Sweat Test Results

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Asexyblond23

New member
No he isnt having any sympotoms. He did have to go on soy because the other formulas made him very gassy and constipated. Every now and then he has been a little constipated since I started him on rice cereal this past week. No he has not had the ambry or any genetic testing done. Just the IRT done as the newborn screening showing negetive and then the sweat test. They did do a sample from the left and right arm so they had two. I know he is a carrier from me I just wanted to make sure if he did or did not have it. I notice that sometimes when he cries and it dries it will have salt crystals, which worried me but with a sweat test so low there must not be too much chloride in his system. Im not sure but I thought 12 was really low. He turned 4 months on the 28th and weighs 15 lbs so the doctors are happy because he is gaining good they say.
 
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mom2caseyafrica

New member
What have his doctors said? Have they diagnosed him with anything? I dont know what tests they did for my daughter. I think just the basic newborn screening test and both mutations came up. I know that there are more extensive tests like the Ambry but if his tests came back as a carrier and your husbands tests came back negative than I would just keep an eye on him and continue to discuss any concerns you have with his doctors.
 
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mom2caseyafrica

New member
What have his doctors said? Have they diagnosed him with anything? I dont know what tests they did for my daughter. I think just the basic newborn screening test and both mutations came up. I know that there are more extensive tests like the Ambry but if his tests came back as a carrier and your husbands tests came back negative than I would just keep an eye on him and continue to discuss any concerns you have with his doctors.
 
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mom2caseyafrica

New member
What have his doctors said? Have they diagnosed him with anything? I dont know what tests they did for my daughter. I think just the basic newborn screening test and both mutations came up. I know that there are more extensive tests like the Ambry but if his tests came back as a carrier and your husbands tests came back negative than I would just keep an eye on him and continue to discuss any concerns you have with his doctors.
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Ratatosk

Administrator
Staff member
DS' was 32. Yet he is double delta f508.
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<br />I believe Lou Lou's son's was very low -- 8?
 
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NancyLKF

New member
Maggie's sweat test was in the 90s. It sounds like your son doesn't have CF but I get why you're worried. If you have a hard time getting peace of mind and it wears on you - I would save up the $$ for the full panel. Worrying is stressful especially about your child.
 
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NancyLKF

New member
Maggie's sweat test was in the 90s. It sounds like your son doesn't have CF but I get why you're worried. If you have a hard time getting peace of mind and it wears on you - I would save up the $$ for the full panel. Worrying is stressful especially about your child.
 
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NancyLKF

New member
Maggie's sweat test was in the 90s. It sounds like your son doesn't have CF but I get why you're worried. If you have a hard time getting peace of mind and it wears on you - I would save up the $$ for the full panel. Worrying is stressful especially about your child.
 
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tacos99

New member
Hi Alisha, I also would have a hard time believing a sweat test is that reliable. My daughter's was 108 and she does have CF, but my son, Christopher's was 69. By this number he should have CF but the full Ambry panel only showed one mutation.
Because he does have numerous issues (lung and sinus) I am going to have a NPD on him to reverify his status. I think he is a highly symptomatic carrier who needs some treatment options so he can feel better and gain a little weight.
My son Todd's sweat test came back in the high 40's (Borderline), and he was found to have no mutations. Yea!!
Sorry to rant on but this happened over a year ago at Christmas and we went through the holidays thinking 3 of our 5 children had CF. So we're still a little raw from that.
I think the NPD is a much better, more reliable test than the sweat and is most of the time covered by insurance, but I wouldn't think an infant would be able to do the test. I think I try to save for the full panel also. Peace of mind is so very important. Good luck, congratulations on your beautiful baby, and take care.
 
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tacos99

New member
Hi Alisha, I also would have a hard time believing a sweat test is that reliable. My daughter's was 108 and she does have CF, but my son, Christopher's was 69. By this number he should have CF but the full Ambry panel only showed one mutation.
Because he does have numerous issues (lung and sinus) I am going to have a NPD on him to reverify his status. I think he is a highly symptomatic carrier who needs some treatment options so he can feel better and gain a little weight.
My son Todd's sweat test came back in the high 40's (Borderline), and he was found to have no mutations. Yea!!
Sorry to rant on but this happened over a year ago at Christmas and we went through the holidays thinking 3 of our 5 children had CF. So we're still a little raw from that.
I think the NPD is a much better, more reliable test than the sweat and is most of the time covered by insurance, but I wouldn't think an infant would be able to do the test. I think I try to save for the full panel also. Peace of mind is so very important. Good luck, congratulations on your beautiful baby, and take care.
 
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tacos99

New member
Hi Alisha, I also would have a hard time believing a sweat test is that reliable. My daughter's was 108 and she does have CF, but my son, Christopher's was 69. By this number he should have CF but the full Ambry panel only showed one mutation.
<br />Because he does have numerous issues (lung and sinus) I am going to have a NPD on him to reverify his status. I think he is a highly symptomatic carrier who needs some treatment options so he can feel better and gain a little weight.
<br />My son Todd's sweat test came back in the high 40's (Borderline), and he was found to have no mutations. Yea!!
<br />Sorry to rant on but this happened over a year ago at Christmas and we went through the holidays thinking 3 of our 5 children had CF. So we're still a little raw from that.
<br />I think the NPD is a much better, more reliable test than the sweat and is most of the time covered by insurance, but I wouldn't think an infant would be able to do the test. I think I try to save for the full panel also. Peace of mind is so very important. Good luck, congratulations on your beautiful baby, and take care.
 
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LouLou

New member
<b>Isaac had a sweat test result of 12</b> at 8 weeks old and then an <b>11 when he was 2 years old</b>. Sometimes sweat tests aren't all that accurate when they are under a year I've heard. <b>My sweat test results are 89</b>.

A score below 39 is considered negative. 40-60 borderline and 60 and above positive.

Isaac has two mutations but the more mild of the mutations is not completely ruled out as a symptomless mutation. Some present mild to moderate with it.

Alisha and I have talked by PM and other posts so I won't carry on here again as she knows our story. As do most of you I would imagine.

At 3 years old we are glad we know about his mutations even though he may not develop symptoms for a very long time. He is predisposed to pancreatitis by nature of being PS. Also his more mild mutation from dad often causes this issue. We're glad we know to look for the signs. Also, we have piece of mind knowing we are doing Vest preventatively and agressively when he had a cold/cough..developing the habit and perhaps staving off disease progression. And as a bonus when ever he gets a cough we know just what to treat it with abx wise because CF kids get cultured where non-cf kids do not.
 
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LouLou

New member
<b>Isaac had a sweat test result of 12</b> at 8 weeks old and then an <b>11 when he was 2 years old</b>. Sometimes sweat tests aren't all that accurate when they are under a year I've heard. <b>My sweat test results are 89</b>.

A score below 39 is considered negative. 40-60 borderline and 60 and above positive.

Isaac has two mutations but the more mild of the mutations is not completely ruled out as a symptomless mutation. Some present mild to moderate with it.

Alisha and I have talked by PM and other posts so I won't carry on here again as she knows our story. As do most of you I would imagine.

At 3 years old we are glad we know about his mutations even though he may not develop symptoms for a very long time. He is predisposed to pancreatitis by nature of being PS. Also his more mild mutation from dad often causes this issue. We're glad we know to look for the signs. Also, we have piece of mind knowing we are doing Vest preventatively and agressively when he had a cold/cough..developing the habit and perhaps staving off disease progression. And as a bonus when ever he gets a cough we know just what to treat it with abx wise because CF kids get cultured where non-cf kids do not.
 
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LouLou

New member
<b>Isaac had a sweat test result of 12</b> at 8 weeks old and then an <b>11 when he was 2 years old</b>. Sometimes sweat tests aren't all that accurate when they are under a year I've heard. <b>My sweat test results are 89</b>.
<br />
<br />A score below 39 is considered negative. 40-60 borderline and 60 and above positive.
<br />
<br />Isaac has two mutations but the more mild of the mutations is not completely ruled out as a symptomless mutation. Some present mild to moderate with it.
<br />
<br />Alisha and I have talked by PM and other posts so I won't carry on here again as she knows our story. As do most of you I would imagine.
<br />
<br />At 3 years old we are glad we know about his mutations even though he may not develop symptoms for a very long time. He is predisposed to pancreatitis by nature of being PS. Also his more mild mutation from dad often causes this issue. We're glad we know to look for the signs. Also, we have piece of mind knowing we are doing Vest preventatively and agressively when he had a cold/cough..developing the habit and perhaps staving off disease progression. And as a bonus when ever he gets a cough we know just what to treat it with abx wise because CF kids get cultured where non-cf kids do not.
 
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