My son was born normally at 41 weeks. He was 7lbs. 11ozs. at birth. He was generally a healthy baby. He gained weight steadily and was 10lbs. 8 ozs at 6 weeks old. He was hospitalized overnight for reflux in December at 3 months old. He was doing fine and went to the doctor's office for a cough and they weighed him he was 10 lbs 5 ozs. So the doctor ordered a sweat test. I was called and told his sweat test came back positive at 62 but the doctor wanted a second opinion and sent us to Children's Hospital in Pittsburgh. He was admitted for 24 hour observation a week ago. They've done several tests including liver function which came back slightly elevated, 72 hour fecal fat which we are awaiting results of, a biopsy of the small intestine ( to test for celiac diease), and so much blood work. He still hasn't gained weight despite eating 4 ozs every 2 hours. They did a second sweat test which at first they said was negative but then came back and said they couldn't get enough sweat. He is constipated and has always had issues with that. He does SMELL like poop (like another poster said) and has a balloon belly. They don't want to another sweat test. They want us to stay in the hospital another 2 weeks until genetic tests return. I don't understand why they won't do sweat test!! We've been here a week already ( I'm typing on a laptop in the room) Does it sound like CF to you guys?
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5 month old in hospital
- Thread starter everly25
- Start date
My son was born normally at 41 weeks. He was 7lbs. 11ozs. at birth. He was generally a healthy baby. He gained weight steadily and was 10lbs. 8 ozs at 6 weeks old. He was hospitalized overnight for reflux in December at 3 months old. He was doing fine and went to the doctor's office for a cough and they weighed him he was 10 lbs 5 ozs. So the doctor ordered a sweat test. I was called and told his sweat test came back positive at 62 but the doctor wanted a second opinion and sent us to Children's Hospital in Pittsburgh. He was admitted for 24 hour observation a week ago. They've done several tests including liver function which came back slightly elevated, 72 hour fecal fat which we are awaiting results of, a biopsy of the small intestine ( to test for celiac diease), and so much blood work. He still hasn't gained weight despite eating 4 ozs every 2 hours. They did a second sweat test which at first they said was negative but then came back and said they couldn't get enough sweat. He is constipated and has always had issues with that. He does SMELL like poop (like another poster said) and has a balloon belly. They don't want to another sweat test. They want us to stay in the hospital another 2 weeks until genetic tests return. I don't understand why they won't do sweat test!! We've been here a week already ( I'm typing on a laptop in the room) Does it sound like CF to you guys?
My son was born normally at 41 weeks. He was 7lbs. 11ozs. at birth. He was generally a healthy baby. He gained weight steadily and was 10lbs. 8 ozs at 6 weeks old. He was hospitalized overnight for reflux in December at 3 months old. He was doing fine and went to the doctor's office for a cough and they weighed him he was 10 lbs 5 ozs. So the doctor ordered a sweat test. I was called and told his sweat test came back positive at 62 but the doctor wanted a second opinion and sent us to Children's Hospital in Pittsburgh. He was admitted for 24 hour observation a week ago. They've done several tests including liver function which came back slightly elevated, 72 hour fecal fat which we are awaiting results of, a biopsy of the small intestine ( to test for celiac diease), and so much blood work. He still hasn't gained weight despite eating 4 ozs every 2 hours. They did a second sweat test which at first they said was negative but then came back and said they couldn't get enough sweat. He is constipated and has always had issues with that. He does SMELL like poop (like another poster said) and has a balloon belly. They don't want to another sweat test. They want us to stay in the hospital another 2 weeks until genetic tests return. I don't understand why they won't do sweat test!! We've been here a week already ( I'm typing on a laptop in the room) Does it sound like CF to you guys?
Emily65Roses
New member
Sweat tests are unreliable. If they want to find out if he has CF, have them do a GENETIC BLOOD test. A lot more reliable. And the "basic" CF gene test only covers about 30 genes. There are more than 1,000. So be sure to ask for something more advanced than the basic test. There's another one that tests for 80-90, so that's a good place to start. If that comes back negative, you'll want to look at a full panel. That'll test for every mutation they know exists. The problem with that is insurance will FIGHT paying for it because it's expensive. So that one should be kept as a last resort.
Having said that, it sounds like it could be CF, yes. It's possible. Tell them to stop d*cking around with the sweat tests, they are VERY unreliable. People on this site have had multiple false negatives, only to find out later that they did have CF (via genetic blood test).
Having said that, it sounds like it could be CF, yes. It's possible. Tell them to stop d*cking around with the sweat tests, they are VERY unreliable. People on this site have had multiple false negatives, only to find out later that they did have CF (via genetic blood test).
Emily65Roses
New member
Sweat tests are unreliable. If they want to find out if he has CF, have them do a GENETIC BLOOD test. A lot more reliable. And the "basic" CF gene test only covers about 30 genes. There are more than 1,000. So be sure to ask for something more advanced than the basic test. There's another one that tests for 80-90, so that's a good place to start. If that comes back negative, you'll want to look at a full panel. That'll test for every mutation they know exists. The problem with that is insurance will FIGHT paying for it because it's expensive. So that one should be kept as a last resort.
Having said that, it sounds like it could be CF, yes. It's possible. Tell them to stop d*cking around with the sweat tests, they are VERY unreliable. People on this site have had multiple false negatives, only to find out later that they did have CF (via genetic blood test).
Having said that, it sounds like it could be CF, yes. It's possible. Tell them to stop d*cking around with the sweat tests, they are VERY unreliable. People on this site have had multiple false negatives, only to find out later that they did have CF (via genetic blood test).
Emily65Roses
New member
Sweat tests are unreliable. If they want to find out if he has CF, have them do a GENETIC BLOOD test. A lot more reliable. And the "basic" CF gene test only covers about 30 genes. There are more than 1,000. So be sure to ask for something more advanced than the basic test. There's another one that tests for 80-90, so that's a good place to start. If that comes back negative, you'll want to look at a full panel. That'll test for every mutation they know exists. The problem with that is insurance will FIGHT paying for it because it's expensive. So that one should be kept as a last resort.
Having said that, it sounds like it could be CF, yes. It's possible. Tell them to stop d*cking around with the sweat tests, they are VERY unreliable. People on this site have had multiple false negatives, only to find out later that they did have CF (via genetic blood test).
Having said that, it sounds like it could be CF, yes. It's possible. Tell them to stop d*cking around with the sweat tests, they are VERY unreliable. People on this site have had multiple false negatives, only to find out later that they did have CF (via genetic blood test).
S
sdelorenzo
Guest
Welcome. It does sound like there is a good chance that your son has cf based on all of the symptoms you described. It is a good idea that you were transferred to Children's hospital where they have a cf center. I just checked on cff.org to make sure you were at a cf center. I also noticed that David Orenstein is the cf center director. He is a well known doctor and wrote a really good book on cf. If I were you, I would ask that he be the pulmonary dr for your son. Having a good doctor makes a big difference.
Why do they want your son to stay in the hospital for two weeks while you are waiting on the genetic testing? I am guessing they are pretty concerned about his weight? Are they giving your son pancreatic enzymes to help him gain weight? It won't hurt him if he ends up not having cf. But it should help him gain some much needed weight if he is pancreatic insufficent. Not sure what it would hurt to try for another sweat test. Do you know if they were testing for the most common 30 genes or an extended panel?
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Why do they want your son to stay in the hospital for two weeks while you are waiting on the genetic testing? I am guessing they are pretty concerned about his weight? Are they giving your son pancreatic enzymes to help him gain weight? It won't hurt him if he ends up not having cf. But it should help him gain some much needed weight if he is pancreatic insufficent. Not sure what it would hurt to try for another sweat test. Do you know if they were testing for the most common 30 genes or an extended panel?
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Welcome. It does sound like there is a good chance that your son has cf based on all of the symptoms you described. It is a good idea that you were transferred to Children's hospital where they have a cf center. I just checked on cff.org to make sure you were at a cf center. I also noticed that David Orenstein is the cf center director. He is a well known doctor and wrote a really good book on cf. If I were you, I would ask that he be the pulmonary dr for your son. Having a good doctor makes a big difference.
Why do they want your son to stay in the hospital for two weeks while you are waiting on the genetic testing? I am guessing they are pretty concerned about his weight? Are they giving your son pancreatic enzymes to help him gain weight? It won't hurt him if he ends up not having cf. But it should help him gain some much needed weight if he is pancreatic insufficent. Not sure what it would hurt to try for another sweat test. Do you know if they were testing for the most common 30 genes or an extended panel?
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Why do they want your son to stay in the hospital for two weeks while you are waiting on the genetic testing? I am guessing they are pretty concerned about his weight? Are they giving your son pancreatic enzymes to help him gain weight? It won't hurt him if he ends up not having cf. But it should help him gain some much needed weight if he is pancreatic insufficent. Not sure what it would hurt to try for another sweat test. Do you know if they were testing for the most common 30 genes or an extended panel?
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
S
sdelorenzo
Guest
Welcome. It does sound like there is a good chance that your son has cf based on all of the symptoms you described. It is a good idea that you were transferred to Children's hospital where they have a cf center. I just checked on cff.org to make sure you were at a cf center. I also noticed that David Orenstein is the cf center director. He is a well known doctor and wrote a really good book on cf. If I were you, I would ask that he be the pulmonary dr for your son. Having a good doctor makes a big difference.
Why do they want your son to stay in the hospital for two weeks while you are waiting on the genetic testing? I am guessing they are pretty concerned about his weight? Are they giving your son pancreatic enzymes to help him gain weight? It won't hurt him if he ends up not having cf. But it should help him gain some much needed weight if he is pancreatic insufficent. Not sure what it would hurt to try for another sweat test. Do you know if they were testing for the most common 30 genes or an extended panel?
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
Why do they want your son to stay in the hospital for two weeks while you are waiting on the genetic testing? I am guessing they are pretty concerned about his weight? Are they giving your son pancreatic enzymes to help him gain weight? It won't hurt him if he ends up not having cf. But it should help him gain some much needed weight if he is pancreatic insufficent. Not sure what it would hurt to try for another sweat test. Do you know if they were testing for the most common 30 genes or an extended panel?
Sharon, mom of Sophia, 5 and Jack, 3 both with cf