Dr thinks son may have CF

W

welshwitch

Guest
If I were you, I would get him tested (genetically, NOT sweat test) and not worry about it until you get the results back. If he DOES have CF, then you can start learning about the best ways to handle it. And you've found an amazing website to do so!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
W

welshwitch

Guest
If I were you, I would get him tested (genetically, NOT sweat test) and not worry about it until you get the results back. If he DOES have CF, then you can start learning about the best ways to handle it. And you've found an amazing website to do so!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
W

welshwitch

Guest
If I were you, I would get him tested (genetically, NOT sweat test) and not worry about it until you get the results back. If he DOES have CF, then you can start learning about the best ways to handle it. And you've found an amazing website to do so!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
W

welshwitch

Guest
If I were you, I would get him tested (genetically, NOT sweat test) and not worry about it until you get the results back. If he DOES have CF, then you can start learning about the best ways to handle it. And you've found an amazing website to do so!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
W

welshwitch

Guest
If I were you, I would get him tested (genetically, NOT sweat test) and not worry about it until you get the results back. If he DOES have CF, then you can start learning about the best ways to handle it. And you've found an amazing website to do so!!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

JORDYSMOM

New member
Hi, and welcome to the site. My son wasn't dx until he was 15 years old. He was never under weight, (75th percentile) and he didn't present with glaringly obvious symptoms. As he ages, more symptoms show up, because CF is a progressive disease. I say get your child tested. So many people have to fight doctors to do it. You are fortunate to have one who is offering it. If there is one thing I've learned about CF in the past 2 years, it is that it is not black & white. There are many shades of grey. I wish you the best.

Stacey
 

JORDYSMOM

New member
Hi, and welcome to the site. My son wasn't dx until he was 15 years old. He was never under weight, (75th percentile) and he didn't present with glaringly obvious symptoms. As he ages, more symptoms show up, because CF is a progressive disease. I say get your child tested. So many people have to fight doctors to do it. You are fortunate to have one who is offering it. If there is one thing I've learned about CF in the past 2 years, it is that it is not black & white. There are many shades of grey. I wish you the best.

Stacey
 

JORDYSMOM

New member
Hi, and welcome to the site. My son wasn't dx until he was 15 years old. He was never under weight, (75th percentile) and he didn't present with glaringly obvious symptoms. As he ages, more symptoms show up, because CF is a progressive disease. I say get your child tested. So many people have to fight doctors to do it. You are fortunate to have one who is offering it. If there is one thing I've learned about CF in the past 2 years, it is that it is not black & white. There are many shades of grey. I wish you the best.

Stacey
 

JORDYSMOM

New member
Hi, and welcome to the site. My son wasn't dx until he was 15 years old. He was never under weight, (75th percentile) and he didn't present with glaringly obvious symptoms. As he ages, more symptoms show up, because CF is a progressive disease. I say get your child tested. So many people have to fight doctors to do it. You are fortunate to have one who is offering it. If there is one thing I've learned about CF in the past 2 years, it is that it is not black & white. There are many shades of grey. I wish you the best.

Stacey
 

JORDYSMOM

New member
Hi, and welcome to the site. My son wasn't dx until he was 15 years old. He was never under weight, (75th percentile) and he didn't present with glaringly obvious symptoms. As he ages, more symptoms show up, because CF is a progressive disease. I say get your child tested. So many people have to fight doctors to do it. You are fortunate to have one who is offering it. If there is one thing I've learned about CF in the past 2 years, it is that it is not black & white. There are many shades of grey. I wish you the best.

Stacey
 

Alyssa

New member
You can stop licking your child :)

It will not guarantee that he does not have CF. Even if he has a low sweat test number (and therefore does not taste salty) it is still very possible to have CF.

The "tasting salty" is just a rule of thumb - something that people notice, especially before we had more medical testing at our disposal, so it's one of those things you will read about as a classic indicator, but don't hang your hat on it meaning that your child doesn't have CF because he doesn't taste salty. If someone does taste salty, then chances are more likely that they will have a very high sweat test (meaning more of a dysfunction in the sweat chloride channel) Tasting more or less salty or have more or less proper functioning does not correlated to the severity of the disease and/or is not proof of not having CF.

I agree with the other posters -- this does sound like it <i>could</i> be CF. You should really follow up with testing - both sweat testing (just because most every doctor has to start with that) <b>AND</b> genetic testing, because it really is the most accurate way to test for sure... especially if it sounds like his sweat test numbers are not going to be very high (tasting salty)

Another word of caution about genetic testing... be sure to insist on complete testing. There are approximately 1580 CF genes identified to date. Often times the doctor and/or insurance company only want to test for 12, or 89..... this makes absolutely no sense! You are hardly eliminating anything, by leaving that many genes untested. If they do send him for genetic testing, be sure to ask how many they are testing for... chances are the answer is going to be 89.....it's much cheaper that way, problem is, if it comes back negative, you really don't know for sure because they never even looked for the other 1,491 genes!

Also be sure to ask for the sweat test number, don't just settle for positive or negative... my daughter went 8 years with the wrong diagnosis because she was 2 points under, and therefore we were told she was "negative" .... see my full story on my blog.... there are many people here who test out "normal" but genetic testing finds two genes.

Sorry to come on so strongly, but I just don't want you to get misdiagnosed or go undiagnosed any longer than necessary -- we have so many parents come one here who report they have struggled with health issues for years only to find out they could have been getting the correct treatment, had they know their child had CF earlier. Get him tested so you can know for sure - it will help him out tremendously to get the right treatment. If it is not CF, you can put the issue to rest and move on to find out what the cause of his problems are.

Best wishes... please keep us posted.
 

Alyssa

New member
You can stop licking your child :)

It will not guarantee that he does not have CF. Even if he has a low sweat test number (and therefore does not taste salty) it is still very possible to have CF.

The "tasting salty" is just a rule of thumb - something that people notice, especially before we had more medical testing at our disposal, so it's one of those things you will read about as a classic indicator, but don't hang your hat on it meaning that your child doesn't have CF because he doesn't taste salty. If someone does taste salty, then chances are more likely that they will have a very high sweat test (meaning more of a dysfunction in the sweat chloride channel) Tasting more or less salty or have more or less proper functioning does not correlated to the severity of the disease and/or is not proof of not having CF.

I agree with the other posters -- this does sound like it <i>could</i> be CF. You should really follow up with testing - both sweat testing (just because most every doctor has to start with that) <b>AND</b> genetic testing, because it really is the most accurate way to test for sure... especially if it sounds like his sweat test numbers are not going to be very high (tasting salty)

Another word of caution about genetic testing... be sure to insist on complete testing. There are approximately 1580 CF genes identified to date. Often times the doctor and/or insurance company only want to test for 12, or 89..... this makes absolutely no sense! You are hardly eliminating anything, by leaving that many genes untested. If they do send him for genetic testing, be sure to ask how many they are testing for... chances are the answer is going to be 89.....it's much cheaper that way, problem is, if it comes back negative, you really don't know for sure because they never even looked for the other 1,491 genes!

Also be sure to ask for the sweat test number, don't just settle for positive or negative... my daughter went 8 years with the wrong diagnosis because she was 2 points under, and therefore we were told she was "negative" .... see my full story on my blog.... there are many people here who test out "normal" but genetic testing finds two genes.

Sorry to come on so strongly, but I just don't want you to get misdiagnosed or go undiagnosed any longer than necessary -- we have so many parents come one here who report they have struggled with health issues for years only to find out they could have been getting the correct treatment, had they know their child had CF earlier. Get him tested so you can know for sure - it will help him out tremendously to get the right treatment. If it is not CF, you can put the issue to rest and move on to find out what the cause of his problems are.

Best wishes... please keep us posted.
 

Alyssa

New member
You can stop licking your child :)

It will not guarantee that he does not have CF. Even if he has a low sweat test number (and therefore does not taste salty) it is still very possible to have CF.

The "tasting salty" is just a rule of thumb - something that people notice, especially before we had more medical testing at our disposal, so it's one of those things you will read about as a classic indicator, but don't hang your hat on it meaning that your child doesn't have CF because he doesn't taste salty. If someone does taste salty, then chances are more likely that they will have a very high sweat test (meaning more of a dysfunction in the sweat chloride channel) Tasting more or less salty or have more or less proper functioning does not correlated to the severity of the disease and/or is not proof of not having CF.

I agree with the other posters -- this does sound like it <i>could</i> be CF. You should really follow up with testing - both sweat testing (just because most every doctor has to start with that) <b>AND</b> genetic testing, because it really is the most accurate way to test for sure... especially if it sounds like his sweat test numbers are not going to be very high (tasting salty)

Another word of caution about genetic testing... be sure to insist on complete testing. There are approximately 1580 CF genes identified to date. Often times the doctor and/or insurance company only want to test for 12, or 89..... this makes absolutely no sense! You are hardly eliminating anything, by leaving that many genes untested. If they do send him for genetic testing, be sure to ask how many they are testing for... chances are the answer is going to be 89.....it's much cheaper that way, problem is, if it comes back negative, you really don't know for sure because they never even looked for the other 1,491 genes!

Also be sure to ask for the sweat test number, don't just settle for positive or negative... my daughter went 8 years with the wrong diagnosis because she was 2 points under, and therefore we were told she was "negative" .... see my full story on my blog.... there are many people here who test out "normal" but genetic testing finds two genes.

Sorry to come on so strongly, but I just don't want you to get misdiagnosed or go undiagnosed any longer than necessary -- we have so many parents come one here who report they have struggled with health issues for years only to find out they could have been getting the correct treatment, had they know their child had CF earlier. Get him tested so you can know for sure - it will help him out tremendously to get the right treatment. If it is not CF, you can put the issue to rest and move on to find out what the cause of his problems are.

Best wishes... please keep us posted.
 

Alyssa

New member
You can stop licking your child :)

It will not guarantee that he does not have CF. Even if he has a low sweat test number (and therefore does not taste salty) it is still very possible to have CF.

The "tasting salty" is just a rule of thumb - something that people notice, especially before we had more medical testing at our disposal, so it's one of those things you will read about as a classic indicator, but don't hang your hat on it meaning that your child doesn't have CF because he doesn't taste salty. If someone does taste salty, then chances are more likely that they will have a very high sweat test (meaning more of a dysfunction in the sweat chloride channel) Tasting more or less salty or have more or less proper functioning does not correlated to the severity of the disease and/or is not proof of not having CF.

I agree with the other posters -- this does sound like it <i>could</i> be CF. You should really follow up with testing - both sweat testing (just because most every doctor has to start with that) <b>AND</b> genetic testing, because it really is the most accurate way to test for sure... especially if it sounds like his sweat test numbers are not going to be very high (tasting salty)

Another word of caution about genetic testing... be sure to insist on complete testing. There are approximately 1580 CF genes identified to date. Often times the doctor and/or insurance company only want to test for 12, or 89..... this makes absolutely no sense! You are hardly eliminating anything, by leaving that many genes untested. If they do send him for genetic testing, be sure to ask how many they are testing for... chances are the answer is going to be 89.....it's much cheaper that way, problem is, if it comes back negative, you really don't know for sure because they never even looked for the other 1,491 genes!

Also be sure to ask for the sweat test number, don't just settle for positive or negative... my daughter went 8 years with the wrong diagnosis because she was 2 points under, and therefore we were told she was "negative" .... see my full story on my blog.... there are many people here who test out "normal" but genetic testing finds two genes.

Sorry to come on so strongly, but I just don't want you to get misdiagnosed or go undiagnosed any longer than necessary -- we have so many parents come one here who report they have struggled with health issues for years only to find out they could have been getting the correct treatment, had they know their child had CF earlier. Get him tested so you can know for sure - it will help him out tremendously to get the right treatment. If it is not CF, you can put the issue to rest and move on to find out what the cause of his problems are.

Best wishes... please keep us posted.
 

Alyssa

New member
You can stop licking your child :)

It will not guarantee that he does not have CF. Even if he has a low sweat test number (and therefore does not taste salty) it is still very possible to have CF.

The "tasting salty" is just a rule of thumb - something that people notice, especially before we had more medical testing at our disposal, so it's one of those things you will read about as a classic indicator, but don't hang your hat on it meaning that your child doesn't have CF because he doesn't taste salty. If someone does taste salty, then chances are more likely that they will have a very high sweat test (meaning more of a dysfunction in the sweat chloride channel) Tasting more or less salty or have more or less proper functioning does not correlated to the severity of the disease and/or is not proof of not having CF.

I agree with the other posters -- this does sound like it <i>could</i> be CF. You should really follow up with testing - both sweat testing (just because most every doctor has to start with that) <b>AND</b> genetic testing, because it really is the most accurate way to test for sure... especially if it sounds like his sweat test numbers are not going to be very high (tasting salty)

Another word of caution about genetic testing... be sure to insist on complete testing. There are approximately 1580 CF genes identified to date. Often times the doctor and/or insurance company only want to test for 12, or 89..... this makes absolutely no sense! You are hardly eliminating anything, by leaving that many genes untested. If they do send him for genetic testing, be sure to ask how many they are testing for... chances are the answer is going to be 89.....it's much cheaper that way, problem is, if it comes back negative, you really don't know for sure because they never even looked for the other 1,491 genes!

Also be sure to ask for the sweat test number, don't just settle for positive or negative... my daughter went 8 years with the wrong diagnosis because she was 2 points under, and therefore we were told she was "negative" .... see my full story on my blog.... there are many people here who test out "normal" but genetic testing finds two genes.

Sorry to come on so strongly, but I just don't want you to get misdiagnosed or go undiagnosed any longer than necessary -- we have so many parents come one here who report they have struggled with health issues for years only to find out they could have been getting the correct treatment, had they know their child had CF earlier. Get him tested so you can know for sure - it will help him out tremendously to get the right treatment. If it is not CF, you can put the issue to rest and move on to find out what the cause of his problems are.

Best wishes... please keep us posted.
 

jjwhite

New member
Thanks so much for the input, I really appreciate it. I'll try to stop worrying and licking my child, lol. I'll let you know how we make out when we go for the sweat test and will also ask for the genetic testing as well. Take care.
 

jjwhite

New member
Thanks so much for the input, I really appreciate it. I'll try to stop worrying and licking my child, lol. I'll let you know how we make out when we go for the sweat test and will also ask for the genetic testing as well. Take care.
 

jjwhite

New member
Thanks so much for the input, I really appreciate it. I'll try to stop worrying and licking my child, lol. I'll let you know how we make out when we go for the sweat test and will also ask for the genetic testing as well. Take care.
 

jjwhite

New member
Thanks so much for the input, I really appreciate it. I'll try to stop worrying and licking my child, lol. I'll let you know how we make out when we go for the sweat test and will also ask for the genetic testing as well. Take care.
 

jjwhite

New member
Thanks so much for the input, I really appreciate it. I'll try to stop worrying and licking my child, lol. I'll let you know how we make out when we go for the sweat test and will also ask for the genetic testing as well. Take care.
 
Top