Can someone pls tell me the process for testing?

[wade9494]

I was just told my 4 month old son needs to be tested for CF. We're hoping to get in early next week. The Dr didnt give us much info...maybe not to frighten us. Can someone please tellme what the process is for testing and how long it takes to get results?
Thanks so much
Wade Smith

 

[wade9494]

I was just told my 4 month old son needs to be tested for CF. We're hoping to get in early next week. The Dr didnt give us much info...maybe not to frighten us. Can someone please tellme what the process is for testing and how long it takes to get results?
Thanks so much
Wade Smith

 

[wade9494]

I was just told my 4 month old son needs to be tested for CF. We're hoping to get in early next week. The Dr didnt give us much info...maybe not to frighten us. Can someone please tellme what the process is for testing and how long it takes to get results?
Thanks so much
Wade Smith

 

[wade9494]

I was just told my 4 month old son needs to be tested for CF. We're hoping to get in early next week. The Dr didnt give us much info...maybe not to frighten us. Can someone please tellme what the process is for testing and how long it takes to get results?
Thanks so much
Wade Smith

 

[wade9494]

I was just told my 4 month old son needs to be tested for CF. We're hoping to get in early next week. The Dr didnt give us much info...maybe not to frighten us. Can someone please tellme what the process is for testing and how long it takes to get results?
Thanks so much
Wade Smith

 

[JORDYSMOM]

Hi Wade, and welcome. First of all, congrats on your son.

Usually, the testing process starts off with one or two sweat tests, and then, depending on those results, they draw blood for a genetic test. There is a lot of controversy over whether sweat tests are even accurate, but most insurance companies require them before they will pay for the genetic test. In the genetic test, they are looking for known CF gene mutations. There are over 1500 of them, so if you get the genetic testing, please make sure your doctor orders the full panel.

Does your son have symptoms of CF, or is this from a newborn screening? I'm just curious. I wish you the best. Please let us know what you find out.

Stacey

 

[JORDYSMOM]

Hi Wade, and welcome. First of all, congrats on your son.

Usually, the testing process starts off with one or two sweat tests, and then, depending on those results, they draw blood for a genetic test. There is a lot of controversy over whether sweat tests are even accurate, but most insurance companies require them before they will pay for the genetic test. In the genetic test, they are looking for known CF gene mutations. There are over 1500 of them, so if you get the genetic testing, please make sure your doctor orders the full panel.

Does your son have symptoms of CF, or is this from a newborn screening? I'm just curious. I wish you the best. Please let us know what you find out.

Stacey

 

[JORDYSMOM]

Hi Wade, and welcome. First of all, congrats on your son.

Usually, the testing process starts off with one or two sweat tests, and then, depending on those results, they draw blood for a genetic test. There is a lot of controversy over whether sweat tests are even accurate, but most insurance companies require them before they will pay for the genetic test. In the genetic test, they are looking for known CF gene mutations. There are over 1500 of them, so if you get the genetic testing, please make sure your doctor orders the full panel.

Does your son have symptoms of CF, or is this from a newborn screening? I'm just curious. I wish you the best. Please let us know what you find out.

Stacey

 

[JORDYSMOM]

Hi Wade, and welcome. First of all, congrats on your son.

Usually, the testing process starts off with one or two sweat tests, and then, depending on those results, they draw blood for a genetic test. There is a lot of controversy over whether sweat tests are even accurate, but most insurance companies require them before they will pay for the genetic test. In the genetic test, they are looking for known CF gene mutations. There are over 1500 of them, so if you get the genetic testing, please make sure your doctor orders the full panel.

Does your son have symptoms of CF, or is this from a newborn screening? I'm just curious. I wish you the best. Please let us know what you find out.

Stacey

 

[JORDYSMOM]

Hi Wade, and welcome. First of all, congrats on your son.

Usually, the testing process starts off with one or two sweat tests, and then, depending on those results, they draw blood for a genetic test. There is a lot of controversy over whether sweat tests are even accurate, but most insurance companies require them before they will pay for the genetic test. In the genetic test, they are looking for known CF gene mutations. There are over 1500 of them, so if you get the genetic testing, please make sure your doctor orders the full panel.

Does your son have symptoms of CF, or is this from a newborn screening? I'm just curious. I wish you the best. Please let us know what you find out.

Stacey

 

[wade9494]

Thank you for your response...He was diagnosed with Reflux when he was about a month old. He has had severe spit up problems since birth, not usually projectile, but after nearly every feeding it would seem he spit the whole thing right up. The doctor has not been terribly concerned since he continued to gain weight but he has also always been wheezy. The Dr attributed this to the reflux, however it has gotten significantly worse. We have an appointment with a Gast. specialist on Tuesday and I guess we're going to have the CF test done at Children's Medicine/Egleston (We're in Atlanta) on Wed. We are just really scared and don't really know what to expect. Thank you for your help!

 

[wade9494]

Thank you for your response...He was diagnosed with Reflux when he was about a month old. He has had severe spit up problems since birth, not usually projectile, but after nearly every feeding it would seem he spit the whole thing right up. The doctor has not been terribly concerned since he continued to gain weight but he has also always been wheezy. The Dr attributed this to the reflux, however it has gotten significantly worse. We have an appointment with a Gast. specialist on Tuesday and I guess we're going to have the CF test done at Children's Medicine/Egleston (We're in Atlanta) on Wed. We are just really scared and don't really know what to expect. Thank you for your help!

 

[wade9494]

Thank you for your response...He was diagnosed with Reflux when he was about a month old. He has had severe spit up problems since birth, not usually projectile, but after nearly every feeding it would seem he spit the whole thing right up. The doctor has not been terribly concerned since he continued to gain weight but he has also always been wheezy. The Dr attributed this to the reflux, however it has gotten significantly worse. We have an appointment with a Gast. specialist on Tuesday and I guess we're going to have the CF test done at Children's Medicine/Egleston (We're in Atlanta) on Wed. We are just really scared and don't really know what to expect. Thank you for your help!

 

[wade9494]

Thank you for your response...He was diagnosed with Reflux when he was about a month old. He has had severe spit up problems since birth, not usually projectile, but after nearly every feeding it would seem he spit the whole thing right up. The doctor has not been terribly concerned since he continued to gain weight but he has also always been wheezy. The Dr attributed this to the reflux, however it has gotten significantly worse. We have an appointment with a Gast. specialist on Tuesday and I guess we're going to have the CF test done at Children's Medicine/Egleston (We're in Atlanta) on Wed. We are just really scared and don't really know what to expect. Thank you for your help!

 

[wade9494]

Thank you for your response...He was diagnosed with Reflux when he was about a month old. He has had severe spit up problems since birth, not usually projectile, but after nearly every feeding it would seem he spit the whole thing right up. The doctor has not been terribly concerned since he continued to gain weight but he has also always been wheezy. The Dr attributed this to the reflux, however it has gotten significantly worse. We have an appointment with a Gast. specialist on Tuesday and I guess we're going to have the CF test done at Children's Medicine/Egleston (We're in Atlanta) on Wed. We are just really scared and don't really know what to expect. Thank you for your help!

 

[BrsMiney]

Wade,

My son has had GI issues ("cloic", reflux/GERD, protein intolerances, etc) since birth as well. CF was NEVER mentioned. He will be 3 yrs old in two months and just now it is coming up as a possibility. They did a genetic screen on him first and it was negative, but the kind of test that was req'd first only screened for 23 of the 1500-1600 known mutations. So we are going for our sweat test tomorrow morning (Friday).

One thing I have learned from my reading is that sweat tests can be inconclusive/false negative in babies and toddlers, and to make sure you are being sent to a CFF Certified testing site (see cff.org).

I wish you the best and will be praying for your son.

BTW. Things got so much better once we FINALLY got sent to a pedi GI. With or without the dx of CF, there are dietary changes and meds they will try that your pediatrician PROBABLY hasn't. Just out of curiousity, are y'all breastfeeding or formula--that is a big factor at your son's age with GI issues.

-J

 

[BrsMiney]

Wade,

My son has had GI issues ("cloic", reflux/GERD, protein intolerances, etc) since birth as well. CF was NEVER mentioned. He will be 3 yrs old in two months and just now it is coming up as a possibility. They did a genetic screen on him first and it was negative, but the kind of test that was req'd first only screened for 23 of the 1500-1600 known mutations. So we are going for our sweat test tomorrow morning (Friday).

One thing I have learned from my reading is that sweat tests can be inconclusive/false negative in babies and toddlers, and to make sure you are being sent to a CFF Certified testing site (see cff.org).

I wish you the best and will be praying for your son.

BTW. Things got so much better once we FINALLY got sent to a pedi GI. With or without the dx of CF, there are dietary changes and meds they will try that your pediatrician PROBABLY hasn't. Just out of curiousity, are y'all breastfeeding or formula--that is a big factor at your son's age with GI issues.

-J

 

[BrsMiney]

Wade,

My son has had GI issues ("cloic", reflux/GERD, protein intolerances, etc) since birth as well. CF was NEVER mentioned. He will be 3 yrs old in two months and just now it is coming up as a possibility. They did a genetic screen on him first and it was negative, but the kind of test that was req'd first only screened for 23 of the 1500-1600 known mutations. So we are going for our sweat test tomorrow morning (Friday).

One thing I have learned from my reading is that sweat tests can be inconclusive/false negative in babies and toddlers, and to make sure you are being sent to a CFF Certified testing site (see cff.org).

I wish you the best and will be praying for your son.

BTW. Things got so much better once we FINALLY got sent to a pedi GI. With or without the dx of CF, there are dietary changes and meds they will try that your pediatrician PROBABLY hasn't. Just out of curiousity, are y'all breastfeeding or formula--that is a big factor at your son's age with GI issues.

-J

 

[BrsMiney]

Wade,

My son has had GI issues ("cloic", reflux/GERD, protein intolerances, etc) since birth as well. CF was NEVER mentioned. He will be 3 yrs old in two months and just now it is coming up as a possibility. They did a genetic screen on him first and it was negative, but the kind of test that was req'd first only screened for 23 of the 1500-1600 known mutations. So we are going for our sweat test tomorrow morning (Friday).

One thing I have learned from my reading is that sweat tests can be inconclusive/false negative in babies and toddlers, and to make sure you are being sent to a CFF Certified testing site (see cff.org).

I wish you the best and will be praying for your son.

BTW. Things got so much better once we FINALLY got sent to a pedi GI. With or without the dx of CF, there are dietary changes and meds they will try that your pediatrician PROBABLY hasn't. Just out of curiousity, are y'all breastfeeding or formula--that is a big factor at your son's age with GI issues.

-J

 

[BrsMiney]

Wade,

My son has had GI issues ("cloic", reflux/GERD, protein intolerances, etc) since birth as well. CF was NEVER mentioned. He will be 3 yrs old in two months and just now it is coming up as a possibility. They did a genetic screen on him first and it was negative, but the kind of test that was req'd first only screened for 23 of the 1500-1600 known mutations. So we are going for our sweat test tomorrow morning (Friday).

One thing I have learned from my reading is that sweat tests can be inconclusive/false negative in babies and toddlers, and to make sure you are being sent to a CFF Certified testing site (see cff.org).

I wish you the best and will be praying for your son.

BTW. Things got so much better once we FINALLY got sent to a pedi GI. With or without the dx of CF, there are dietary changes and meds they will try that your pediatrician PROBABLY hasn't. Just out of curiousity, are y'all breastfeeding or formula--that is a big factor at your son's age with GI issues.

-J