Well, the last time you heard from me I was full of questions and worried about my 12 year old daughter who had staph in her throat and who the doctors wanted to do a sweat test to test for cf. Today was the big day. We were both nervous, but we won't get the results until next week. Maybe you can help me. I saw the numbers, they were 61, 50, 07 and 06 (I don't know if the last two numbers are part of this or not). I have no idea if these numbers are good or not. I kind of thought they were high - and the higher the worse it was. But hey, I am no expert. If any body know what the numbers are about, I'd apreciate knowing. Next week is a long time! My daughter was a nervous wreck this morning. They did accumulate a lot of sweat - enough for two tests. The person who did the test told us not to worry. So that is maybe a good sign. I'd appreciate hearing from you! KAME
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SWEAT TEST RESULTS
- Thread starter KAME
- Start date
When did you see the numbers? Was it after they did the lab work? Did you get the "results" to take to your primary doctor? All these questions because you don't know what these numbers actually are, so just take people replys with a grain of salt.
OK....If I remember correctly anything over 60 indicates CF, 40-60 in borderline, under 40 "normal". However, people have had normal sweat test results, and later have tested positive on genetic tests. So if her results come back "normal" and she continues to show signs of CF, she should get a genetic test.
OK....If I remember correctly anything over 60 indicates CF, 40-60 in borderline, under 40 "normal". However, people have had normal sweat test results, and later have tested positive on genetic tests. So if her results come back "normal" and she continues to show signs of CF, she should get a genetic test.
Thanks for a quick response. I was watching the machine. Each time she put in sweat (or so it seemed from where I was standing), then pressed a button and she would wait for it to stop. The first was 61 or 62 and then she did something else (I think it was change the sweat) and then press a button - the second number was 50. After it was all done she told me she had done two tests. Then I saw her do something else and 07 and then 06 came up. Whatever that means. But it was at 07 when we first started. KAME
Lately no. She was quite sick about two months ago and lost 8 pounds, was wheezing and high temperature for a week. She is just border "chubby" - so the first thing the lady told her was that normally the people she sees are a lot "smaller" and younger. Between the ages of 3 to 6 she had pneumonias and asthma on a regular basis. It has been a while since she was that sick. KAME
This is a tough situation. Because I would love to say...There is NO way your daughter has CF, don't worry. But that is not going to help your daughter at all. CF may be the reason behind the several pheumonias & the staph. But it sounds like she may be in the 10% of people that are pancreatic sufficient (no GI/weight problems) is she does indeed have CF~ that is good~ it means one less battle.
Have they mentioned seeing anything on a chest x-ray?
Has she been doing regular treatments for asthma, if so that may have kept some of the other CF lung issues at bay. At any rate being 12 years old and still being healthy enough for CF diagnosis to be difficult to make means even if your daughter has CF it seems to be progressing slowly.
Have they mentioned seeing anything on a chest x-ray?
Has she been doing regular treatments for asthma, if so that may have kept some of the other CF lung issues at bay. At any rate being 12 years old and still being healthy enough for CF diagnosis to be difficult to make means even if your daughter has CF it seems to be progressing slowly.
Kame,
Check out the first post on my blog -- my kids are very mild and were late diagnosis (13 years old and 18 years old) The link is at the bottom of this post -- I think you might find that information helpful - my email address is in one of the comments, feel free to email me there if you have any more questions.
Also, my guess would be you did not see "results" of the sweat test, but rather the "weight" of the sweat collected -- I think what they usually do for the test is "collection" of sweat on the gauze pad and I know they have to weigh the pad to make sure they have collected enough sweat -- it still has to be analyzed at the lab to find out how much chloride it contains.
Yes, just like the other poster said, even if it is negative and she continues to have symptoms you need to pursue genetic testing -- again see my blog entry -- my daughter is "normal" sweat test and my son is just barely "borderline" but we found two CF genes in them both - so the sweat test is not always 100%.
Check out the first post on my blog -- my kids are very mild and were late diagnosis (13 years old and 18 years old) The link is at the bottom of this post -- I think you might find that information helpful - my email address is in one of the comments, feel free to email me there if you have any more questions.
Also, my guess would be you did not see "results" of the sweat test, but rather the "weight" of the sweat collected -- I think what they usually do for the test is "collection" of sweat on the gauze pad and I know they have to weigh the pad to make sure they have collected enough sweat -- it still has to be analyzed at the lab to find out how much chloride it contains.
Yes, just like the other poster said, even if it is negative and she continues to have symptoms you need to pursue genetic testing -- again see my blog entry -- my daughter is "normal" sweat test and my son is just barely "borderline" but we found two CF genes in them both - so the sweat test is not always 100%.
It must be the weight I saw - and that is what I hope it is. I spent all night telling myself it just isn't possible - she seems too healthy. But, the lady did tell us that although she would know the results right away, she wasn't allowed to tell us - that the results need to go to the doctor, and he would call us. Mind you, she did tell me that she had enough for two tests - and then she said not to worry. So I guess I better not. It won't change anything.....KAME
when caleb was sweat tested they called me before i even got home (i was only 20 mins away)!! so i would think no news is good news.. if they had a possitive result i cant see them waiting a whole week.. Id call her doctor and nag them! haha.. im very persistant!
Melissa mom to dylan 7 no cf and caleb 4wcf
Melissa mom to dylan 7 no cf and caleb 4wcf
I will try to call the pediatrician at the hospital today. The person who did the test told us that because it was thursday yesterday, most likely we would get the results next week. She knew the results right away (so she told us) but isn't qualified to tell us. I tried calling my daughters family doctor, but the receptionist refused to pass the message on. Hopefully the test results will have gotten to the doctor yesterday afternoon or some time this morning. Honestly, I don't think my daughter has cf - only because she has been so healthy for the past 6 years. Now, if they had of done the test 6 years ago, it would have been another story. If she does have it, it is very mild. KAME
Kame,
I hope she doesn't have CF either, but like I said in my previous post -- check out my blog link and read my first entry -- The time frame and age of our daughters are very similar!! Since you mentioned she is 12 now, and 6 years ago you would have felt differently. I felt the same way when my daughter was 13.
At age 5 she was having symptoms but the sweat tests kept coming out "normal" we thought we were treating asthma for 8 years, then at age 13 she started having problems with lung infections -- when the doctor wanted to send us for genetic testing my exact words were "isn't she too healthy to have CF?"
Nobody wants to have a diagnosis of CF, but when something's not right, it's better to get the correct diagnosis so you can receive the best treatment. I feel my daughter is healthier now that we know what we are treating instead of scratching our heads saying "why does she keep getting sick?" Plus there are some preventative & maintenance type things a person can do
to help keep the lungs healthy. (Pulmozyme, exercise, hypertonic saline etc)
I hope she doesn't have CF either, but like I said in my previous post -- check out my blog link and read my first entry -- The time frame and age of our daughters are very similar!! Since you mentioned she is 12 now, and 6 years ago you would have felt differently. I felt the same way when my daughter was 13.
At age 5 she was having symptoms but the sweat tests kept coming out "normal" we thought we were treating asthma for 8 years, then at age 13 she started having problems with lung infections -- when the doctor wanted to send us for genetic testing my exact words were "isn't she too healthy to have CF?"
Nobody wants to have a diagnosis of CF, but when something's not right, it's better to get the correct diagnosis so you can receive the best treatment. I feel my daughter is healthier now that we know what we are treating instead of scratching our heads saying "why does she keep getting sick?" Plus there are some preventative & maintenance type things a person can do
to help keep the lungs healthy. (Pulmozyme, exercise, hypertonic saline etc)