Can't Believe This!

[geminifire39]

My daughter had a sweat test a few weeks ago. I called the Doctor to get the results she told me that it was 31 or 38... in the normal range. My kids go to a group of Doctors, but have never really dealt with the other Doctors. Well, when she started with this whole episode she saw a different Doctor from her own Pediatrician. She has had several tests done and I had stuck with the same Doctor, didn't want to change Doctor's since the Doctor already knew what was going on. Well, to make a long story short, she went to her actual pediatrician today. Half of her test results wasn't in her file, thank god he didn't take my word on what her results were!! Her sweat test was 51!!!! I know that it's still borderline, but further testing still needs to be done. I can honestly say that she won't be back to that Doctor again!! She's going to get another sweat test from a credited hospital, then we'll know where to go from there. I thought I was done having to worry about this, but once again I'm back up to the plate.

 

[geminifire39]

My daughter had a sweat test a few weeks ago. I called the Doctor to get the results she told me that it was 31 or 38... in the normal range. My kids go to a group of Doctors, but have never really dealt with the other Doctors. Well, when she started with this whole episode she saw a different Doctor from her own Pediatrician. She has had several tests done and I had stuck with the same Doctor, didn't want to change Doctor's since the Doctor already knew what was going on. Well, to make a long story short, she went to her actual pediatrician today. Half of her test results wasn't in her file, thank god he didn't take my word on what her results were!! Her sweat test was 51!!!! I know that it's still borderline, but further testing still needs to be done. I can honestly say that she won't be back to that Doctor again!! She's going to get another sweat test from a credited hospital, then we'll know where to go from there. I thought I was done having to worry about this, but once again I'm back up to the plate.

 

[geminifire39]

My daughter had a sweat test a few weeks ago. I called the Doctor to get the results she told me that it was 31 or 38... in the normal range. My kids go to a group of Doctors, but have never really dealt with the other Doctors. Well, when she started with this whole episode she saw a different Doctor from her own Pediatrician. She has had several tests done and I had stuck with the same Doctor, didn't want to change Doctor's since the Doctor already knew what was going on. Well, to make a long story short, she went to her actual pediatrician today. Half of her test results wasn't in her file, thank god he didn't take my word on what her results were!! Her sweat test was 51!!!! I know that it's still borderline, but further testing still needs to be done. I can honestly say that she won't be back to that Doctor again!! She's going to get another sweat test from a credited hospital, then we'll know where to go from there. I thought I was done having to worry about this, but once again I'm back up to the plate.

 

[Mommafirst]

I would be furious too!!! I'm sorry you got some confusing and not-so-good news. Not to add to your anger, but if your daughter is under a year, a 31 would also be considered borderline. New regulations are calling 30-60 borderline for those under a year. I hope you get some good answers and quickly -- the waiting is miserable.

 

[Mommafirst]

I would be furious too!!! I'm sorry you got some confusing and not-so-good news. Not to add to your anger, but if your daughter is under a year, a 31 would also be considered borderline. New regulations are calling 30-60 borderline for those under a year. I hope you get some good answers and quickly -- the waiting is miserable.

 

[Mommafirst]

I would be furious too!!! I'm sorry you got some confusing and not-so-good news. Not to add to your anger, but if your daughter is under a year, a 31 would also be considered borderline. New regulations are calling 30-60 borderline for those under a year. I hope you get some good answers and quickly -- the waiting is miserable.

 

[NoExcuses]

sweat tests are so archaic. I can't believe they are still done....

if you want to know if your kid has CF, get a full panel Ambry genetic test.

 

[NoExcuses]

sweat tests are so archaic. I can't believe they are still done....

if you want to know if your kid has CF, get a full panel Ambry genetic test.

 

[NoExcuses]

sweat tests are so archaic. I can't believe they are still done....

if you want to know if your kid has CF, get a full panel Ambry genetic test.

 

[Foody]

I tend to agree with Amy. Sweat tests are finicky and in my opinion should be done in conjunction with a Ambrey or Guthrey panel DNA test. It looks for over 1000 mutations (correct me here guys if wrong) which is much more conclusive. There are those who have CF (diagnosed through genetic testing) who never tested positive on sweat tests and vice a versa. So it isn't cut and dry and it can be very frustrating. It took them 4 times to finally get enought sweat to test our son as an infant. 2 weeks later we got confirmed via DNA test (a simple pin prick on the heel and off it went). It was a relief to know but also the saddest day of our lives. Hang in there. We are here for you and understand.

 

[Foody]

I tend to agree with Amy. Sweat tests are finicky and in my opinion should be done in conjunction with a Ambrey or Guthrey panel DNA test. It looks for over 1000 mutations (correct me here guys if wrong) which is much more conclusive. There are those who have CF (diagnosed through genetic testing) who never tested positive on sweat tests and vice a versa. So it isn't cut and dry and it can be very frustrating. It took them 4 times to finally get enought sweat to test our son as an infant. 2 weeks later we got confirmed via DNA test (a simple pin prick on the heel and off it went). It was a relief to know but also the saddest day of our lives. Hang in there. We are here for you and understand.

 

[Foody]

I tend to agree with Amy. Sweat tests are finicky and in my opinion should be done in conjunction with a Ambrey or Guthrey panel DNA test. It looks for over 1000 mutations (correct me here guys if wrong) which is much more conclusive. There are those who have CF (diagnosed through genetic testing) who never tested positive on sweat tests and vice a versa. So it isn't cut and dry and it can be very frustrating. It took them 4 times to finally get enought sweat to test our son as an infant. 2 weeks later we got confirmed via DNA test (a simple pin prick on the heel and off it went). It was a relief to know but also the saddest day of our lives. Hang in there. We are here for you and understand.

 

[Ratatosk]

I've posted this before, Max's was a normal 32. Genetic blood testing showed otherwise.

What I find strange is the way our state handles newborn screening. They do the heel stick and if the initial test shows CF they do follow up testing, which I always thought was more in depth genetic testing, 'cuz sometimes carriers initially show up as having CF with the first test. Nope, they follow it up with a sweat test. Isn't that WEIRD!

 

[Ratatosk]

I've posted this before, Max's was a normal 32. Genetic blood testing showed otherwise.

What I find strange is the way our state handles newborn screening. They do the heel stick and if the initial test shows CF they do follow up testing, which I always thought was more in depth genetic testing, 'cuz sometimes carriers initially show up as having CF with the first test. Nope, they follow it up with a sweat test. Isn't that WEIRD!

 

[Ratatosk]

I've posted this before, Max's was a normal 32. Genetic blood testing showed otherwise.

What I find strange is the way our state handles newborn screening. They do the heel stick and if the initial test shows CF they do follow up testing, which I always thought was more in depth genetic testing, 'cuz sometimes carriers initially show up as having CF with the first test. Nope, they follow it up with a sweat test. Isn't that WEIRD!

 

[Nicole]

Danny was diganosed at 2 days old with a genetic test. Since then we have moved and his new clinic wanted me to take him in for a sweat test. I didn't see the point and refused. Just thought it was weird.

 

[Nicole]

Danny was diganosed at 2 days old with a genetic test. Since then we have moved and his new clinic wanted me to take him in for a sweat test. I didn't see the point and refused. Just thought it was weird.

 

[Nicole]

Danny was diganosed at 2 days old with a genetic test. Since then we have moved and his new clinic wanted me to take him in for a sweat test. I didn't see the point and refused. Just thought it was weird.

 

[geminifire39]

Thanks everyone! She goes for the sweat test on Tuesday the 13th. The good thing is that she'll see a Doctor down there and I'll have the results that day! How long does it take to get the full panel genetic test back? I've heard possibly 6 weeks, which seems like a long time to have to wait. I admit that finding out whatever it is will be a relief. It's hard to know what to do next when you don't know what you're up against. Thanks for the support, I'll keep you informed.

 

[geminifire39]

Thanks everyone! She goes for the sweat test on Tuesday the 13th. The good thing is that she'll see a Doctor down there and I'll have the results that day! How long does it take to get the full panel genetic test back? I've heard possibly 6 weeks, which seems like a long time to have to wait. I admit that finding out whatever it is will be a relief. It's hard to know what to do next when you don't know what you're up against. Thanks for the support, I'll keep you informed.