What's lowest sweat test result,but was still DX w/CF thru genetic testing

AlexsMom

New member
Anyone have low numbers on sweat test and then show postive for CF w/genetic testing? What's the lowest you have any knowledge of ? My baby has all classic symptoms, but mucous in her chest did not culture any bacteria and her sweats were LOW 7 & 8- Pulmo doc.won't run full Ambry- They are sending me next after the GI Doc, to an Immunologist thinking it's maybe auto-immune,then to a neurologist-baby stilll sick- EVERY morning 2 brthng.treatmnts. to open lungs and for her to cough 3-4 hours to clear mucous out-been doing this literally every day since May and in hospital because she can't breathe on her own and they just don't know why-chronic head congestion, has lost weight, oily, foul, and now mucous filled stools. Anybody got some low numbers on sweat test?
 

AlexsMom

New member
Anyone have low numbers on sweat test and then show postive for CF w/genetic testing? What's the lowest you have any knowledge of ? My baby has all classic symptoms, but mucous in her chest did not culture any bacteria and her sweats were LOW 7 & 8- Pulmo doc.won't run full Ambry- They are sending me next after the GI Doc, to an Immunologist thinking it's maybe auto-immune,then to a neurologist-baby stilll sick- EVERY morning 2 brthng.treatmnts. to open lungs and for her to cough 3-4 hours to clear mucous out-been doing this literally every day since May and in hospital because she can't breathe on her own and they just don't know why-chronic head congestion, has lost weight, oily, foul, and now mucous filled stools. Anybody got some low numbers on sweat test?
 

AlexsMom

New member
Anyone have low numbers on sweat test and then show postive for CF w/genetic testing? What's the lowest you have any knowledge of ? My baby has all classic symptoms, but mucous in her chest did not culture any bacteria and her sweats were LOW 7 & 8- Pulmo doc.won't run full Ambry- They are sending me next after the GI Doc, to an Immunologist thinking it's maybe auto-immune,then to a neurologist-baby stilll sick- EVERY morning 2 brthng.treatmnts. to open lungs and for her to cough 3-4 hours to clear mucous out-been doing this literally every day since May and in hospital because she can't breathe on her own and they just don't know why-chronic head congestion, has lost weight, oily, foul, and now mucous filled stools. Anybody got some low numbers on sweat test?
 

AlexsMom

New member
Anyone have low numbers on sweat test and then show postive for CF w/genetic testing? What's the lowest you have any knowledge of ? My baby has all classic symptoms, but mucous in her chest did not culture any bacteria and her sweats were LOW 7 & 8- Pulmo doc.won't run full Ambry- They are sending me next after the GI Doc, to an Immunologist thinking it's maybe auto-immune,then to a neurologist-baby stilll sick- EVERY morning 2 brthng.treatmnts. to open lungs and for her to cough 3-4 hours to clear mucous out-been doing this literally every day since May and in hospital because she can't breathe on her own and they just don't know why-chronic head congestion, has lost weight, oily, foul, and now mucous filled stools. Anybody got some low numbers on sweat test?
 

AlexsMom

New member
Anyone have low numbers on sweat test and then show postive for CF w/genetic testing? What's the lowest you have any knowledge of ? My baby has all classic symptoms, but mucous in her chest did not culture any bacteria and her sweats were LOW 7 & 8- Pulmo doc.won't run full Ambry- They are sending me next after the GI Doc, to an Immunologist thinking it's maybe auto-immune,then to a neurologist-baby stilll sick- EVERY morning 2 brthng.treatmnts. to open lungs and for her to cough 3-4 hours to clear mucous out-been doing this literally every day since May and in hospital because she can't breathe on her own and they just don't know why-chronic head congestion, has lost weight, oily, foul, and now mucous filled stools. Anybody got some low numbers on sweat test?
 

jdprecious

New member
what do you mean the doc wont do a full ambry???? i didnt know they could deny that kind of thing if you ask or DEMAND it. i would find a new doc. and from the symptoms you have described those are classic cf. i would pursue a new doc or get frisky with the one that wont comply with your request for a full panel test.

i hope you get some answers, and quickly!!!
 

jdprecious

New member
what do you mean the doc wont do a full ambry???? i didnt know they could deny that kind of thing if you ask or DEMAND it. i would find a new doc. and from the symptoms you have described those are classic cf. i would pursue a new doc or get frisky with the one that wont comply with your request for a full panel test.

i hope you get some answers, and quickly!!!
 

jdprecious

New member
what do you mean the doc wont do a full ambry???? i didnt know they could deny that kind of thing if you ask or DEMAND it. i would find a new doc. and from the symptoms you have described those are classic cf. i would pursue a new doc or get frisky with the one that wont comply with your request for a full panel test.

i hope you get some answers, and quickly!!!
 

jdprecious

New member
what do you mean the doc wont do a full ambry???? i didnt know they could deny that kind of thing if you ask or DEMAND it. i would find a new doc. and from the symptoms you have described those are classic cf. i would pursue a new doc or get frisky with the one that wont comply with your request for a full panel test.

i hope you get some answers, and quickly!!!
 

jdprecious

New member
what do you mean the doc wont do a full ambry???? i didnt know they could deny that kind of thing if you ask or DEMAND it. i would find a new doc. and from the symptoms you have described those are classic cf. i would pursue a new doc or get frisky with the one that wont comply with your request for a full panel test.

i hope you get some answers, and quickly!!!
 

momja

New member
I don't have sweat test numbers but I just want to give you my support. I'm going through an ordeal with my 15 month old as well. Right now more digestive than respiratory.

He's had 3 failed sweat tests and a negative 70-mutation test. I requested the full panel as well and was pretty much told it was not needed and they would follow up with another sweat test to see if they needed to do further testing (which failed). I've just been left wondering what's going on.

How much does she weigh? My son is 18 lbs 15 oz. He was 8 lbs 14 oz. when he was born. He has coughing up mucous spells and really bad stools with very little weight gain.

I cringe when I see everything you're going through. I know that will be our route too. I'm getting a second opinion next week with a different Ped.
I will be following your thread. I hope you find out what's wrong. I wonder if in your case a chest x-ray might reveal something.
 

momja

New member
I don't have sweat test numbers but I just want to give you my support. I'm going through an ordeal with my 15 month old as well. Right now more digestive than respiratory.

He's had 3 failed sweat tests and a negative 70-mutation test. I requested the full panel as well and was pretty much told it was not needed and they would follow up with another sweat test to see if they needed to do further testing (which failed). I've just been left wondering what's going on.

How much does she weigh? My son is 18 lbs 15 oz. He was 8 lbs 14 oz. when he was born. He has coughing up mucous spells and really bad stools with very little weight gain.

I cringe when I see everything you're going through. I know that will be our route too. I'm getting a second opinion next week with a different Ped.
I will be following your thread. I hope you find out what's wrong. I wonder if in your case a chest x-ray might reveal something.
 

momja

New member
I don't have sweat test numbers but I just want to give you my support. I'm going through an ordeal with my 15 month old as well. Right now more digestive than respiratory.

He's had 3 failed sweat tests and a negative 70-mutation test. I requested the full panel as well and was pretty much told it was not needed and they would follow up with another sweat test to see if they needed to do further testing (which failed). I've just been left wondering what's going on.

How much does she weigh? My son is 18 lbs 15 oz. He was 8 lbs 14 oz. when he was born. He has coughing up mucous spells and really bad stools with very little weight gain.

I cringe when I see everything you're going through. I know that will be our route too. I'm getting a second opinion next week with a different Ped.
I will be following your thread. I hope you find out what's wrong. I wonder if in your case a chest x-ray might reveal something.
 

momja

New member
I don't have sweat test numbers but I just want to give you my support. I'm going through an ordeal with my 15 month old as well. Right now more digestive than respiratory.

He's had 3 failed sweat tests and a negative 70-mutation test. I requested the full panel as well and was pretty much told it was not needed and they would follow up with another sweat test to see if they needed to do further testing (which failed). I've just been left wondering what's going on.

How much does she weigh? My son is 18 lbs 15 oz. He was 8 lbs 14 oz. when he was born. He has coughing up mucous spells and really bad stools with very little weight gain.

I cringe when I see everything you're going through. I know that will be our route too. I'm getting a second opinion next week with a different Ped.
I will be following your thread. I hope you find out what's wrong. I wonder if in your case a chest x-ray might reveal something.
 

momja

New member
I don't have sweat test numbers but I just want to give you my support. I'm going through an ordeal with my 15 month old as well. Right now more digestive than respiratory.

He's had 3 failed sweat tests and a negative 70-mutation test. I requested the full panel as well and was pretty much told it was not needed and they would follow up with another sweat test to see if they needed to do further testing (which failed). I've just been left wondering what's going on.

How much does she weigh? My son is 18 lbs 15 oz. He was 8 lbs 14 oz. when he was born. He has coughing up mucous spells and really bad stools with very little weight gain.

I cringe when I see everything you're going through. I know that will be our route too. I'm getting a second opinion next week with a different Ped.
I will be following your thread. I hope you find out what's wrong. I wonder if in your case a chest x-ray might reveal something.
 

AlexsMom

New member
5 chest x -rays since May-and a chest CT, which all show the same thing-chronic atelectasis,basically small portions of collapsed lung-Thank God your little one coughs his stuff up on his own- mine/hers is stuck -she can't get it out w/out her neubs.(brthng.trtmnts.)
 

AlexsMom

New member
5 chest x -rays since May-and a chest CT, which all show the same thing-chronic atelectasis,basically small portions of collapsed lung-Thank God your little one coughs his stuff up on his own- mine/hers is stuck -she can't get it out w/out her neubs.(brthng.trtmnts.)
 

AlexsMom

New member
5 chest x -rays since May-and a chest CT, which all show the same thing-chronic atelectasis,basically small portions of collapsed lung-Thank God your little one coughs his stuff up on his own- mine/hers is stuck -she can't get it out w/out her neubs.(brthng.trtmnts.)
 

AlexsMom

New member
5 chest x -rays since May-and a chest CT, which all show the same thing-chronic atelectasis,basically small portions of collapsed lung-Thank God your little one coughs his stuff up on his own- mine/hers is stuck -she can't get it out w/out her neubs.(brthng.trtmnts.)
 

AlexsMom

New member
5 chest x -rays since May-and a chest CT, which all show the same thing-chronic atelectasis,basically small portions of collapsed lung-Thank God your little one coughs his stuff up on his own- mine/hers is stuck -she can't get it out w/out her neubs.(brthng.trtmnts.)
 
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