No Sweat at Sweat Test

kyelizabeth

New member
I took my son for a sweat test last week, but it was a bust because no sweat was collected in the little tubes. The room was hot and his head was sweaty, but no sweat on the arms! Has anyone ever heard of this??

We go for our first visit with the pulmonologist tomorrow, so we'll see if he wants us to try again.
 

Mama2Five

New member
How old is your son? Our daughter sweat tested at 25 days old, and they were concerned she might not produce enough sweat. They had me put on layers of clothes and then I also wore her (I babywear with a wrap) and she was against my body....needless to say, when we took her off we were both sweaty. They did her thighs though. There was enough for a result.

Maybe bring layers of clothes and see if they want him to wear them? Good luck! Praying for some sweat! :)
 

triples15

Super Moderator
Hi Elizabeth~

I recently had a sweat test to see if I qualified to participate in a study. Collecting enough sweat was VERY trying. The first try I produced very little sweat, not even close to enough for the test, although when we took the electrodes off my arm was still wet with sweat. So we had to try again, so this time they had me put on a jacket and walk/jog laps around the hospital floor. Then they checked the little tubes, and still hardly any sweat. So they had me go outside on a 90 degree day and make a lap around the hospital (no joke). Still, not enough sweat when they took it off. They had to do a bunch of checking to see if it was ok if they combined the sweat from the 2 separate tests into 1 vial. So the 2 left arm tests in one vial, and the two right arm tests in one vial. The nurse finally got the go ahead that this was ok to do, only to see that even after combining them it was still going to be very close on whether it was enough, that the lab may not be able to do it. UGHHH!!

Thankfully it did turn out to be enough, but talk about wild. I have NO idea why I wasn't sweating at all. I WAS sweating from all they were having me do, but apparently not where the electrodes were.

So sorry I'm not much help. I guess all of this rambling was meant to say that it's not unheard of. Sounds like Janet had some good ideas!

Good luck to you! I'm sure this is all beyond stressful.

Take Care,

Autumn 34 w/cf
 

triples15

Super Moderator
Me again, a follow-up question....

Was the sweat test done at an accredited CF center? I reread your message and wondered if it was done somewhere else since you mentioned you see your pulmonologist tomorrow. I'm always leery of anyone other than an accredited center doing them........
 

Aboveallislove

Super Moderator
Our CF Center had us give our newborn son salt in his bottle to help with the sweat test. Maybe something to do if you are going to be re-testing.
 

kyelizabeth

New member
Max is 21 months old. Will try more layers next time. We had a space heater on in the room plus had him wrapped in a fleece blanket. Next time will dress for snow : )

The pulm visit today left me feeling frustrated. While I am glad he didn't feel max has CF, I feel like my concerns were dismissed. Max is >90% for weight so I feel like docs look at him and assume he can't be sick. I ex
 

kyelizabeth

New member
I would expect that from a gen pedi, but not from a pulm at an accredited CF center. He also dismissed max's chest X-ray findings as normal. ( peri-hilar infiltrates, hyper-inflation, and peribronchial cuffing)
I was also very frustrated that the bowel symptoms were disregarded. Pulm said not cf unless there is undigested food or oil in the stool. So, frequent foul smelling, mucousy, floating stools are normal? I don't want my son to have CF, but I can't dismiss the nagging feeling that something's amiss. It didn't help that max was without any resp symptoms today.
 

Aboveallislove

Super Moderator
Floating stools is classic of unabsorbed fat and typical for CF. I am so sorry for what you are facing. Frankly, I would try a different CF Center and also give him salt in his drinks (a little here and there) before the next sweet test. Hugs.
 

AttyMom

New member
I don't have any digestive issues and am almost constantly working to lose weight, and I do have CF. Thus, not having digestive issues or being a higher weight percentile shouldn't be the deciding factors.
 

AttyMom

New member
Also...have two sons and began getting worried they have CF. Took them for a sweat test and my younger son didn't sweat enough. We waited 6 months and did it again. Neither son has CF, but both are carriers.

I hope your next sweat attempt produces results.
 

dmac

New member
When I was first tested in my thirties I didn't have hardly any sweat but the pulmonologist did it anyway and said the tests didn't show anything, whatever that meant. I switched to another pulmonologist when he began talking about exploratory surgery in my lungs. Next time I had a sweat test the doctor at the CF center tested me on a day that I had 102 degree fever and diarrhea. They came back and said there hadn't been enough sweat. By the time I was 40 I was sent back to the CF center and had a different doctor and she said it's time to do a gene test instead. It came back positive for CF. Can you ask them to do a gene test? For me that was the thing that finally showed a real diagnosis. I'm sure it is frustrating and painful not to know what is wrong with your little one. This might be the way to find out once and for all. My pulmonologist had sworn I didn't have CF yet he had treated me with CF drugs because they seemed to help me! When it came back with the numbers and everything he was surprised. I hope you find the answer soon.
 

dmac

New member
I meant to add to my post that I am now 64 yrs old. Having the diagnosis helped a great deal and being treated by real CF doctors is the way to go. Thanks. Donna
 

LittleLab4CF

Super Moderator
I can't begin to figure how to make a 21 month old boy sweat. I'm pushing 65 and I still can't sweat on command. My non CF brother is five years my senior and a born athlete. When brother Bob was about 14, he converted a basement room into a gym. At first he lost weight and after a year or so, he began to slowly put on some real muscle. And he trained to sweat. He could sweat competitively if it were a sport. I would parrot his workout routine, usually following each routine with less weight. In the hour or so workout, Bob drank three to four quarts of water. I would sip away on a glass of water but I wasn't thirsty and it often gave me a stomach ache, but I could not sweat to save my life.

There have been CFers and CF caregivers that have repeated a sweat chloride test a dozen times, even two dozen times in rare cases. Unlike traditional tests, medical tests are variable. Why do so many CFers or potential CFers fail to produce enough sweat to analyze? If anybody searches this site for posts and threads about failed sweat tests, it seems like a very common issue.

Small Duct Disease (SDD), is a hallmark of CF. Typically, SDD affects our ducts like the common bile duct, pancreatic ducts, liver ducts and so forth. But every mucus gland is a miniature duct system. Like diagrams of our sweat glands, a long duct is coiled into a ball with blood capillaries feeding from below and the end erupting at the skin's surface in the form of a pore. About the only time WE worry about a sweat gland is when a big one get plugged right on the end of our nose.

As more of an indicator, unlike most kids, I loved naps and I loved baths and showers. I would think many if not most CFers feel this way. My mother used to chide me about the excess of "white heads" everywhere and "black heads" on my neck. The black heads of course bothered me and I found a syringe type of tool that would suck those babies clean. I was flat out astonished at how much gunk was behind the tiny bit of black that covered the pores. I'm not talking about age 13 or 18 but at 9 and 10 part of my daily toilet was devoted to mechanically cleaning my sweat glands. I did the same with pimples but that's another story.

We have two types of sweat glands under our skin. One type comes with a hair follicle and one does not. Apocrine sweat glands are concentrated around hairy parts of the body like the arm pits. These aren't the right kind of sweat glands for a sweat chloride test. Eccrine sweat glands are all over our bodies with concentrations at the hands and feet. Why they do a sweat test on the arm or leg and not our clammy hands and feet might have to do with the tiny electric current they run through the skin to stimulate sweat glands. Ouch! I honestly wonder why they don't test the palms or feet. My hands sweat so much salt, I must wipe my steering wheel down fairly regularly and to date I have not found a watch band that doesn't rot off my wrist including stainless steel.

I was a scientist even as a kid and my curiosity over what was clogging my pores became an experiment of sorts. Having a brother five years older gave me access to the methods of analyzing the contents of my plugged sweat glands. By reading up on what waste is excreted by sweat glands plus the expected contents of sweat when they are working properly, I narrowed my search to salts and toxins like urea and lactic acids. A plugged sweat gland is almost pure salt mixed in with water and traces of body wastes like lactic acid, which gives it an oily consistency.

Normal sweat is supposed to be close to our 0.9% saline. Really! When CFers sweat from exercise, the sweat that gets into our eyes burns like sin. The 6% salt solution in sea water doesn't burn our eyes so just how strong is that sweat? Once sweat gets flowing from a sweat gland and it isn't still cleaning out concentrated salts stored in the duct, it could be salty enough to peg the test. In order to sweat, we must be well hydrated which means water and plenty of electrolytes.

Although the test is specific to choride ions, our electrolyte balance is many salts like potassium chloride, calcium chloride and magnesium chloride. An imbalance in any one salt is enough to throw the chloride concentration off. Don't be discouraged by a non positive test. It is common to repeat this test until a positive result is made. It isn't as crazy as it sounds. Genetic testing can say for certain if your child has the potential for cystic fibrosis but it isn't able to determine how serious the issues are likely to be or become.

The amount of excess chloride in our sweat is a direct indicator of disease, in our case CF. So being tested and tested until a positive result is obtained has some reasoning in the apparent madness. It also could be an indicator of seriously small ducts, and small duct disorder, or disease. Our mucus glands, salivary glands, thyroid glands, breasts, pancreas and other endocrine glands all utilize mucus glands for a transport liquid. Our glands are loaded with mucus glands who's only function is to make liquids for transporting other chemicals such as enzymes or hormones or dust and pollen trapped by cilia often found around the mucus gland's pores. The fact that the sweat glands refuse to work could because they are clogged.

I finally trained my sweat glands to sweat. But like muscles, you need to exercise them. Sauna therapy is a controversial way to stimulate sweating. From infancy there was a local mineral hot springs that we all gathered at. Most times all I got for my efforts was a case of prickly heat, a rash from highly acidic plugged pores that failed to break open and flow with sweat. Prickly heat rash is when our eccrine pores plug up and Baking soda treatment would cake on my skin like some abrasive grit. But using that grit to exfoliate my skin had certain advantages. I'm not suggesting you send your baby for a skin peel but from the little research I can find on the subject, CFers don't easily sweat, nor do they sweat adequately.

Don't worry about a negative sweat test, especially one that is incomplete do to quantity. Worry about having any health issues addressed. Your son may never produce a passing sweat test, or it may be negative. A CF child may not even show CFTR genes, although we understand more about non-mutation mutations, or errors like T polymorphisms.

It seems ghoulish at times searching for a firm diagnosis but the frustration of being happily told what you or your child doesn't have instead of a diagnosis for what he does have is understandable. Someday I hope medicine finds a less judgmental term for tests.
LL
 
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