sweat test false positive

[Brianne120]

My sons newborn screening came back abnormal/positive for CF. So when he was almost 1 month old he had a sweat test done. It came back on one arm at 102 and on the other arm 98. His pulm doc says he has CF. But every medicine, even the enzymes they put him on my sons body is rejecting. He grunts like hes in pain for hours, vomits and has dark green runny poop from the enzymes. When he passes gas he poops. I told them I am not giving him the enzymes anymore. He was born 7 lbs 15 ounces. and without the enzymes he is now 6 weeks old and weighs 11 pounds 9 ounces. I tried the enzymes for about 5 days.. the doctos said up the dosage of the enzymes, it made it worse. change his formula to pregestimil. My son wont drink..I forced 2 ounces down him and he vomitted it right back up and just screamed and cried the whole time the bottle was in his mouth.. So finally I told them enough is enough.. unless they are going to come to my house and be up with him all night and making him drink something he will not. They said they sent away for <NOBR><A id=FALINK_3_0_2 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">blood work</A></NOBR> but did not specify what kind.. the doctor agreed with me that something isnt right and has called in a gas doctor to check my son out. our appt is on december 28th. So as of now I am having a very had time accepting that my son has CF. He has not one symptom. Im causing him problems by giving him what the doctors ask me to give him. Without it, he is great. not one single sign of CF. I guess my question is has anyone ever been told their child has it and it not be true. False positive newborn screenings, then a false positive sweat test?? I am hoping the <NOBR><A id=FALINK_2_0_1 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">blood test</A></NOBR> can prove to me that their is a mutation there and he has CF. Not that I wanthim to have it, I just want answers! I want a 100 percent yes he has CF or no he doesnt.Also my son is being seen by Arnold Palmer doctors in Orlando Florida and more then one doctor has told me at their practice that they have never ever seen or heard of the enzymes doing this to a child. But I read the side effects on the packages ( because they have tried more than one brand on my son) and side effects are vomiting and diaherra (spelling?).. So if thats the case the docs have never heard or seen this before and they are a special CF practice, I am hoping my son has something else that they no nothing of that isnt a fatal <NOBR><A id=FALINK_1_0_0 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">lung disease</A></NOBR>.

 

[Brianne120]

My sons newborn screening came back abnormal/positive for CF. So when he was almost 1 month old he had a sweat test done. It came back on one arm at 102 and on the other arm 98. His pulm doc says he has CF. But every medicine, even the enzymes they put him on my sons body is rejecting. He grunts like hes in pain for hours, vomits and has dark green runny poop from the enzymes. When he passes gas he poops. I told them I am not giving him the enzymes anymore. He was born 7 lbs 15 ounces. and without the enzymes he is now 6 weeks old and weighs 11 pounds 9 ounces. I tried the enzymes for about 5 days.. the doctos said up the dosage of the enzymes, it made it worse. change his formula to pregestimil. My son wont drink..I forced 2 ounces down him and he vomitted it right back up and just screamed and cried the whole time the bottle was in his mouth.. So finally I told them enough is enough.. unless they are going to come to my house and be up with him all night and making him drink something he will not. They said they sent away for <NOBR><A id=FALINK_3_0_2 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">blood work</A></NOBR> but did not specify what kind.. the doctor agreed with me that something isnt right and has called in a gas doctor to check my son out. our appt is on december 28th. So as of now I am having a very had time accepting that my son has CF. He has not one symptom. Im causing him problems by giving him what the doctors ask me to give him. Without it, he is great. not one single sign of CF. I guess my question is has anyone ever been told their child has it and it not be true. False positive newborn screenings, then a false positive sweat test?? I am hoping the <NOBR><A id=FALINK_2_0_1 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">blood test</A></NOBR> can prove to me that their is a mutation there and he has CF. Not that I wanthim to have it, I just want answers! I want a 100 percent yes he has CF or no he doesnt.Also my son is being seen by Arnold Palmer doctors in Orlando Florida and more then one doctor has told me at their practice that they have never ever seen or heard of the enzymes doing this to a child. But I read the side effects on the packages ( because they have tried more than one brand on my son) and side effects are vomiting and diaherra (spelling?).. So if thats the case the docs have never heard or seen this before and they are a special CF practice, I am hoping my son has something else that they no nothing of that isnt a fatal <NOBR><A id=FALINK_1_0_0 class=FAAdLink href="http://forums.cysticfibrosis.com/messageview.cfm?catid=2964&threadid=613523&enterthread=y#">lung disease</A></NOBR>.

 

[starseeker]

I'm so sorry this is happening to you and your son - it sounds like a very difficult situation and I hope you get some answers soon. I can't help too much, I'm afraid (as I'm pretty new to this myself), but did the doctors do a stool sample (to see if your son was digesting properly by himself)? They shouldn't automatically be giving out enzymes. My three-month-old was diagnosed and he hasn't had a symptom yet, either; he is currently a tubby little thing (pancreatic sufficient).
<br>
<br>Also, I don't know your situation so I hope this isn't too pushy or anything, but if it's possible for you to breastfeed (or get some donated milk), I'd try that. It's very, very easy on a newborn's gut, and even if he can't keep anything else in, he might be able to digest that.

 

[starseeker]

I'm so sorry this is happening to you and your son - it sounds like a very difficult situation and I hope you get some answers soon. I can't help too much, I'm afraid (as I'm pretty new to this myself), but did the doctors do a stool sample (to see if your son was digesting properly by himself)? They shouldn't automatically be giving out enzymes. My three-month-old was diagnosed and he hasn't had a symptom yet, either; he is currently a tubby little thing (pancreatic sufficient).
<br>
<br>Also, I don't know your situation so I hope this isn't too pushy or anything, but if it's possible for you to breastfeed (or get some donated milk), I'd try that. It's very, very easy on a newborn's gut, and even if he can't keep anything else in, he might be able to digest that.

 

[Ratatosk]

DS hated pregistimil as well, so we had him on regular formula. He did tend to have a finicky digestive system -- stooled frequently, had issues with gas, spitting up, constipation, loose stools. I will say that Pregistimil made DS' stools look bright green, just like the color of grass. Could be he needs an acid reducer or a different enzyme.

 

[Ratatosk]

DS hated pregistimil as well, so we had him on regular formula. He did tend to have a finicky digestive system -- stooled frequently, had issues with gas, spitting up, constipation, loose stools. I will say that Pregistimil made DS' stools look bright green, just like the color of grass. Could be he needs an acid reducer or a different enzyme.

 

[imagine04]

Just to tell you -- my son is 14 months old and other then pancreatic insufficiency he has had NOT A SINGLE other "symptom" of CF. You have to remember -- CF is progressive and generally speaking a lot of kiddos (unless born with MI) tend to show no outward signs of CF initially. If you have doubts i'd highly suggest you get genetic testing done to determine his mutations -- your son NEEDS the early care and you can't take chances by limiting care that could be beneficial to his quality and quantity of life because you think the sweat test is false.

 

[imagine04]

Just to tell you -- my son is 14 months old and other then pancreatic insufficiency he has had NOT A SINGLE other "symptom" of CF. You have to remember -- CF is progressive and generally speaking a lot of kiddos (unless born with MI) tend to show no outward signs of CF initially. If you have doubts i'd highly suggest you get genetic testing done to determine his mutations -- your son NEEDS the early care and you can't take chances by limiting care that could be beneficial to his quality and quantity of life because you think the sweat test is false.

 

[searchingforanswers]

Did the Doctor actually check to see whether your son was Pancreatic SUFFICIENT before assuming he needed enzymes? Newborn screenings are a wonderful tool that is helping identify a whole new generation that may not have the "Classic" presentation, it is possible that without a newborn screening your son would have been one of those identified later in life. Right now he doesn't seem to have lung involvement, fantastic but that is common in CF babies and prevention is key. As for digestion, some Cf kids grow up to be CF adults who still don't need enzymes, others end up needing enzymes at birth(but may or may not have lung issues at that age), and some need them a few years down the road. I pray that your son never needs enzymes and that his lungs stay in good shape for a very long time but CF is a progressive condition and no two patients are identical. Have your doctor look into "atypical" CF but please don't make the mistake of assuming infant health means "mild". Don't take a chance on his lungs. Good Luck

SFA

 

[searchingforanswers]

Did the Doctor actually check to see whether your son was Pancreatic SUFFICIENT before assuming he needed enzymes? Newborn screenings are a wonderful tool that is helping identify a whole new generation that may not have the "Classic" presentation, it is possible that without a newborn screening your son would have been one of those identified later in life. Right now he doesn't seem to have lung involvement, fantastic but that is common in CF babies and prevention is key. As for digestion, some Cf kids grow up to be CF adults who still don't need enzymes, others end up needing enzymes at birth(but may or may not have lung issues at that age), and some need them a few years down the road. I pray that your son never needs enzymes and that his lungs stay in good shape for a very long time but CF is a progressive condition and no two patients are identical. Have your doctor look into "atypical" CF but please don't make the mistake of assuming infant health means "mild". Don't take a chance on his lungs. Good Luck

SFA

 

[SarahProcter]

Chiming in to echo what Jeanne said - my daughter is 3 years old and has had zero symptoms ever from CF, but she definitely has it, as confirmed by genetic analysis. My daughter doesn't need enzymes, she is pancreatic sufficient. Did they test your child's fecal elastase levels?

 

[SarahProcter]

Chiming in to echo what Jeanne said - my daughter is 3 years old and has had zero symptoms ever from CF, but she definitely has it, as confirmed by genetic analysis. My daughter doesn't need enzymes, she is pancreatic sufficient. Did they test your child's fecal elastase levels?

 

[bak368]

Just found out my 6 year old son has positive sweat test. We had him gentically tested and was told he did not have Cf was just a carrier. My daughter was diagnosed with CF at the age of 8. But my son has had so many issues since birth. He had blue spells, choking on bottles, reflux, hydronophrosis of the kidneys, and an aerotic compression (vascular sling) So I always suspected he may have disease. But now I am angry because I was so reassured by Genetics numerous times he doesn't have it and now he does. Why so contradictory, do I trust test?? Any response will help.
mom w CF 8 yr old daughter and 6 yrs old son Delta and T5

 

[bak368]

Just found out my 6 year old son has positive sweat test. We had him gentically tested and was told he did not have Cf was just a carrier. My daughter was diagnosed with CF at the age of 8. But my son has had so many issues since birth. He had blue spells, choking on bottles, reflux, hydronophrosis of the kidneys, and an aerotic compression (vascular sling) So I always suspected he may have disease. But now I am angry because I was so reassured by Genetics numerous times he doesn't have it and now he does. Why so contradictory, do I trust test?? Any response will help.
mom w CF 8 yr old daughter and 6 yrs old son Delta and T5

 

[Anomie]

My daughter had a true positive and then a false negative on her newborn screening. She was always in the 90 percentile for height and weight but then dropped off shortly before her diagnosis and is now considered to be very pancreatic insufficient. Some people have cf without the g.i. issues and I'm wondering if this is the case with your son. My daughter did not start coughing or showing lung symptoms until she was 3 and did not start failing to thrive until she was almost 4. Some doctors don't reccomend giving them any medications until they start to show symptoms. You should definitely ask to have his pancreas function checked. He shouldn't be taking enzymes if his body is producing its own enzymes. Also make sure to take him to an accredited CF center since doctors are still learning about the various ways this disease affects different people and non-CF doctors don't seem to know as much about this disease as one hopes they would. Also some people can have a genetic make-up that cause them to have CF while only carrying one genetic mutation. Its known as Atypical CF. Hope this helps!

 

[Anomie]

My daughter had a true positive and then a false negative on her newborn screening. She was always in the 90 percentile for height and weight but then dropped off shortly before her diagnosis and is now considered to be very pancreatic insufficient. Some people have cf without the g.i. issues and I'm wondering if this is the case with your son. My daughter did not start coughing or showing lung symptoms until she was 3 and did not start failing to thrive until she was almost 4. Some doctors don't reccomend giving them any medications until they start to show symptoms. You should definitely ask to have his pancreas function checked. He shouldn't be taking enzymes if his body is producing its own enzymes. Also make sure to take him to an accredited CF center since doctors are still learning about the various ways this disease affects different people and non-CF doctors don't seem to know as much about this disease as one hopes they would. Also some people can have a genetic make-up that cause them to have CF while only carrying one genetic mutation. Its known as Atypical CF. Hope this helps!

 

[albino15]

I didn't even know you could be pancreatic SUFFICIENT until I visited this site a few years ago. I was diagnosed because of G.I. problems, no lung involvement.

 

[albino15]

I didn't even know you could be pancreatic SUFFICIENT until I visited this site a few years ago. I was diagnosed because of G.I. problems, no lung involvement.

 

[Anomie]

My daughter wasn't on enzymes until she was 4 due to her mis-diagnosis but OMG she had to eat so much to maintain. I'm talking bigger portions than a human adult. She's doing much better now that she's being treated for CF but I just don't understand why if her new born screening yielded one positive and one negative result, they didn't do a tie breaker or even notify us. Her doctor thinks it might have to do with modifier genes but who knows. Could have just been a screw up down at the lab.

 

[Anomie]

My daughter wasn't on enzymes until she was 4 due to her mis-diagnosis but OMG she had to eat so much to maintain. I'm talking bigger portions than a human adult. She's doing much better now that she's being treated for CF but I just don't understand why if her new born screening yielded one positive and one negative result, they didn't do a tie breaker or even notify us. Her doctor thinks it might have to do with modifier genes but who knows. Could have just been a screw up down at the lab.