One positive sweat test on negative.

M

mcmommy3

New member
A couple of weeks ago my one year old son had a sweat test that was positive. The number was 70. Then he just had another on Monday and it was negative. It was 17.

Anyone ever heard of this happening? We still have to see the pulmonologist not sure what is going to happen. I am just worried.

He does not have many symptoms, but the biggest is weight loss. He has always struggled with gaining weight, but he is now losing it. He is almost 15 months and oly 14lbs. He does not have oily poop, but he seams to have mucus in it, some times more than others. He has only had phenomena once at 6weeks old. Then back in February for six weeks he was on three different antibiotics of ear and sinuous infections with a cough the whole time. But other then that has been really healthy.

I would also like some info on what questions I should be asking the pulmonologist when we go.

Thanks in advance

Carolyn
 
M

mcmommy3

New member
A couple of weeks ago my one year old son had a sweat test that was positive. The number was 70. Then he just had another on Monday and it was negative. It was 17.

Anyone ever heard of this happening? We still have to see the pulmonologist not sure what is going to happen. I am just worried.

He does not have many symptoms, but the biggest is weight loss. He has always struggled with gaining weight, but he is now losing it. He is almost 15 months and oly 14lbs. He does not have oily poop, but he seams to have mucus in it, some times more than others. He has only had phenomena once at 6weeks old. Then back in February for six weeks he was on three different antibiotics of ear and sinuous infections with a cough the whole time. But other then that has been really healthy.

I would also like some info on what questions I should be asking the pulmonologist when we go.

Thanks in advance

Carolyn
 
M

mcmommy3

New member
A couple of weeks ago my one year old son had a sweat test that was positive. The number was 70. Then he just had another on Monday and it was negative. It was 17.

Anyone ever heard of this happening? We still have to see the pulmonologist not sure what is going to happen. I am just worried.

He does not have many symptoms, but the biggest is weight loss. He has always struggled with gaining weight, but he is now losing it. He is almost 15 months and oly 14lbs. He does not have oily poop, but he seams to have mucus in it, some times more than others. He has only had phenomena once at 6weeks old. Then back in February for six weeks he was on three different antibiotics of ear and sinuous infections with a cough the whole time. But other then that has been really healthy.

I would also like some info on what questions I should be asking the pulmonologist when we go.

Thanks in advance

Carolyn
 
M

mcmommy3

New member
A couple of weeks ago my one year old son had a sweat test that was positive. The number was 70. Then he just had another on Monday and it was negative. It was 17.

Anyone ever heard of this happening? We still have to see the pulmonologist not sure what is going to happen. I am just worried.

He does not have many symptoms, but the biggest is weight loss. He has always struggled with gaining weight, but he is now losing it. He is almost 15 months and oly 14lbs. He does not have oily poop, but he seams to have mucus in it, some times more than others. He has only had phenomena once at 6weeks old. Then back in February for six weeks he was on three different antibiotics of ear and sinuous infections with a cough the whole time. But other then that has been really healthy.

I would also like some info on what questions I should be asking the pulmonologist when we go.

Thanks in advance

Carolyn
 
M

mcmommy3

New member
A couple of weeks ago my one year old son had a sweat test that was positive. The number was 70. Then he just had another on Monday and it was negative. It was 17.
<br />
<br />Anyone ever heard of this happening? We still have to see the pulmonologist not sure what is going to happen. I am just worried.
<br />
<br />He does not have many symptoms, but the biggest is weight loss. He has always struggled with gaining weight, but he is now losing it. He is almost 15 months and oly 14lbs. He does not have oily poop, but he seams to have mucus in it, some times more than others. He has only had phenomena once at 6weeks old. Then back in February for six weeks he was on three different antibiotics of ear and sinuous infections with a cough the whole time. But other then that has been really healthy.
<br />
<br />I would also like some info on what questions I should be asking the pulmonologist when we go.
<br />
<br />Thanks in advance
<br />
<br />Carolyn
 
H

hmw

New member
I'm so sorry you have this confusion to deal with!
Were both of his sweat tests done at the same lab? Was it a lab affiliated with a CF center? That makes a big difference when it comes to getting reliable results.

The failure to thrive is a serious issue and needs to be addressed; the mucus in stools is of concern too. I'm glad he hasn't had too many resp. illnesses but that can go either way early on for a little one with cf.

I would ask for genetic testing (Ambry Amplified is what you want to ask for- the most comprehensive test out there, not a panel test that only looks for a few mutations.)

In the event the negative test leads the pulm to believe it can't possibly be cf, don't let her push you out the door without explaining thoroughly what she DOES think is going on. You still need answers no matter what is going on, and need that genetic test.

I hope you get the answers you need soon. <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so sorry you have this confusion to deal with!
Were both of his sweat tests done at the same lab? Was it a lab affiliated with a CF center? That makes a big difference when it comes to getting reliable results.

The failure to thrive is a serious issue and needs to be addressed; the mucus in stools is of concern too. I'm glad he hasn't had too many resp. illnesses but that can go either way early on for a little one with cf.

I would ask for genetic testing (Ambry Amplified is what you want to ask for- the most comprehensive test out there, not a panel test that only looks for a few mutations.)

In the event the negative test leads the pulm to believe it can't possibly be cf, don't let her push you out the door without explaining thoroughly what she DOES think is going on. You still need answers no matter what is going on, and need that genetic test.

I hope you get the answers you need soon. <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so sorry you have this confusion to deal with!
Were both of his sweat tests done at the same lab? Was it a lab affiliated with a CF center? That makes a big difference when it comes to getting reliable results.

The failure to thrive is a serious issue and needs to be addressed; the mucus in stools is of concern too. I'm glad he hasn't had too many resp. illnesses but that can go either way early on for a little one with cf.

I would ask for genetic testing (Ambry Amplified is what you want to ask for- the most comprehensive test out there, not a panel test that only looks for a few mutations.)

In the event the negative test leads the pulm to believe it can't possibly be cf, don't let her push you out the door without explaining thoroughly what she DOES think is going on. You still need answers no matter what is going on, and need that genetic test.

I hope you get the answers you need soon. <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so sorry you have this confusion to deal with!
Were both of his sweat tests done at the same lab? Was it a lab affiliated with a CF center? That makes a big difference when it comes to getting reliable results.

The failure to thrive is a serious issue and needs to be addressed; the mucus in stools is of concern too. I'm glad he hasn't had too many resp. illnesses but that can go either way early on for a little one with cf.

I would ask for genetic testing (Ambry Amplified is what you want to ask for- the most comprehensive test out there, not a panel test that only looks for a few mutations.)

In the event the negative test leads the pulm to believe it can't possibly be cf, don't let her push you out the door without explaining thoroughly what she DOES think is going on. You still need answers no matter what is going on, and need that genetic test.

I hope you get the answers you need soon. <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
I'm so sorry you have this confusion to deal with!
<br />Were both of his sweat tests done at the same lab? Was it a lab affiliated with a CF center? That makes a big difference when it comes to getting reliable results.
<br />
<br />The failure to thrive is a serious issue and needs to be addressed; the mucus in stools is of concern too. I'm glad he hasn't had too many resp. illnesses but that can go either way early on for a little one with cf.
<br />
<br />I would ask for genetic testing (Ambry Amplified is what you want to ask for- the most comprehensive test out there, not a panel test that only looks for a few mutations.)
<br />
<br />In the event the negative test leads the pulm to believe it can't possibly be cf, don't let her push you out the door without explaining thoroughly what she DOES think is going on. You still need answers no matter what is going on, and need that genetic test.
<br />
<br />I hope you get the answers you need soon. <img src="i/expressions/rose.gif" border="0">
 
M

mcmommy3

New member
Hello and thank you for the response
Yes both the test were done at the same childrens hospital affiliated with a CF center. The tests results were so different it makes me think there was a mistake some where. I just hate waiting for answers. As we wait to see someone he is just loseing more weight. 2-3 oz a week. It may not seam like much but when your tiny it everything. Sorry for going on and on and thanks for listling
Carolyn
 
M

mcmommy3

New member
Hello and thank you for the response
Yes both the test were done at the same childrens hospital affiliated with a CF center. The tests results were so different it makes me think there was a mistake some where. I just hate waiting for answers. As we wait to see someone he is just loseing more weight. 2-3 oz a week. It may not seam like much but when your tiny it everything. Sorry for going on and on and thanks for listling
Carolyn
 
M

mcmommy3

New member
Hello and thank you for the response
Yes both the test were done at the same childrens hospital affiliated with a CF center. The tests results were so different it makes me think there was a mistake some where. I just hate waiting for answers. As we wait to see someone he is just loseing more weight. 2-3 oz a week. It may not seam like much but when your tiny it everything. Sorry for going on and on and thanks for listling
Carolyn
 
M

mcmommy3

New member
Hello and thank you for the response
Yes both the test were done at the same childrens hospital affiliated with a CF center. The tests results were so different it makes me think there was a mistake some where. I just hate waiting for answers. As we wait to see someone he is just loseing more weight. 2-3 oz a week. It may not seam like much but when your tiny it everything. Sorry for going on and on and thanks for listling
Carolyn
 
M

mcmommy3

New member
Hello and thank you for the response
<br />Yes both the test were done at the same childrens hospital affiliated with a CF center. The tests results were so different it makes me think there was a mistake some where. I just hate waiting for answers. As we wait to see someone he is just loseing more weight. 2-3 oz a week. It may not seam like much but when your tiny it everything. Sorry for going on and on and thanks for listling
<br />Carolyn
 
H

hmw

New member
Oh I completely understand the concerns over weight loss. Growth failure is what led to Emily's cf dx and I know what it's like to see it happen. Just a few ounces a week over time is very serious for a baby and needs to be figured out. The sooner it can be figured out, the sooner it can be addressed, regardless of cause.

I agree, two results that different sound like there might have been an error. It sounds like doing yet another (sigh!!) might be a good idea.
 
H

hmw

New member
Oh I completely understand the concerns over weight loss. Growth failure is what led to Emily's cf dx and I know what it's like to see it happen. Just a few ounces a week over time is very serious for a baby and needs to be figured out. The sooner it can be figured out, the sooner it can be addressed, regardless of cause.

I agree, two results that different sound like there might have been an error. It sounds like doing yet another (sigh!!) might be a good idea.
 
H

hmw

New member
Oh I completely understand the concerns over weight loss. Growth failure is what led to Emily's cf dx and I know what it's like to see it happen. Just a few ounces a week over time is very serious for a baby and needs to be figured out. The sooner it can be figured out, the sooner it can be addressed, regardless of cause.

I agree, two results that different sound like there might have been an error. It sounds like doing yet another (sigh!!) might be a good idea.
 
H

hmw

New member
Oh I completely understand the concerns over weight loss. Growth failure is what led to Emily's cf dx and I know what it's like to see it happen. Just a few ounces a week over time is very serious for a baby and needs to be figured out. The sooner it can be figured out, the sooner it can be addressed, regardless of cause.

I agree, two results that different sound like there might have been an error. It sounds like doing yet another (sigh!!) might be a good idea.
 
H

hmw

New member
Oh I completely understand the concerns over weight loss. Growth failure is what led to Emily's cf dx and I know what it's like to see it happen. Just a few ounces a week over time is very serious for a baby and needs to be figured out. The sooner it can be figured out, the sooner it can be addressed, regardless of cause.
<br />
<br />I agree, two results that different sound like there might have been an error. It sounds like doing yet another (sigh!!) might be a good idea.
 
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