My son had a appointment tomorrow morning with the CF doctor. He was born October 4, 2009 weighing 6 lbs. He was 5lb 4 oz at a week old, at 4 weeks old he was 5lb 8 oz. He was hospitalized for failure to thrive and poor weight gain. They found fat in his stool and low lovels of lipase. They put him on a high calorie diet and did a sweat test. The sweat test came back negative(20). He has very stinky very watery diarrhea. He has very stinky gas and he has reflux. The ped keeps telling me its just cholic. His hgb and hct levels are low. Ive noticed over the past 4 weeks that he is so so sweaty, is this a CF symptom? Poor little guy always has sweaty clammy hands and feet. He cant go any longer than 3 hours without eating, is this normal for kids with CF? My daughter was sleeping through the night and going much longer periods of time between meals than he is. He still seems to be sleeping alot to me. He cant stay awake for more than an hour to an hour and a half at a time before falling asleep. He has also had bronchilitis once already and had to be put on a neb with Xopenex because his cough was so bad. Twice he has had a fever for unknown reasons. They put him on a high calorie diet which did increase his weight alot, he is now in the 17th%. Now hes 14 weeks old and were going to the CF doctor in our area tomorrow. Im so glad were finally going to be able to talk to a CF specialist, but Im also so afraid of the answers I may get. There is no history of CF in my family that I know of. My mother was adopted and knows very little about her family, and I do not know much about my father or his family. My sons father is hispanic, and I have heard it is even less common in haspanics. From his family there are several childhood deaths that were of unknown reasons, but no specific CF history If there is any advice you could give me it would be so greatly appreciated. Ive been told to push for the Ambry blood work but have also been told that its very hard to get insurances to pay for it. Has anyone else run into this problem? I have heard so many people talk about how they had a negative sweat test only to be dx with CF later through bloodwork, the sweat test almost seems like a waste of time to me. I have also heard people say they had a positive blood work and had the sweat test after, is that normal? I know I have tons of questions, any answers would be so helpful. Thanks!!
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
My son has a appointment tomorrow morning at the CF Dr
- Thread starter mama9909
- Start date
My son had a appointment tomorrow morning with the CF doctor. He was born October 4, 2009 weighing 6 lbs. He was 5lb 4 oz at a week old, at 4 weeks old he was 5lb 8 oz. He was hospitalized for failure to thrive and poor weight gain. They found fat in his stool and low lovels of lipase. They put him on a high calorie diet and did a sweat test. The sweat test came back negative(20). He has very stinky very watery diarrhea. He has very stinky gas and he has reflux. The ped keeps telling me its just cholic. His hgb and hct levels are low. Ive noticed over the past 4 weeks that he is so so sweaty, is this a CF symptom? Poor little guy always has sweaty clammy hands and feet. He cant go any longer than 3 hours without eating, is this normal for kids with CF? My daughter was sleeping through the night and going much longer periods of time between meals than he is. He still seems to be sleeping alot to me. He cant stay awake for more than an hour to an hour and a half at a time before falling asleep. He has also had bronchilitis once already and had to be put on a neb with Xopenex because his cough was so bad. Twice he has had a fever for unknown reasons. They put him on a high calorie diet which did increase his weight alot, he is now in the 17th%. Now hes 14 weeks old and were going to the CF doctor in our area tomorrow. Im so glad were finally going to be able to talk to a CF specialist, but Im also so afraid of the answers I may get. There is no history of CF in my family that I know of. My mother was adopted and knows very little about her family, and I do not know much about my father or his family. My sons father is hispanic, and I have heard it is even less common in haspanics. From his family there are several childhood deaths that were of unknown reasons, but no specific CF history If there is any advice you could give me it would be so greatly appreciated. Ive been told to push for the Ambry blood work but have also been told that its very hard to get insurances to pay for it. Has anyone else run into this problem? I have heard so many people talk about how they had a negative sweat test only to be dx with CF later through bloodwork, the sweat test almost seems like a waste of time to me. I have also heard people say they had a positive blood work and had the sweat test after, is that normal? I know I have tons of questions, any answers would be so helpful. Thanks!!
My son had a appointment tomorrow morning with the CF doctor. He was born October 4, 2009 weighing 6 lbs. He was 5lb 4 oz at a week old, at 4 weeks old he was 5lb 8 oz. He was hospitalized for failure to thrive and poor weight gain. They found fat in his stool and low lovels of lipase. They put him on a high calorie diet and did a sweat test. The sweat test came back negative(20). He has very stinky very watery diarrhea. He has very stinky gas and he has reflux. The ped keeps telling me its just cholic. His hgb and hct levels are low. Ive noticed over the past 4 weeks that he is so so sweaty, is this a CF symptom? Poor little guy always has sweaty clammy hands and feet. He cant go any longer than 3 hours without eating, is this normal for kids with CF? My daughter was sleeping through the night and going much longer periods of time between meals than he is. He still seems to be sleeping alot to me. He cant stay awake for more than an hour to an hour and a half at a time before falling asleep. He has also had bronchilitis once already and had to be put on a neb with Xopenex because his cough was so bad. Twice he has had a fever for unknown reasons. They put him on a high calorie diet which did increase his weight alot, he is now in the 17th%. Now hes 14 weeks old and were going to the CF doctor in our area tomorrow. Im so glad were finally going to be able to talk to a CF specialist, but Im also so afraid of the answers I may get. There is no history of CF in my family that I know of. My mother was adopted and knows very little about her family, and I do not know much about my father or his family. My sons father is hispanic, and I have heard it is even less common in haspanics. From his family there are several childhood deaths that were of unknown reasons, but no specific CF history If there is any advice you could give me it would be so greatly appreciated. Ive been told to push for the Ambry blood work but have also been told that its very hard to get insurances to pay for it. Has anyone else run into this problem? I have heard so many people talk about how they had a negative sweat test only to be dx with CF later through bloodwork, the sweat test almost seems like a waste of time to me. I have also heard people say they had a positive blood work and had the sweat test after, is that normal? I know I have tons of questions, any answers would be so helpful. Thanks!!
My son had a appointment tomorrow morning with the CF doctor. He was born October 4, 2009 weighing 6 lbs. He was 5lb 4 oz at a week old, at 4 weeks old he was 5lb 8 oz. He was hospitalized for failure to thrive and poor weight gain. They found fat in his stool and low lovels of lipase. They put him on a high calorie diet and did a sweat test. The sweat test came back negative(20). He has very stinky very watery diarrhea. He has very stinky gas and he has reflux. The ped keeps telling me its just cholic. His hgb and hct levels are low. Ive noticed over the past 4 weeks that he is so so sweaty, is this a CF symptom? Poor little guy always has sweaty clammy hands and feet. He cant go any longer than 3 hours without eating, is this normal for kids with CF? My daughter was sleeping through the night and going much longer periods of time between meals than he is. He still seems to be sleeping alot to me. He cant stay awake for more than an hour to an hour and a half at a time before falling asleep. He has also had bronchilitis once already and had to be put on a neb with Xopenex because his cough was so bad. Twice he has had a fever for unknown reasons. They put him on a high calorie diet which did increase his weight alot, he is now in the 17th%. Now hes 14 weeks old and were going to the CF doctor in our area tomorrow. Im so glad were finally going to be able to talk to a CF specialist, but Im also so afraid of the answers I may get. There is no history of CF in my family that I know of. My mother was adopted and knows very little about her family, and I do not know much about my father or his family. My sons father is hispanic, and I have heard it is even less common in haspanics. From his family there are several childhood deaths that were of unknown reasons, but no specific CF history If there is any advice you could give me it would be so greatly appreciated. Ive been told to push for the Ambry blood work but have also been told that its very hard to get insurances to pay for it. Has anyone else run into this problem? I have heard so many people talk about how they had a negative sweat test only to be dx with CF later through bloodwork, the sweat test almost seems like a waste of time to me. I have also heard people say they had a positive blood work and had the sweat test after, is that normal? I know I have tons of questions, any answers would be so helpful. Thanks!!
My son had a appointment tomorrow morning with the CF doctor. He was born October 4, 2009 weighing 6 lbs. He was 5lb 4 oz at a week old, at 4 weeks old he was 5lb 8 oz. He was hospitalized for failure to thrive and poor weight gain. They found fat in his stool and low lovels of lipase. They put him on a high calorie diet and did a sweat test. The sweat test came back negative(20). He has very stinky very watery diarrhea. He has very stinky gas and he has reflux. The ped keeps telling me its just cholic. His hgb and hct levels are low. Ive noticed over the past 4 weeks that he is so so sweaty, is this a CF symptom? Poor little guy always has sweaty clammy hands and feet. He cant go any longer than 3 hours without eating, is this normal for kids with CF? My daughter was sleeping through the night and going much longer periods of time between meals than he is. He still seems to be sleeping alot to me. He cant stay awake for more than an hour to an hour and a half at a time before falling asleep. He has also had bronchilitis once already and had to be put on a neb with Xopenex because his cough was so bad. Twice he has had a fever for unknown reasons. They put him on a high calorie diet which did increase his weight alot, he is now in the 17th%. Now hes 14 weeks old and were going to the CF doctor in our area tomorrow. Im so glad were finally going to be able to talk to a CF specialist, but Im also so afraid of the answers I may get. There is no history of CF in my family that I know of. My mother was adopted and knows very little about her family, and I do not know much about my father or his family. My sons father is hispanic, and I have heard it is even less common in haspanics. From his family there are several childhood deaths that were of unknown reasons, but no specific CF history If there is any advice you could give me it would be so greatly appreciated. Ive been told to push for the Ambry blood work but have also been told that its very hard to get insurances to pay for it. Has anyone else run into this problem? I have heard so many people talk about how they had a negative sweat test only to be dx with CF later through bloodwork, the sweat test almost seems like a waste of time to me. I have also heard people say they had a positive blood work and had the sweat test after, is that normal? I know I have tons of questions, any answers would be so helpful. Thanks!!
Sorry, I don't have any answers or advice. I just wanted to say taht you seem like you're pretty far ahead of the game...you're very informed and you've already done your homework! Good for you for pushing to find an answer to this so early. (Even though I know it already feels like an eternity with no answers to you!!!)
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Sorry, I don't have any answers or advice. I just wanted to say taht you seem like you're pretty far ahead of the game...you're very informed and you've already done your homework! Good for you for pushing to find an answer to this so early. (Even though I know it already feels like an eternity with no answers to you!!!)
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Sorry, I don't have any answers or advice. I just wanted to say taht you seem like you're pretty far ahead of the game...you're very informed and you've already done your homework! Good for you for pushing to find an answer to this so early. (Even though I know it already feels like an eternity with no answers to you!!!)
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Sorry, I don't have any answers or advice. I just wanted to say taht you seem like you're pretty far ahead of the game...you're very informed and you've already done your homework! Good for you for pushing to find an answer to this so early. (Even though I know it already feels like an eternity with no answers to you!!!)
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
Sorry, I don't have any answers or advice. I just wanted to say taht you seem like you're pretty far ahead of the game...you're very informed and you've already done your homework! Good for you for pushing to find an answer to this so early. (Even though I know it already feels like an eternity with no answers to you!!!)
<br />
<br />Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
<br />
<br />Good luck tomorrow. I hope you get some answers. If it does turn out to be CF, you've found a good resource here. I'll be thinking of you!
M
Mommafirst
Guest
This is such a hard time, the trying to figure it all out. But like Tami said, you are ahead of the game in your education.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
M
Mommafirst
Guest
This is such a hard time, the trying to figure it all out. But like Tami said, you are ahead of the game in your education.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
M
Mommafirst
Guest
This is such a hard time, the trying to figure it all out. But like Tami said, you are ahead of the game in your education.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
M
Mommafirst
Guest
This is such a hard time, the trying to figure it all out. But like Tami said, you are ahead of the game in your education.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
Good luck at the CF center, I hope you get some answers.
M
Mommafirst
Guest
This is such a hard time, the trying to figure it all out. But like Tami said, you are ahead of the game in your education.
<br />
<br />My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
<br />
<br />I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
<br />
<br />Good luck at the CF center, I hope you get some answers.
<br />
<br />My daughter had several sweat tests (1 borderline, the rest not enough sweat) and even after we had a diagnosis through Ambry, we went back and did another sweat test. Our CF docs like to have all that information.
<br />
<br />I would definitely think that with your son's dad being hispanic that you'll need to have Ambry done. Yes, its more rare in hispanic communities, but there are certainly some CF genes specific to hispanics. From all I've read, it isn't a good idea to rule out CF merely based on ethnicity, nationality or race.
<br />
<br />Good luck at the CF center, I hope you get some answers.