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K

Koleen

New member
This is all new what is the best way to leave him a message?
I did no that the main mutations have not been found. But I would to no how much longer. Can you send a private message?? I'm sorry I'm still trying to learn everything on this board. I thank you so much for talking to me. Yes sorry about the miss spell. O''oops
 
K

Koleen

New member
This is all new what is the best way to leave him a message?
I did no that the main mutations have not been found. But I would to no how much longer. Can you send a private message?? I'm sorry I'm still trying to learn everything on this board. I thank you so much for talking to me. Yes sorry about the miss spell. O''oops
 
K

Koleen

New member
This is all new what is the best way to leave him a message?
I did no that the main mutations have not been found. But I would to no how much longer. Can you send a private message?? I'm sorry I'm still trying to learn everything on this board. I thank you so much for talking to me. Yes sorry about the miss spell. O''oops
 
K

Koleen

New member
This is all new what is the best way to leave him a message?
I did no that the main mutations have not been found. But I would to no how much longer. Can you send a private message?? I'm sorry I'm still trying to learn everything on this board. I thank you so much for talking to me. Yes sorry about the miss spell. O''oops
 
K

Koleen

New member
This is all new what is the best way to leave him a message?
I did no that the main mutations have not been found. But I would to no how much longer. Can you send a private message?? I'm sorry I'm still trying to learn everything on this board. I thank you so much for talking to me. Yes sorry about the miss spell. O''oops
 
M

mom2lillian

New member
go to the families section and click on the ambry sponsor section and then post a question there, or you can call ambry genetics yourself, this is nto pushy. I found out my dr office had my daughters screening for 4 days before they ever got around to calling BUT I do know the full panel can take up to 6 weeks. Take comfort in knowing the longer the betteer because that means they didnt find one yet, if they find two I believe they stop and report those two, if they dont they have to keep going until full test is done.

I hope you find your answers and please be sure to pursue this if you did not get full panel. If you daughter does have CF you have done the best thing by pursuing this and she will be mcu healthier now knowing and getting proper treatment.
 
M

mom2lillian

New member
go to the families section and click on the ambry sponsor section and then post a question there, or you can call ambry genetics yourself, this is nto pushy. I found out my dr office had my daughters screening for 4 days before they ever got around to calling BUT I do know the full panel can take up to 6 weeks. Take comfort in knowing the longer the betteer because that means they didnt find one yet, if they find two I believe they stop and report those two, if they dont they have to keep going until full test is done.

I hope you find your answers and please be sure to pursue this if you did not get full panel. If you daughter does have CF you have done the best thing by pursuing this and she will be mcu healthier now knowing and getting proper treatment.
 
M

mom2lillian

New member
go to the families section and click on the ambry sponsor section and then post a question there, or you can call ambry genetics yourself, this is nto pushy. I found out my dr office had my daughters screening for 4 days before they ever got around to calling BUT I do know the full panel can take up to 6 weeks. Take comfort in knowing the longer the betteer because that means they didnt find one yet, if they find two I believe they stop and report those two, if they dont they have to keep going until full test is done.

I hope you find your answers and please be sure to pursue this if you did not get full panel. If you daughter does have CF you have done the best thing by pursuing this and she will be mcu healthier now knowing and getting proper treatment.
 
M

mom2lillian

New member
go to the families section and click on the ambry sponsor section and then post a question there, or you can call ambry genetics yourself, this is nto pushy. I found out my dr office had my daughters screening for 4 days before they ever got around to calling BUT I do know the full panel can take up to 6 weeks. Take comfort in knowing the longer the betteer because that means they didnt find one yet, if they find two I believe they stop and report those two, if they dont they have to keep going until full test is done.

I hope you find your answers and please be sure to pursue this if you did not get full panel. If you daughter does have CF you have done the best thing by pursuing this and she will be mcu healthier now knowing and getting proper treatment.
 
M

mom2lillian

New member
go to the families section and click on the ambry sponsor section and then post a question there, or you can call ambry genetics yourself, this is nto pushy. I found out my dr office had my daughters screening for 4 days before they ever got around to calling BUT I do know the full panel can take up to 6 weeks. Take comfort in knowing the longer the betteer because that means they didnt find one yet, if they find two I believe they stop and report those two, if they dont they have to keep going until full test is done.

I hope you find your answers and please be sure to pursue this if you did not get full panel. If you daughter does have CF you have done the best thing by pursuing this and she will be mcu healthier now knowing and getting proper treatment.
 
M

madencanada

New member
hi guys and gals new to this site.... i'm 39 and 10+ yrs ago i was diagnosed with asthma. i've always questioned that diagnosis , because theres never been any real allergy problems . i've always contributed it to enviromental. anyway beause of my symtoms and i've been pretty sick over the yrs my doctor a fairly new doctor to me asked me if i was ever tested for cf . my reply obviously was no and she said beause of my symtoms i should have a sweat chloride test done. i really thought it would come back negative but, it did not. when i heard those words positive result i was devastaed . but she sai d that that result was not foresure and i'm in the midst of having more testing done. genetic testing and waiting for an appoitment to go to cf clinic for testing oh my sweat chloride test was 84 ..all i want right now is lots of tests done to make sure.. its hard not to think about that one test ,but one is not enough proof for me. anyway take care all !!!
 
M

madencanada

New member
hi guys and gals new to this site.... i'm 39 and 10+ yrs ago i was diagnosed with asthma. i've always questioned that diagnosis , because theres never been any real allergy problems . i've always contributed it to enviromental. anyway beause of my symtoms and i've been pretty sick over the yrs my doctor a fairly new doctor to me asked me if i was ever tested for cf . my reply obviously was no and she said beause of my symtoms i should have a sweat chloride test done. i really thought it would come back negative but, it did not. when i heard those words positive result i was devastaed . but she sai d that that result was not foresure and i'm in the midst of having more testing done. genetic testing and waiting for an appoitment to go to cf clinic for testing oh my sweat chloride test was 84 ..all i want right now is lots of tests done to make sure.. its hard not to think about that one test ,but one is not enough proof for me. anyway take care all !!!
 
M

madencanada

New member
hi guys and gals new to this site.... i'm 39 and 10+ yrs ago i was diagnosed with asthma. i've always questioned that diagnosis , because theres never been any real allergy problems . i've always contributed it to enviromental. anyway beause of my symtoms and i've been pretty sick over the yrs my doctor a fairly new doctor to me asked me if i was ever tested for cf . my reply obviously was no and she said beause of my symtoms i should have a sweat chloride test done. i really thought it would come back negative but, it did not. when i heard those words positive result i was devastaed . but she sai d that that result was not foresure and i'm in the midst of having more testing done. genetic testing and waiting for an appoitment to go to cf clinic for testing oh my sweat chloride test was 84 ..all i want right now is lots of tests done to make sure.. its hard not to think about that one test ,but one is not enough proof for me. anyway take care all !!!
 
M

madencanada

New member
hi guys and gals new to this site.... i'm 39 and 10+ yrs ago i was diagnosed with asthma. i've always questioned that diagnosis , because theres never been any real allergy problems . i've always contributed it to enviromental. anyway beause of my symtoms and i've been pretty sick over the yrs my doctor a fairly new doctor to me asked me if i was ever tested for cf . my reply obviously was no and she said beause of my symtoms i should have a sweat chloride test done. i really thought it would come back negative but, it did not. when i heard those words positive result i was devastaed . but she sai d that that result was not foresure and i'm in the midst of having more testing done. genetic testing and waiting for an appoitment to go to cf clinic for testing oh my sweat chloride test was 84 ..all i want right now is lots of tests done to make sure.. its hard not to think about that one test ,but one is not enough proof for me. anyway take care all !!!
 
M

madencanada

New member
hi guys and gals new to this site.... i'm 39 and 10+ yrs ago i was diagnosed with asthma. i've always questioned that diagnosis , because theres never been any real allergy problems . i've always contributed it to enviromental. anyway beause of my symtoms and i've been pretty sick over the yrs my doctor a fairly new doctor to me asked me if i was ever tested for cf . my reply obviously was no and she said beause of my symtoms i should have a sweat chloride test done. i really thought it would come back negative but, it did not. when i heard those words positive result i was devastaed . but she sai d that that result was not foresure and i'm in the midst of having more testing done. genetic testing and waiting for an appoitment to go to cf clinic for testing oh my sweat chloride test was 84 ..all i want right now is lots of tests done to make sure.. its hard not to think about that one test ,but one is not enough proof for me. anyway take care all !!!
 
K

kmaried

New member
Hi Koleen,

I'm sorry for what you are going through. I just wanted to point out that I also had no family history of CF - keeping in mind though that CF wasn't called CF until the 1950's. My uncle researched my family history as a hobby and the most he could find was three or four generations back some infants that died of 'whooping cough.' May or may not really have been CF.

I do want to point out the bright side of getting her diagnosed. With some preventative care, she won't have her annual episode of the flu. That will go a long ways to preventing lung damage!

I had digestive issues right away, and didn't cough until I was about 10. But, as others have pointed out, every case is unique!!

Best wishes,
Kris
 
K

kmaried

New member
Hi Koleen,

I'm sorry for what you are going through. I just wanted to point out that I also had no family history of CF - keeping in mind though that CF wasn't called CF until the 1950's. My uncle researched my family history as a hobby and the most he could find was three or four generations back some infants that died of 'whooping cough.' May or may not really have been CF.

I do want to point out the bright side of getting her diagnosed. With some preventative care, she won't have her annual episode of the flu. That will go a long ways to preventing lung damage!

I had digestive issues right away, and didn't cough until I was about 10. But, as others have pointed out, every case is unique!!

Best wishes,
Kris
 
K

kmaried

New member
Hi Koleen,

I'm sorry for what you are going through. I just wanted to point out that I also had no family history of CF - keeping in mind though that CF wasn't called CF until the 1950's. My uncle researched my family history as a hobby and the most he could find was three or four generations back some infants that died of 'whooping cough.' May or may not really have been CF.

I do want to point out the bright side of getting her diagnosed. With some preventative care, she won't have her annual episode of the flu. That will go a long ways to preventing lung damage!

I had digestive issues right away, and didn't cough until I was about 10. But, as others have pointed out, every case is unique!!

Best wishes,
Kris
 
K

kmaried

New member
Hi Koleen,

I'm sorry for what you are going through. I just wanted to point out that I also had no family history of CF - keeping in mind though that CF wasn't called CF until the 1950's. My uncle researched my family history as a hobby and the most he could find was three or four generations back some infants that died of 'whooping cough.' May or may not really have been CF.

I do want to point out the bright side of getting her diagnosed. With some preventative care, she won't have her annual episode of the flu. That will go a long ways to preventing lung damage!

I had digestive issues right away, and didn't cough until I was about 10. But, as others have pointed out, every case is unique!!

Best wishes,
Kris
 
K

kmaried

New member
Hi Koleen,

I'm sorry for what you are going through. I just wanted to point out that I also had no family history of CF - keeping in mind though that CF wasn't called CF until the 1950's. My uncle researched my family history as a hobby and the most he could find was three or four generations back some infants that died of 'whooping cough.' May or may not really have been CF.

I do want to point out the bright side of getting her diagnosed. With some preventative care, she won't have her annual episode of the flu. That will go a long ways to preventing lung damage!

I had digestive issues right away, and didn't cough until I was about 10. But, as others have pointed out, every case is unique!!

Best wishes,
Kris
 
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