my 4 year old last year had 3 sweet test! they was all boarder line 46 and 45 and 45! so they did a dna test! dna test came back saying she had CF.. he asked me if i would take a dna test to see who gave her what gene so i did this! this office called back in sept.. after mine came back! worried cause i was due in dec with my 5th child! they said that madison was just a carrier! i took her back just to have the doctor give her a clean bill of health and he said i still feel she has CF and i would like to do another sweat test and a ultrasound of her gallbladder and a few other organs!!! and also a poop sample! im confused more then ever now! first they say yes then they say no! then they say yes again!!! i wish they would stop playing games with me! i mean im glad he is saying on top of things he is a very good doctor!! most of the people i know that go there dont like him but i really like him better then some of the ones she has seen! he makes her happy and thats all that matters! now this doctor wants to test my newborn to which is fine! but i dont really want a run around like they have given me with madison
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madison
- Thread starter tnmomma5
- Start date
my 4 year old last year had 3 sweet test! they was all boarder line 46 and 45 and 45! so they did a dna test! dna test came back saying she had CF.. he asked me if i would take a dna test to see who gave her what gene so i did this! this office called back in sept.. after mine came back! worried cause i was due in dec with my 5th child! they said that madison was just a carrier! i took her back just to have the doctor give her a clean bill of health and he said i still feel she has CF and i would like to do another sweat test and a ultrasound of her gallbladder and a few other organs!!! and also a poop sample! im confused more then ever now! first they say yes then they say no! then they say yes again!!! i wish they would stop playing games with me! i mean im glad he is saying on top of things he is a very good doctor!! most of the people i know that go there dont like him but i really like him better then some of the ones she has seen! he makes her happy and thats all that matters! now this doctor wants to test my newborn to which is fine! but i dont really want a run around like they have given me with madison
my 4 year old last year had 3 sweet test! they was all boarder line 46 and 45 and 45! so they did a dna test! dna test came back saying she had CF.. he asked me if i would take a dna test to see who gave her what gene so i did this! this office called back in sept.. after mine came back! worried cause i was due in dec with my 5th child! they said that madison was just a carrier! i took her back just to have the doctor give her a clean bill of health and he said i still feel she has CF and i would like to do another sweat test and a ultrasound of her gallbladder and a few other organs!!! and also a poop sample! im confused more then ever now! first they say yes then they say no! then they say yes again!!! i wish they would stop playing games with me! i mean im glad he is saying on top of things he is a very good doctor!! most of the people i know that go there dont like him but i really like him better then some of the ones she has seen! he makes her happy and thats all that matters! now this doctor wants to test my newborn to which is fine! but i dont really want a run around like they have given me with madison
That's a lot of !!!!!!! I can definately see your passion.....
Did you get a genetic test for CF genes? If she has two CF genes, then she has CF.... end of story.
Sweat tests are a bit old-school and aren't as accurate as DNA tests.
I would suggest getting a Full Panel Ambry CF genetic test... that way you will know for sure.
Did you get a genetic test for CF genes? If she has two CF genes, then she has CF.... end of story.
Sweat tests are a bit old-school and aren't as accurate as DNA tests.
I would suggest getting a Full Panel Ambry CF genetic test... that way you will know for sure.
That's a lot of !!!!!!! I can definately see your passion.....
Did you get a genetic test for CF genes? If she has two CF genes, then she has CF.... end of story.
Sweat tests are a bit old-school and aren't as accurate as DNA tests.
I would suggest getting a Full Panel Ambry CF genetic test... that way you will know for sure.
Did you get a genetic test for CF genes? If she has two CF genes, then she has CF.... end of story.
Sweat tests are a bit old-school and aren't as accurate as DNA tests.
I would suggest getting a Full Panel Ambry CF genetic test... that way you will know for sure.
That's a lot of !!!!!!! I can definately see your passion.....
Did you get a genetic test for CF genes? If she has two CF genes, then she has CF.... end of story.
Sweat tests are a bit old-school and aren't as accurate as DNA tests.
I would suggest getting a Full Panel Ambry CF genetic test... that way you will know for sure.
Did you get a genetic test for CF genes? If she has two CF genes, then she has CF.... end of story.
Sweat tests are a bit old-school and aren't as accurate as DNA tests.
I would suggest getting a Full Panel Ambry CF genetic test... that way you will know for sure.
She might have the symptoms of CF, but often if a doctor has a genetic panel done and it doesnt show both mutations that is where they leave it. Given the sweat tests result I would push for the extended, amplified genetic panel thru Ambry Genetics. My guess is that she has another mutation that is more rare. We have people that even waited a few years after having 1 gene found with no sign of the other.....they go back to have another genetic test done when they have discovered more mutations and BINGO they found the other mutation by then. PUSH for the additional testing of the mutations......sweat test will only do so much!!!
She might have the symptoms of CF, but often if a doctor has a genetic panel done and it doesnt show both mutations that is where they leave it. Given the sweat tests result I would push for the extended, amplified genetic panel thru Ambry Genetics. My guess is that she has another mutation that is more rare. We have people that even waited a few years after having 1 gene found with no sign of the other.....they go back to have another genetic test done when they have discovered more mutations and BINGO they found the other mutation by then. PUSH for the additional testing of the mutations......sweat test will only do so much!!!
She might have the symptoms of CF, but often if a doctor has a genetic panel done and it doesnt show both mutations that is where they leave it. Given the sweat tests result I would push for the extended, amplified genetic panel thru Ambry Genetics. My guess is that she has another mutation that is more rare. We have people that even waited a few years after having 1 gene found with no sign of the other.....they go back to have another genetic test done when they have discovered more mutations and BINGO they found the other mutation by then. PUSH for the additional testing of the mutations......sweat test will only do so much!!!
yes she had a dna test they tested for all 800 or more CF genes i also had the test! in return it came back saying i had two genes! which doesnt make any since! so after the look on his face i would of swore he was saying i had CF to! but we are so confused now it isnt funny im adding my friend samantha to madisons list of people who can get info on her! just for safty reason! samanthas daughter has CF and was madison age when she found out she was totally confused to because it didnt make any since why another sweat test after 3 sweat test last year and why now an ultrasound! ok and why did your office call me in sept saying that when my dna test come back saying and i quote she is fine totally fine just a carrier take her off the caron and dont worry about a thing and it took me this long to get her in to see you! since she missed her last appointment! why now are you setting there telling me that your office made a mistake and you think more test are needed you have made this child go though more test then normal for a child you think has cf why this and why now!!! plus you cant recant your first statement saying after madison surgery you felt it was CF!! but now your telling me it is!!! and you was wrong for telling me that and you feel you cant give up! ok now look ive been fighting with this since you told me it was normal and just really nothing to worry about!!! lmao so you lied to me!! you a doctor a man who is surpose to be better then that just lied to me and my family and my baby! oh and oh yeah now your office is wanting to test my 3 month old daugther!!! ok now this is where i say i want anwsers!! and i want them now!!! i want the right anwsers!! to not the wrong ones!!! give them to me!!! and while your at it!!!! fix madison!!! her cough was back but he felt it wasnt CF related allergies more then anything but then telling me she is a classic CF patient!!! i mean you have kids wouldnt this upset you! im 27 years old with 5 kids madison has been a sick baby from day one you name it shes had it! why is this such a normal test!!!! and why wait till she is 3 and then after her 4th birthday tell us she is fine and in return not be!!
yes she had a dna test they tested for all 800 or more CF genes i also had the test! in return it came back saying i had two genes! which doesnt make any since! so after the look on his face i would of swore he was saying i had CF to! but we are so confused now it isnt funny im adding my friend samantha to madisons list of people who can get info on her! just for safty reason! samanthas daughter has CF and was madison age when she found out she was totally confused to because it didnt make any since why another sweat test after 3 sweat test last year and why now an ultrasound! ok and why did your office call me in sept saying that when my dna test come back saying and i quote she is fine totally fine just a carrier take her off the caron and dont worry about a thing and it took me this long to get her in to see you! since she missed her last appointment! why now are you setting there telling me that your office made a mistake and you think more test are needed you have made this child go though more test then normal for a child you think has cf why this and why now!!! plus you cant recant your first statement saying after madison surgery you felt it was CF!! but now your telling me it is!!! and you was wrong for telling me that and you feel you cant give up! ok now look ive been fighting with this since you told me it was normal and just really nothing to worry about!!! lmao so you lied to me!! you a doctor a man who is surpose to be better then that just lied to me and my family and my baby! oh and oh yeah now your office is wanting to test my 3 month old daugther!!! ok now this is where i say i want anwsers!! and i want them now!!! i want the right anwsers!! to not the wrong ones!!! give them to me!!! and while your at it!!!! fix madison!!! her cough was back but he felt it wasnt CF related allergies more then anything but then telling me she is a classic CF patient!!! i mean you have kids wouldnt this upset you! im 27 years old with 5 kids madison has been a sick baby from day one you name it shes had it! why is this such a normal test!!!! and why wait till she is 3 and then after her 4th birthday tell us she is fine and in return not be!!
yes she had a dna test they tested for all 800 or more CF genes i also had the test! in return it came back saying i had two genes! which doesnt make any since! so after the look on his face i would of swore he was saying i had CF to! but we are so confused now it isnt funny im adding my friend samantha to madisons list of people who can get info on her! just for safty reason! samanthas daughter has CF and was madison age when she found out she was totally confused to because it didnt make any since why another sweat test after 3 sweat test last year and why now an ultrasound! ok and why did your office call me in sept saying that when my dna test come back saying and i quote she is fine totally fine just a carrier take her off the caron and dont worry about a thing and it took me this long to get her in to see you! since she missed her last appointment! why now are you setting there telling me that your office made a mistake and you think more test are needed you have made this child go though more test then normal for a child you think has cf why this and why now!!! plus you cant recant your first statement saying after madison surgery you felt it was CF!! but now your telling me it is!!! and you was wrong for telling me that and you feel you cant give up! ok now look ive been fighting with this since you told me it was normal and just really nothing to worry about!!! lmao so you lied to me!! you a doctor a man who is surpose to be better then that just lied to me and my family and my baby! oh and oh yeah now your office is wanting to test my 3 month old daugther!!! ok now this is where i say i want anwsers!! and i want them now!!! i want the right anwsers!! to not the wrong ones!!! give them to me!!! and while your at it!!!! fix madison!!! her cough was back but he felt it wasnt CF related allergies more then anything but then telling me she is a classic CF patient!!! i mean you have kids wouldnt this upset you! im 27 years old with 5 kids madison has been a sick baby from day one you name it shes had it! why is this such a normal test!!!! and why wait till she is 3 and then after her 4th birthday tell us she is fine and in return not be!!
yes you are right it is rare he told me that when we got her dna test back they dont know what all this gene will do if anything! it could miss with other things then her lungs or just her lungs or nothing at all or her bowels blhhhh bluhhh you know this is hard!! but yes i did have a dna test on his say so just to tell them what was coming from what!!! she had a lung surgery in june before her birthday! i take care of madison daily she was having a hard time breathing but thats all it was!! she just went to his office for a lung xray and a normal lung test as he told us!!! which after talking to other doctors it really not that normal unless her xray was showing something to be wrong! she was taking cron for a few months!! i know thats not spelled right!! for the first time in years her bowels was in control she could finly eat with out getting an upset stomach! she could even play with out running to the bathroom i took her off in sept..after his office said so! she has been pooping and peeing her self since! he said the peeing wouldnt have anything to do with it!! but now things wow she really hasnt gained alot of weight since her last visit! madison is smaller then her two year old brother and her 4 year old cousin! they tower over her! all we want is answers!!! we want the truth we want to know how to help our beautiful 4 year old daugther! and just to have her better! ill show you a picture of her! but i havent yet figured this out yet!!! my email is smandra79@yahoo.com email me and ill show you what she looked like!! to her 2 year old brother!!! i just dont get it just tell me in the email you want to see madison pix!!
yes you are right it is rare he told me that when we got her dna test back they dont know what all this gene will do if anything! it could miss with other things then her lungs or just her lungs or nothing at all or her bowels blhhhh bluhhh you know this is hard!! but yes i did have a dna test on his say so just to tell them what was coming from what!!! she had a lung surgery in june before her birthday! i take care of madison daily she was having a hard time breathing but thats all it was!! she just went to his office for a lung xray and a normal lung test as he told us!!! which after talking to other doctors it really not that normal unless her xray was showing something to be wrong! she was taking cron for a few months!! i know thats not spelled right!! for the first time in years her bowels was in control she could finly eat with out getting an upset stomach! she could even play with out running to the bathroom i took her off in sept..after his office said so! she has been pooping and peeing her self since! he said the peeing wouldnt have anything to do with it!! but now things wow she really hasnt gained alot of weight since her last visit! madison is smaller then her two year old brother and her 4 year old cousin! they tower over her! all we want is answers!!! we want the truth we want to know how to help our beautiful 4 year old daugther! and just to have her better! ill show you a picture of her! but i havent yet figured this out yet!!! my email is smandra79@yahoo.com email me and ill show you what she looked like!! to her 2 year old brother!!! i just dont get it just tell me in the email you want to see madison pix!!
yes you are right it is rare he told me that when we got her dna test back they dont know what all this gene will do if anything! it could miss with other things then her lungs or just her lungs or nothing at all or her bowels blhhhh bluhhh you know this is hard!! but yes i did have a dna test on his say so just to tell them what was coming from what!!! she had a lung surgery in june before her birthday! i take care of madison daily she was having a hard time breathing but thats all it was!! she just went to his office for a lung xray and a normal lung test as he told us!!! which after talking to other doctors it really not that normal unless her xray was showing something to be wrong! she was taking cron for a few months!! i know thats not spelled right!! for the first time in years her bowels was in control she could finly eat with out getting an upset stomach! she could even play with out running to the bathroom i took her off in sept..after his office said so! she has been pooping and peeing her self since! he said the peeing wouldnt have anything to do with it!! but now things wow she really hasnt gained alot of weight since her last visit! madison is smaller then her two year old brother and her 4 year old cousin! they tower over her! all we want is answers!!! we want the truth we want to know how to help our beautiful 4 year old daugther! and just to have her better! ill show you a picture of her! but i havent yet figured this out yet!!! my email is smandra79@yahoo.com email me and ill show you what she looked like!! to her 2 year old brother!!! i just dont get it just tell me in the email you want to see madison pix!!
Let me get this straight: Ambry preformed genetic testing on both you and your daughter. They found that you had two CF mutations one of which is very rare and so it is not known if it is disease causing or not. You though do NOT have symptoms of CF, right??? (it is possible that if you have two CF mutations and that your daughter has the very rare mutation you also have they are assuming that your daughter will be asymptomatic like you since you have the same mutation but no disease.)
Are they currently saying that your daughter has CF or are they currently saying your daughter DOES NOT have CF?
Your daughter does have CF symptoms though? Did they find two CF mutations when they preformed genetic testing on your daughter or did they just find one mutation?
What was your daughter's sweat chloride number?
Is your husband a known carrier as well? What genes did they find when they tested you and your daughter? And if your husband was tested what genes did they find in his case?
Are they currently saying that your daughter has CF or are they currently saying your daughter DOES NOT have CF?
Your daughter does have CF symptoms though? Did they find two CF mutations when they preformed genetic testing on your daughter or did they just find one mutation?
What was your daughter's sweat chloride number?
Is your husband a known carrier as well? What genes did they find when they tested you and your daughter? And if your husband was tested what genes did they find in his case?
Let me get this straight: Ambry preformed genetic testing on both you and your daughter. They found that you had two CF mutations one of which is very rare and so it is not known if it is disease causing or not. You though do NOT have symptoms of CF, right??? (it is possible that if you have two CF mutations and that your daughter has the very rare mutation you also have they are assuming that your daughter will be asymptomatic like you since you have the same mutation but no disease.)
Are they currently saying that your daughter has CF or are they currently saying your daughter DOES NOT have CF?
Your daughter does have CF symptoms though? Did they find two CF mutations when they preformed genetic testing on your daughter or did they just find one mutation?
What was your daughter's sweat chloride number?
Is your husband a known carrier as well? What genes did they find when they tested you and your daughter? And if your husband was tested what genes did they find in his case?
Are they currently saying that your daughter has CF or are they currently saying your daughter DOES NOT have CF?
Your daughter does have CF symptoms though? Did they find two CF mutations when they preformed genetic testing on your daughter or did they just find one mutation?
What was your daughter's sweat chloride number?
Is your husband a known carrier as well? What genes did they find when they tested you and your daughter? And if your husband was tested what genes did they find in his case?
Let me get this straight: Ambry preformed genetic testing on both you and your daughter. They found that you had two CF mutations one of which is very rare and so it is not known if it is disease causing or not. You though do NOT have symptoms of CF, right??? (it is possible that if you have two CF mutations and that your daughter has the very rare mutation you also have they are assuming that your daughter will be asymptomatic like you since you have the same mutation but no disease.)
Are they currently saying that your daughter has CF or are they currently saying your daughter DOES NOT have CF?
Your daughter does have CF symptoms though? Did they find two CF mutations when they preformed genetic testing on your daughter or did they just find one mutation?
What was your daughter's sweat chloride number?
Is your husband a known carrier as well? What genes did they find when they tested you and your daughter? And if your husband was tested what genes did they find in his case?
Are they currently saying that your daughter has CF or are they currently saying your daughter DOES NOT have CF?
Your daughter does have CF symptoms though? Did they find two CF mutations when they preformed genetic testing on your daughter or did they just find one mutation?
What was your daughter's sweat chloride number?
Is your husband a known carrier as well? What genes did they find when they tested you and your daughter? And if your husband was tested what genes did they find in his case?