R117H question

hmw

New member
That is true; for many many years the sweat test was all that was available to dx someone with CF. However, no test is 100% (not even genetic testing) so the more tools that you utilize to solidify a dx, the better. In this instance, since the two possible mutations are known and are easy to test for, it makes so much sense to utilize the testing to look for them. This may have been done already, but the main reason for my stating 'the sweat test is not enough' was the fact that the pediatrician was not making clear why, exactly, she believes her daughter is only a carrier.

The ped was already showing himself uninformed by not even being able to explain the meaning of the IRT results and appeared to be uncomfortable even discussing the newborn screening results initially, so it was a concern of mine that this mindset could be leading the ped into brushing things off due to a normal sweat test. Carrier status can only be proven genetically so if this is the case, that is what the ped should have told her unmistakable terms. If she has BOTH mutations, even if the ped does not feel it's all that significant due to a normal sweat test, you should never, ever withhold that kind of information from a parent. If that was the case, she needs to know it and be referred to a CF center for their input, since a ped is not qualified to make this kind of decision. They do not have the expertise.

It's a steep learning curve dealing with drs that we aren't quite comfortable with or who we have trouble communicating with. I wish you the very best with this.
 

hmw

New member
That is true; for many many years the sweat test was all that was available to dx someone with CF. However, no test is 100% (not even genetic testing) so the more tools that you utilize to solidify a dx, the better. In this instance, since the two possible mutations are known and are easy to test for, it makes so much sense to utilize the testing to look for them. This may have been done already, but the main reason for my stating 'the sweat test is not enough' was the fact that the pediatrician was not making clear why, exactly, she believes her daughter is only a carrier.

The ped was already showing himself uninformed by not even being able to explain the meaning of the IRT results and appeared to be uncomfortable even discussing the newborn screening results initially, so it was a concern of mine that this mindset could be leading the ped into brushing things off due to a normal sweat test. Carrier status can only be proven genetically so if this is the case, that is what the ped should have told her unmistakable terms. If she has BOTH mutations, even if the ped does not feel it's all that significant due to a normal sweat test, you should never, ever withhold that kind of information from a parent. If that was the case, she needs to know it and be referred to a CF center for their input, since a ped is not qualified to make this kind of decision. They do not have the expertise.

It's a steep learning curve dealing with drs that we aren't quite comfortable with or who we have trouble communicating with. I wish you the very best with this.
 

hmw

New member
That is true; for many many years the sweat test was all that was available to dx someone with CF. However, no test is 100% (not even genetic testing) so the more tools that you utilize to solidify a dx, the better. In this instance, since the two possible mutations are known and are easy to test for, it makes so much sense to utilize the testing to look for them. This may have been done already, but the main reason for my stating 'the sweat test is not enough' was the fact that the pediatrician was not making clear why, exactly, she believes her daughter is only a carrier.

The ped was already showing himself uninformed by not even being able to explain the meaning of the IRT results and appeared to be uncomfortable even discussing the newborn screening results initially, so it was a concern of mine that this mindset could be leading the ped into brushing things off due to a normal sweat test. Carrier status can only be proven genetically so if this is the case, that is what the ped should have told her unmistakable terms. If she has BOTH mutations, even if the ped does not feel it's all that significant due to a normal sweat test, you should never, ever withhold that kind of information from a parent. If that was the case, she needs to know it and be referred to a CF center for their input, since a ped is not qualified to make this kind of decision. They do not have the expertise.

It's a steep learning curve dealing with drs that we aren't quite comfortable with or who we have trouble communicating with. I wish you the very best with this.
 

hmw

New member
That is true; for many many years the sweat test was all that was available to dx someone with CF. However, no test is 100% (not even genetic testing) so the more tools that you utilize to solidify a dx, the better. In this instance, since the two possible mutations are known and are easy to test for, it makes so much sense to utilize the testing to look for them. This may have been done already, but the main reason for my stating 'the sweat test is not enough' was the fact that the pediatrician was not making clear why, exactly, she believes her daughter is only a carrier.

The ped was already showing himself uninformed by not even being able to explain the meaning of the IRT results and appeared to be uncomfortable even discussing the newborn screening results initially, so it was a concern of mine that this mindset could be leading the ped into brushing things off due to a normal sweat test. Carrier status can only be proven genetically so if this is the case, that is what the ped should have told her unmistakable terms. If she has BOTH mutations, even if the ped does not feel it's all that significant due to a normal sweat test, you should never, ever withhold that kind of information from a parent. If that was the case, she needs to know it and be referred to a CF center for their input, since a ped is not qualified to make this kind of decision. They do not have the expertise.

It's a steep learning curve dealing with drs that we aren't quite comfortable with or who we have trouble communicating with. I wish you the very best with this.
 

hmw

New member
That is true; for many many years the sweat test was all that was available to dx someone with CF. However, no test is 100% (not even genetic testing) so the more tools that you utilize to solidify a dx, the better. In this instance, since the two possible mutations are known and are easy to test for, it makes so much sense to utilize the testing to look for them. This may have been done already, but the main reason for my stating 'the sweat test is not enough' was the fact that the pediatrician was not making clear why, exactly, she believes her daughter is only a carrier.
<br />
<br />The ped was already showing himself uninformed by not even being able to explain the meaning of the IRT results and appeared to be uncomfortable even discussing the newborn screening results initially, so it was a concern of mine that this mindset could be leading the ped into brushing things off due to a normal sweat test. Carrier status can only be proven genetically so if this is the case, that is what the ped should have told her unmistakable terms. If she has BOTH mutations, even if the ped does not feel it's all that significant due to a normal sweat test, you should never, ever withhold that kind of information from a parent. If that was the case, she needs to know it and be referred to a CF center for their input, since a ped is not qualified to make this kind of decision. They do not have the expertise.
<br />
<br />It's a steep learning curve dealing with drs that we aren't quite comfortable with or who we have trouble communicating with. I wish you the very best with this.
 

HappyHearts

New member
I have been wanting to see a genetic counselor since DD was born. We saw one when I was pregnant and couldn't run her DNA at the time. Now that I am not as hormonal I'd like to have some of this further explained. They did not offer a counselor at PCH but it was more of an informal sweat collection appointment than anything else. The tech didn't say much to me even.

We tried to do a blood draw today without success (I'm going to start a separate post for tips/suggestions). I'm going to call the pediatrician and the state to see what info I can get until I am ready to try again with the blood draw. I know she doesn't have any symptoms so even if she has both mutations there isn't a rush but I've been waiting for this answer for 16 months + the 4 months I was pregnant after finding out. I'm ready for a clear and as SURE as can be answer.

Thanks again for all of your input everyone - it's really helpful to someone who has no idea what's going on but desperately wants to. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

HappyHearts

New member
I have been wanting to see a genetic counselor since DD was born. We saw one when I was pregnant and couldn't run her DNA at the time. Now that I am not as hormonal I'd like to have some of this further explained. They did not offer a counselor at PCH but it was more of an informal sweat collection appointment than anything else. The tech didn't say much to me even.

We tried to do a blood draw today without success (I'm going to start a separate post for tips/suggestions). I'm going to call the pediatrician and the state to see what info I can get until I am ready to try again with the blood draw. I know she doesn't have any symptoms so even if she has both mutations there isn't a rush but I've been waiting for this answer for 16 months + the 4 months I was pregnant after finding out. I'm ready for a clear and as SURE as can be answer.

Thanks again for all of your input everyone - it's really helpful to someone who has no idea what's going on but desperately wants to. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

HappyHearts

New member
I have been wanting to see a genetic counselor since DD was born. We saw one when I was pregnant and couldn't run her DNA at the time. Now that I am not as hormonal I'd like to have some of this further explained. They did not offer a counselor at PCH but it was more of an informal sweat collection appointment than anything else. The tech didn't say much to me even.

We tried to do a blood draw today without success (I'm going to start a separate post for tips/suggestions). I'm going to call the pediatrician and the state to see what info I can get until I am ready to try again with the blood draw. I know she doesn't have any symptoms so even if she has both mutations there isn't a rush but I've been waiting for this answer for 16 months + the 4 months I was pregnant after finding out. I'm ready for a clear and as SURE as can be answer.

Thanks again for all of your input everyone - it's really helpful to someone who has no idea what's going on but desperately wants to. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

HappyHearts

New member
I have been wanting to see a genetic counselor since DD was born. We saw one when I was pregnant and couldn't run her DNA at the time. Now that I am not as hormonal I'd like to have some of this further explained. They did not offer a counselor at PCH but it was more of an informal sweat collection appointment than anything else. The tech didn't say much to me even.

We tried to do a blood draw today without success (I'm going to start a separate post for tips/suggestions). I'm going to call the pediatrician and the state to see what info I can get until I am ready to try again with the blood draw. I know she doesn't have any symptoms so even if she has both mutations there isn't a rush but I've been waiting for this answer for 16 months + the 4 months I was pregnant after finding out. I'm ready for a clear and as SURE as can be answer.

Thanks again for all of your input everyone - it's really helpful to someone who has no idea what's going on but desperately wants to. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

HappyHearts

New member
I have been wanting to see a genetic counselor since DD was born. We saw one when I was pregnant and couldn't run her DNA at the time. Now that I am not as hormonal I'd like to have some of this further explained. They did not offer a counselor at PCH but it was more of an informal sweat collection appointment than anything else. The tech didn't say much to me even.
<br />
<br />We tried to do a blood draw today without success (I'm going to start a separate post for tips/suggestions). I'm going to call the pediatrician and the state to see what info I can get until I am ready to try again with the blood draw. I know she doesn't have any symptoms so even if she has both mutations there isn't a rush but I've been waiting for this answer for 16 months + the 4 months I was pregnant after finding out. I'm ready for a clear and as SURE as can be answer.
<br />
<br />Thanks again for all of your input everyone - it's really helpful to someone who has no idea what's going on but desperately wants to. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dmatherne

New member
Just wanted to let you know that you can go to cff.org and look up a care center located near you. Call them directly and ask for the CF Coordinator or the Genetics Counselor. They will probably be able to direct you in the steps you need to take.

It may also be helpful to contact cff.org's 800 number. I have called them before to just talk things through when I was unclear on things. They are very educated and can also point you in the right direction.

Good luck and keep us posted. Let us know if you have any other questions. We are all in this together<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dmatherne

New member
Just wanted to let you know that you can go to cff.org and look up a care center located near you. Call them directly and ask for the CF Coordinator or the Genetics Counselor. They will probably be able to direct you in the steps you need to take.

It may also be helpful to contact cff.org's 800 number. I have called them before to just talk things through when I was unclear on things. They are very educated and can also point you in the right direction.

Good luck and keep us posted. Let us know if you have any other questions. We are all in this together<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dmatherne

New member
Just wanted to let you know that you can go to cff.org and look up a care center located near you. Call them directly and ask for the CF Coordinator or the Genetics Counselor. They will probably be able to direct you in the steps you need to take.

It may also be helpful to contact cff.org's 800 number. I have called them before to just talk things through when I was unclear on things. They are very educated and can also point you in the right direction.

Good luck and keep us posted. Let us know if you have any other questions. We are all in this together<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dmatherne

New member
Just wanted to let you know that you can go to cff.org and look up a care center located near you. Call them directly and ask for the CF Coordinator or the Genetics Counselor. They will probably be able to direct you in the steps you need to take.

It may also be helpful to contact cff.org's 800 number. I have called them before to just talk things through when I was unclear on things. They are very educated and can also point you in the right direction.

Good luck and keep us posted. Let us know if you have any other questions. We are all in this together<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

dmatherne

New member
Just wanted to let you know that you can go to cff.org and look up a care center located near you. Call them directly and ask for the CF Coordinator or the Genetics Counselor. They will probably be able to direct you in the steps you need to take.
<br />
<br />It may also be helpful to contact cff.org's 800 number. I have called them before to just talk things through when I was unclear on things. They are very educated and can also point you in the right direction.
<br />
<br />Good luck and keep us posted. Let us know if you have any other questions. We are all in this together<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
Top