I'm confused

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worriedmom

Guest
Thank you for your replies. I'm not sure exactly what test was done. I should clarify that the company/test was Genzyme. If not the test than the company however, they only tested for the 97 mutation panel which all came back fine.He did explain to me that the test she had done did a complete breakdown of the genes and hers seemed fine. Nothing out of the ordinary. Thank God! I felt like an idiot when I was trying to explain myself about wanting the test and having no problem paying for it..I know it is expensive. that is all they seem to care about is the cost. I jsut don't know how they can throw around such a possible diagnosis when I have documentation from others that they feel it is a possibility. I also understand that one doctors perspective may not be anothers but I am willing to do whatever I can. I listened to what they had to say and kindly said I disagreed and they told me they felt addequate testing had already been performed. I've gotten the run around before from docs and have demanded testing be done. I wish there was a place you can just go and get the Ambry panel done, no one I ahve come in contact with wants to give it a chance. I thought the light was at the end of my tunnel so to speak, if I didn't have documenation from other docs I would think I was going crazy. I just want Alexis(my daughter) to get better or get the treatment she would need. Melissa
 
W

worriedmom

Guest
Thank you for your replies. I'm not sure exactly what test was done. I should clarify that the company/test was Genzyme. If not the test than the company however, they only tested for the 97 mutation panel which all came back fine.He did explain to me that the test she had done did a complete breakdown of the genes and hers seemed fine. Nothing out of the ordinary. Thank God! I felt like an idiot when I was trying to explain myself about wanting the test and having no problem paying for it..I know it is expensive. that is all they seem to care about is the cost. I jsut don't know how they can throw around such a possible diagnosis when I have documentation from others that they feel it is a possibility. I also understand that one doctors perspective may not be anothers but I am willing to do whatever I can. I listened to what they had to say and kindly said I disagreed and they told me they felt addequate testing had already been performed. I've gotten the run around before from docs and have demanded testing be done. I wish there was a place you can just go and get the Ambry panel done, no one I ahve come in contact with wants to give it a chance. I thought the light was at the end of my tunnel so to speak, if I didn't have documenation from other docs I would think I was going crazy. I just want Alexis(my daughter) to get better or get the treatment she would need. Melissa
 
W

worriedmom

Guest
Thank you for your replies. I'm not sure exactly what test was done. I should clarify that the company/test was Genzyme. If not the test than the company however, they only tested for the 97 mutation panel which all came back fine.He did explain to me that the test she had done did a complete breakdown of the genes and hers seemed fine. Nothing out of the ordinary. Thank God! I felt like an idiot when I was trying to explain myself about wanting the test and having no problem paying for it..I know it is expensive. that is all they seem to care about is the cost. I jsut don't know how they can throw around such a possible diagnosis when I have documentation from others that they feel it is a possibility. I also understand that one doctors perspective may not be anothers but I am willing to do whatever I can. I listened to what they had to say and kindly said I disagreed and they told me they felt addequate testing had already been performed. I've gotten the run around before from docs and have demanded testing be done. I wish there was a place you can just go and get the Ambry panel done, no one I ahve come in contact with wants to give it a chance. I thought the light was at the end of my tunnel so to speak, if I didn't have documenation from other docs I would think I was going crazy. I just want Alexis(my daughter) to get better or get the treatment she would need. Melissa
 
W

worriedmom

Guest
Thank you for your replies. I'm not sure exactly what test was done. I should clarify that the company/test was Genzyme. If not the test than the company however, they only tested for the 97 mutation panel which all came back fine.He did explain to me that the test she had done did a complete breakdown of the genes and hers seemed fine. Nothing out of the ordinary. Thank God! I felt like an idiot when I was trying to explain myself about wanting the test and having no problem paying for it..I know it is expensive. that is all they seem to care about is the cost. I jsut don't know how they can throw around such a possible diagnosis when I have documentation from others that they feel it is a possibility. I also understand that one doctors perspective may not be anothers but I am willing to do whatever I can. I listened to what they had to say and kindly said I disagreed and they told me they felt addequate testing had already been performed. I've gotten the run around before from docs and have demanded testing be done. I wish there was a place you can just go and get the Ambry panel done, no one I ahve come in contact with wants to give it a chance. I thought the light was at the end of my tunnel so to speak, if I didn't have documenation from other docs I would think I was going crazy. I just want Alexis(my daughter) to get better or get the treatment she would need. Melissa
 
W

worriedmom

Guest
Thank you for your replies. I'm not sure exactly what test was done. I should clarify that the company/test was Genzyme. If not the test than the company however, they only tested for the 97 mutation panel which all came back fine.He did explain to me that the test she had done did a complete breakdown of the genes and hers seemed fine. Nothing out of the ordinary. Thank God! I felt like an idiot when I was trying to explain myself about wanting the test and having no problem paying for it..I know it is expensive. that is all they seem to care about is the cost. I jsut don't know how they can throw around such a possible diagnosis when I have documentation from others that they feel it is a possibility. I also understand that one doctors perspective may not be anothers but I am willing to do whatever I can. I listened to what they had to say and kindly said I disagreed and they told me they felt addequate testing had already been performed. I've gotten the run around before from docs and have demanded testing be done. I wish there was a place you can just go and get the Ambry panel done, no one I ahve come in contact with wants to give it a chance. I thought the light was at the end of my tunnel so to speak, if I didn't have documenation from other docs I would think I was going crazy. I just want Alexis(my daughter) to get better or get the treatment she would need. Melissa
 
C

Chaggie

New member
if she only took the genzyme 97 panel she needs to be tested for the full panel, there are over 1500 mutations that have been identified. I would push whoever her pulmonologist is to get the full panel genzyme or ambry amplified test done, both test for all mutation not just the most common ones.
 
C

Chaggie

New member
if she only took the genzyme 97 panel she needs to be tested for the full panel, there are over 1500 mutations that have been identified. I would push whoever her pulmonologist is to get the full panel genzyme or ambry amplified test done, both test for all mutation not just the most common ones.
 
C

Chaggie

New member
if she only took the genzyme 97 panel she needs to be tested for the full panel, there are over 1500 mutations that have been identified. I would push whoever her pulmonologist is to get the full panel genzyme or ambry amplified test done, both test for all mutation not just the most common ones.
 
C

Chaggie

New member
if she only took the genzyme 97 panel she needs to be tested for the full panel, there are over 1500 mutations that have been identified. I would push whoever her pulmonologist is to get the full panel genzyme or ambry amplified test done, both test for all mutation not just the most common ones.
 
C

Chaggie

New member
if she only took the genzyme 97 panel she needs to be tested for the full panel, there are over 1500 mutations that have been identified. I would push whoever her pulmonologist is to get the full panel genzyme or ambry amplified test done, both test for all mutation not just the most common ones.
 
W

worriedmom

Guest
That's the problem I know. I told the doctor that is what I wanted and he basically flat out denied me. He said that becasue the genzyme 97 came back okay and that they breakdown her gene there was not enough reason to do further testing everything looked okay. That's where my problem lies. I have no problem going to another doc if I know they will order the Ambry. I feel like I keep hitting a brick wall with this. I can only get so far. I told the doctor that I had no problem paying so it wasn't like it was money out of their pocket I can understand if it was but it's not. I know I have to get it I just don't know how. Thanks.
 
W

worriedmom

Guest
That's the problem I know. I told the doctor that is what I wanted and he basically flat out denied me. He said that becasue the genzyme 97 came back okay and that they breakdown her gene there was not enough reason to do further testing everything looked okay. That's where my problem lies. I have no problem going to another doc if I know they will order the Ambry. I feel like I keep hitting a brick wall with this. I can only get so far. I told the doctor that I had no problem paying so it wasn't like it was money out of their pocket I can understand if it was but it's not. I know I have to get it I just don't know how. Thanks.
 
W

worriedmom

Guest
That's the problem I know. I told the doctor that is what I wanted and he basically flat out denied me. He said that becasue the genzyme 97 came back okay and that they breakdown her gene there was not enough reason to do further testing everything looked okay. That's where my problem lies. I have no problem going to another doc if I know they will order the Ambry. I feel like I keep hitting a brick wall with this. I can only get so far. I told the doctor that I had no problem paying so it wasn't like it was money out of their pocket I can understand if it was but it's not. I know I have to get it I just don't know how. Thanks.
 
W

worriedmom

Guest
That's the problem I know. I told the doctor that is what I wanted and he basically flat out denied me. He said that becasue the genzyme 97 came back okay and that they breakdown her gene there was not enough reason to do further testing everything looked okay. That's where my problem lies. I have no problem going to another doc if I know they will order the Ambry. I feel like I keep hitting a brick wall with this. I can only get so far. I told the doctor that I had no problem paying so it wasn't like it was money out of their pocket I can understand if it was but it's not. I know I have to get it I just don't know how. Thanks.
 
W

worriedmom

Guest
That's the problem I know. I told the doctor that is what I wanted and he basically flat out denied me. He said that becasue the genzyme 97 came back okay and that they breakdown her gene there was not enough reason to do further testing everything looked okay. That's where my problem lies. I have no problem going to another doc if I know they will order the Ambry. I feel like I keep hitting a brick wall with this. I can only get so far. I told the doctor that I had no problem paying so it wasn't like it was money out of their pocket I can understand if it was but it's not. I know I have to get it I just don't know how. Thanks.
 
C

combo76

New member
The same dr that ordered my daughters test, ordered my sons, basically I broke my children's health down to the doctor and just stated all my childrens health history - the facts. ( which is in their file). I think once I read the list to the dr, it gave the dr. a better perspective as to why she SHOULD have this test, rather than me being a "health insurance customer" asking for an expensive test to be done. ( the drs ordered the sweat tests ) ( and I pleaded for the genetic)

In reality doctors are human beings that run around like you & I. I wonder how many times they sit back and read a childs FULL history. They just collect the data as they go - I think sometimes SOME (not all) drs. just need a kindly reminder.

You figure they see an average of 20 plus kids a day. Sure they remember you & your child - but they don't remember DETAILS about our children the way we do.

Melissa - maybe if you write everything down, and be honest, and explain that you want to COMPLETELY knock the CF POSSIBLITY out of the way - maybe they will listen.

Again - good luck
 
C

combo76

New member
The same dr that ordered my daughters test, ordered my sons, basically I broke my children's health down to the doctor and just stated all my childrens health history - the facts. ( which is in their file). I think once I read the list to the dr, it gave the dr. a better perspective as to why she SHOULD have this test, rather than me being a "health insurance customer" asking for an expensive test to be done. ( the drs ordered the sweat tests ) ( and I pleaded for the genetic)

In reality doctors are human beings that run around like you & I. I wonder how many times they sit back and read a childs FULL history. They just collect the data as they go - I think sometimes SOME (not all) drs. just need a kindly reminder.

You figure they see an average of 20 plus kids a day. Sure they remember you & your child - but they don't remember DETAILS about our children the way we do.

Melissa - maybe if you write everything down, and be honest, and explain that you want to COMPLETELY knock the CF POSSIBLITY out of the way - maybe they will listen.

Again - good luck
 
C

combo76

New member
The same dr that ordered my daughters test, ordered my sons, basically I broke my children's health down to the doctor and just stated all my childrens health history - the facts. ( which is in their file). I think once I read the list to the dr, it gave the dr. a better perspective as to why she SHOULD have this test, rather than me being a "health insurance customer" asking for an expensive test to be done. ( the drs ordered the sweat tests ) ( and I pleaded for the genetic)

In reality doctors are human beings that run around like you & I. I wonder how many times they sit back and read a childs FULL history. They just collect the data as they go - I think sometimes SOME (not all) drs. just need a kindly reminder.

You figure they see an average of 20 plus kids a day. Sure they remember you & your child - but they don't remember DETAILS about our children the way we do.

Melissa - maybe if you write everything down, and be honest, and explain that you want to COMPLETELY knock the CF POSSIBLITY out of the way - maybe they will listen.

Again - good luck
 
C

combo76

New member
The same dr that ordered my daughters test, ordered my sons, basically I broke my children's health down to the doctor and just stated all my childrens health history - the facts. ( which is in their file). I think once I read the list to the dr, it gave the dr. a better perspective as to why she SHOULD have this test, rather than me being a "health insurance customer" asking for an expensive test to be done. ( the drs ordered the sweat tests ) ( and I pleaded for the genetic)

In reality doctors are human beings that run around like you & I. I wonder how many times they sit back and read a childs FULL history. They just collect the data as they go - I think sometimes SOME (not all) drs. just need a kindly reminder.

You figure they see an average of 20 plus kids a day. Sure they remember you & your child - but they don't remember DETAILS about our children the way we do.

Melissa - maybe if you write everything down, and be honest, and explain that you want to COMPLETELY knock the CF POSSIBLITY out of the way - maybe they will listen.

Again - good luck
 
C

combo76

New member
The same dr that ordered my daughters test, ordered my sons, basically I broke my children's health down to the doctor and just stated all my childrens health history - the facts. ( which is in their file). I think once I read the list to the dr, it gave the dr. a better perspective as to why she SHOULD have this test, rather than me being a "health insurance customer" asking for an expensive test to be done. ( the drs ordered the sweat tests ) ( and I pleaded for the genetic)
<br />
<br />In reality doctors are human beings that run around like you & I. I wonder how many times they sit back and read a childs FULL history. They just collect the data as they go - I think sometimes SOME (not all) drs. just need a kindly reminder.
<br />
<br />You figure they see an average of 20 plus kids a day. Sure they remember you & your child - but they don't remember DETAILS about our children the way we do.
<br />
<br />Melissa - maybe if you write everything down, and be honest, and explain that you want to COMPLETELY knock the CF POSSIBLITY out of the way - maybe they will listen.
<br />
<br />Again - good luck
 
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