confused over testing

[momofcash]

I was told yesterday that my 1 year old baby boy tested positive for CF via a blood test. He has had digestive issues since his very first day. Now we are supposed to go to Children's hospital to have a sweat test on Monday. Why do we need a sweat test if they have already done the genetic test? We are devastated and confused.

 

[momofcash]

I was told yesterday that my 1 year old baby boy tested positive for CF via a blood test. He has had digestive issues since his very first day. Now we are supposed to go to Children's hospital to have a sweat test on Monday. Why do we need a sweat test if they have already done the genetic test? We are devastated and confused.

 

[momofcash]

I was told yesterday that my 1 year old baby boy tested positive for CF via a blood test. He has had digestive issues since his very first day. Now we are supposed to go to Children's hospital to have a sweat test on Monday. Why do we need a sweat test if they have already done the genetic test? We are devastated and confused.

 

[ktsmom]

First, I understand your devastation and there will be tough times ahead as you try to figure all of this out. I am very sorry for the diagnosis BUT your baby will feel SO MUCH BETTER now that he will be treated for his symptoms. It will be a blessing, I promise.

I can't answer why they would want a sweat test. There was a similar question posted here the other day. Neither the sweat test results nor the specific CF mutations provide total assurance of prognosis, which is what most of us wanted to know when we were in your position.

I encourage you to find a CF care center where you feel comfortable with their level of knowledge and treatment. Ask questions here whenever you feel the need and I wish you well.

 

[ktsmom]

First, I understand your devastation and there will be tough times ahead as you try to figure all of this out. I am very sorry for the diagnosis BUT your baby will feel SO MUCH BETTER now that he will be treated for his symptoms. It will be a blessing, I promise.

I can't answer why they would want a sweat test. There was a similar question posted here the other day. Neither the sweat test results nor the specific CF mutations provide total assurance of prognosis, which is what most of us wanted to know when we were in your position.

I encourage you to find a CF care center where you feel comfortable with their level of knowledge and treatment. Ask questions here whenever you feel the need and I wish you well.

 

[ktsmom]

First, I understand your devastation and there will be tough times ahead as you try to figure all of this out. I am very sorry for the diagnosis BUT your baby will feel SO MUCH BETTER now that he will be treated for his symptoms. It will be a blessing, I promise.

I can't answer why they would want a sweat test. There was a similar question posted here the other day. Neither the sweat test results nor the specific CF mutations provide total assurance of prognosis, which is what most of us wanted to know when we were in your position.

I encourage you to find a CF care center where you feel comfortable with their level of knowledge and treatment. Ask questions here whenever you feel the need and I wish you well.

 

[Ratatosk]

I wonder if it's because they used to consider the sweat test to be the gold standard when it came to CF testing. They did the same thing to us when DS was diagnosed. He'd actually had two genetic tests -- local hospital and then at the Children's Hospital where he had surgery to correct his bowel obstruction surgery. We'd gotten the test results back showing positive for CF and a few weeks later they did a sweat test, which came back normal.

They also did a poop test to see how much fat was in his stool. At that point, our CF doctor had taken over his care and pretty much shook his head. Said something to the affect that "we already KNOW he has CF and we already KNOW he has enzymes because malabsorbs". I think the CF dietician was behind the testing for some odd reason. Maybe because it was just their standard protocol. Who knows.

I'd started accepting the CF diagnosis and then when the Sweat test results came back, I kept thinking in the back of my mind that maybe he DIDN'T have it. Took me several months to believe he had it. We still continued with his meds, cpt, preventative care, hoping that maybe it was all wrong...

 

[Ratatosk]

I wonder if it's because they used to consider the sweat test to be the gold standard when it came to CF testing. They did the same thing to us when DS was diagnosed. He'd actually had two genetic tests -- local hospital and then at the Children's Hospital where he had surgery to correct his bowel obstruction surgery. We'd gotten the test results back showing positive for CF and a few weeks later they did a sweat test, which came back normal.

They also did a poop test to see how much fat was in his stool. At that point, our CF doctor had taken over his care and pretty much shook his head. Said something to the affect that "we already KNOW he has CF and we already KNOW he has enzymes because malabsorbs". I think the CF dietician was behind the testing for some odd reason. Maybe because it was just their standard protocol. Who knows.

I'd started accepting the CF diagnosis and then when the Sweat test results came back, I kept thinking in the back of my mind that maybe he DIDN'T have it. Took me several months to believe he had it. We still continued with his meds, cpt, preventative care, hoping that maybe it was all wrong...

 

[Ratatosk]

I wonder if it's because they used to consider the sweat test to be the gold standard when it came to CF testing. They did the same thing to us when DS was diagnosed. He'd actually had two genetic tests -- local hospital and then at the Children's Hospital where he had surgery to correct his bowel obstruction surgery. We'd gotten the test results back showing positive for CF and a few weeks later they did a sweat test, which came back normal.

They also did a poop test to see how much fat was in his stool. At that point, our CF doctor had taken over his care and pretty much shook his head. Said something to the affect that "we already KNOW he has CF and we already KNOW he has enzymes because malabsorbs". I think the CF dietician was behind the testing for some odd reason. Maybe because it was just their standard protocol. Who knows.

I'd started accepting the CF diagnosis and then when the Sweat test results came back, I kept thinking in the back of my mind that maybe he DIDN'T have it. Took me several months to believe he had it. We still continued with his meds, cpt, preventative care, hoping that maybe it was all wrong...

 

[okok]

Hi mom of cash and Ratatosk,

First mom of cash, i am so sorry to hear about your child's diagnosis. You must feel devastated!

I imagine it must be so confusing to have a sweat test ordered if your child has already been shown to have CF through genetic testing. Mom of cash, I think you should specifically ask your docs about why they need the sweat test results if genetic testing has already shown your child has CF. When doctors do things like this i think they should be very clear about their reasons simply out of respect for the patient/parents. It can't help to wonder, as Ratatosk did, if the testing might mean your child does not have CF.

Ratatosk, did the doctors ever explain to you what the results of the sweat test might mean in conjunction with the results of the genetic testing?? Did they ever explain to you that the sweat test results could be falsly negative? (ie that if your son had a sweat test now it might be a much higher number)

URG! sometimes doctors can be so infuriating.

 

[okok]

Hi mom of cash and Ratatosk,

First mom of cash, i am so sorry to hear about your child's diagnosis. You must feel devastated!

I imagine it must be so confusing to have a sweat test ordered if your child has already been shown to have CF through genetic testing. Mom of cash, I think you should specifically ask your docs about why they need the sweat test results if genetic testing has already shown your child has CF. When doctors do things like this i think they should be very clear about their reasons simply out of respect for the patient/parents. It can't help to wonder, as Ratatosk did, if the testing might mean your child does not have CF.

Ratatosk, did the doctors ever explain to you what the results of the sweat test might mean in conjunction with the results of the genetic testing?? Did they ever explain to you that the sweat test results could be falsly negative? (ie that if your son had a sweat test now it might be a much higher number)

URG! sometimes doctors can be so infuriating.

 

[okok]

Hi mom of cash and Ratatosk,

First mom of cash, i am so sorry to hear about your child's diagnosis. You must feel devastated!

I imagine it must be so confusing to have a sweat test ordered if your child has already been shown to have CF through genetic testing. Mom of cash, I think you should specifically ask your docs about why they need the sweat test results if genetic testing has already shown your child has CF. When doctors do things like this i think they should be very clear about their reasons simply out of respect for the patient/parents. It can't help to wonder, as Ratatosk did, if the testing might mean your child does not have CF.

Ratatosk, did the doctors ever explain to you what the results of the sweat test might mean in conjunction with the results of the genetic testing?? Did they ever explain to you that the sweat test results could be falsly negative? (ie that if your son had a sweat test now it might be a much higher number)

URG! sometimes doctors can be so infuriating.

 

[Ratatosk]

The test result was 32. The dietician, who'd ordered the test result said that they must not have gotten large enough sample. And I think even one of the neonatologists mentioned at the time that he knew of older patients, who switched clinics were given sweat tests and got normal results. Thought it was an odd comment at the time and remember thinking "did that mean those people didn't end up having cf"

Was kind of a chaotic time -- we spent 4 weeks in the NICU and the CF doctor & neonatologist couldn't agree with the pulmologist and the cf dietician. And I had issues with the dietician. Just wasn't very professional -- we didn't agree with her so she badmouthed us to the nurses, WHILE we were sitting there. Hello, we can HEAR you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

The test result was 32. The dietician, who'd ordered the test result said that they must not have gotten large enough sample. And I think even one of the neonatologists mentioned at the time that he knew of older patients, who switched clinics were given sweat tests and got normal results. Thought it was an odd comment at the time and remember thinking "did that mean those people didn't end up having cf"

Was kind of a chaotic time -- we spent 4 weeks in the NICU and the CF doctor & neonatologist couldn't agree with the pulmologist and the cf dietician. And I had issues with the dietician. Just wasn't very professional -- we didn't agree with her so she badmouthed us to the nurses, WHILE we were sitting there. Hello, we can HEAR you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

The test result was 32. The dietician, who'd ordered the test result said that they must not have gotten large enough sample. And I think even one of the neonatologists mentioned at the time that he knew of older patients, who switched clinics were given sweat tests and got normal results. Thought it was an odd comment at the time and remember thinking "did that mean those people didn't end up having cf"

Was kind of a chaotic time -- we spent 4 weeks in the NICU and the CF doctor & neonatologist couldn't agree with the pulmologist and the cf dietician. And I had issues with the dietician. Just wasn't very professional -- we didn't agree with her so she badmouthed us to the nurses, WHILE we were sitting there. Hello, we can HEAR you. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[momofcash]

My pediatrician couldn't really tell me too much about what would happen from here. She just set up an appointment for me with a pulmonologist at the Children's Hospital in Milwaukee that does have a CF care center. She said they would do a sweat test and explain everything to me more. She also said something about determining the type? Does this matter or mean anything to anyone?I fully understand that our pediatrician has limited information because it is not her specialty.

 

[momofcash]

My pediatrician couldn't really tell me too much about what would happen from here. She just set up an appointment for me with a pulmonologist at the Children's Hospital in Milwaukee that does have a CF care center. She said they would do a sweat test and explain everything to me more. She also said something about determining the type? Does this matter or mean anything to anyone?I fully understand that our pediatrician has limited information because it is not her specialty.

 

[momofcash]

My pediatrician couldn't really tell me too much about what would happen from here. She just set up an appointment for me with a pulmonologist at the Children's Hospital in Milwaukee that does have a CF care center. She said they would do a sweat test and explain everything to me more. She also said something about determining the type? Does this matter or mean anything to anyone?I fully understand that our pediatrician has limited information because it is not her specialty.

 

[okok]

Well if you your son has a mutation that is associated with atypical CF they may be doing a sweat test to see if his sweat chloride falls within the parameters of atypical CF. However because your son has digestive issues and is only 1 year old it sounds as if your son's case is more in line with typical CF rather than atypical CF.

best of luck!

 

[okok]

Well if you your son has a mutation that is associated with atypical CF they may be doing a sweat test to see if his sweat chloride falls within the parameters of atypical CF. However because your son has digestive issues and is only 1 year old it sounds as if your son's case is more in line with typical CF rather than atypical CF.

best of luck!