Just a quick question. I've been reading on here so much about salty sweat, and our doctor also mentioned it to us. We have a little girl who is being tested next week, and that is another thing that they were concerned about, along with her digestive, and respitory issues. They said that salty sweat can be indicitive of cystic fibrosis, but I thought that sweat was just salty, I've always thought and heard that. I even know that if I take a shower after being sweaty, the saltiness makes my eyes burn and my lips tingly and I can taste the salt, and I don't have cystic fibrosis. So wouldn't it be normal for her sweat to taste salty, or even to be salty on that test that they will do, it is a sweat test that they are doing, where they will check for the amount of salt in her sweat, at least that is how I understand it. Is there a certian amount of salt that they check for, do they measure it a certian way? Doesn't everybody just have salty sweat? I know I may be grasping at straws here, but I just maybe don't understand how something that is normal can be indicitive of something like this. Sorry to go on and on, I am just a little on edge right now with this testing next week.
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salty sweat
- Thread starter anonymous
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Augustmoon
New member
Everyone has a certain amount...if you go to CFF.org, it explains the test and what is and isn't normal. Are you having your daughter tested at an accredited CF Center? That is very important!!!!! Please let us know if you have any other questions. We aren't doctors, just supporters <img src="i/expressions/face-icon-small-blush.gif" border="0">) and know what you are going through! I'll be praying for you and your little girl!
Yes, we have been refered to a cystic fibrosis(I assume that is CF) clinic. There they will do the sweat test and also some scoping things, I guess they want to go in both ends to look around and take some biopsys and samples, actually I think those scopes are not in the CF clinic, but in the same hospital, and we also have an appt with a doctor in the CF clinic as well. One thing I can say is that once they got this idea in their head about cystic fibrosis they have acted pretty fast and are getting things done. I know that they said the test will be non-invasive and painless for her, it is the other things that I think I am more worried about, those scopes, they say she will be sedated, and I read on here on another post about the colonoscopy, does anyone know anything about a bronchioscope (sp?). They said weather or not it is CF they may get some clues as to what is going on by doing these tests. I will go to the site that you mentioned. Thanks.
Augustmoon
New member
I'm new to this, so I am not quite sure about the other things you mentioned. Did they mention doing a culture? That might be one thing they do if it is CF...to see if there are certain bacterias that CF patients are prone to. I'm sorry she has to go through this...my son went through a lot when he was about 3 1/2 months old!! I think it LITERALLY broke my heart into a million pieces! Everything will be okay...whether it's CF or not!!! There are so many great things in the works! Please let me know if you need anything, or if you just need to talk!!! augustmoon0003@aol.com or www.fightforethan.com!!
>>and I don't have cystic fibrosis<<Don't wanna scare you even more, but how do you know? Wouldn't be the first case where a parent is dxed with CF after one of the kids. It's good that the docs act fast now, but I hope they are not overreacting. At least I am no fan of the idea to do a bronchioscopy "just out of curiosity". And if they do it knowing that it could be CF, then make sure that they take a sputum sample (could save you another bronch in the future) and that they use a sterile bronchoscope. A few years ago they used the same bronchoscope for several patients in Baltimore and caused lots of cross-infections.
Sweat is salty no matter what. People with CF have VERY salty sweat. try letting the child get sweaty and then let her cool off. if you kiss her then and taste a lot of salt (more than you would expect) that could tell you if her sweat is more salty than usual. Before my daughter was diagnosed, I knew that if I kissed her after she got sweaty and I had chapped lips that they would burn more than i expected. (do you understand what I mean?) I too would worry about the bronc and any other scope that they want to do. Why would they put her through that if it not going to be diagnostic? I would think that they could wait until the sweat test comes back. if it is negative, then I could see why they would want to get samples to try to diagnose the problem, but if it is positive, then they would know why she is having these issues and there would be no real need for the scopes. they can get sputum samples from babies to culture and test for bacterium. They are not quite as in depth as a bronc culture but far less invasive. Remember you can ask them why and ask to hold off on the scoping if you want. My daughter was diagnosed nearly 5 yrs ago and has never had any bronc. it is not what every doc does. I hope that iti is not CF.
Her sweat test is scheduled for 10:00 am and then the scopes are scheduled for 1:00. Do you thik that we will know the results of the sweat test by 1:00? Maybe if we do they can just cancel those scopes. She has some abnormal bleeding though I think that is the reason for the scopes. We also have some blood test results 2 of the 3 came back negative, celiac and IBS(didn't know that could be tested through blood) but the last one they will not give me the results over the phone, they say that the doctor will discuss it with me, but since we live so far away from the hospital we will just have to wait untill Wednesday when we go there for her other tests. Of course at this point I am in a bit of a panic, but they wouldn't have already tested for CF by blood before the sweat test would they? The day we had the bloodwork done it was so hectic that I didn't get a chance to read what all they were testing for and the doctor just said celiac and "some other things" but she did not specify. I feel almost irresponsible now for not making sure that I knew exactly what they were testing for
Augustmoon
New member
I can understand why you're upset! It would really upset me that they wouldn't tell me what's going on (the results that they won't give you over the phone)!!! I don't know if the sweat test would be back that fast (by 1pm), I think it depends on the hospital, but you can always request that nothing be done until you get the results. If it's all being done at the same hospital, I'm sure they could work something out. If it were me, I would demand the results of the test they are not telling you about...you may not get anywhere...but how can they do that to you????? Sorry, I'm rambling, but that would outrage me!!!! YOU have to demand things, unfortunately. That's how it's been for us (I had to request/demand my son get the sweat test since he "didn't look like he had CF"!!). It's your child, not theirs! Can they legally keep results from you???? I mean, they might think they are doing the right thing, but you need to know what's going on! When did they do these blood tests? I'm not sure if they checked for CF, but that kind of test takes a couple of weeks...and I can't POSSIBLY imagine them keeping that kind of news from you since your child would need to get all the meds she needs to help her feel better! I'll be thinking of you! Let us know what happens!!!
The tests were done on June 3rd, and the others came back pretty quick, but I guess the other one was sent out somewhere. I kept calling and they kept saying it wasn't back yet. Then finally now they said it'sback but that they( the lab techs or the nurses) are not allowed to tell me the results,but they told me the results of the other two tests. I don't know if the doctor can tell me the results over the phone or not. I am the most impatient person to start with and this is just even worse than normal. We are going there on Wednesday, so I know we will talk to the doctor then. If it wasn't such a drive (3 hours) I would just go up there today and make them tell me something. I think that some part of me almost dosen't want to know. The last time we had to go see a doctor for results that would not be given over the phone, my mother was diagnosed with cancer. Maybe that experience is causing me to over-react to this one. I hate that they have to do all of this to her and I keep trying to think of reasons or excuses to cancel, but I know that they need to do these things to find out what is going on and hopefully once we know that they can start helping her to feel better.
Hi, this subject really hits the nerve.... when my son was diagnosed with cf we went for the sweat test and they called us back for a retest!! i knew when they wanted to run a second one somthing was wrong.. it takes about a hr for the test result to come back.. as soon as they had the result they wouldnt tell me cause they only ran the test, they told me to call the dr.. when i got the dr on the phone they wanted to see me at the office,as soon as i could get there..( which was over a hour away) i KNEW somthing was wrong and i DEMANDED a answer over the phone i told them i NEEDED to know.. i would still go to the office but i wanted to know right then what the result was!!!!! and they did tell me over the phone!! i am not always a bit*ch but its my kid... there was no way i was going to drive over a hour in a state of panic, gut instinct already knowing the answer.. i cant imagine waiting until wensday, and i dont think should have to!!! if i were you i would call the drs office and ask to leave a message for the doctor to call you back asap, and dont take no for a answer...... im sorry this was so long but doctors drive me nuts somtimes!! <img src="i/expressions/face-icon-small-smile.gif" border="0">Melissa 24, mom to dylan 5 no cf and caleb 3 next month with cf...........
Augustmoon
New member
Melissa,I AGREE 200% WITH YOU!!! When I had my son tested, I waited waited and waited. No one ever called. The next day I called my ped. and they said that they didn't get the results (I now know that they did) but since I had to bring my daughter in, they would see if they were in then (ya, right!)!!!!! I was sitting there thinking the test was probably going to be neg. since they were being so nonchalant about it. So I took my DD in (sick with a cold that my DS eventually caught and it ended up being RSV) and she talked to me about her...then told me to sit down for DS's results. If I had known then what I know now!!! I don't worry about being demanding anymore!!!
Doc's never want to give "bad news" over the phone. Spme people really hate to get bad news on the phone, some would rather have a bit of privacy from the doc after gettting this kind of news. If i had to guess, maybe they ran a basic CF screening test with the blood to see if they saw any mutations, and came up with one, so they want a sweat test to confirm or rule out CF. I would call and make a fuss. Talk to the doc and get the answer about the blood test. Why should you have to wait and drive yourself nuts? I was told that it can take a few hours to get the result of a sweat test, but I think it depends on the lab and how busy they are/how big of a rush the doc puts on the result. I would also call and find out why they want the bronc done, before I let them do it. Some docs do it as a matter of course and others don't bother with them unless it is absolutely necesary. It is invasive and can cause problems too.Andrea