Confusion about sweat test vs. Ambry panel

K

katie11

New member
My son (21 months) was ordered a sweat test to "rule out cf." His symptoms include:
- difficulty passing first stools (needed stimulation after meconium)
- reflux (confirmed w/ UGI; treated successfully with Reglan and Prilosec, no longer requires meds)
- Constipation from 2 months - 8 months (treated successfully with Milk of Mag)
- Pneumonia x1 at 15 months
- Non-allergic Rhinitis
- Frequent wheezing / "asthma cough" (maintenance of Pulmicort x 1/day; Albuterol as needed)
- Re-current ear infections (Tubes placed April 2007 - infection free since)
- Re-current sinus infections - recent CT scan showed blocked maxillary sinuses
- Slow weight gain (13th percentile for weight, 25th for height - Terrible eater)
- Recurrent high fevers (probably secondary to sinusitis)

So .... we had the sweat test today and I was pleased to hear that the result was only a 4. Is this possible? Can it be this low? I have read a lot about how the sweat test can give a false negative and how the full Ambry Panel is the only definitive answer. Is the full panel only reccomended for people whose numbers fall into the borderline (or close to borderline) category, or is this something that I need to ask my son's pediatrician about?

Thank you!
 
K

katie11

New member
My son (21 months) was ordered a sweat test to "rule out cf." His symptoms include:
- difficulty passing first stools (needed stimulation after meconium)
- reflux (confirmed w/ UGI; treated successfully with Reglan and Prilosec, no longer requires meds)
- Constipation from 2 months - 8 months (treated successfully with Milk of Mag)
- Pneumonia x1 at 15 months
- Non-allergic Rhinitis
- Frequent wheezing / "asthma cough" (maintenance of Pulmicort x 1/day; Albuterol as needed)
- Re-current ear infections (Tubes placed April 2007 - infection free since)
- Re-current sinus infections - recent CT scan showed blocked maxillary sinuses
- Slow weight gain (13th percentile for weight, 25th for height - Terrible eater)
- Recurrent high fevers (probably secondary to sinusitis)

So .... we had the sweat test today and I was pleased to hear that the result was only a 4. Is this possible? Can it be this low? I have read a lot about how the sweat test can give a false negative and how the full Ambry Panel is the only definitive answer. Is the full panel only reccomended for people whose numbers fall into the borderline (or close to borderline) category, or is this something that I need to ask my son's pediatrician about?

Thank you!
 
K

katie11

New member
My son (21 months) was ordered a sweat test to "rule out cf." His symptoms include:
- difficulty passing first stools (needed stimulation after meconium)
- reflux (confirmed w/ UGI; treated successfully with Reglan and Prilosec, no longer requires meds)
- Constipation from 2 months - 8 months (treated successfully with Milk of Mag)
- Pneumonia x1 at 15 months
- Non-allergic Rhinitis
- Frequent wheezing / "asthma cough" (maintenance of Pulmicort x 1/day; Albuterol as needed)
- Re-current ear infections (Tubes placed April 2007 - infection free since)
- Re-current sinus infections - recent CT scan showed blocked maxillary sinuses
- Slow weight gain (13th percentile for weight, 25th for height - Terrible eater)
- Recurrent high fevers (probably secondary to sinusitis)

So .... we had the sweat test today and I was pleased to hear that the result was only a 4. Is this possible? Can it be this low? I have read a lot about how the sweat test can give a false negative and how the full Ambry Panel is the only definitive answer. Is the full panel only reccomended for people whose numbers fall into the borderline (or close to borderline) category, or is this something that I need to ask my son's pediatrician about?

Thank you!
 
K

katie11

New member
My son (21 months) was ordered a sweat test to "rule out cf." His symptoms include:
- difficulty passing first stools (needed stimulation after meconium)
- reflux (confirmed w/ UGI; treated successfully with Reglan and Prilosec, no longer requires meds)
- Constipation from 2 months - 8 months (treated successfully with Milk of Mag)
- Pneumonia x1 at 15 months
- Non-allergic Rhinitis
- Frequent wheezing / "asthma cough" (maintenance of Pulmicort x 1/day; Albuterol as needed)
- Re-current ear infections (Tubes placed April 2007 - infection free since)
- Re-current sinus infections - recent CT scan showed blocked maxillary sinuses
- Slow weight gain (13th percentile for weight, 25th for height - Terrible eater)
- Recurrent high fevers (probably secondary to sinusitis)

So .... we had the sweat test today and I was pleased to hear that the result was only a 4. Is this possible? Can it be this low? I have read a lot about how the sweat test can give a false negative and how the full Ambry Panel is the only definitive answer. Is the full panel only reccomended for people whose numbers fall into the borderline (or close to borderline) category, or is this something that I need to ask my son's pediatrician about?

Thank you!
 
K

katie11

New member
My son (21 months) was ordered a sweat test to "rule out cf." His symptoms include:
- difficulty passing first stools (needed stimulation after meconium)
- reflux (confirmed w/ UGI; treated successfully with Reglan and Prilosec, no longer requires meds)
- Constipation from 2 months - 8 months (treated successfully with Milk of Mag)
- Pneumonia x1 at 15 months
- Non-allergic Rhinitis
- Frequent wheezing / "asthma cough" (maintenance of Pulmicort x 1/day; Albuterol as needed)
- Re-current ear infections (Tubes placed April 2007 - infection free since)
- Re-current sinus infections - recent CT scan showed blocked maxillary sinuses
- Slow weight gain (13th percentile for weight, 25th for height - Terrible eater)
- Recurrent high fevers (probably secondary to sinusitis)

So .... we had the sweat test today and I was pleased to hear that the result was only a 4. Is this possible? Can it be this low? I have read a lot about how the sweat test can give a false negative and how the full Ambry Panel is the only definitive answer. Is the full panel only reccomended for people whose numbers fall into the borderline (or close to borderline) category, or is this something that I need to ask my son's pediatrician about?

Thank you!
 
K

katie11

New member
My son (21 months) was ordered a sweat test to "rule out cf." His symptoms include:
- difficulty passing first stools (needed stimulation after meconium)
- reflux (confirmed w/ UGI; treated successfully with Reglan and Prilosec, no longer requires meds)
- Constipation from 2 months - 8 months (treated successfully with Milk of Mag)
- Pneumonia x1 at 15 months
- Non-allergic Rhinitis
- Frequent wheezing / "asthma cough" (maintenance of Pulmicort x 1/day; Albuterol as needed)
- Re-current ear infections (Tubes placed April 2007 - infection free since)
- Re-current sinus infections - recent CT scan showed blocked maxillary sinuses
- Slow weight gain (13th percentile for weight, 25th for height - Terrible eater)
- Recurrent high fevers (probably secondary to sinusitis)

So .... we had the sweat test today and I was pleased to hear that the result was only a 4. Is this possible? Can it be this low? I have read a lot about how the sweat test can give a false negative and how the full Ambry Panel is the only definitive answer. Is the full panel only reccomended for people whose numbers fall into the borderline (or close to borderline) category, or is this something that I need to ask my son's pediatrician about?

Thank you!
 
N

NoExcuses

New member
Sweat tests are pretty old school and are usually done by doctors that don't know much about CF. There are always exceptions, but that's usually the case.

It's a highly variable test that doesn't give great results to many people.

Get a Ambry Full Panel just to put your mind at ease. Those symptoms do seem very CF-like.

The sooner you test, the sooner you can get the son proper treatment <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
Sweat tests are pretty old school and are usually done by doctors that don't know much about CF. There are always exceptions, but that's usually the case.

It's a highly variable test that doesn't give great results to many people.

Get a Ambry Full Panel just to put your mind at ease. Those symptoms do seem very CF-like.

The sooner you test, the sooner you can get the son proper treatment <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
Sweat tests are pretty old school and are usually done by doctors that don't know much about CF. There are always exceptions, but that's usually the case.

It's a highly variable test that doesn't give great results to many people.

Get a Ambry Full Panel just to put your mind at ease. Those symptoms do seem very CF-like.

The sooner you test, the sooner you can get the son proper treatment <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
Sweat tests are pretty old school and are usually done by doctors that don't know much about CF. There are always exceptions, but that's usually the case.

It's a highly variable test that doesn't give great results to many people.

Get a Ambry Full Panel just to put your mind at ease. Those symptoms do seem very CF-like.

The sooner you test, the sooner you can get the son proper treatment <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
Sweat tests are pretty old school and are usually done by doctors that don't know much about CF. There are always exceptions, but that's usually the case.

It's a highly variable test that doesn't give great results to many people.

Get a Ambry Full Panel just to put your mind at ease. Those symptoms do seem very CF-like.

The sooner you test, the sooner you can get the son proper treatment <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NoExcuses

New member
Sweat tests are pretty old school and are usually done by doctors that don't know much about CF. There are always exceptions, but that's usually the case.

It's a highly variable test that doesn't give great results to many people.

Get a Ambry Full Panel just to put your mind at ease. Those symptoms do seem very CF-like.

The sooner you test, the sooner you can get the son proper treatment <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

Mommafirst

Guest
I don't know, that sounds pretty low to be concerning. I do see that his symptoms are enough to pique your interest. I'm not sure you will be able to get insurance to cover the mutation panel with a sweat that low. But if your gut says you need to keep checking and testing, then I'd go with your gut. But, while there have been many low sweats around here that turned into CF positive results, I've yet to see anyone With CF that had a sweat chloride of 4.

One of our members, OKOK, knows a lot about the sweat test. Perhaps OKOK will chime in and give you some additional information.
 
M

Mommafirst

Guest
I don't know, that sounds pretty low to be concerning. I do see that his symptoms are enough to pique your interest. I'm not sure you will be able to get insurance to cover the mutation panel with a sweat that low. But if your gut says you need to keep checking and testing, then I'd go with your gut. But, while there have been many low sweats around here that turned into CF positive results, I've yet to see anyone With CF that had a sweat chloride of 4.

One of our members, OKOK, knows a lot about the sweat test. Perhaps OKOK will chime in and give you some additional information.
 
M

Mommafirst

Guest
I don't know, that sounds pretty low to be concerning. I do see that his symptoms are enough to pique your interest. I'm not sure you will be able to get insurance to cover the mutation panel with a sweat that low. But if your gut says you need to keep checking and testing, then I'd go with your gut. But, while there have been many low sweats around here that turned into CF positive results, I've yet to see anyone With CF that had a sweat chloride of 4.

One of our members, OKOK, knows a lot about the sweat test. Perhaps OKOK will chime in and give you some additional information.
 
M

Mommafirst

Guest
I don't know, that sounds pretty low to be concerning. I do see that his symptoms are enough to pique your interest. I'm not sure you will be able to get insurance to cover the mutation panel with a sweat that low. But if your gut says you need to keep checking and testing, then I'd go with your gut. But, while there have been many low sweats around here that turned into CF positive results, I've yet to see anyone With CF that had a sweat chloride of 4.

One of our members, OKOK, knows a lot about the sweat test. Perhaps OKOK will chime in and give you some additional information.
 
M

Mommafirst

Guest
I don't know, that sounds pretty low to be concerning. I do see that his symptoms are enough to pique your interest. I'm not sure you will be able to get insurance to cover the mutation panel with a sweat that low. But if your gut says you need to keep checking and testing, then I'd go with your gut. But, while there have been many low sweats around here that turned into CF positive results, I've yet to see anyone With CF that had a sweat chloride of 4.

One of our members, OKOK, knows a lot about the sweat test. Perhaps OKOK will chime in and give you some additional information.
 
M

Mommafirst

Guest
I don't know, that sounds pretty low to be concerning. I do see that his symptoms are enough to pique your interest. I'm not sure you will be able to get insurance to cover the mutation panel with a sweat that low. But if your gut says you need to keep checking and testing, then I'd go with your gut. But, while there have been many low sweats around here that turned into CF positive results, I've yet to see anyone With CF that had a sweat chloride of 4.

One of our members, OKOK, knows a lot about the sweat test. Perhaps OKOK will chime in and give you some additional information.
 
A

Alyssa

New member
a sweat test of 4 also sounds pretty low to me too -- most people that I've talked to with positive CF results but low sweat test numbers usually test out at least in the 20's and 30's. However..... <b>do you know if the 4 was an accurate result? </b>
Are you in the US?
Are you getting the sweat test at a Certified CF Center?

Yes, I agree these do sound like CF type symptoms so it's worth pursuing. A full genetic test would give you far better results but it is expensive and many doctors don't like to order them. Keep pushing for it and in the mean time get another sweat test either at the same location or a CFF clinic if you were not already at one.

Best wishes, and please keep us updated.
 
A

Alyssa

New member
a sweat test of 4 also sounds pretty low to me too -- most people that I've talked to with positive CF results but low sweat test numbers usually test out at least in the 20's and 30's. However..... <b>do you know if the 4 was an accurate result? </b>
Are you in the US?
Are you getting the sweat test at a Certified CF Center?

Yes, I agree these do sound like CF type symptoms so it's worth pursuing. A full genetic test would give you far better results but it is expensive and many doctors don't like to order them. Keep pushing for it and in the mean time get another sweat test either at the same location or a CFF clinic if you were not already at one.

Best wishes, and please keep us updated.
 
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