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I have so many questions, can you help?

asiewny

New member
My 9 Year old son just recieved a sweat test of 51 and 57 and the Dr. has ordered genetic testing for cystic fibrosis. My DS was referred to a pediatric endocrinologist for short stature. He will be 10 next month and weighs between 47-49 lbs and is only 49 inches tall. He used to hover around the 10th pecentile in the growth chart but has fallen below the 3rd over the past 2 years. I initially thought the sweat test was a joke because I was thinking CF only involved the lungs but when the sweat test results came back I did a little research on the internet. He has so many of the digestive issues it is scary and he has had them since he was a baby. I remember him simultaneously having awful diarhea when he ate, so bad it would make his bottom raw. Then he started getting extremely constipated, I remember blood in his diaper (the dr. said rectal fissures) and a number of times going to the ER because we thought he had appendicitis or a bowel obstruction. He eventually got diagnosed with mild autism and adhd and takes medications for that and his slow growth was at first attributed to the stimulant meds. But he eats like a horse and seems famished a lot and one of his Dr.'s suspects he is hypoglycemic.
Anyway, I just wanted to know if any of you know how often sweat tests of close to the "60" mark turn out to actually be CF. I have read so many posts where sweat tests were actually lower than my son's and they have CF with numbers in the low 50's and 40's. If something else was causing his test to be close to 60, what else would do it? I wouldn't think that something else would cause the number to be so close to 60. I read that malnutrition can cause bordrline results, but what else could cause malnutrition in a child with a hefty appetite other than CF?
I guess I just want to prepare myself. The more I read, I think I will be shocked if he doesn't turn out to have CF. Everyone keeps telling me not to worry, but I know that something is wrong. What else could it be? I appreciate any advice you could give me on the sweat test results. Thanks for your support.
 

asiewny

New member
My 9 Year old son just recieved a sweat test of 51 and 57 and the Dr. has ordered genetic testing for cystic fibrosis. My DS was referred to a pediatric endocrinologist for short stature. He will be 10 next month and weighs between 47-49 lbs and is only 49 inches tall. He used to hover around the 10th pecentile in the growth chart but has fallen below the 3rd over the past 2 years. I initially thought the sweat test was a joke because I was thinking CF only involved the lungs but when the sweat test results came back I did a little research on the internet. He has so many of the digestive issues it is scary and he has had them since he was a baby. I remember him simultaneously having awful diarhea when he ate, so bad it would make his bottom raw. Then he started getting extremely constipated, I remember blood in his diaper (the dr. said rectal fissures) and a number of times going to the ER because we thought he had appendicitis or a bowel obstruction. He eventually got diagnosed with mild autism and adhd and takes medications for that and his slow growth was at first attributed to the stimulant meds. But he eats like a horse and seems famished a lot and one of his Dr.'s suspects he is hypoglycemic.
Anyway, I just wanted to know if any of you know how often sweat tests of close to the "60" mark turn out to actually be CF. I have read so many posts where sweat tests were actually lower than my son's and they have CF with numbers in the low 50's and 40's. If something else was causing his test to be close to 60, what else would do it? I wouldn't think that something else would cause the number to be so close to 60. I read that malnutrition can cause bordrline results, but what else could cause malnutrition in a child with a hefty appetite other than CF?
I guess I just want to prepare myself. The more I read, I think I will be shocked if he doesn't turn out to have CF. Everyone keeps telling me not to worry, but I know that something is wrong. What else could it be? I appreciate any advice you could give me on the sweat test results. Thanks for your support.
 

asiewny

New member
My 9 Year old son just recieved a sweat test of 51 and 57 and the Dr. has ordered genetic testing for cystic fibrosis. My DS was referred to a pediatric endocrinologist for short stature. He will be 10 next month and weighs between 47-49 lbs and is only 49 inches tall. He used to hover around the 10th pecentile in the growth chart but has fallen below the 3rd over the past 2 years. I initially thought the sweat test was a joke because I was thinking CF only involved the lungs but when the sweat test results came back I did a little research on the internet. He has so many of the digestive issues it is scary and he has had them since he was a baby. I remember him simultaneously having awful diarhea when he ate, so bad it would make his bottom raw. Then he started getting extremely constipated, I remember blood in his diaper (the dr. said rectal fissures) and a number of times going to the ER because we thought he had appendicitis or a bowel obstruction. He eventually got diagnosed with mild autism and adhd and takes medications for that and his slow growth was at first attributed to the stimulant meds. But he eats like a horse and seems famished a lot and one of his Dr.'s suspects he is hypoglycemic.
Anyway, I just wanted to know if any of you know how often sweat tests of close to the "60" mark turn out to actually be CF. I have read so many posts where sweat tests were actually lower than my son's and they have CF with numbers in the low 50's and 40's. If something else was causing his test to be close to 60, what else would do it? I wouldn't think that something else would cause the number to be so close to 60. I read that malnutrition can cause bordrline results, but what else could cause malnutrition in a child with a hefty appetite other than CF?
I guess I just want to prepare myself. The more I read, I think I will be shocked if he doesn't turn out to have CF. Everyone keeps telling me not to worry, but I know that something is wrong. What else could it be? I appreciate any advice you could give me on the sweat test results. Thanks for your support.
 

asiewny

New member
My 9 Year old son just recieved a sweat test of 51 and 57 and the Dr. has ordered genetic testing for cystic fibrosis. My DS was referred to a pediatric endocrinologist for short stature. He will be 10 next month and weighs between 47-49 lbs and is only 49 inches tall. He used to hover around the 10th pecentile in the growth chart but has fallen below the 3rd over the past 2 years. I initially thought the sweat test was a joke because I was thinking CF only involved the lungs but when the sweat test results came back I did a little research on the internet. He has so many of the digestive issues it is scary and he has had them since he was a baby. I remember him simultaneously having awful diarhea when he ate, so bad it would make his bottom raw. Then he started getting extremely constipated, I remember blood in his diaper (the dr. said rectal fissures) and a number of times going to the ER because we thought he had appendicitis or a bowel obstruction. He eventually got diagnosed with mild autism and adhd and takes medications for that and his slow growth was at first attributed to the stimulant meds. But he eats like a horse and seems famished a lot and one of his Dr.'s suspects he is hypoglycemic.
Anyway, I just wanted to know if any of you know how often sweat tests of close to the "60" mark turn out to actually be CF. I have read so many posts where sweat tests were actually lower than my son's and they have CF with numbers in the low 50's and 40's. If something else was causing his test to be close to 60, what else would do it? I wouldn't think that something else would cause the number to be so close to 60. I read that malnutrition can cause bordrline results, but what else could cause malnutrition in a child with a hefty appetite other than CF?
I guess I just want to prepare myself. The more I read, I think I will be shocked if he doesn't turn out to have CF. Everyone keeps telling me not to worry, but I know that something is wrong. What else could it be? I appreciate any advice you could give me on the sweat test results. Thanks for your support.
 

asiewny

New member
My 9 Year old son just recieved a sweat test of 51 and 57 and the Dr. has ordered genetic testing for cystic fibrosis. My DS was referred to a pediatric endocrinologist for short stature. He will be 10 next month and weighs between 47-49 lbs and is only 49 inches tall. He used to hover around the 10th pecentile in the growth chart but has fallen below the 3rd over the past 2 years. I initially thought the sweat test was a joke because I was thinking CF only involved the lungs but when the sweat test results came back I did a little research on the internet. He has so many of the digestive issues it is scary and he has had them since he was a baby. I remember him simultaneously having awful diarhea when he ate, so bad it would make his bottom raw. Then he started getting extremely constipated, I remember blood in his diaper (the dr. said rectal fissures) and a number of times going to the ER because we thought he had appendicitis or a bowel obstruction. He eventually got diagnosed with mild autism and adhd and takes medications for that and his slow growth was at first attributed to the stimulant meds. But he eats like a horse and seems famished a lot and one of his Dr.'s suspects he is hypoglycemic.
<br />Anyway, I just wanted to know if any of you know how often sweat tests of close to the "60" mark turn out to actually be CF. I have read so many posts where sweat tests were actually lower than my son's and they have CF with numbers in the low 50's and 40's. If something else was causing his test to be close to 60, what else would do it? I wouldn't think that something else would cause the number to be so close to 60. I read that malnutrition can cause bordrline results, but what else could cause malnutrition in a child with a hefty appetite other than CF?
<br />I guess I just want to prepare myself. The more I read, I think I will be shocked if he doesn't turn out to have CF. Everyone keeps telling me not to worry, but I know that something is wrong. What else could it be? I appreciate any advice you could give me on the sweat test results. Thanks for your support.
 

JazzysMom

New member
I hate to take away any hope you have, but the descriptions you gave sure sounds like CF. Given the # on the sweat test I would have to say it is. If the # was a bit lower it would be easier to question it.

The only other thing besides celiac that comes to mind is Schwachman Syndrom. It has similiar digestive issues CF, but the score on the sweat test leans more towards CF.

Please let us know what happens!
 

JazzysMom

New member
I hate to take away any hope you have, but the descriptions you gave sure sounds like CF. Given the # on the sweat test I would have to say it is. If the # was a bit lower it would be easier to question it.

The only other thing besides celiac that comes to mind is Schwachman Syndrom. It has similiar digestive issues CF, but the score on the sweat test leans more towards CF.

Please let us know what happens!
 

JazzysMom

New member
I hate to take away any hope you have, but the descriptions you gave sure sounds like CF. Given the # on the sweat test I would have to say it is. If the # was a bit lower it would be easier to question it.

The only other thing besides celiac that comes to mind is Schwachman Syndrom. It has similiar digestive issues CF, but the score on the sweat test leans more towards CF.

Please let us know what happens!
 

JazzysMom

New member
I hate to take away any hope you have, but the descriptions you gave sure sounds like CF. Given the # on the sweat test I would have to say it is. If the # was a bit lower it would be easier to question it.

The only other thing besides celiac that comes to mind is Schwachman Syndrom. It has similiar digestive issues CF, but the score on the sweat test leans more towards CF.

Please let us know what happens!
 

JazzysMom

New member
I hate to take away any hope you have, but the descriptions you gave sure sounds like CF. Given the # on the sweat test I would have to say it is. If the # was a bit lower it would be easier to question it.
<br />
<br />The only other thing besides celiac that comes to mind is Schwachman Syndrom. It has similiar digestive issues CF, but the score on the sweat test leans more towards CF.
<br />
<br />Please let us know what happens!
 

Buckeye

New member
Reasons for False-positive sweat test result: Adrenal insufficiency, anorexia nervosa, atopic dermatitis, autonomic dysfunction, coeliac disease, ectodermal dysplasia, familial cholestasis (Byler's disease), fucosidosis, G6PD deficiency, glycogen storage disease type 1, hypogammaglobulinemia, hypoparathyroidism, hypothyroidism, Klinefelter's syndrome, malnutrition, mucopolysaccharidosis type 1, nephrogenic diabetes insipidus, nephrosis, pseudohypoaldosteronism, psychosocial problems (Rosenstein & Cutting, 1998, Duddy et al, 1987).Here is the article that I copied this from: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm">LINK</a>Now don't ask me what all these diseases are, but you can Google them to see if they would apply to your son. Hope that helps.
 

Buckeye

New member
Reasons for False-positive sweat test result: Adrenal insufficiency, anorexia nervosa, atopic dermatitis, autonomic dysfunction, coeliac disease, ectodermal dysplasia, familial cholestasis (Byler's disease), fucosidosis, G6PD deficiency, glycogen storage disease type 1, hypogammaglobulinemia, hypoparathyroidism, hypothyroidism, Klinefelter's syndrome, malnutrition, mucopolysaccharidosis type 1, nephrogenic diabetes insipidus, nephrosis, pseudohypoaldosteronism, psychosocial problems (Rosenstein & Cutting, 1998, Duddy et al, 1987).Here is the article that I copied this from: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm">LINK</a>Now don't ask me what all these diseases are, but you can Google them to see if they would apply to your son. Hope that helps.
 

Buckeye

New member
Reasons for False-positive sweat test result: Adrenal insufficiency, anorexia nervosa, atopic dermatitis, autonomic dysfunction, coeliac disease, ectodermal dysplasia, familial cholestasis (Byler's disease), fucosidosis, G6PD deficiency, glycogen storage disease type 1, hypogammaglobulinemia, hypoparathyroidism, hypothyroidism, Klinefelter's syndrome, malnutrition, mucopolysaccharidosis type 1, nephrogenic diabetes insipidus, nephrosis, pseudohypoaldosteronism, psychosocial problems (Rosenstein & Cutting, 1998, Duddy et al, 1987).Here is the article that I copied this from: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm">LINK</a>Now don't ask me what all these diseases are, but you can Google them to see if they would apply to your son. Hope that helps.
 

Buckeye

New member
Reasons for False-positive sweat test result: Adrenal insufficiency, anorexia nervosa, atopic dermatitis, autonomic dysfunction, coeliac disease, ectodermal dysplasia, familial cholestasis (Byler's disease), fucosidosis, G6PD deficiency, glycogen storage disease type 1, hypogammaglobulinemia, hypoparathyroidism, hypothyroidism, Klinefelter's syndrome, malnutrition, mucopolysaccharidosis type 1, nephrogenic diabetes insipidus, nephrosis, pseudohypoaldosteronism, psychosocial problems (Rosenstein & Cutting, 1998, Duddy et al, 1987).Here is the article that I copied this from: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm">LINK</a>Now don't ask me what all these diseases are, but you can Google them to see if they would apply to your son. Hope that helps.
 

Buckeye

New member
<p>Reasons for False-positive sweat test result: Adrenal insufficiency, anorexia nervosa, atopic dermatitis, autonomic dysfunction, coeliac disease, ectodermal dysplasia, familial cholestasis (Byler's disease), fucosidosis, G6PD deficiency, glycogen storage disease type 1, hypogammaglobulinemia, hypoparathyroidism, hypothyroidism, Klinefelter's syndrome, malnutrition, mucopolysaccharidosis type 1, nephrogenic diabetes insipidus, nephrosis, pseudohypoaldosteronism, psychosocial problems (Rosenstein & Cutting, 1998, Duddy et al, 1987).<p>Here is the article that I copied this from: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm">LINK</a><p>Now don't ask me what all these diseases are, but you can Google them to see if they would apply to your son. Hope that helps.
 
M

Mommafirst

Guest
My dd had a sweat test of 53 and turned out to have CF. I think there are lots of "borderline" sweats that are CF.

I think you have good motherly instinct. I sure hope its not CF, but if it is, it will likely be a relief that you can finally help your son. Its great he has no lung issues and you'll be able to start preventative lung care.
 
M

Mommafirst

Guest
My dd had a sweat test of 53 and turned out to have CF. I think there are lots of "borderline" sweats that are CF.

I think you have good motherly instinct. I sure hope its not CF, but if it is, it will likely be a relief that you can finally help your son. Its great he has no lung issues and you'll be able to start preventative lung care.
 
M

Mommafirst

Guest
My dd had a sweat test of 53 and turned out to have CF. I think there are lots of "borderline" sweats that are CF.

I think you have good motherly instinct. I sure hope its not CF, but if it is, it will likely be a relief that you can finally help your son. Its great he has no lung issues and you'll be able to start preventative lung care.
 
M

Mommafirst

Guest
My dd had a sweat test of 53 and turned out to have CF. I think there are lots of "borderline" sweats that are CF.

I think you have good motherly instinct. I sure hope its not CF, but if it is, it will likely be a relief that you can finally help your son. Its great he has no lung issues and you'll be able to start preventative lung care.
 
M

Mommafirst

Guest
My dd had a sweat test of 53 and turned out to have CF. I think there are lots of "borderline" sweats that are CF.
<br />
<br />I think you have good motherly instinct. I sure hope its not CF, but if it is, it will likely be a relief that you can finally help your son. Its great he has no lung issues and you'll be able to start preventative lung care.
<br />
<br />
 
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