Negative sweat test but lots of mucus

Janae Warren

New member
Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled.

My neice is a carrier. We just found that out.

My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I just don't know what else would be causing all this chest mucus? Any ideas? I hear it is very rare to get false negative on sweat test, even for an atypical cfer.

Perhaps her original diagnosis of asthma is correct? I just don't know.

We've watched videos of asthma and CF on YouTube together. The asthma videos she says "no I don't feel like that." but with CF videos and vlogs that describe the mucus and cough she says "yes! That's how it feels!"

I know she doesn't have the traditional bad CF. But what else could mimic atypical/mild CF?

Feeling lost at the moment. Going to dr again next week. Maybe this is just the way it is with my kiddo.

Any ideas or input would be appreciated.
 

Ratatosk

Administrator
Staff member
Was the sweat test done at an accredited cf facility? There are plenty of people who've passed the sweat test with flying colors. My son is one of those with a normal 32 for a result, albeit he was a teeny tiny baby at the time and babies don't really sweat that much.

Also, the only definitive test would be genetic blood tests. There are over 1500 mutations for CF.

Meanwhile, if she's got a bunch of crud she needs to cough up, then I would ask someone to teach you how to do chest physiotherapy (CPT) to get that stuff out.
 

Janae Warren

New member
It was an accredited location. And both arms were about 10ml. So that's pretty low. Never heard of CPT before. Need to look it up.
 

Ratatosk

Administrator
Staff member
CPT is basically cupping hands and beating the "snot out of them" on different portions of the back, sides and chest.
 

Melissa75

Administrator
I'm guessing you've looked into allergies already? How about bronchiectasis? It's chronic, usually purulent aka not clear, mucus from infection and damaged airways in the lungs.

I was a severely mucusy baby/kid and had a very low sweat test. Eventually my dx was asthma and allergies: post nasal drip into my lungs and repeated pneumonia throughout childhood. Then in my late twenties, I had enough repeated infections, I developed bronchiectasis, but I had the chronic non-infected cough long before the airway damage. A CT scan picked up the bronchiectasis and caused me to learn more about airway clearance techniques and medications, and be retested for CF, again low sweat.

I suggest you ask for a CT scan and/or sputum cultures. People with chronic infections from lung damage tend have particular and less common bacteria in their mucus. You're right in trying to get to the bottom of this. Untreated abundance of mucus and coughing does eventually cause damage in my experience.
 
S

stephen

Guest
Janae,

There are a number of us here who had multiple negative sweat tests but were eventually diagnosed with CF via genetic testing. Once the diagnosis was made, things invariably improved because of the CF treatment regimen that became available.

You should push for genetic testing. It may even turn out that your daughter has a mutation that responds very well to Kalydeco, like me thank G-d, and her problems with thick mucus could hopefully disappear.

Good luck!
 
L

lauryn.tubes

Guest
I agree with stephen. My daughter has two CF mutations and a negative sweat. If and when she starts showing symptoms (like your daughter) she would be put on a CF regime post haste. The average sweat test for my daughters mild mutation is 39. That's low for CF standards but it still results in atypical CF. The only reason we would know CF is the cause of my daughter's lung/GI problems is because of genetic testing. Without that she could go mis diagnosed for years and end up with permanent lung damage.

I would push for genetic testing and start CPT in the mean time. HTH
 

mom24dodd

New member
lauryn.tubes...if your daughter has two CF mutations - is she not already on a CF regime? Maybe I did not understand your statement? My son only has shown the digestive symptoms so far - and he does CPT three times a day and is on all kinds of nebulized lung meds plus kalydeco.
 

Ratatosk

Administrator
Staff member
I believe some clinics are more proactive than others. Our previous cf clinic stressed only cpt/vesting and nebs if there were symptoms. Our current cf doctor stresses minimum twice a day, more is better. We do three. And despite ds' symptoms primarily being digestive with no cough, CT and Lung scans have shown typical CF sinus disease as well as progression of the disease affecting his lungs. Personally I'd rather err on the side of caution.
 
T

The Dot

Guest
Well our 7 year old daughter came back negative on sweat test. Which is a relief but leaves me puzzled.

My neice is a carrier. We just found that out.

My daughter has to "heeeave" throughout the day, every day, to work up the mucus and spit it out. It is just part of our daily life. I just don't know what else would be causing all this chest mucus? Any ideas? I hear it is very rare to get false negative on sweat test, even for an atypical cfer.

Perhaps her original diagnosis of asthma is correct? I just don't know.

We've watched videos of asthma and CF on YouTube together. The asthma videos she says "no I don't feel like that." but with CF videos and vlogs that describe the mucus and cough she says "yes! That's how it feels!"

I know she doesn't have the traditional bad CF. But what else could mimic atypical/mild CF?

Feeling lost at the moment. Going to dr again next week. Maybe this is just the way it is with my kiddo.

Any ideas or input would be appreciated.

Hi Janae - I am a Respiratory Therapist. Your story sounds like my grandson when he was about 3-5yrs old, until a very astute asthma doctor wondered if he had gastric reflux (I found out later that he had cousins with severe reflux as babies) after he had a negative sweat test. Once he got on the meds to control the reflux, all of his congestion cleared up. Now that he is older, he can tell me when his reflux is acting up and we can adjust his meds. Bear in mind that if reflux is the culprit, then it can lead to bronchiectasis over time, so starting on meds at an early age is important. (And do not be surprised if there are not overt symptoms. I meet adults with silent night-time reflux which has led to bronchiectasis and they never even realized they had reflux.)
 

Janae Warren

New member
Hi Janae - I am a Respiratory Therapist. Your story sounds like my grandson when he was about 3-5yrs old, until a very astute asthma doctor wondered if he had gastric reflux (I found out later that he had cousins with severe reflux as babies) after he had a negative sweat test. Once he got on the meds to control the reflux, all of his congestion cleared up. Now that he is older, he can tell me when his reflux is acting up and we can adjust his meds. Bear in mind that if reflux is the culprit, then it can lead to bronchiectasis over time, so starting on meds at an early age is important. (And do not be surprised if there are not overt symptoms. I meet adults with silent night-time reflux which has led to bronchiectasis and they never even realized they had reflux.)
a

Thank you so much! It's funny that you mention this because at my daughter's last appointment I mentioned her acid reflux to the Dr. She tells me that she has wet burps etc. So I wondered if that is contributing to her lung disfunction also.

I hope that we start seeing some results from the reflux medicines. We got the medicine about 2 weeks ago but we have forgotten about it several times. I hope it helps!
Thanks again!
 

Janae Warren

New member
I'm guessing you've looked into allergies already? How about bronchiectasis? It's chronic, usually purulent aka not clear, mucus from infection and damaged airways in the lungs.

I was a severely mucusy baby/kid and had a very low sweat test. Eventually my dx was asthma and allergies: post nasal drip into my lungs and repeated pneumonia throughout childhood. Then in my late twenties, I had enough repeated infections, I developed bronchiectasis, but I had the chronic non-infected cough long before the airway damage. A CT scan picked up the bronchiectasis and caused me to learn more about airway clearance techniques and medications, and be retested for CF, again low sweat.

I suggest you ask for a CT scan and/or sputum cultures. People with chronic infections from lung damage tend have particular and less common bacteria in their mucus. You're right in trying to get to the bottom of this. Untreated abundance of mucus and coughing does eventually cause damage in my experience.

Thank you for your confirmation of my gut feeling. I know something is "off" but with the negative sweat test and good peak flow numbers I wonder how hard to push.

We have a follow-up appointment with the nurse practioner on Wednesday. The last MD dr to see her was going to refer her to Pulmenologist but decided to give the asthma/allergy dr a little longer to see if things changed. That was a month ago. She still has to work up mucus many times a day- even when her peak flow is good. We just started her on acid reflux medicine so maybe that will make a difference.

Thanks so much for your help!
 

Janae Warren

New member
Janae,

There are a number of us here who had multiple negative sweat tests but were eventually diagnosed with CF via genetic testing. Once the diagnosis was made, things invariably improved because of the CF treatment regimen that became available.

You should push for genetic testing. It may even turn out that your daughter has a mutation that responds very well to Kalydeco, like me thank G-d, and her problems with thick mucus could hopefully disappear.

Good luck!

Thatk you so much for your helpful response. We have follow-up with the dr on Wednesday. My husband and I are in a quandry of how hard to push. I keep thinking "maybe this is just how our daughter is going to be- wet cough and mucus spitting all day!". I even hear some online who are just carriers but they feel it impacts their lungs like mild case of CF. Will talk to the Dr. about it and see what the next step should be.
 
S

stephen

Guest
Janae,

If you have ANY doubt about about the treatment your daughter is getting, don't hesitate about getting other opinions.

Many of us who were happy with our doctors did reach out for for other opinions and suggestions. NO doctor knows everything! A good one should not feel threatened if you do seek other opinions.

You say “I keep thinking maybe this is just how our daughter is going to be- wet cough and mucus spitting all day”.

This reminds me of what the I was told by a noted doctor who was the chairman of the infectious disease department at a large New York area hospital: “Maybe you’ll have to learn to live with those low grade fevers”. That was before I was diagnosed with CF, and obviously I did seek other opinions!
 

Ratatosk

Administrator
Staff member
I guess I'd push on the basis that she's got all that junk she has to spit out each day and indicate something isn't right with her and you'd like to get to the bottom of it. CF or not, something is going on with her. Also, if she can hack up a good sample, ask them to run a culture on it to see if she has an infection, see what she's growing and what antibiotics it may be sensitive to. Also, ask about having someone in respiratory therapy show you and her how to huff cough and do chest physiotherapy (CPT)
 

Janae Warren

New member
I guess I'd push on the basis that she's got all that junk she has to spit out each day and indicate something isn't right with her and you'd like to get to the bottom of it. CF or not, something is going on with her. Also, if she can hack up a good sample, ask them to run a culture on it to see if she has an infection, see what she's growing and what antibiotics it may be sensitive to. Also, ask about having someone in respiratory therapy show you and her how to huff cough and do chest physiotherapy (CPT)

We just got back from Dr this week and she wants to push for further testing too.

The reflux medicine seems to be helping. We'll see...
 

sheilashera

New member
Hello. I hope and pray you find answers. Keep fighting and pushing until you FIND the reason. As a parent we must fight , push and be our children's voice.
As a child I was diagnosed with "asthma". I recall as a child , being congested, soa and my face always turning bright red on exertion ( still does). I am just now, at 48 yo, trying to find out my "true" diagnosis. So, I wanted to share part of my story and hope it can you or someone ?. So far I am diagnosed with dynamic airway collapse (Tracheobronchomalacia ) , non CF Bronchiectasis and I DO NOT have "asthma"( ruled out in 2011). Let me know if you have any questions.
Again, fight,fight, fight !! Good luck.
Peace,
Sheila E
 

Printer

Active member
When you say that the sweat test was done at an accredit institution i am curious what you mean. Your child should be seen at an CFF Approved CF Center by an CF Specialist. For example, in Boston Massachusetts General Hospital and Brigham and Woman's Hospital (both owned and operated by Partners) have a total of more than 6000 Doctors on Staff. Both are CFF Approved. Only about 15 of the 6000 Doctors are CF Specialists.

The sweat test given by a non CF Specialist is usually a "screening sweat test".
 

Printer

Active member
I have 2 known mutations and have been diagnosed with CF by a host of CF Doctors. I have NEVER had a positive sweat test.

Bill
 

Beccamom

New member
PCD testing

I have 2 known mutations and have been diagnosed with CF by a host of CF Doctors. I have NEVER had a positive sweat test.

Bill

I have two mutations and an Intermediate sweat test and I am diagnosed and treated for CF. Has your child been tested for PCD, Primary Ciliary Dyskinesia?
 
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