Positive Heal Prick Test - any information

[wuffles]

Hi Liz

I am a 23 year old with CF originally from Brisbane (now in Canberra). I was diagnosed through the heel prick (Guthrie) test then a sweat test.

Have you tried calling Cystic Fibrosis Australia? Their number is 1800 2328 23 or 02 9878 5250. I think they will be able to give you some information about the Guthrie test as well as services available in the NT. A lot of CF patients are able to visit pulmonary specialists rather than 'CF doctors'. There may be a doctor in the NT that sees a few CF patients. I know my doctor in Canberra sees quite a few of us but it is not a CF clinic. I'm not positive, but your closest CF doctors would probably be in Northern QLD.

Good luck and try not to panic! Guthrie can produce false negatives or simply indicate that he is a symptomless carrier. If further testing does come up negative, I'd still be sure to keep an eye on any symptoms he may have as even genetic testing is far from flawless.

Also remember, if he is diagnosed, that at least it was caught early. Getting proper treatment early is a really important part of keeping kids with CF healthy.

 

[wuffles]

Hi Liz

I am a 23 year old with CF originally from Brisbane (now in Canberra). I was diagnosed through the heel prick (Guthrie) test then a sweat test.

Have you tried calling Cystic Fibrosis Australia? Their number is 1800 2328 23 or 02 9878 5250. I think they will be able to give you some information about the Guthrie test as well as services available in the NT. A lot of CF patients are able to visit pulmonary specialists rather than 'CF doctors'. There may be a doctor in the NT that sees a few CF patients. I know my doctor in Canberra sees quite a few of us but it is not a CF clinic. I'm not positive, but your closest CF doctors would probably be in Northern QLD.

Good luck and try not to panic! Guthrie can produce false negatives or simply indicate that he is a symptomless carrier. If further testing does come up negative, I'd still be sure to keep an eye on any symptoms he may have as even genetic testing is far from flawless.

Also remember, if he is diagnosed, that at least it was caught early. Getting proper treatment early is a really important part of keeping kids with CF healthy.

 

[wuffles]

Hi Liz

I am a 23 year old with CF originally from Brisbane (now in Canberra). I was diagnosed through the heel prick (Guthrie) test then a sweat test.

Have you tried calling Cystic Fibrosis Australia? Their number is 1800 2328 23 or 02 9878 5250. I think they will be able to give you some information about the Guthrie test as well as services available in the NT. A lot of CF patients are able to visit pulmonary specialists rather than 'CF doctors'. There may be a doctor in the NT that sees a few CF patients. I know my doctor in Canberra sees quite a few of us but it is not a CF clinic. I'm not positive, but your closest CF doctors would probably be in Northern QLD.

Good luck and try not to panic! Guthrie can produce false negatives or simply indicate that he is a symptomless carrier. If further testing does come up negative, I'd still be sure to keep an eye on any symptoms he may have as even genetic testing is far from flawless.

Also remember, if he is diagnosed, that at least it was caught early. Getting proper treatment early is a really important part of keeping kids with CF healthy.

 

[wuffles]

Hi Liz

I am a 23 year old with CF originally from Brisbane (now in Canberra). I was diagnosed through the heel prick (Guthrie) test then a sweat test.

Have you tried calling Cystic Fibrosis Australia? Their number is 1800 2328 23 or 02 9878 5250. I think they will be able to give you some information about the Guthrie test as well as services available in the NT. A lot of CF patients are able to visit pulmonary specialists rather than 'CF doctors'. There may be a doctor in the NT that sees a few CF patients. I know my doctor in Canberra sees quite a few of us but it is not a CF clinic. I'm not positive, but your closest CF doctors would probably be in Northern QLD.

Good luck and try not to panic! Guthrie can produce false negatives or simply indicate that he is a symptomless carrier. If further testing does come up negative, I'd still be sure to keep an eye on any symptoms he may have as even genetic testing is far from flawless.

Also remember, if he is diagnosed, that at least it was caught early. Getting proper treatment early is a really important part of keeping kids with CF healthy.

 

[wuffles]

Hi Liz

I am a 23 year old with CF originally from Brisbane (now in Canberra). I was diagnosed through the heel prick (Guthrie) test then a sweat test.

Have you tried calling Cystic Fibrosis Australia? Their number is 1800 2328 23 or 02 9878 5250. I think they will be able to give you some information about the Guthrie test as well as services available in the NT. A lot of CF patients are able to visit pulmonary specialists rather than 'CF doctors'. There may be a doctor in the NT that sees a few CF patients. I know my doctor in Canberra sees quite a few of us but it is not a CF clinic. I'm not positive, but your closest CF doctors would probably be in Northern QLD.

Good luck and try not to panic! Guthrie can produce false negatives or simply indicate that he is a symptomless carrier. If further testing does come up negative, I'd still be sure to keep an eye on any symptoms he may have as even genetic testing is far from flawless.

Also remember, if he is diagnosed, that at least it was caught early. Getting proper treatment early is a really important part of keeping kids with CF healthy.

 

[liz38]

I have visited the pediatrician and she informed me that my son is a carrier of the Df508 but they have not found another mutation from the heal prick test. I have to wait until Tuesday 4 December to have a sweat test (as he needs to be 6 weeks old) and myself and my husband have both given blood to be tested to see who is a carrier.

Another interesting peice of information the pediatrican told me is that even though I had an amnio during my pregnancy it would not have been tested for CF unless I specifically requested, I found this a little bizzare as I presumed I would be screened, whilst pregnant, for a condition they screen for at birth, anyway I'll leave that debate until later.

So from what I understand now there is only a slight chance of my son having CF it is more likely he is just a carrier. Has anybody else been in this position any advice would be greatly appreciated.

Liz

 

[liz38]

I have visited the pediatrician and she informed me that my son is a carrier of the Df508 but they have not found another mutation from the heal prick test. I have to wait until Tuesday 4 December to have a sweat test (as he needs to be 6 weeks old) and myself and my husband have both given blood to be tested to see who is a carrier.

Another interesting peice of information the pediatrican told me is that even though I had an amnio during my pregnancy it would not have been tested for CF unless I specifically requested, I found this a little bizzare as I presumed I would be screened, whilst pregnant, for a condition they screen for at birth, anyway I'll leave that debate until later.

So from what I understand now there is only a slight chance of my son having CF it is more likely he is just a carrier. Has anybody else been in this position any advice would be greatly appreciated.

Liz

 

[liz38]

I have visited the pediatrician and she informed me that my son is a carrier of the Df508 but they have not found another mutation from the heal prick test. I have to wait until Tuesday 4 December to have a sweat test (as he needs to be 6 weeks old) and myself and my husband have both given blood to be tested to see who is a carrier.

Another interesting peice of information the pediatrican told me is that even though I had an amnio during my pregnancy it would not have been tested for CF unless I specifically requested, I found this a little bizzare as I presumed I would be screened, whilst pregnant, for a condition they screen for at birth, anyway I'll leave that debate until later.

So from what I understand now there is only a slight chance of my son having CF it is more likely he is just a carrier. Has anybody else been in this position any advice would be greatly appreciated.

Liz

 

[liz38]

I have visited the pediatrician and she informed me that my son is a carrier of the Df508 but they have not found another mutation from the heal prick test. I have to wait until Tuesday 4 December to have a sweat test (as he needs to be 6 weeks old) and myself and my husband have both given blood to be tested to see who is a carrier.

Another interesting peice of information the pediatrican told me is that even though I had an amnio during my pregnancy it would not have been tested for CF unless I specifically requested, I found this a little bizzare as I presumed I would be screened, whilst pregnant, for a condition they screen for at birth, anyway I'll leave that debate until later.

So from what I understand now there is only a slight chance of my son having CF it is more likely he is just a carrier. Has anybody else been in this position any advice would be greatly appreciated.

Liz

 

[liz38]

I have visited the pediatrician and she informed me that my son is a carrier of the Df508 but they have not found another mutation from the heal prick test. I have to wait until Tuesday 4 December to have a sweat test (as he needs to be 6 weeks old) and myself and my husband have both given blood to be tested to see who is a carrier.

Another interesting peice of information the pediatrican told me is that even though I had an amnio during my pregnancy it would not have been tested for CF unless I specifically requested, I found this a little bizzare as I presumed I would be screened, whilst pregnant, for a condition they screen for at birth, anyway I'll leave that debate until later.

So from what I understand now there is only a slight chance of my son having CF it is more likely he is just a carrier. Has anybody else been in this position any advice would be greatly appreciated.

Liz

 

[TonyaH]

Hi Liz,

I think you have every reason to stay very positive right now that your son is a carrier. Yes, there is a chance that another mutation could be found, but you have come to the right place to prepare for that, should it be the case.

If your son is a carrier, which is probable at this point, you are fortunate to know at such an early age. This will help your son later in life when he begins a family. This site is a wealth of information and we are all happy to help in any way we can. Please keep in touch with us to let us know how further testing goes. If your son does in fact have CF, we will be here to help you every step of the way!

 

[TonyaH]

Hi Liz,

I think you have every reason to stay very positive right now that your son is a carrier. Yes, there is a chance that another mutation could be found, but you have come to the right place to prepare for that, should it be the case.

If your son is a carrier, which is probable at this point, you are fortunate to know at such an early age. This will help your son later in life when he begins a family. This site is a wealth of information and we are all happy to help in any way we can. Please keep in touch with us to let us know how further testing goes. If your son does in fact have CF, we will be here to help you every step of the way!

 

[TonyaH]

Hi Liz,

I think you have every reason to stay very positive right now that your son is a carrier. Yes, there is a chance that another mutation could be found, but you have come to the right place to prepare for that, should it be the case.

If your son is a carrier, which is probable at this point, you are fortunate to know at such an early age. This will help your son later in life when he begins a family. This site is a wealth of information and we are all happy to help in any way we can. Please keep in touch with us to let us know how further testing goes. If your son does in fact have CF, we will be here to help you every step of the way!

 

[TonyaH]

Hi Liz,

I think you have every reason to stay very positive right now that your son is a carrier. Yes, there is a chance that another mutation could be found, but you have come to the right place to prepare for that, should it be the case.

If your son is a carrier, which is probable at this point, you are fortunate to know at such an early age. This will help your son later in life when he begins a family. This site is a wealth of information and we are all happy to help in any way we can. Please keep in touch with us to let us know how further testing goes. If your son does in fact have CF, we will be here to help you every step of the way!

 

[TonyaH]

Hi Liz,

I think you have every reason to stay very positive right now that your son is a carrier. Yes, there is a chance that another mutation could be found, but you have come to the right place to prepare for that, should it be the case.

If your son is a carrier, which is probable at this point, you are fortunate to know at such an early age. This will help your son later in life when he begins a family. This site is a wealth of information and we are all happy to help in any way we can. Please keep in touch with us to let us know how further testing goes. If your son does in fact have CF, we will be here to help you every step of the way!

 

[liz38]

Well I have good news for me, my son had his sweat test and the result was a negative 15.

I would like to thank everybody on this site though for all the information I have obtained which enabled me to go to the sweat test and speak to doctors well informed of CF as oppose to taking what they told me as gospel, for example without this site I would not have asked to know the actual result I would have taken their diagnosis of negative.

I am happy and confidant that my son is only a carrier as he has no symptons and a sweat test result of 15. Please anybody who has any views on this let me know.

Once again thankyou for being here.

Liz

 

[liz38]

Well I have good news for me, my son had his sweat test and the result was a negative 15.

I would like to thank everybody on this site though for all the information I have obtained which enabled me to go to the sweat test and speak to doctors well informed of CF as oppose to taking what they told me as gospel, for example without this site I would not have asked to know the actual result I would have taken their diagnosis of negative.

I am happy and confidant that my son is only a carrier as he has no symptons and a sweat test result of 15. Please anybody who has any views on this let me know.

Once again thankyou for being here.

Liz

 

[liz38]

Well I have good news for me, my son had his sweat test and the result was a negative 15.

I would like to thank everybody on this site though for all the information I have obtained which enabled me to go to the sweat test and speak to doctors well informed of CF as oppose to taking what they told me as gospel, for example without this site I would not have asked to know the actual result I would have taken their diagnosis of negative.

I am happy and confidant that my son is only a carrier as he has no symptons and a sweat test result of 15. Please anybody who has any views on this let me know.

Once again thankyou for being here.

Liz

 

[liz38]

Well I have good news for me, my son had his sweat test and the result was a negative 15.

I would like to thank everybody on this site though for all the information I have obtained which enabled me to go to the sweat test and speak to doctors well informed of CF as oppose to taking what they told me as gospel, for example without this site I would not have asked to know the actual result I would have taken their diagnosis of negative.

I am happy and confidant that my son is only a carrier as he has no symptons and a sweat test result of 15. Please anybody who has any views on this let me know.

Once again thankyou for being here.

Liz

 

[liz38]

Well I have good news for me, my son had his sweat test and the result was a negative 15.

I would like to thank everybody on this site though for all the information I have obtained which enabled me to go to the sweat test and speak to doctors well informed of CF as oppose to taking what they told me as gospel, for example without this site I would not have asked to know the actual result I would have taken their diagnosis of negative.

I am happy and confidant that my son is only a carrier as he has no symptons and a sweat test result of 15. Please anybody who has any views on this let me know.

Once again thankyou for being here.

Liz