered or we couldn't change coverage. When he pushed, turned out there wasn't a limitation on our benefits. The rep, just didn't want to make any changes, and wanted all the info turned in by the beginning of December.

 

[Ratatosk]

Would it help to talk to legal aid or an attorney who could help you wade thru all the insurance information? Maybe write a letter on your behalf appealing insurance regs? Or write a letter indicating that a delay in medical treatment could cost more and cause more problems in the future?

Also, you indicated it's too late to change your insurance info for 2007.... Is that your office's deadline or the insurance company. I know we once got grief from our benefits person until DH asked for a copy of the section of our policy, which indicated DS wasn't covered or we couldn't change coverage. When he pushed, turned out there wasn't a limitation on our benefits. The rep, just didn't want to make any changes, and wanted all the info turned in by the beginning of December.