Hi, I was interested intrigued by the answer steve returned. He said that a sweat test result of thirty for a newborn was positive...he did say he didn't know where she was born or if any genetic testing had been done yet. I responded back letting him know that she was born in orlando fl, and that no genetic testing had been done. Now, he hasn't gotten back to me on whether that changes anything for him.. but the reason I was intrigued is because they told me when I got the results they were high end of norm, but higher than they wanted to see... so a few days have gone by since all this info hit my brain and they indicated when we went in for the counseling we would see the doct. which why would we...if this is just to talk about family history, the basics if u will. so after gathering up the info in my brain i think is it possible that this is a c.y.b situation...cover your butt which is why they requested a second test and why we would also see the doctor. please any input or thoughts appreciated. mlag
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Interesting?? Coincidence
- Thread starter mlag2010
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Hi, I was interested intrigued by the answer steve returned. He said that a sweat test result of thirty for a newborn was positive...he did say he didn't know where she was born or if any genetic testing had been done yet. I responded back letting him know that she was born in orlando fl, and that no genetic testing had been done. Now, he hasn't gotten back to me on whether that changes anything for him.. but the reason I was intrigued is because they told me when I got the results they were high end of norm, but higher than they wanted to see... so a few days have gone by since all this info hit my brain and they indicated when we went in for the counseling we would see the doct. which why would we...if this is just to talk about family history, the basics if u will. so after gathering up the info in my brain i think is it possible that this is a c.y.b situation...cover your butt which is why they requested a second test and why we would also see the doctor. please any input or thoughts appreciated. mlag
Hi, I was interested intrigued by the answer steve returned. He said that a sweat test result of thirty for a newborn was positive...he did say he didn't know where she was born or if any genetic testing had been done yet. I responded back letting him know that she was born in orlando fl, and that no genetic testing had been done. Now, he hasn't gotten back to me on whether that changes anything for him.. but the reason I was intrigued is because they told me when I got the results they were high end of norm, but higher than they wanted to see... so a few days have gone by since all this info hit my brain and they indicated when we went in for the counseling we would see the doct. which why would we...if this is just to talk about family history, the basics if u will. so after gathering up the info in my brain i think is it possible that this is a c.y.b situation...cover your butt which is why they requested a second test and why we would also see the doctor. please any input or thoughts appreciated. mlag
Newborns usually have less chloride than older babies/children. Therefore, numbers that are considered "normal" for older babies/children are considered positive for newborns.
They want to talk with you, because they don't want to diagnose your child with one sweat test, and they don't want to scare you, so they will repeat the test. I'm sorry you're going through this. I know how scary it is. If your insurance will approve it, just tell them you want the full panel genetic testing done with Ambry. It's really the only way to know for sure.
Does your baby have symptoms? Why was the sweat test done to begin with? I'm sorry, I haven't read your other posts.
Stacey
They want to talk with you, because they don't want to diagnose your child with one sweat test, and they don't want to scare you, so they will repeat the test. I'm sorry you're going through this. I know how scary it is. If your insurance will approve it, just tell them you want the full panel genetic testing done with Ambry. It's really the only way to know for sure.
Does your baby have symptoms? Why was the sweat test done to begin with? I'm sorry, I haven't read your other posts.
Stacey
Newborns usually have less chloride than older babies/children. Therefore, numbers that are considered "normal" for older babies/children are considered positive for newborns.
They want to talk with you, because they don't want to diagnose your child with one sweat test, and they don't want to scare you, so they will repeat the test. I'm sorry you're going through this. I know how scary it is. If your insurance will approve it, just tell them you want the full panel genetic testing done with Ambry. It's really the only way to know for sure.
Does your baby have symptoms? Why was the sweat test done to begin with? I'm sorry, I haven't read your other posts.
Stacey
They want to talk with you, because they don't want to diagnose your child with one sweat test, and they don't want to scare you, so they will repeat the test. I'm sorry you're going through this. I know how scary it is. If your insurance will approve it, just tell them you want the full panel genetic testing done with Ambry. It's really the only way to know for sure.
Does your baby have symptoms? Why was the sweat test done to begin with? I'm sorry, I haven't read your other posts.
Stacey
Newborns usually have less chloride than older babies/children. Therefore, numbers that are considered "normal" for older babies/children are considered positive for newborns.
<br />
<br />They want to talk with you, because they don't want to diagnose your child with one sweat test, and they don't want to scare you, so they will repeat the test. I'm sorry you're going through this. I know how scary it is. If your insurance will approve it, just tell them you want the full panel genetic testing done with Ambry. It's really the only way to know for sure.
<br />
<br />Does your baby have symptoms? Why was the sweat test done to begin with? I'm sorry, I haven't read your other posts.
<br />
<br />Stacey
<br />
<br />They want to talk with you, because they don't want to diagnose your child with one sweat test, and they don't want to scare you, so they will repeat the test. I'm sorry you're going through this. I know how scary it is. If your insurance will approve it, just tell them you want the full panel genetic testing done with Ambry. It's really the only way to know for sure.
<br />
<br />Does your baby have symptoms? Why was the sweat test done to begin with? I'm sorry, I haven't read your other posts.
<br />
<br />Stacey
to answer stacey questions but I have another question what kind of questions do they ask at the first genetic counseling apt as far as fam hist. i go tuesday and need some idea of what to ask about my husb. side? any thoughts apprec.
wrking diagnosis of milk protein allergy some issues with weight gain freq stools some felt filmy when you touched the surface... diaper changes u would think u were changing one and go thru two or so more in the process. stools still dont seem right to me. more frq spitting up now less stooling. No genetic counseling or testing has been done yet... I think it will come back positive.. unfortunately I really dont see it being a fluke after the original issues we had at birth something in my spirit said your not done yet there is something more when I got the call about her newborn screen suddenly something said now your done now you've got it all. I know you probably think that's crazy it's okay I sort of did to at first.
wrking diagnosis of milk protein allergy some issues with weight gain freq stools some felt filmy when you touched the surface... diaper changes u would think u were changing one and go thru two or so more in the process. stools still dont seem right to me. more frq spitting up now less stooling. No genetic counseling or testing has been done yet... I think it will come back positive.. unfortunately I really dont see it being a fluke after the original issues we had at birth something in my spirit said your not done yet there is something more when I got the call about her newborn screen suddenly something said now your done now you've got it all. I know you probably think that's crazy it's okay I sort of did to at first.
to answer stacey questions but I have another question what kind of questions do they ask at the first genetic counseling apt as far as fam hist. i go tuesday and need some idea of what to ask about my husb. side? any thoughts apprec.
wrking diagnosis of milk protein allergy some issues with weight gain freq stools some felt filmy when you touched the surface... diaper changes u would think u were changing one and go thru two or so more in the process. stools still dont seem right to me. more frq spitting up now less stooling. No genetic counseling or testing has been done yet... I think it will come back positive.. unfortunately I really dont see it being a fluke after the original issues we had at birth something in my spirit said your not done yet there is something more when I got the call about her newborn screen suddenly something said now your done now you've got it all. I know you probably think that's crazy it's okay I sort of did to at first.
wrking diagnosis of milk protein allergy some issues with weight gain freq stools some felt filmy when you touched the surface... diaper changes u would think u were changing one and go thru two or so more in the process. stools still dont seem right to me. more frq spitting up now less stooling. No genetic counseling or testing has been done yet... I think it will come back positive.. unfortunately I really dont see it being a fluke after the original issues we had at birth something in my spirit said your not done yet there is something more when I got the call about her newborn screen suddenly something said now your done now you've got it all. I know you probably think that's crazy it's okay I sort of did to at first.
to answer stacey questions but I have another question what kind of questions do they ask at the first genetic counseling apt as far as fam hist. i go tuesday and need some idea of what to ask about my husb. side? any thoughts apprec.
<br />
<br /> wrking diagnosis of milk protein allergy some issues with weight gain freq stools some felt filmy when you touched the surface... diaper changes u would think u were changing one and go thru two or so more in the process. stools still dont seem right to me. more frq spitting up now less stooling. No genetic counseling or testing has been done yet... I think it will come back positive.. unfortunately I really dont see it being a fluke after the original issues we had at birth something in my spirit said your not done yet there is something more when I got the call about her newborn screen suddenly something said now your done now you've got it all. I know you probably think that's crazy it's okay I sort of did to at first.
<br />
<br /> wrking diagnosis of milk protein allergy some issues with weight gain freq stools some felt filmy when you touched the surface... diaper changes u would think u were changing one and go thru two or so more in the process. stools still dont seem right to me. more frq spitting up now less stooling. No genetic counseling or testing has been done yet... I think it will come back positive.. unfortunately I really dont see it being a fluke after the original issues we had at birth something in my spirit said your not done yet there is something more when I got the call about her newborn screen suddenly something said now your done now you've got it all. I know you probably think that's crazy it's okay I sort of did to at first.
Ok, well I was hoping you'd say just elevated IRT levels, because those frequently show false positives, but with the symptoms, I think you need to pursue the blood test.
I'm not sure what questions they will ask you at the appt. I never went through that, because there was no newborn testing when my son was born. He will be 20 next month. The thing is, most people don't have a family history of CF. A family may carry a CF gene, and never know it until someone has a child with another carrier. Looking back now, I do wonder about some older relatives who either died as infants or later in life from lung disease even though they never smoked, etc. Maybe they'll ask things like that???
What's most important though is to get the proper testing done. So many people on this site have normal or borderline sweat test results, but still have two copies of gene mutations. There are over 1500 known gene mutations that cause CF. Testing for anything less than all of them is just inadequate in my opinion. You may have to fight doctors or insurance companies or both, but I think that with your child's symptoms, you should pursue the testing.
Again, I'm sorry you're going through this. You said you had a gut feeling that there was more, and unfortunately those parental instincts are rarely wrong. I had them for 15 years while doctor after doctor told me that I was looking for trouble, and that my child was fine. My son lost 15 years that he could have been being proactive about his health. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Please keep us posted.
Stacey
I'm not sure what questions they will ask you at the appt. I never went through that, because there was no newborn testing when my son was born. He will be 20 next month. The thing is, most people don't have a family history of CF. A family may carry a CF gene, and never know it until someone has a child with another carrier. Looking back now, I do wonder about some older relatives who either died as infants or later in life from lung disease even though they never smoked, etc. Maybe they'll ask things like that???
What's most important though is to get the proper testing done. So many people on this site have normal or borderline sweat test results, but still have two copies of gene mutations. There are over 1500 known gene mutations that cause CF. Testing for anything less than all of them is just inadequate in my opinion. You may have to fight doctors or insurance companies or both, but I think that with your child's symptoms, you should pursue the testing.
Again, I'm sorry you're going through this. You said you had a gut feeling that there was more, and unfortunately those parental instincts are rarely wrong. I had them for 15 years while doctor after doctor told me that I was looking for trouble, and that my child was fine. My son lost 15 years that he could have been being proactive about his health. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Please keep us posted.
Stacey
Ok, well I was hoping you'd say just elevated IRT levels, because those frequently show false positives, but with the symptoms, I think you need to pursue the blood test.
I'm not sure what questions they will ask you at the appt. I never went through that, because there was no newborn testing when my son was born. He will be 20 next month. The thing is, most people don't have a family history of CF. A family may carry a CF gene, and never know it until someone has a child with another carrier. Looking back now, I do wonder about some older relatives who either died as infants or later in life from lung disease even though they never smoked, etc. Maybe they'll ask things like that???
What's most important though is to get the proper testing done. So many people on this site have normal or borderline sweat test results, but still have two copies of gene mutations. There are over 1500 known gene mutations that cause CF. Testing for anything less than all of them is just inadequate in my opinion. You may have to fight doctors or insurance companies or both, but I think that with your child's symptoms, you should pursue the testing.
Again, I'm sorry you're going through this. You said you had a gut feeling that there was more, and unfortunately those parental instincts are rarely wrong. I had them for 15 years while doctor after doctor told me that I was looking for trouble, and that my child was fine. My son lost 15 years that he could have been being proactive about his health. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Please keep us posted.
Stacey
I'm not sure what questions they will ask you at the appt. I never went through that, because there was no newborn testing when my son was born. He will be 20 next month. The thing is, most people don't have a family history of CF. A family may carry a CF gene, and never know it until someone has a child with another carrier. Looking back now, I do wonder about some older relatives who either died as infants or later in life from lung disease even though they never smoked, etc. Maybe they'll ask things like that???
What's most important though is to get the proper testing done. So many people on this site have normal or borderline sweat test results, but still have two copies of gene mutations. There are over 1500 known gene mutations that cause CF. Testing for anything less than all of them is just inadequate in my opinion. You may have to fight doctors or insurance companies or both, but I think that with your child's symptoms, you should pursue the testing.
Again, I'm sorry you're going through this. You said you had a gut feeling that there was more, and unfortunately those parental instincts are rarely wrong. I had them for 15 years while doctor after doctor told me that I was looking for trouble, and that my child was fine. My son lost 15 years that he could have been being proactive about his health. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Please keep us posted.
Stacey
Ok, well I was hoping you'd say just elevated IRT levels, because those frequently show false positives, but with the symptoms, I think you need to pursue the blood test.
<br />
<br />I'm not sure what questions they will ask you at the appt. I never went through that, because there was no newborn testing when my son was born. He will be 20 next month. The thing is, most people don't have a family history of CF. A family may carry a CF gene, and never know it until someone has a child with another carrier. Looking back now, I do wonder about some older relatives who either died as infants or later in life from lung disease even though they never smoked, etc. Maybe they'll ask things like that???
<br />
<br />What's most important though is to get the proper testing done. So many people on this site have normal or borderline sweat test results, but still have two copies of gene mutations. There are over 1500 known gene mutations that cause CF. Testing for anything less than all of them is just inadequate in my opinion. You may have to fight doctors or insurance companies or both, but I think that with your child's symptoms, you should pursue the testing.
<br />
<br />Again, I'm sorry you're going through this. You said you had a gut feeling that there was more, and unfortunately those parental instincts are rarely wrong. I had them for 15 years while doctor after doctor told me that I was looking for trouble, and that my child was fine. My son lost 15 years that he could have been being proactive about his health. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Please keep us posted.
<br />
<br />Stacey
<br />
<br />I'm not sure what questions they will ask you at the appt. I never went through that, because there was no newborn testing when my son was born. He will be 20 next month. The thing is, most people don't have a family history of CF. A family may carry a CF gene, and never know it until someone has a child with another carrier. Looking back now, I do wonder about some older relatives who either died as infants or later in life from lung disease even though they never smoked, etc. Maybe they'll ask things like that???
<br />
<br />What's most important though is to get the proper testing done. So many people on this site have normal or borderline sweat test results, but still have two copies of gene mutations. There are over 1500 known gene mutations that cause CF. Testing for anything less than all of them is just inadequate in my opinion. You may have to fight doctors or insurance companies or both, but I think that with your child's symptoms, you should pursue the testing.
<br />
<br />Again, I'm sorry you're going through this. You said you had a gut feeling that there was more, and unfortunately those parental instincts are rarely wrong. I had them for 15 years while doctor after doctor told me that I was looking for trouble, and that my child was fine. My son lost 15 years that he could have been being proactive about his health. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Please keep us posted.
<br />
<br />Stacey
Thanks so much Stacey at first I would have thought that to with IRT elevated but her sweat test results were a thirty one and a thirty five...if steve is correct I wouldn't think that both would come back over thirty and it be a fluke and on top of which I didn't expect that it would be that high in a newborn who they said they might not even be able to get enough sweat out of. My husband is of the mind that he won't think about or discuss anything until we know my feeling is that that is more foolish and ignorance will cause more trouble but maybe I am the abnormal one. I don't want her to be sick I don't mean it in that way. I hope we get some answers on tuesday of the coming week. I feel good about what I've done to get info about this and the process's involved despite the opinions of others. I am sorry it took so long with your son, but I am so happy it sounds as if he is doing well now. I will keep you posted all of you.
Thanks so much Stacey at first I would have thought that to with IRT elevated but her sweat test results were a thirty one and a thirty five...if steve is correct I wouldn't think that both would come back over thirty and it be a fluke and on top of which I didn't expect that it would be that high in a newborn who they said they might not even be able to get enough sweat out of. My husband is of the mind that he won't think about or discuss anything until we know my feeling is that that is more foolish and ignorance will cause more trouble but maybe I am the abnormal one. I don't want her to be sick I don't mean it in that way. I hope we get some answers on tuesday of the coming week. I feel good about what I've done to get info about this and the process's involved despite the opinions of others. I am sorry it took so long with your son, but I am so happy it sounds as if he is doing well now. I will keep you posted all of you.