Scared and not sure where to go....UPDATED 4--5-10 more questions

H

hmw

New member
Scared and not sure where to go....UPDATED 4-2-10

<div class="FTQUOTE"><begin quote>I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out.</end quote></div>
I understand!! We were brushed off for several years while my daughter developed more concerning symptoms (her pediatrician always had an 'answer for everything' whenever I expressed concern... you know, one of those types!) It is very difficult to get past that sometimes on both sides- when you know and trust the doctor and want to believe they are right and when THEY know our child and just assume (arrogantly so) that they cannot possibly be wrong. I am very glad she is getting the sweat test at the accredited center rather than locally, since the sweat test is only as good as the lab doing it- and the Ambry Amplified is definitely the way to go for testing.

I wish the very best: I don't 'want' for her to have CF, but I DO want for you to get accurate answers so she can get the best treatment for whatever is going on. And as a note~ while she may not appear to be 'failure to thrive', not gaining weight for two years IS worrisome. Growth slowing (and eventually failure) was the primary symptom leading to the dx of my daughter. Unfortunately it had really progressed to significant growth failure by the time it was caught- so addressing this symptom early on is vital.

Keep us updated... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
Scared and not sure where to go....UPDATED 4-2-10

<div class="FTQUOTE"><begin quote>I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out.</end quote></div>
I understand!! We were brushed off for several years while my daughter developed more concerning symptoms (her pediatrician always had an 'answer for everything' whenever I expressed concern... you know, one of those types!) It is very difficult to get past that sometimes on both sides- when you know and trust the doctor and want to believe they are right and when THEY know our child and just assume (arrogantly so) that they cannot possibly be wrong. I am very glad she is getting the sweat test at the accredited center rather than locally, since the sweat test is only as good as the lab doing it- and the Ambry Amplified is definitely the way to go for testing.

I wish the very best: I don't 'want' for her to have CF, but I DO want for you to get accurate answers so she can get the best treatment for whatever is going on. And as a note~ while she may not appear to be 'failure to thrive', not gaining weight for two years IS worrisome. Growth slowing (and eventually failure) was the primary symptom leading to the dx of my daughter. Unfortunately it had really progressed to significant growth failure by the time it was caught- so addressing this symptom early on is vital.

Keep us updated... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
Scared and not sure where to go....UPDATED 4-2-10

<div class="FTQUOTE"><begin quote>I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out.</end quote></div>
I understand!! We were brushed off for several years while my daughter developed more concerning symptoms (her pediatrician always had an 'answer for everything' whenever I expressed concern... you know, one of those types!) It is very difficult to get past that sometimes on both sides- when you know and trust the doctor and want to believe they are right and when THEY know our child and just assume (arrogantly so) that they cannot possibly be wrong. I am very glad she is getting the sweat test at the accredited center rather than locally, since the sweat test is only as good as the lab doing it- and the Ambry Amplified is definitely the way to go for testing.

I wish the very best: I don't 'want' for her to have CF, but I DO want for you to get accurate answers so she can get the best treatment for whatever is going on. And as a note~ while she may not appear to be 'failure to thrive', not gaining weight for two years IS worrisome. Growth slowing (and eventually failure) was the primary symptom leading to the dx of my daughter. Unfortunately it had really progressed to significant growth failure by the time it was caught- so addressing this symptom early on is vital.

Keep us updated... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
Scared and not sure where to go....UPDATED 4-2-10

<div class="FTQUOTE"><begin quote>I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out.</end quote>
I understand!! We were brushed off for several years while my daughter developed more concerning symptoms (her pediatrician always had an 'answer for everything' whenever I expressed concern... you know, one of those types!) It is very difficult to get past that sometimes on both sides- when you know and trust the doctor and want to believe they are right and when THEY know our child and just assume (arrogantly so) that they cannot possibly be wrong. I am very glad she is getting the sweat test at the accredited center rather than locally, since the sweat test is only as good as the lab doing it- and the Ambry Amplified is definitely the way to go for testing.

I wish the very best: I don't 'want' for her to have CF, but I DO want for you to get accurate answers so she can get the best treatment for whatever is going on. And as a note~ while she may not appear to be 'failure to thrive', not gaining weight for two years IS worrisome. Growth slowing (and eventually failure) was the primary symptom leading to the dx of my daughter. Unfortunately it had really progressed to significant growth failure by the time it was caught- so addressing this symptom early on is vital.

Keep us updated... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
Scared and not sure where to go....UPDATED 4-2-10

<div class="FTQUOTE"><begin quote>I hate how these doctors who you have trusted with your kids for years can make you feel crazy for asking them to check your kids out.</end quote>
<br />I understand!! We were brushed off for several years while my daughter developed more concerning symptoms (her pediatrician always had an 'answer for everything' whenever I expressed concern... you know, one of those types!) It is very difficult to get past that sometimes on both sides- when you know and trust the doctor and want to believe they are right and when THEY know our child and just assume (arrogantly so) that they cannot possibly be wrong. I am very glad she is getting the sweat test at the accredited center rather than locally, since the sweat test is only as good as the lab doing it- and the Ambry Amplified is definitely the way to go for testing.
<br />
<br />I wish the very best: I don't 'want' for her to have CF, but I DO want for you to get accurate answers so she can get the best treatment for whatever is going on. And as a note~ while she may not appear to be 'failure to thrive', not gaining weight for two years IS worrisome. Growth slowing (and eventually failure) was the primary symptom leading to the dx of my daughter. Unfortunately it had really progressed to significant growth failure by the time it was caught- so addressing this symptom early on is vital.
<br />
<br />Keep us updated... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
The Ambry test does not have to be done by the CF clinic's lab. Once the test is ordered and approved, any lab can do it. The clinics overall are used to working with the various genetics testing facilities (Ambry, etc) and will be able to help you get insurance coverage for the test. If you can't get approval to have the testing done while you are there, they can have you take the kit WITH you (it's a cardboard box complete with a vial, paperwork, & shipping instructions for the lab) so that once approval goes through, you can get the Ambry test done at a local lab. We were given the kits for our kids at clinic and couldn't use them until a little later when insurance approval went through, at which point I took the kids & kits back to our lab and had it done.

Re. the sweat test: it's very important that an accredited lab do the test to help ensure accurate results, but with the way they do the test even if she doesn't often sweat much, they should be able to get what they need from her, since they stimulate the sweating to occur and don't just 'leave it to chance.'

A chemical is applied to the skin (generally the arm), called 'pilocarpine gel.' Two electrodes are then applied to the skin in the area for several minutes (this is not painful, although it can feel warm or tingly.) This stimulates sweating. Once the electrodes come off, the sweat collecting device is put on (it looks like a wristwatch) and you can see the sweat fill up- it changes color as it collects the needed sample. They generally collect sweat from both arms to ensure an adequate sample. While this test isn't always the most definitive thing, it is a valuable tool and something they will most likely want her to have...

I hope you get more answers soon... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
The Ambry test does not have to be done by the CF clinic's lab. Once the test is ordered and approved, any lab can do it. The clinics overall are used to working with the various genetics testing facilities (Ambry, etc) and will be able to help you get insurance coverage for the test. If you can't get approval to have the testing done while you are there, they can have you take the kit WITH you (it's a cardboard box complete with a vial, paperwork, & shipping instructions for the lab) so that once approval goes through, you can get the Ambry test done at a local lab. We were given the kits for our kids at clinic and couldn't use them until a little later when insurance approval went through, at which point I took the kids & kits back to our lab and had it done.

Re. the sweat test: it's very important that an accredited lab do the test to help ensure accurate results, but with the way they do the test even if she doesn't often sweat much, they should be able to get what they need from her, since they stimulate the sweating to occur and don't just 'leave it to chance.'

A chemical is applied to the skin (generally the arm), called 'pilocarpine gel.' Two electrodes are then applied to the skin in the area for several minutes (this is not painful, although it can feel warm or tingly.) This stimulates sweating. Once the electrodes come off, the sweat collecting device is put on (it looks like a wristwatch) and you can see the sweat fill up- it changes color as it collects the needed sample. They generally collect sweat from both arms to ensure an adequate sample. While this test isn't always the most definitive thing, it is a valuable tool and something they will most likely want her to have...

I hope you get more answers soon... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
The Ambry test does not have to be done by the CF clinic's lab. Once the test is ordered and approved, any lab can do it. The clinics overall are used to working with the various genetics testing facilities (Ambry, etc) and will be able to help you get insurance coverage for the test. If you can't get approval to have the testing done while you are there, they can have you take the kit WITH you (it's a cardboard box complete with a vial, paperwork, & shipping instructions for the lab) so that once approval goes through, you can get the Ambry test done at a local lab. We were given the kits for our kids at clinic and couldn't use them until a little later when insurance approval went through, at which point I took the kids & kits back to our lab and had it done.

Re. the sweat test: it's very important that an accredited lab do the test to help ensure accurate results, but with the way they do the test even if she doesn't often sweat much, they should be able to get what they need from her, since they stimulate the sweating to occur and don't just 'leave it to chance.'

A chemical is applied to the skin (generally the arm), called 'pilocarpine gel.' Two electrodes are then applied to the skin in the area for several minutes (this is not painful, although it can feel warm or tingly.) This stimulates sweating. Once the electrodes come off, the sweat collecting device is put on (it looks like a wristwatch) and you can see the sweat fill up- it changes color as it collects the needed sample. They generally collect sweat from both arms to ensure an adequate sample. While this test isn't always the most definitive thing, it is a valuable tool and something they will most likely want her to have...

I hope you get more answers soon... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
The Ambry test does not have to be done by the CF clinic's lab. Once the test is ordered and approved, any lab can do it. The clinics overall are used to working with the various genetics testing facilities (Ambry, etc) and will be able to help you get insurance coverage for the test. If you can't get approval to have the testing done while you are there, they can have you take the kit WITH you (it's a cardboard box complete with a vial, paperwork, & shipping instructions for the lab) so that once approval goes through, you can get the Ambry test done at a local lab. We were given the kits for our kids at clinic and couldn't use them until a little later when insurance approval went through, at which point I took the kids & kits back to our lab and had it done.

Re. the sweat test: it's very important that an accredited lab do the test to help ensure accurate results, but with the way they do the test even if she doesn't often sweat much, they should be able to get what they need from her, since they stimulate the sweating to occur and don't just 'leave it to chance.'

A chemical is applied to the skin (generally the arm), called 'pilocarpine gel.' Two electrodes are then applied to the skin in the area for several minutes (this is not painful, although it can feel warm or tingly.) This stimulates sweating. Once the electrodes come off, the sweat collecting device is put on (it looks like a wristwatch) and you can see the sweat fill up- it changes color as it collects the needed sample. They generally collect sweat from both arms to ensure an adequate sample. While this test isn't always the most definitive thing, it is a valuable tool and something they will most likely want her to have...

I hope you get more answers soon... <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
The Ambry test does not have to be done by the CF clinic's lab. Once the test is ordered and approved, any lab can do it. The clinics overall are used to working with the various genetics testing facilities (Ambry, etc) and will be able to help you get insurance coverage for the test. If you can't get approval to have the testing done while you are there, they can have you take the kit WITH you (it's a cardboard box complete with a vial, paperwork, & shipping instructions for the lab) so that once approval goes through, you can get the Ambry test done at a local lab. We were given the kits for our kids at clinic and couldn't use them until a little later when insurance approval went through, at which point I took the kids & kits back to our lab and had it done.
<br />
<br />Re. the sweat test: it's very important that an accredited lab do the test to help ensure accurate results, but with the way they do the test even if she doesn't often sweat much, they should be able to get what they need from her, since they stimulate the sweating to occur and don't just 'leave it to chance.'
<br />
<br />A chemical is applied to the skin (generally the arm), called 'pilocarpine gel.' Two electrodes are then applied to the skin in the area for several minutes (this is not painful, although it can feel warm or tingly.) This stimulates sweating. Once the electrodes come off, the sweat collecting device is put on (it looks like a wristwatch) and you can see the sweat fill up- it changes color as it collects the needed sample. They generally collect sweat from both arms to ensure an adequate sample. While this test isn't always the most definitive thing, it is a valuable tool and something they will most likely want her to have...
<br />
<br />I hope you get more answers soon... <img src="i/expressions/rose.gif" border="0">
 
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