Positive Heal Prick Test - any information

[liz38]

I live in Australia and have received a telephone call with no further information available to me until Sunday when I have made an appointment to see a ped. I have a four week old son who has a positive heal prick test in the cf area. I didn't know what cf was until I recieved this phone call. I have been browsing through this site and you guys seem to have more information than anywhere else I can find so any of your experiences/information would be appreciated. My son was 8½ pounds born and is putting on plenty of weight each week , I cannot see any signs of illness, he seems to poo a lot but don't all newborns and he is a good sleeper he wakes every 3 hours for a feed but apart from that doesn't spend a lot of time awake and is a happy baby. I live in a remote area of Australia and we are the only state (Northern Territory) that has no cf facilities I have found out. Can anybody tell me what the positive heal prick means - does it mean he is definatley a carrier or has cf? As I am sure you all appreciate I would like to know the situation ASAP what should I be asking the ped on Sunday. I presume they will be doing a sweat test but from what I have read on this site that will not be a definate answer? I had an amnio at 15 weeks which came back negative (the reason for the amnio was my age I am 38 not any family histories of problems) and had a problem free pregnancy I also have a 3 year old daughter who is healthy.

Any advice anybody can offer will be greatly appreciated.

Thankyou

Liz

 

[liz38]

I live in Australia and have received a telephone call with no further information available to me until Sunday when I have made an appointment to see a ped. I have a four week old son who has a positive heal prick test in the cf area. I didn't know what cf was until I recieved this phone call. I have been browsing through this site and you guys seem to have more information than anywhere else I can find so any of your experiences/information would be appreciated. My son was 8½ pounds born and is putting on plenty of weight each week , I cannot see any signs of illness, he seems to poo a lot but don't all newborns and he is a good sleeper he wakes every 3 hours for a feed but apart from that doesn't spend a lot of time awake and is a happy baby. I live in a remote area of Australia and we are the only state (Northern Territory) that has no cf facilities I have found out. Can anybody tell me what the positive heal prick means - does it mean he is definatley a carrier or has cf? As I am sure you all appreciate I would like to know the situation ASAP what should I be asking the ped on Sunday. I presume they will be doing a sweat test but from what I have read on this site that will not be a definate answer? I had an amnio at 15 weeks which came back negative (the reason for the amnio was my age I am 38 not any family histories of problems) and had a problem free pregnancy I also have a 3 year old daughter who is healthy.

Any advice anybody can offer will be greatly appreciated.

Thankyou

Liz

 

[liz38]

I live in Australia and have received a telephone call with no further information available to me until Sunday when I have made an appointment to see a ped. I have a four week old son who has a positive heal prick test in the cf area. I didn't know what cf was until I recieved this phone call. I have been browsing through this site and you guys seem to have more information than anywhere else I can find so any of your experiences/information would be appreciated. My son was 8½ pounds born and is putting on plenty of weight each week , I cannot see any signs of illness, he seems to poo a lot but don't all newborns and he is a good sleeper he wakes every 3 hours for a feed but apart from that doesn't spend a lot of time awake and is a happy baby. I live in a remote area of Australia and we are the only state (Northern Territory) that has no cf facilities I have found out. Can anybody tell me what the positive heal prick means - does it mean he is definatley a carrier or has cf? As I am sure you all appreciate I would like to know the situation ASAP what should I be asking the ped on Sunday. I presume they will be doing a sweat test but from what I have read on this site that will not be a definate answer? I had an amnio at 15 weeks which came back negative (the reason for the amnio was my age I am 38 not any family histories of problems) and had a problem free pregnancy I also have a 3 year old daughter who is healthy.

Any advice anybody can offer will be greatly appreciated.

Thankyou

Liz

 

[liz38]

I live in Australia and have received a telephone call with no further information available to me until Sunday when I have made an appointment to see a ped. I have a four week old son who has a positive heal prick test in the cf area. I didn't know what cf was until I recieved this phone call. I have been browsing through this site and you guys seem to have more information than anywhere else I can find so any of your experiences/information would be appreciated. My son was 8½ pounds born and is putting on plenty of weight each week , I cannot see any signs of illness, he seems to poo a lot but don't all newborns and he is a good sleeper he wakes every 3 hours for a feed but apart from that doesn't spend a lot of time awake and is a happy baby. I live in a remote area of Australia and we are the only state (Northern Territory) that has no cf facilities I have found out. Can anybody tell me what the positive heal prick means - does it mean he is definatley a carrier or has cf? As I am sure you all appreciate I would like to know the situation ASAP what should I be asking the ped on Sunday. I presume they will be doing a sweat test but from what I have read on this site that will not be a definate answer? I had an amnio at 15 weeks which came back negative (the reason for the amnio was my age I am 38 not any family histories of problems) and had a problem free pregnancy I also have a 3 year old daughter who is healthy.

Any advice anybody can offer will be greatly appreciated.

Thankyou

Liz

 

[liz38]

I live in Australia and have received a telephone call with no further information available to me until Sunday when I have made an appointment to see a ped. I have a four week old son who has a positive heal prick test in the cf area. I didn't know what cf was until I recieved this phone call. I have been browsing through this site and you guys seem to have more information than anywhere else I can find so any of your experiences/information would be appreciated. My son was 8½ pounds born and is putting on plenty of weight each week , I cannot see any signs of illness, he seems to poo a lot but don't all newborns and he is a good sleeper he wakes every 3 hours for a feed but apart from that doesn't spend a lot of time awake and is a happy baby. I live in a remote area of Australia and we are the only state (Northern Territory) that has no cf facilities I have found out. Can anybody tell me what the positive heal prick means - does it mean he is definatley a carrier or has cf? As I am sure you all appreciate I would like to know the situation ASAP what should I be asking the ped on Sunday. I presume they will be doing a sweat test but from what I have read on this site that will not be a definate answer? I had an amnio at 15 weeks which came back negative (the reason for the amnio was my age I am 38 not any family histories of problems) and had a problem free pregnancy I also have a 3 year old daughter who is healthy.

Any advice anybody can offer will be greatly appreciated.

Thankyou

Liz

 

[H2OSPORTSMOM]

Liz, I hear your concern for your son. I am too waiting for gene results on my 18 yo son. I am not certain what a heal test is ? I would ask for sweat test and genetic testing. I cannot offer much more that that, for I am new at this testing thing myself. I can offer you this..... your precious son has a great mother for being concerned enough to do her own research(your daughter too) !!! Hang in there and as the others on this site, who have been dealing with CF for a long time read your thread , you will get lots of support and information. Good luck and God bless you and your family.. Happy Thanksgiving!!!!Sherry

 

[H2OSPORTSMOM]

Liz, I hear your concern for your son. I am too waiting for gene results on my 18 yo son. I am not certain what a heal test is ? I would ask for sweat test and genetic testing. I cannot offer much more that that, for I am new at this testing thing myself. I can offer you this..... your precious son has a great mother for being concerned enough to do her own research(your daughter too) !!! Hang in there and as the others on this site, who have been dealing with CF for a long time read your thread , you will get lots of support and information. Good luck and God bless you and your family.. Happy Thanksgiving!!!!Sherry

 

[H2OSPORTSMOM]

Liz, I hear your concern for your son. I am too waiting for gene results on my 18 yo son. I am not certain what a heal test is ? I would ask for sweat test and genetic testing. I cannot offer much more that that, for I am new at this testing thing myself. I can offer you this..... your precious son has a great mother for being concerned enough to do her own research(your daughter too) !!! Hang in there and as the others on this site, who have been dealing with CF for a long time read your thread , you will get lots of support and information. Good luck and God bless you and your family.. Happy Thanksgiving!!!!Sherry

 

[H2OSPORTSMOM]

Liz, I hear your concern for your son. I am too waiting for gene results on my 18 yo son. I am not certain what a heal test is ? I would ask for sweat test and genetic testing. I cannot offer much more that that, for I am new at this testing thing myself. I can offer you this..... your precious son has a great mother for being concerned enough to do her own research(your daughter too) !!! Hang in there and as the others on this site, who have been dealing with CF for a long time read your thread , you will get lots of support and information. Good luck and God bless you and your family.. Happy Thanksgiving!!!!Sherry

 

[H2OSPORTSMOM]

Liz, I hear your concern for your son. I am too waiting for gene results on my 18 yo son. I am not certain what a heal test is ? I would ask for sweat test and genetic testing. I cannot offer much more that that, for I am new at this testing thing myself. I can offer you this..... your precious son has a great mother for being concerned enough to do her own research(your daughter too) !!! Hang in there and as the others on this site, who have been dealing with CF for a long time read your thread , you will get lots of support and information. Good luck and God bless you and your family.. Happy Thanksgiving!!!!Sherry

 

[liz38]

Thank you for you kind words Sherry, I will explain the heal prick test all newborns in Australia have screening for various conditions via a blood test which is performed 48-72 hours after birth by pricking the heal, it is the results of this which show abnormalities in the cf area of my son.

I wish you well with results for your son.

Liz

 

[liz38]

Thank you for you kind words Sherry, I will explain the heal prick test all newborns in Australia have screening for various conditions via a blood test which is performed 48-72 hours after birth by pricking the heal, it is the results of this which show abnormalities in the cf area of my son.

I wish you well with results for your son.

Liz

 

[liz38]

Thank you for you kind words Sherry, I will explain the heal prick test all newborns in Australia have screening for various conditions via a blood test which is performed 48-72 hours after birth by pricking the heal, it is the results of this which show abnormalities in the cf area of my son.

I wish you well with results for your son.

Liz

 

[liz38]

Thank you for you kind words Sherry, I will explain the heal prick test all newborns in Australia have screening for various conditions via a blood test which is performed 48-72 hours after birth by pricking the heal, it is the results of this which show abnormalities in the cf area of my son.

I wish you well with results for your son.

Liz

 

[liz38]

Thank you for you kind words Sherry, I will explain the heal prick test all newborns in Australia have screening for various conditions via a blood test which is performed 48-72 hours after birth by pricking the heal, it is the results of this which show abnormalities in the cf area of my son.

I wish you well with results for your son.

Liz

 

[Alyssa]

It is my understanding that the heal prick is a screening measure and when it's picks up something you still have a relatively high incidence of it being a false positive. So I think you have a pretty good shot and finding out later that it was all a false alarm, so do be patient (I know easier said than done!)

Sweat tests are terribly frustrating too. If you get a clearly positive number you can move forward with diagnosis, treatment, education and genetic testing -- it sucks but at least you know that you are dealing with CF. Having said that -- many people get stuck in a gray area of high normal and or borderline results and then the doctors does not want to pursue genetic testing and the parents are left wondering if their child has CF or not!

The best way to know for sure is the full genetic testing, but it is expensive and unless you have clear cut results on the sweat test and/or classic CF symptoms sometimes it hard to get anyone to pay for the genetic testing.

Now that I have said all of that stuff above.... I'm still thinking that your kid most likely does not have CF -- here is why I say that (and remember I'm just an experienced mom, but I'm not a doctor or a geneticist - so it's rather off the cuff for me) But it seems to me that if you had the amnio already -- they would have already seen any CF genes when they did that. The heal stick is looking for markers, not actual genes to like I said they do have a false positive possibility.

Please keep us posted and if you do get a sweat test done be sure to ask what the number is - it is important if you need to push them for genetic testing. Also be sure to ask them if the amnio information would have shown CF genes -- I know in the US they do. Seems to me that if they are doing the heal prick for newborns there, the CF genes would have been included in the amnio too.

Best wishes

 

[Alyssa]

It is my understanding that the heal prick is a screening measure and when it's picks up something you still have a relatively high incidence of it being a false positive. So I think you have a pretty good shot and finding out later that it was all a false alarm, so do be patient (I know easier said than done!)

Sweat tests are terribly frustrating too. If you get a clearly positive number you can move forward with diagnosis, treatment, education and genetic testing -- it sucks but at least you know that you are dealing with CF. Having said that -- many people get stuck in a gray area of high normal and or borderline results and then the doctors does not want to pursue genetic testing and the parents are left wondering if their child has CF or not!

The best way to know for sure is the full genetic testing, but it is expensive and unless you have clear cut results on the sweat test and/or classic CF symptoms sometimes it hard to get anyone to pay for the genetic testing.

Now that I have said all of that stuff above.... I'm still thinking that your kid most likely does not have CF -- here is why I say that (and remember I'm just an experienced mom, but I'm not a doctor or a geneticist - so it's rather off the cuff for me) But it seems to me that if you had the amnio already -- they would have already seen any CF genes when they did that. The heal stick is looking for markers, not actual genes to like I said they do have a false positive possibility.

Please keep us posted and if you do get a sweat test done be sure to ask what the number is - it is important if you need to push them for genetic testing. Also be sure to ask them if the amnio information would have shown CF genes -- I know in the US they do. Seems to me that if they are doing the heal prick for newborns there, the CF genes would have been included in the amnio too.

Best wishes

 

[Alyssa]

It is my understanding that the heal prick is a screening measure and when it's picks up something you still have a relatively high incidence of it being a false positive. So I think you have a pretty good shot and finding out later that it was all a false alarm, so do be patient (I know easier said than done!)

Sweat tests are terribly frustrating too. If you get a clearly positive number you can move forward with diagnosis, treatment, education and genetic testing -- it sucks but at least you know that you are dealing with CF. Having said that -- many people get stuck in a gray area of high normal and or borderline results and then the doctors does not want to pursue genetic testing and the parents are left wondering if their child has CF or not!

The best way to know for sure is the full genetic testing, but it is expensive and unless you have clear cut results on the sweat test and/or classic CF symptoms sometimes it hard to get anyone to pay for the genetic testing.

Now that I have said all of that stuff above.... I'm still thinking that your kid most likely does not have CF -- here is why I say that (and remember I'm just an experienced mom, but I'm not a doctor or a geneticist - so it's rather off the cuff for me) But it seems to me that if you had the amnio already -- they would have already seen any CF genes when they did that. The heal stick is looking for markers, not actual genes to like I said they do have a false positive possibility.

Please keep us posted and if you do get a sweat test done be sure to ask what the number is - it is important if you need to push them for genetic testing. Also be sure to ask them if the amnio information would have shown CF genes -- I know in the US they do. Seems to me that if they are doing the heal prick for newborns there, the CF genes would have been included in the amnio too.

Best wishes

 

[Alyssa]

It is my understanding that the heal prick is a screening measure and when it's picks up something you still have a relatively high incidence of it being a false positive. So I think you have a pretty good shot and finding out later that it was all a false alarm, so do be patient (I know easier said than done!)

Sweat tests are terribly frustrating too. If you get a clearly positive number you can move forward with diagnosis, treatment, education and genetic testing -- it sucks but at least you know that you are dealing with CF. Having said that -- many people get stuck in a gray area of high normal and or borderline results and then the doctors does not want to pursue genetic testing and the parents are left wondering if their child has CF or not!

The best way to know for sure is the full genetic testing, but it is expensive and unless you have clear cut results on the sweat test and/or classic CF symptoms sometimes it hard to get anyone to pay for the genetic testing.

Now that I have said all of that stuff above.... I'm still thinking that your kid most likely does not have CF -- here is why I say that (and remember I'm just an experienced mom, but I'm not a doctor or a geneticist - so it's rather off the cuff for me) But it seems to me that if you had the amnio already -- they would have already seen any CF genes when they did that. The heal stick is looking for markers, not actual genes to like I said they do have a false positive possibility.

Please keep us posted and if you do get a sweat test done be sure to ask what the number is - it is important if you need to push them for genetic testing. Also be sure to ask them if the amnio information would have shown CF genes -- I know in the US they do. Seems to me that if they are doing the heal prick for newborns there, the CF genes would have been included in the amnio too.

Best wishes

 

[Alyssa]

It is my understanding that the heal prick is a screening measure and when it's picks up something you still have a relatively high incidence of it being a false positive. So I think you have a pretty good shot and finding out later that it was all a false alarm, so do be patient (I know easier said than done!)

Sweat tests are terribly frustrating too. If you get a clearly positive number you can move forward with diagnosis, treatment, education and genetic testing -- it sucks but at least you know that you are dealing with CF. Having said that -- many people get stuck in a gray area of high normal and or borderline results and then the doctors does not want to pursue genetic testing and the parents are left wondering if their child has CF or not!

The best way to know for sure is the full genetic testing, but it is expensive and unless you have clear cut results on the sweat test and/or classic CF symptoms sometimes it hard to get anyone to pay for the genetic testing.

Now that I have said all of that stuff above.... I'm still thinking that your kid most likely does not have CF -- here is why I say that (and remember I'm just an experienced mom, but I'm not a doctor or a geneticist - so it's rather off the cuff for me) But it seems to me that if you had the amnio already -- they would have already seen any CF genes when they did that. The heal stick is looking for markers, not actual genes to like I said they do have a false positive possibility.

Please keep us posted and if you do get a sweat test done be sure to ask what the number is - it is important if you need to push them for genetic testing. Also be sure to ask them if the amnio information would have shown CF genes -- I know in the US they do. Seems to me that if they are doing the heal prick for newborns there, the CF genes would have been included in the amnio too.

Best wishes