We found out that our baby has cf through newborn screening when he was 9 days old, but we just had his sweat test done last week (he is now 5 weeks old). The people at Children's told me that normal (no cf) is 39 or 40. Connor's numbers were 113 and 109. So thats very high. Does the higher the number mean the more severe he has it or does that have anything to do with this???
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sweat test
- Thread starter beckyB
- Start date
<b>No the higher sweat test numbers DO NOT represent a more severe case of CF</b>. It does represent how "defective" the chloride receptors are - some are damaged but still function others are completely shut off.
One of the more important pieces of information you can use with the sweat test number is the likelihood of dehydration on a hot day or during physical activity -- your boy will dehydrate much more quickly than other people, be sure to always give him more liquids, pedialite, Gatorade (something with electrolytes is better than straight water or at least to supplement water with) Also he will most likely form some white salty crystals around his forehead/hairline or chest/back (where ever he is sweating most)
There is also some information out there about drug/gene therapy working on a person with CF, depending on what is happening with the chloride receptors. But I would imagine you have your hands full right now with a new baby and the diagnosis alone, you can always learn about that later one ~ none of them have made it all the way through the testing trials yet and I think they are still several years off anyway.
CF affects people differently; unfortunately nobody has a crystal ball. They all share some symptoms in common but not everyone follows the same course during their lives.
Is your son even displaying any symptoms yet? or did you only find out because of the screening?
If you would like to, click on the link (to my blog here) in my signature line to read how *some* people are effected very mildly with CF. The first entry at the bottom tells you about my kids sweat tests/dna tests and symptoms.
Welcome to the sight, you have found a wonderful place for support and resources ~ ask us anything.
One of the more important pieces of information you can use with the sweat test number is the likelihood of dehydration on a hot day or during physical activity -- your boy will dehydrate much more quickly than other people, be sure to always give him more liquids, pedialite, Gatorade (something with electrolytes is better than straight water or at least to supplement water with) Also he will most likely form some white salty crystals around his forehead/hairline or chest/back (where ever he is sweating most)
There is also some information out there about drug/gene therapy working on a person with CF, depending on what is happening with the chloride receptors. But I would imagine you have your hands full right now with a new baby and the diagnosis alone, you can always learn about that later one ~ none of them have made it all the way through the testing trials yet and I think they are still several years off anyway.
CF affects people differently; unfortunately nobody has a crystal ball. They all share some symptoms in common but not everyone follows the same course during their lives.
Is your son even displaying any symptoms yet? or did you only find out because of the screening?
If you would like to, click on the link (to my blog here) in my signature line to read how *some* people are effected very mildly with CF. The first entry at the bottom tells you about my kids sweat tests/dna tests and symptoms.
Welcome to the sight, you have found a wonderful place for support and resources ~ ask us anything.
DS had a sweat test at the age of 2 1/2-3 weeks and an accreditted children's hospital. His results were 32 -- normal; however, he had genetic blood testing also. Could've been that he was such a teeny tiny baby at the time and they didn't get an adequate sample. L