help confused about my sons possible cf

[Alyssa]

<b>vmccoma</b>

unfortunately what it probably means is he does in fact have CF. There are many cases now that are classified as mild or a-typical for many years because the patient doesn't have many CF symptoms and/or what they are experiencing so far is not very severe.

My kids are two very good examples of "normal" sweat tests and "mild a-typical" cases (read the first page of my blog for full details) but when we ran the full genetic testing we did find two CF genes.

I don't want to discourage you from hoping that he does not have CF, and you should wait until you meet with the specialist and get genetic testing, however from what you have described it does sound very possible (and also very similar to what happened with my daughter) that he does have CF. If this is the case, the good news is early detection and treatment is a real plus from here on out. He will benefit from preventative and maintenance therapies, along with being followed by a CF specialist and should remain healthier because of it.

 

[Alyssa]

<b>vmccoma</b>

unfortunately what it probably means is he does in fact have CF. There are many cases now that are classified as mild or a-typical for many years because the patient doesn't have many CF symptoms and/or what they are experiencing so far is not very severe.

My kids are two very good examples of "normal" sweat tests and "mild a-typical" cases (read the first page of my blog for full details) but when we ran the full genetic testing we did find two CF genes.

I don't want to discourage you from hoping that he does not have CF, and you should wait until you meet with the specialist and get genetic testing, however from what you have described it does sound very possible (and also very similar to what happened with my daughter) that he does have CF. If this is the case, the good news is early detection and treatment is a real plus from here on out. He will benefit from preventative and maintenance therapies, along with being followed by a CF specialist and should remain healthier because of it.

 

[Alyssa]

<b>vmccoma</b>

unfortunately what it probably means is he does in fact have CF. There are many cases now that are classified as mild or a-typical for many years because the patient doesn't have many CF symptoms and/or what they are experiencing so far is not very severe.

My kids are two very good examples of "normal" sweat tests and "mild a-typical" cases (read the first page of my blog for full details) but when we ran the full genetic testing we did find two CF genes.

I don't want to discourage you from hoping that he does not have CF, and you should wait until you meet with the specialist and get genetic testing, however from what you have described it does sound very possible (and also very similar to what happened with my daughter) that he does have CF. If this is the case, the good news is early detection and treatment is a real plus from here on out. He will benefit from preventative and maintenance therapies, along with being followed by a CF specialist and should remain healthier because of it.

 

[Alyssa]

<b>vmccoma</b>

unfortunately what it probably means is he does in fact have CF. There are many cases now that are classified as mild or a-typical for many years because the patient doesn't have many CF symptoms and/or what they are experiencing so far is not very severe.

My kids are two very good examples of "normal" sweat tests and "mild a-typical" cases (read the first page of my blog for full details) but when we ran the full genetic testing we did find two CF genes.

I don't want to discourage you from hoping that he does not have CF, and you should wait until you meet with the specialist and get genetic testing, however from what you have described it does sound very possible (and also very similar to what happened with my daughter) that he does have CF. If this is the case, the good news is early detection and treatment is a real plus from here on out. He will benefit from preventative and maintenance therapies, along with being followed by a CF specialist and should remain healthier because of it.

 

[Alyssa]

<b>vmccoma</b>

unfortunately what it probably means is he does in fact have CF. There are many cases now that are classified as mild or a-typical for many years because the patient doesn't have many CF symptoms and/or what they are experiencing so far is not very severe.

My kids are two very good examples of "normal" sweat tests and "mild a-typical" cases (read the first page of my blog for full details) but when we ran the full genetic testing we did find two CF genes.

I don't want to discourage you from hoping that he does not have CF, and you should wait until you meet with the specialist and get genetic testing, however from what you have described it does sound very possible (and also very similar to what happened with my daughter) that he does have CF. If this is the case, the good news is early detection and treatment is a real plus from here on out. He will benefit from preventative and maintenance therapies, along with being followed by a CF specialist and should remain healthier because of it.

 

[badjaw]

thanks for helping me understand
i kind of feel that he does, but just thought its weird bc of how he presented. he has milk allergies and acid reflux, we were hoping those alone along with coming down with a gastoitestinal virus. i have a team of three cf doctors and the most experienced one thinks he has it based on sweat test, the other wants more proof, and the third thinks a good chance it might not be. we are treating him as if he does and if it comes back positive they will label him with cf, but if the gray area we will be allowed to go for a second opinion. alyssa are you children very healthy?? and do they play sports??will they have children?? the thing i am scared is that if they cant see the genetic form they carry they cant tell me what the outcome of the disease will be.
thanks for talking

 

[badjaw]

thanks for helping me understand
i kind of feel that he does, but just thought its weird bc of how he presented. he has milk allergies and acid reflux, we were hoping those alone along with coming down with a gastoitestinal virus. i have a team of three cf doctors and the most experienced one thinks he has it based on sweat test, the other wants more proof, and the third thinks a good chance it might not be. we are treating him as if he does and if it comes back positive they will label him with cf, but if the gray area we will be allowed to go for a second opinion. alyssa are you children very healthy?? and do they play sports??will they have children?? the thing i am scared is that if they cant see the genetic form they carry they cant tell me what the outcome of the disease will be.
thanks for talking

 

[badjaw]

thanks for helping me understand
i kind of feel that he does, but just thought its weird bc of how he presented. he has milk allergies and acid reflux, we were hoping those alone along with coming down with a gastoitestinal virus. i have a team of three cf doctors and the most experienced one thinks he has it based on sweat test, the other wants more proof, and the third thinks a good chance it might not be. we are treating him as if he does and if it comes back positive they will label him with cf, but if the gray area we will be allowed to go for a second opinion. alyssa are you children very healthy?? and do they play sports??will they have children?? the thing i am scared is that if they cant see the genetic form they carry they cant tell me what the outcome of the disease will be.
thanks for talking

 

[badjaw]

thanks for helping me understand
i kind of feel that he does, but just thought its weird bc of how he presented. he has milk allergies and acid reflux, we were hoping those alone along with coming down with a gastoitestinal virus. i have a team of three cf doctors and the most experienced one thinks he has it based on sweat test, the other wants more proof, and the third thinks a good chance it might not be. we are treating him as if he does and if it comes back positive they will label him with cf, but if the gray area we will be allowed to go for a second opinion. alyssa are you children very healthy?? and do they play sports??will they have children?? the thing i am scared is that if they cant see the genetic form they carry they cant tell me what the outcome of the disease will be.
thanks for talking

 

[badjaw]

thanks for helping me understand
i kind of feel that he does, but just thought its weird bc of how he presented. he has milk allergies and acid reflux, we were hoping those alone along with coming down with a gastoitestinal virus. i have a team of three cf doctors and the most experienced one thinks he has it based on sweat test, the other wants more proof, and the third thinks a good chance it might not be. we are treating him as if he does and if it comes back positive they will label him with cf, but if the gray area we will be allowed to go for a second opinion. alyssa are you children very healthy?? and do they play sports??will they have children?? the thing i am scared is that if they cant see the genetic form they carry they cant tell me what the outcome of the disease will be.
thanks for talking

 

[badjaw]

i also called my insurance and they said that the blood test that was sent out was a molecular test? not sure what that means and they did not see ambry's name anywhere. but my doctor did say it was the long genetic test. so i guess i have to find out what company did this test bc i heard ambry is the best. does anyone what other company in california does genetic testing??

 

[badjaw]

i also called my insurance and they said that the blood test that was sent out was a molecular test? not sure what that means and they did not see ambry's name anywhere. but my doctor did say it was the long genetic test. so i guess i have to find out what company did this test bc i heard ambry is the best. does anyone what other company in california does genetic testing??

 

[badjaw]

i also called my insurance and they said that the blood test that was sent out was a molecular test? not sure what that means and they did not see ambry's name anywhere. but my doctor did say it was the long genetic test. so i guess i have to find out what company did this test bc i heard ambry is the best. does anyone what other company in california does genetic testing??

 

[badjaw]

i also called my insurance and they said that the blood test that was sent out was a molecular test? not sure what that means and they did not see ambry's name anywhere. but my doctor did say it was the long genetic test. so i guess i have to find out what company did this test bc i heard ambry is the best. does anyone what other company in california does genetic testing??

 

[badjaw]

i also called my insurance and they said that the blood test that was sent out was a molecular test? not sure what that means and they did not see ambry's name anywhere. but my doctor did say it was the long genetic test. so i guess i have to find out what company did this test bc i heard ambry is the best. does anyone what other company in california does genetic testing??

 

[vmccomas]

Thanks for replying. We are prepared to accept whatever it is that the doctor is going to tell us. I guess I just had it in my mind that a child with CF is much more sick than what he has been. With the exception of this fall, he has not had any problems. I am so thankful that the pediatrician did refer to the sweat test, though, because we had been seeing a different one until this spring. She just suggested we do as a routine thing, and we would never have thought he would have such a high score. What I would like to know is what is involved in the gene testing and how they do it. This is our next step. Thanks.

 

[vmccomas]

Thanks for replying. We are prepared to accept whatever it is that the doctor is going to tell us. I guess I just had it in my mind that a child with CF is much more sick than what he has been. With the exception of this fall, he has not had any problems. I am so thankful that the pediatrician did refer to the sweat test, though, because we had been seeing a different one until this spring. She just suggested we do as a routine thing, and we would never have thought he would have such a high score. What I would like to know is what is involved in the gene testing and how they do it. This is our next step. Thanks.

 

[vmccomas]

Thanks for replying. We are prepared to accept whatever it is that the doctor is going to tell us. I guess I just had it in my mind that a child with CF is much more sick than what he has been. With the exception of this fall, he has not had any problems. I am so thankful that the pediatrician did refer to the sweat test, though, because we had been seeing a different one until this spring. She just suggested we do as a routine thing, and we would never have thought he would have such a high score. What I would like to know is what is involved in the gene testing and how they do it. This is our next step. Thanks.

 

[vmccomas]

Thanks for replying. We are prepared to accept whatever it is that the doctor is going to tell us. I guess I just had it in my mind that a child with CF is much more sick than what he has been. With the exception of this fall, he has not had any problems. I am so thankful that the pediatrician did refer to the sweat test, though, because we had been seeing a different one until this spring. She just suggested we do as a routine thing, and we would never have thought he would have such a high score. What I would like to know is what is involved in the gene testing and how they do it. This is our next step. Thanks.

 

[vmccomas]

Thanks for replying. We are prepared to accept whatever it is that the doctor is going to tell us. I guess I just had it in my mind that a child with CF is much more sick than what he has been. With the exception of this fall, he has not had any problems. I am so thankful that the pediatrician did refer to the sweat test, though, because we had been seeing a different one until this spring. She just suggested we do as a routine thing, and we would never have thought he would have such a high score. What I would like to know is what is involved in the gene testing and how they do it. This is our next step. Thanks.