confused and angry

[momof4kids]

Hi I am so confused and angry. the doctors have ordered two sweat test on my son and his first test was 42 and his second test not sure of the score but was told it was normal. My daughter has had 3 done and her first one was 41 second one was 60 and her third was 50. They have done a genetic blood test on both and will be 10-14 days before we get the answers. I had the a blood test done to see if i am a carrier but it came back no mutations found. If my daughter is testing 60 which i was told was positive and then the 50. Wouldn't I be a carrier? I know that it takes both parents for the child to have CF. My son who tested 42 and then normal has had a lot of stomach pains and he is only 41 pounds and he is 8 years old. The pulmonary doctor that saw him today said he has club fingers but my husband doesn't believe that. My daughter has had alot of breathing trouble and pneumoina. I just wish I knew the answers tired of all the what if's. I really wish I had someone to talk to who understands. my husband doesn't want to talk to me cause he doesn't want to believe they have CF. but the problems my son has matches the gastrional problems.

Thanks for any advice or suggestions

Lori

 

[momof4kids]

Hi I am so confused and angry. the doctors have ordered two sweat test on my son and his first test was 42 and his second test not sure of the score but was told it was normal. My daughter has had 3 done and her first one was 41 second one was 60 and her third was 50. They have done a genetic blood test on both and will be 10-14 days before we get the answers. I had the a blood test done to see if i am a carrier but it came back no mutations found. If my daughter is testing 60 which i was told was positive and then the 50. Wouldn't I be a carrier? I know that it takes both parents for the child to have CF. My son who tested 42 and then normal has had a lot of stomach pains and he is only 41 pounds and he is 8 years old. The pulmonary doctor that saw him today said he has club fingers but my husband doesn't believe that. My daughter has had alot of breathing trouble and pneumoina. I just wish I knew the answers tired of all the what if's. I really wish I had someone to talk to who understands. my husband doesn't want to talk to me cause he doesn't want to believe they have CF. but the problems my son has matches the gastrional problems.

Thanks for any advice or suggestions

Lori

 

[momof4kids]

Hi I am so confused and angry. the doctors have ordered two sweat test on my son and his first test was 42 and his second test not sure of the score but was told it was normal. My daughter has had 3 done and her first one was 41 second one was 60 and her third was 50. They have done a genetic blood test on both and will be 10-14 days before we get the answers. I had the a blood test done to see if i am a carrier but it came back no mutations found. If my daughter is testing 60 which i was told was positive and then the 50. Wouldn't I be a carrier? I know that it takes both parents for the child to have CF. My son who tested 42 and then normal has had a lot of stomach pains and he is only 41 pounds and he is 8 years old. The pulmonary doctor that saw him today said he has club fingers but my husband doesn't believe that. My daughter has had alot of breathing trouble and pneumoina. I just wish I knew the answers tired of all the what if's. I really wish I had someone to talk to who understands. my husband doesn't want to talk to me cause he doesn't want to believe they have CF. but the problems my son has matches the gastrional problems.

Thanks for any advice or suggestions

Lori

 

[momof4kids]

Hi I am so confused and angry. the doctors have ordered two sweat test on my son and his first test was 42 and his second test not sure of the score but was told it was normal. My daughter has had 3 done and her first one was 41 second one was 60 and her third was 50. They have done a genetic blood test on both and will be 10-14 days before we get the answers. I had the a blood test done to see if i am a carrier but it came back no mutations found. If my daughter is testing 60 which i was told was positive and then the 50. Wouldn't I be a carrier? I know that it takes both parents for the child to have CF. My son who tested 42 and then normal has had a lot of stomach pains and he is only 41 pounds and he is 8 years old. The pulmonary doctor that saw him today said he has club fingers but my husband doesn't believe that. My daughter has had alot of breathing trouble and pneumoina. I just wish I knew the answers tired of all the what if's. I really wish I had someone to talk to who understands. my husband doesn't want to talk to me cause he doesn't want to believe they have CF. but the problems my son has matches the gastrional problems.

Thanks for any advice or suggestions

Lori

 

[momof4kids]

Hi I am so confused and angry. the doctors have ordered two sweat test on my son and his first test was 42 and his second test not sure of the score but was told it was normal. My daughter has had 3 done and her first one was 41 second one was 60 and her third was 50. They have done a genetic blood test on both and will be 10-14 days before we get the answers. I had the a blood test done to see if i am a carrier but it came back no mutations found. If my daughter is testing 60 which i was told was positive and then the 50. Wouldn't I be a carrier? I know that it takes both parents for the child to have CF. My son who tested 42 and then normal has had a lot of stomach pains and he is only 41 pounds and he is 8 years old. The pulmonary doctor that saw him today said he has club fingers but my husband doesn't believe that. My daughter has had alot of breathing trouble and pneumoina. I just wish I knew the answers tired of all the what if's. I really wish I had someone to talk to who understands. my husband doesn't want to talk to me cause he doesn't want to believe they have CF. but the problems my son has matches the gastrional problems.
<br />
<br />Thanks for any advice or suggestions
<br />
<br />Lori

 

[Sakem]

Hi Lori

Do u know if your genetic test was a full panel test, or just for the most common 20 or so mutations. Ambry genetics has a blood test that tests for all the known mutations.

 

[Sakem]

Hi Lori

Do u know if your genetic test was a full panel test, or just for the most common 20 or so mutations. Ambry genetics has a blood test that tests for all the known mutations.

 

[Sakem]

Hi Lori

Do u know if your genetic test was a full panel test, or just for the most common 20 or so mutations. Ambry genetics has a blood test that tests for all the known mutations.

 

[Sakem]

Hi Lori

Do u know if your genetic test was a full panel test, or just for the most common 20 or so mutations. Ambry genetics has a blood test that tests for all the known mutations.

 

[Sakem]

Hi Lori
<br />
<br />Do u know if your genetic test was a full panel test, or just for the most common 20 or so mutations. Ambry genetics has a blood test that tests for all the known mutations.

 

[Lonespruce]

Hi Lori,
I'm sorry for what you are going through. Not sure how much I can help...but my son's sweat test was 100, and he has CF. My sweat test was 35, and they are doing further blood testing on me to check for CF (which I'm pretty sure I do not have.) My son's doctor said he's seen as low as 30 on the sweat test that ended up with CF...but that is unusual. When they do a blood test to check for mutations they do not test for all of them because there are too many. It is possible that you have a rare mutation, unfortunately.
As far as the club fingers...one doctor mentioned that about our son too, but we don't see anything at all different about his fingers. My husband finds it easier to ignore the CF too, whereas CF is always on my mind.
I hope you get some answers soon.

 

[Lonespruce]

Hi Lori,
I'm sorry for what you are going through. Not sure how much I can help...but my son's sweat test was 100, and he has CF. My sweat test was 35, and they are doing further blood testing on me to check for CF (which I'm pretty sure I do not have.) My son's doctor said he's seen as low as 30 on the sweat test that ended up with CF...but that is unusual. When they do a blood test to check for mutations they do not test for all of them because there are too many. It is possible that you have a rare mutation, unfortunately.
As far as the club fingers...one doctor mentioned that about our son too, but we don't see anything at all different about his fingers. My husband finds it easier to ignore the CF too, whereas CF is always on my mind.
I hope you get some answers soon.

 

[Lonespruce]

Hi Lori,
I'm sorry for what you are going through. Not sure how much I can help...but my son's sweat test was 100, and he has CF. My sweat test was 35, and they are doing further blood testing on me to check for CF (which I'm pretty sure I do not have.) My son's doctor said he's seen as low as 30 on the sweat test that ended up with CF...but that is unusual. When they do a blood test to check for mutations they do not test for all of them because there are too many. It is possible that you have a rare mutation, unfortunately.
As far as the club fingers...one doctor mentioned that about our son too, but we don't see anything at all different about his fingers. My husband finds it easier to ignore the CF too, whereas CF is always on my mind.
I hope you get some answers soon.

 

[Lonespruce]

Hi Lori,
I'm sorry for what you are going through. Not sure how much I can help...but my son's sweat test was 100, and he has CF. My sweat test was 35, and they are doing further blood testing on me to check for CF (which I'm pretty sure I do not have.) My son's doctor said he's seen as low as 30 on the sweat test that ended up with CF...but that is unusual. When they do a blood test to check for mutations they do not test for all of them because there are too many. It is possible that you have a rare mutation, unfortunately.
As far as the club fingers...one doctor mentioned that about our son too, but we don't see anything at all different about his fingers. My husband finds it easier to ignore the CF too, whereas CF is always on my mind.
I hope you get some answers soon.

 

[Lonespruce]

Hi Lori,
<br />I'm sorry for what you are going through. Not sure how much I can help...but my son's sweat test was 100, and he has CF. My sweat test was 35, and they are doing further blood testing on me to check for CF (which I'm pretty sure I do not have.) My son's doctor said he's seen as low as 30 on the sweat test that ended up with CF...but that is unusual. When they do a blood test to check for mutations they do not test for all of them because there are too many. It is possible that you have a rare mutation, unfortunately.
<br />As far as the club fingers...one doctor mentioned that about our son too, but we don't see anything at all different about his fingers. My husband finds it easier to ignore the CF too, whereas CF is always on my mind.
<br />I hope you get some answers soon.

 

[just1more]

Lori, welcoem to the site. I'd like to hope you don't 'get' to be part of our community (for obvious reasons); however, looking at what you describe I think the results from the genetic test will confirm what is going on.

And yes, techinically your dau. has CF if she had a positive sweat test. The 'official' diagnosis of CF still is based upon sweat test, however, a gene test can confirm and sometimes show CF in people with normal or borderline sweat tests.

As for your carrier testing, most likely you were tested for a common subset of mutations. Such as top 20 or top 90. However, there are 1500+ known mutations so just becuase you don't have one the most common is not necessarily anything.

I will be thinking & praying for you the next few days as I know the waiting in killing you.


PS: if the results are positive, urge your hubby to either join here or at least PM me. I'm one of a couple of dads on here and the most active so I can answer his questions from a 'dad/guy' point of view.

 

[just1more]

Lori, welcoem to the site. I'd like to hope you don't 'get' to be part of our community (for obvious reasons); however, looking at what you describe I think the results from the genetic test will confirm what is going on.

And yes, techinically your dau. has CF if she had a positive sweat test. The 'official' diagnosis of CF still is based upon sweat test, however, a gene test can confirm and sometimes show CF in people with normal or borderline sweat tests.

As for your carrier testing, most likely you were tested for a common subset of mutations. Such as top 20 or top 90. However, there are 1500+ known mutations so just becuase you don't have one the most common is not necessarily anything.

I will be thinking & praying for you the next few days as I know the waiting in killing you.


PS: if the results are positive, urge your hubby to either join here or at least PM me. I'm one of a couple of dads on here and the most active so I can answer his questions from a 'dad/guy' point of view.

 

[just1more]

Lori, welcoem to the site. I'd like to hope you don't 'get' to be part of our community (for obvious reasons); however, looking at what you describe I think the results from the genetic test will confirm what is going on.

And yes, techinically your dau. has CF if she had a positive sweat test. The 'official' diagnosis of CF still is based upon sweat test, however, a gene test can confirm and sometimes show CF in people with normal or borderline sweat tests.

As for your carrier testing, most likely you were tested for a common subset of mutations. Such as top 20 or top 90. However, there are 1500+ known mutations so just becuase you don't have one the most common is not necessarily anything.

I will be thinking & praying for you the next few days as I know the waiting in killing you.


PS: if the results are positive, urge your hubby to either join here or at least PM me. I'm one of a couple of dads on here and the most active so I can answer his questions from a 'dad/guy' point of view.

 

[just1more]

Lori, welcoem to the site. I'd like to hope you don't 'get' to be part of our community (for obvious reasons); however, looking at what you describe I think the results from the genetic test will confirm what is going on.

And yes, techinically your dau. has CF if she had a positive sweat test. The 'official' diagnosis of CF still is based upon sweat test, however, a gene test can confirm and sometimes show CF in people with normal or borderline sweat tests.

As for your carrier testing, most likely you were tested for a common subset of mutations. Such as top 20 or top 90. However, there are 1500+ known mutations so just becuase you don't have one the most common is not necessarily anything.

I will be thinking & praying for you the next few days as I know the waiting in killing you.


PS: if the results are positive, urge your hubby to either join here or at least PM me. I'm one of a couple of dads on here and the most active so I can answer his questions from a 'dad/guy' point of view.

 

[just1more]

Lori, welcoem to the site. I'd like to hope you don't 'get' to be part of our community (for obvious reasons); however, looking at what you describe I think the results from the genetic test will confirm what is going on.
<br />
<br />And yes, techinically your dau. has CF if she had a positive sweat test. The 'official' diagnosis of CF still is based upon sweat test, however, a gene test can confirm and sometimes show CF in people with normal or borderline sweat tests.
<br />
<br />As for your carrier testing, most likely you were tested for a common subset of mutations. Such as top 20 or top 90. However, there are 1500+ known mutations so just becuase you don't have one the most common is not necessarily anything.
<br />
<br />I will be thinking & praying for you the next few days as I know the waiting in killing you.
<br />
<br />
<br />PS: if the results are positive, urge your hubby to either join here or at least PM me. I'm one of a couple of dads on here and the most active so I can answer his questions from a 'dad/guy' point of view.