could this be CF???

JazzysMom · Jun 23, 2007

CF & developmental issues do not go hand in hand as a classic sign. There are some that might have issues, but there is usually something else invovled. IF its connected it would be rare & often is do to poor nutrition etc.

I suggest you tell him from your research and conversing with people who have CF or have CF children that you want the sweat test done, BUT you also want the extended panel of the genetic testing done. The extended panel would test for all known mutations of CF. Due to healthcare coverage etc I realize that you might have to take it step by step and cant get it all done at the same time. They might even want to start with the basic panel of mutation testing which would be the 30 most common out of the 1500 known. Genetic results take longer to get back then sweat test results.

Reinforce that you are aware how important early diagnoses & treatment is for CF so if there is a possibility of him having it, you want to know NOW.

IF you have a doctor that is a difficult one to persuade....just remember all of us here on the forum (which offers someone from just about all around the world) who knows the importance of this testing. If you need more encouragement or reinforcement to push for the needed testing just let us know!

JazzysMom · Jun 23, 2007

CF & developmental issues do not go hand in hand as a classic sign. There are some that might have issues, but there is usually something else invovled. IF its connected it would be rare & often is do to poor nutrition etc.

I suggest you tell him from your research and conversing with people who have CF or have CF children that you want the sweat test done, BUT you also want the extended panel of the genetic testing done. The extended panel would test for all known mutations of CF. Due to healthcare coverage etc I realize that you might have to take it step by step and cant get it all done at the same time. They might even want to start with the basic panel of mutation testing which would be the 30 most common out of the 1500 known. Genetic results take longer to get back then sweat test results.

Reinforce that you are aware how important early diagnoses & treatment is for CF so if there is a possibility of him having it, you want to know NOW.

IF you have a doctor that is a difficult one to persuade....just remember all of us here on the forum (which offers someone from just about all around the world) who knows the importance of this testing. If you need more encouragement or reinforcement to push for the needed testing just let us know!

JazzysMom · Jun 23, 2007

CF & developmental issues do not go hand in hand as a classic sign. There are some that might have issues, but there is usually something else invovled. IF its connected it would be rare & often is do to poor nutrition etc.

I suggest you tell him from your research and conversing with people who have CF or have CF children that you want the sweat test done, BUT you also want the extended panel of the genetic testing done. The extended panel would test for all known mutations of CF. Due to healthcare coverage etc I realize that you might have to take it step by step and cant get it all done at the same time. They might even want to start with the basic panel of mutation testing which would be the 30 most common out of the 1500 known. Genetic results take longer to get back then sweat test results.

Reinforce that you are aware how important early diagnoses & treatment is for CF so if there is a possibility of him having it, you want to know NOW.

IF you have a doctor that is a difficult one to persuade....just remember all of us here on the forum (which offers someone from just about all around the world) who knows the importance of this testing. If you need more encouragement or reinforcement to push for the needed testing just let us know!

JazzysMom · Jun 23, 2007

CF & developmental issues do not go hand in hand as a classic sign. There are some that might have issues, but there is usually something else invovled. IF its connected it would be rare & often is do to poor nutrition etc.

I suggest you tell him from your research and conversing with people who have CF or have CF children that you want the sweat test done, BUT you also want the extended panel of the genetic testing done. The extended panel would test for all known mutations of CF. Due to healthcare coverage etc I realize that you might have to take it step by step and cant get it all done at the same time. They might even want to start with the basic panel of mutation testing which would be the 30 most common out of the 1500 known. Genetic results take longer to get back then sweat test results.

Reinforce that you are aware how important early diagnoses & treatment is for CF so if there is a possibility of him having it, you want to know NOW.

IF you have a doctor that is a difficult one to persuade....just remember all of us here on the forum (which offers someone from just about all around the world) who knows the importance of this testing. If you need more encouragement or reinforcement to push for the needed testing just let us know!

wuffles · Jun 24, 2007

Try calling your local CF association, they might have some ideas for you and are great for support. You can find details at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.org.au/states/orgs/
">http://www.cysticfibrosis.org.au/states/orgs/
</a>
GPs may also be able to refer you to somewhere to get a sweat test done. I'm not sure on that, but I know they can refer your baby for genetic testing. There is not a total screen available in Australia but they will test for 8 mutations quite easily, and that could be a start. Sometimes GPs are more willing to refer for these tests than various specialists, especially if you have researched your position and can justify yourself -- you have done that in your post so you shouldn't have trouble.

Good luck!

wuffles · Jun 24, 2007

Try calling your local CF association, they might have some ideas for you and are great for support. You can find details at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.org.au/states/orgs/
">http://www.cysticfibrosis.org.au/states/orgs/
</a>
GPs may also be able to refer you to somewhere to get a sweat test done. I'm not sure on that, but I know they can refer your baby for genetic testing. There is not a total screen available in Australia but they will test for 8 mutations quite easily, and that could be a start. Sometimes GPs are more willing to refer for these tests than various specialists, especially if you have researched your position and can justify yourself -- you have done that in your post so you shouldn't have trouble.

Good luck!

wuffles · Jun 24, 2007

Try calling your local CF association, they might have some ideas for you and are great for support. You can find details at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.org.au/states/orgs/
">http://www.cysticfibrosis.org.au/states/orgs/
</a>
GPs may also be able to refer you to somewhere to get a sweat test done. I'm not sure on that, but I know they can refer your baby for genetic testing. There is not a total screen available in Australia but they will test for 8 mutations quite easily, and that could be a start. Sometimes GPs are more willing to refer for these tests than various specialists, especially if you have researched your position and can justify yourself -- you have done that in your post so you shouldn't have trouble.

Good luck!

wuffles · Jun 24, 2007

Try calling your local CF association, they might have some ideas for you and are great for support. You can find details at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.org.au/states/orgs/
">http://www.cysticfibrosis.org.au/states/orgs/
</a>
GPs may also be able to refer you to somewhere to get a sweat test done. I'm not sure on that, but I know they can refer your baby for genetic testing. There is not a total screen available in Australia but they will test for 8 mutations quite easily, and that could be a start. Sometimes GPs are more willing to refer for these tests than various specialists, especially if you have researched your position and can justify yourself -- you have done that in your post so you shouldn't have trouble.

Good luck!

wuffles · Jun 24, 2007

Try calling your local CF association, they might have some ideas for you and are great for support. You can find details at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.org.au/states/orgs/
">http://www.cysticfibrosis.org.au/states/orgs/
</a>
GPs may also be able to refer you to somewhere to get a sweat test done. I'm not sure on that, but I know they can refer your baby for genetic testing. There is not a total screen available in Australia but they will test for 8 mutations quite easily, and that could be a start. Sometimes GPs are more willing to refer for these tests than various specialists, especially if you have researched your position and can justify yourself -- you have done that in your post so you shouldn't have trouble.

Good luck!

wuffles · Jun 24, 2007

Try calling your local CF association, they might have some ideas for you and are great for support. You can find details at: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.org.au/states/orgs/
">http://www.cysticfibrosis.org.au/states/orgs/
</a>
GPs may also be able to refer you to somewhere to get a sweat test done. I'm not sure on that, but I know they can refer your baby for genetic testing. There is not a total screen available in Australia but they will test for 8 mutations quite easily, and that could be a start. Sometimes GPs are more willing to refer for these tests than various specialists, especially if you have researched your position and can justify yourself -- you have done that in your post so you shouldn't have trouble.

Good luck!

Alyssa · Jun 24, 2007