grassisgreener
New member
Sorry, triple post! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
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grassisgreener
New member
Sorry, triple post! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
grassisgreener
New member
Sorry, triple post! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
grassisgreener
New member
Sorry, triple post! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
grassisgreener
New member
Sorry, triple post! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
There are reasons why you can get a false positive, many of them are fairly uncommon diseases/syndromes though. I found this list online as part of an article at http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
There are reasons why you can get a false positive, many of them are fairly uncommon diseases/syndromes though. I found this list online as part of an article at http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
There are reasons why you can get a false positive, many of them are fairly uncommon diseases/syndromes though. I found this list online as part of an article at http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
There are reasons why you can get a false positive, many of them are fairly uncommon diseases/syndromes though. I found this list online as part of an article at http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
There are reasons why you can get a false positive, many of them are fairly uncommon diseases/syndromes though. I found this list online as part of an article at http://www.cysticfibrosismedicine.com/htmldocs/CFText/sweat.htm
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
<b>False-positive sweat test result</b>
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).
In an earlier post of your's I saw that you were going to Baystate Medical in Mass. which does have an accredited center. Just to clarify though, are you going to the CF center there or just going through a doctor that works there? It is important to be seen at the CF center itself and not just somewhere in the hospital. Don't know if that's the case with your child, but just wanted to throw that out there.
Also, my son was in the same boat as your child. He had numerous (too many to count) clearly positive sweat tests and no genetic mutations could be found. We ruled out all of the above other reasosn for a positive sweat test and now they have decided to officially call it Atypical CF.
M
Mommafirst
Guest
I pretty much ditto everything Sharon said.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
M
Mommafirst
Guest
I pretty much ditto everything Sharon said.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
M
Mommafirst
Guest
I pretty much ditto everything Sharon said.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
M
Mommafirst
Guest
I pretty much ditto everything Sharon said.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
M
Mommafirst
Guest
I pretty much ditto everything Sharon said.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
I don't know if genzyme is substandard to ambry. I *think* that if they do the full gene sequencing with deletions and duplications, that its the same, but the question is whether that is actually what you got.
Waiting until February is ridiculous!! That alone would make me switch doctors!! Our CF center has its own geneticist and I saw them all within ONE day of our borderline sweat result.
kayleesgrandma
New member
It does not sound like you are seeing a qualified cf doctor. They would not make you wait 1/2 yr to get tested--that is utterly ridiculous. Find another doctor, and do not EVER pay to talk to the nurse. DEMAND to talk to the doctor or tell him you will not pay for services NOT RENDERED. Ask him if this was HIS child, would HE wait???? FIND ANOTHER DOCTOR!!! A REAL CF doctor would have ordered the full panel if there was doubt after two positive sweat tests....Let us know what happens.
kayleesgrandma
New member
It does not sound like you are seeing a qualified cf doctor. They would not make you wait 1/2 yr to get tested--that is utterly ridiculous. Find another doctor, and do not EVER pay to talk to the nurse. DEMAND to talk to the doctor or tell him you will not pay for services NOT RENDERED. Ask him if this was HIS child, would HE wait???? FIND ANOTHER DOCTOR!!! A REAL CF doctor would have ordered the full panel if there was doubt after two positive sweat tests....Let us know what happens.
kayleesgrandma
New member
It does not sound like you are seeing a qualified cf doctor. They would not make you wait 1/2 yr to get tested--that is utterly ridiculous. Find another doctor, and do not EVER pay to talk to the nurse. DEMAND to talk to the doctor or tell him you will not pay for services NOT RENDERED. Ask him if this was HIS child, would HE wait???? FIND ANOTHER DOCTOR!!! A REAL CF doctor would have ordered the full panel if there was doubt after two positive sweat tests....Let us know what happens.
kayleesgrandma
New member
It does not sound like you are seeing a qualified cf doctor. They would not make you wait 1/2 yr to get tested--that is utterly ridiculous. Find another doctor, and do not EVER pay to talk to the nurse. DEMAND to talk to the doctor or tell him you will not pay for services NOT RENDERED. Ask him if this was HIS child, would HE wait???? FIND ANOTHER DOCTOR!!! A REAL CF doctor would have ordered the full panel if there was doubt after two positive sweat tests....Let us know what happens.
kayleesgrandma
New member
It does not sound like you are seeing a qualified cf doctor. They would not make you wait 1/2 yr to get tested--that is utterly ridiculous. Find another doctor, and do not EVER pay to talk to the nurse. DEMAND to talk to the doctor or tell him you will not pay for services NOT RENDERED. Ask him if this was HIS child, would HE wait???? FIND ANOTHER DOCTOR!!! A REAL CF doctor would have ordered the full panel if there was doubt after two positive sweat tests....Let us know what happens.