Questions for anyone who can help PLEASE!

mandamarie · May 10, 2008

We got back the CF test today, and they did the panel with the 97 genes. We have to do further testing though which was recommended by the person who read the his results. So we are leaving Monday to get a sweat test done Tuesday morning. The closest place that can even do the test to have it sent to a lab to process it is 4hours away. Then she gave me several options for CF Certified Pediatric Pulmonologist (don't know if that is all spelled and said right) and we have to pick one and get an appointment set up right away. Then after we get the results back from the sweat tests I didn't even get the option or we'll discuss it later, I got the we NEED to do the full 1500+ genetic testing. So, I guess we still have a long road ahead of us. The couple questions I had are:
*Do insurance companies usually help cover the cost and if so how much?
*How much does the Ambry testing cost?
*What other tests besides Ambry are there and might insurance companies (we have Fiserv Health if anyone else has that one) cover them or may they be cheaper?
I did find one, I can't think of the name, but several people I found said that that one didn't find any mutations and when Ambry did thiers 2 were detected. I guess if I'm paying for it I want the one that will be the most accurate and that the most people have had luck with. We've already waited almost 5 years, some answers would be awesome. Just hopefully that it is not CF! My head is spinning just thiking of everything I want to try and figure out! Thanks for the help in advance!

mandamarie · May 10, 2008

We got back the CF test today, and they did the panel with the 97 genes. We have to do further testing though which was recommended by the person who read the his results. So we are leaving Monday to get a sweat test done Tuesday morning. The closest place that can even do the test to have it sent to a lab to process it is 4hours away. Then she gave me several options for CF Certified Pediatric Pulmonologist (don't know if that is all spelled and said right) and we have to pick one and get an appointment set up right away. Then after we get the results back from the sweat tests I didn't even get the option or we'll discuss it later, I got the we NEED to do the full 1500+ genetic testing. So, I guess we still have a long road ahead of us. The couple questions I had are:
*Do insurance companies usually help cover the cost and if so how much?
*How much does the Ambry testing cost?
*What other tests besides Ambry are there and might insurance companies (we have Fiserv Health if anyone else has that one) cover them or may they be cheaper?
I did find one, I can't think of the name, but several people I found said that that one didn't find any mutations and when Ambry did thiers 2 were detected. I guess if I'm paying for it I want the one that will be the most accurate and that the most people have had luck with. We've already waited almost 5 years, some answers would be awesome. Just hopefully that it is not CF! My head is spinning just thiking of everything I want to try and figure out! Thanks for the help in advance!

mandamarie · May 10, 2008

We got back the CF test today, and they did the panel with the 97 genes. We have to do further testing though which was recommended by the person who read the his results. So we are leaving Monday to get a sweat test done Tuesday morning. The closest place that can even do the test to have it sent to a lab to process it is 4hours away. Then she gave me several options for CF Certified Pediatric Pulmonologist (don't know if that is all spelled and said right) and we have to pick one and get an appointment set up right away. Then after we get the results back from the sweat tests I didn't even get the option or we'll discuss it later, I got the we NEED to do the full 1500+ genetic testing. So, I guess we still have a long road ahead of us. The couple questions I had are:
*Do insurance companies usually help cover the cost and if so how much?
*How much does the Ambry testing cost?
*What other tests besides Ambry are there and might insurance companies (we have Fiserv Health if anyone else has that one) cover them or may they be cheaper?
I did find one, I can't think of the name, but several people I found said that that one didn't find any mutations and when Ambry did thiers 2 were detected. I guess if I'm paying for it I want the one that will be the most accurate and that the most people have had luck with. We've already waited almost 5 years, some answers would be awesome. Just hopefully that it is not CF! My head is spinning just thiking of everything I want to try and figure out! Thanks for the help in advance!

mandamarie · May 10, 2008

We got back the CF test today, and they did the panel with the 97 genes. We have to do further testing though which was recommended by the person who read the his results. So we are leaving Monday to get a sweat test done Tuesday morning. The closest place that can even do the test to have it sent to a lab to process it is 4hours away. Then she gave me several options for CF Certified Pediatric Pulmonologist (don't know if that is all spelled and said right) and we have to pick one and get an appointment set up right away. Then after we get the results back from the sweat tests I didn't even get the option or we'll discuss it later, I got the we NEED to do the full 1500+ genetic testing. So, I guess we still have a long road ahead of us. The couple questions I had are:
*Do insurance companies usually help cover the cost and if so how much?
*How much does the Ambry testing cost?
*What other tests besides Ambry are there and might insurance companies (we have Fiserv Health if anyone else has that one) cover them or may they be cheaper?
I did find one, I can't think of the name, but several people I found said that that one didn't find any mutations and when Ambry did thiers 2 were detected. I guess if I'm paying for it I want the one that will be the most accurate and that the most people have had luck with. We've already waited almost 5 years, some answers would be awesome. Just hopefully that it is not CF! My head is spinning just thiking of everything I want to try and figure out! Thanks for the help in advance!

mandamarie · May 10, 2008

We got back the CF test today, and they did the panel with the 97 genes. We have to do further testing though which was recommended by the person who read the his results. So we are leaving Monday to get a sweat test done Tuesday morning. The closest place that can even do the test to have it sent to a lab to process it is 4hours away. Then she gave me several options for CF Certified Pediatric Pulmonologist (don't know if that is all spelled and said right) and we have to pick one and get an appointment set up right away. Then after we get the results back from the sweat tests I didn't even get the option or we'll discuss it later, I got the we NEED to do the full 1500+ genetic testing. So, I guess we still have a long road ahead of us. The couple questions I had are:
 *Do insurance companies usually help cover the cost and if so how much?
 *How much does the Ambry testing cost?
 *What other tests besides Ambry are there and might insurance companies (we have Fiserv Health if anyone else has that one) cover them or may they be cheaper?
 I did find one, I can't think of the name, but several people I found said that that one didn't find any mutations and when Ambry did thiers 2 were detected. I guess if I'm paying for it I want the one that will be the most accurate and that the most people have had luck with. We've already waited almost 5 years, some answers would be awesome. Just hopefully that it is not CF! My head is spinning just thiking of everything I want to try and figure out! Thanks for the help in advance!

holmfamily1992 · May 10, 2008

Hello,

I just wanted to tell you I am very sorry you are going through this. We have been fighting the testing proccess now for 7 months. It all started when we took our 9 year old to a Asthma and Alergy specialist. He suggested doing a sweat chloride test due to the fact that he had chronic bronchitis. Unfortunatly the first sweat test was not done in a CF certified facility so when it came back borderline they sent us to Devos Childrens Hospitol which was 3 hours away. In one week they performed 2 more sweat test and the genetic screening. This was in October. In December we finally received the results and at that time a nurse has looked at the results and told us that he was negative for the Delta 508. BUT they did find a mutation. So in order to determine whether or not he had the disease or was just a carrier they had to test us. As I am sure you have already found out, CF is passed by both parents. You can be a carrier if only one parent has a defected gene. So it came back that I carry the mutation R117H and my husband carries all the repeats. Thus diagnosing him with CF because he had both. It is now May and we finally started treament late april. It does take a long time.

Most insurance companies will cover the cost of CF testing. If not, do not be afraid to apply for Medicaid (if you have this in your state) or Childrens special health care service. Check both of those places out.

Asking your cousin for the mutation he has may help you guys alot. Since it is that mutation that passes down. Most of the time unless its a new strain. My sons sweat test was 60 and I got those results from his Doctor. I couldnt find it on the test results either. Now our other 7 children are being tested for the mutation.

Just for your info also, all CF patients are different. The only sign my son shows is his lung problems and low weight gain. He doesnt have any stomach problems and he stool is neither loose or to hard. They ran a full pancreatic test and found it to be normal. This may change but for now I am glad he doesn have to take enzymes.

I know what you are going through and this is a good place to vent and ask questions. We have had the best luck with Ambry.

Take care and good luck,
Tina, mother of 8

holmfamily1992 · May 10, 2008

Hello,

I just wanted to tell you I am very sorry you are going through this. We have been fighting the testing proccess now for 7 months. It all started when we took our 9 year old to a Asthma and Alergy specialist. He suggested doing a sweat chloride test due to the fact that he had chronic bronchitis. Unfortunatly the first sweat test was not done in a CF certified facility so when it came back borderline they sent us to Devos Childrens Hospitol which was 3 hours away. In one week they performed 2 more sweat test and the genetic screening. This was in October. In December we finally received the results and at that time a nurse has looked at the results and told us that he was negative for the Delta 508. BUT they did find a mutation. So in order to determine whether or not he had the disease or was just a carrier they had to test us. As I am sure you have already found out, CF is passed by both parents. You can be a carrier if only one parent has a defected gene. So it came back that I carry the mutation R117H and my husband carries all the repeats. Thus diagnosing him with CF because he had both. It is now May and we finally started treament late april. It does take a long time.

Most insurance companies will cover the cost of CF testing. If not, do not be afraid to apply for Medicaid (if you have this in your state) or Childrens special health care service. Check both of those places out.

Asking your cousin for the mutation he has may help you guys alot. Since it is that mutation that passes down. Most of the time unless its a new strain. My sons sweat test was 60 and I got those results from his Doctor. I couldnt find it on the test results either. Now our other 7 children are being tested for the mutation.

Just for your info also, all CF patients are different. The only sign my son shows is his lung problems and low weight gain. He doesnt have any stomach problems and he stool is neither loose or to hard. They ran a full pancreatic test and found it to be normal. This may change but for now I am glad he doesn have to take enzymes.

I know what you are going through and this is a good place to vent and ask questions. We have had the best luck with Ambry.

Take care and good luck,
Tina, mother of 8

holmfamily1992 · May 10, 2008

Hello,

I just wanted to tell you I am very sorry you are going through this. We have been fighting the testing proccess now for 7 months. It all started when we took our 9 year old to a Asthma and Alergy specialist. He suggested doing a sweat chloride test due to the fact that he had chronic bronchitis. Unfortunatly the first sweat test was not done in a CF certified facility so when it came back borderline they sent us to Devos Childrens Hospitol which was 3 hours away. In one week they performed 2 more sweat test and the genetic screening. This was in October. In December we finally received the results and at that time a nurse has looked at the results and told us that he was negative for the Delta 508. BUT they did find a mutation. So in order to determine whether or not he had the disease or was just a carrier they had to test us. As I am sure you have already found out, CF is passed by both parents. You can be a carrier if only one parent has a defected gene. So it came back that I carry the mutation R117H and my husband carries all the repeats. Thus diagnosing him with CF because he had both. It is now May and we finally started treament late april. It does take a long time.

Most insurance companies will cover the cost of CF testing. If not, do not be afraid to apply for Medicaid (if you have this in your state) or Childrens special health care service. Check both of those places out.

Asking your cousin for the mutation he has may help you guys alot. Since it is that mutation that passes down. Most of the time unless its a new strain. My sons sweat test was 60 and I got those results from his Doctor. I couldnt find it on the test results either. Now our other 7 children are being tested for the mutation.

Just for your info also, all CF patients are different. The only sign my son shows is his lung problems and low weight gain. He doesnt have any stomach problems and he stool is neither loose or to hard. They ran a full pancreatic test and found it to be normal. This may change but for now I am glad he doesn have to take enzymes.

I know what you are going through and this is a good place to vent and ask questions. We have had the best luck with Ambry.

Take care and good luck,
Tina, mother of 8

holmfamily1992 · May 10, 2008

Hello,

I just wanted to tell you I am very sorry you are going through this. We have been fighting the testing proccess now for 7 months. It all started when we took our 9 year old to a Asthma and Alergy specialist. He suggested doing a sweat chloride test due to the fact that he had chronic bronchitis. Unfortunatly the first sweat test was not done in a CF certified facility so when it came back borderline they sent us to Devos Childrens Hospitol which was 3 hours away. In one week they performed 2 more sweat test and the genetic screening. This was in October. In December we finally received the results and at that time a nurse has looked at the results and told us that he was negative for the Delta 508. BUT they did find a mutation. So in order to determine whether or not he had the disease or was just a carrier they had to test us. As I am sure you have already found out, CF is passed by both parents. You can be a carrier if only one parent has a defected gene. So it came back that I carry the mutation R117H and my husband carries all the repeats. Thus diagnosing him with CF because he had both. It is now May and we finally started treament late april. It does take a long time.

Most insurance companies will cover the cost of CF testing. If not, do not be afraid to apply for Medicaid (if you have this in your state) or Childrens special health care service. Check both of those places out.

Asking your cousin for the mutation he has may help you guys alot. Since it is that mutation that passes down. Most of the time unless its a new strain. My sons sweat test was 60 and I got those results from his Doctor. I couldnt find it on the test results either. Now our other 7 children are being tested for the mutation.

Just for your info also, all CF patients are different. The only sign my son shows is his lung problems and low weight gain. He doesnt have any stomach problems and he stool is neither loose or to hard. They ran a full pancreatic test and found it to be normal. This may change but for now I am glad he doesn have to take enzymes.

I know what you are going through and this is a good place to vent and ask questions. We have had the best luck with Ambry.

Take care and good luck,
Tina, mother of 8

holmfamily1992 · May 10, 2008

Hello,
 
 I just wanted to tell you I am very sorry you are going through this. We have been fighting the testing proccess now for 7 months. It all started when we took our 9 year old to a Asthma and Alergy specialist. He suggested doing a sweat chloride test due to the fact that he had chronic bronchitis. Unfortunatly the first sweat test was not done in a CF certified facility so when it came back borderline they sent us to Devos Childrens Hospitol which was 3 hours away. In one week they performed 2 more sweat test and the genetic screening. This was in October. In December we finally received the results and at that time a nurse has looked at the results and told us that he was negative for the Delta 508. BUT they did find a mutation. So in order to determine whether or not he had the disease or was just a carrier they had to test us. As I am sure you have already found out, CF is passed by both parents. You can be a carrier if only one parent has a defected gene. So it came back that I carry the mutation R117H and my husband carries all the repeats. Thus diagnosing him with CF because he had both. It is now May and we finally started treament late april. It does take a long time.
 
 Most insurance companies will cover the cost of CF testing. If not, do not be afraid to apply for Medicaid (if you have this in your state) or Childrens special health care service. Check both of those places out.
 
 Asking your cousin for the mutation he has may help you guys alot. Since it is that mutation that passes down. Most of the time unless its a new strain. My sons sweat test was 60 and I got those results from his Doctor. I couldnt find it on the test results either. Now our other 7 children are being tested for the mutation.
 
 Just for your info also, all CF patients are different. The only sign my son shows is his lung problems and low weight gain. He doesnt have any stomach problems and he stool is neither loose or to hard. They ran a full pancreatic test and found it to be normal. This may change but for now I am glad he doesn have to take enzymes.
 
 I know what you are going through and this is a good place to vent and ask questions. We have had the best luck with Ambry.
 
 Take care and good luck,
 Tina, mother of 8

Questions for anyone who can help PLEASE!

mandamarie

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mandamarie

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mandamarie

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mandamarie

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mandamarie

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holmfamily1992

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holmfamily1992

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holmfamily1992

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holmfamily1992

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holmfamily1992

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