Can it be anything other? His cough seems to be seasonal. He eats well and is growing at a normal rate. 80lbs 4'7''. I am terrified and sooo don't want to terrify him. Please help!What do I do next? He only seems to have cough during the winter. He is good during the summer. Oh God I am So frightened!
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Scared
- Thread starter tizzy
- Start date
Can it be anything other? His cough seems to be seasonal. He eats well and is growing at a normal rate. 80lbs 4'7''. I am terrified and sooo don't want to terrify him. Please help!What do I do next? He only seems to have cough during the winter. He is good during the summer. Oh God I am So frightened!
Can it be anything other? His cough seems to be seasonal. He eats well and is growing at a normal rate. 80lbs 4'7''. I am terrified and sooo don't want to terrify him. Please help!What do I do next? He only seems to have cough during the winter. He is good during the summer. Oh God I am So frightened!
Those numbers are in the "borderline" range, so you might need to seek the genetic test. I have no idea if things other than CF can make sweat test results show up in this borderline range. If you got the test from an accredited CF clinic, I'd imagine you'll get good advice from them on how to proceed. But if it was from someplace not fully up on CF, you might want to see about going someplace else.
By its very nature, this website tends to have people with CF reading it, or their families - so you might not hear much her from anyone who got tested and found out they did NOT have CF. Which is to say, you can find plenty of stories on this website of people with borderline sweat tests who DO have CF and it might freak you out if you dwell on it too much before going back to your doctor to talk through next steps.
I hope for the best for you.
By its very nature, this website tends to have people with CF reading it, or their families - so you might not hear much her from anyone who got tested and found out they did NOT have CF. Which is to say, you can find plenty of stories on this website of people with borderline sweat tests who DO have CF and it might freak you out if you dwell on it too much before going back to your doctor to talk through next steps.
I hope for the best for you.
Those numbers are in the "borderline" range, so you might need to seek the genetic test. I have no idea if things other than CF can make sweat test results show up in this borderline range. If you got the test from an accredited CF clinic, I'd imagine you'll get good advice from them on how to proceed. But if it was from someplace not fully up on CF, you might want to see about going someplace else.
By its very nature, this website tends to have people with CF reading it, or their families - so you might not hear much her from anyone who got tested and found out they did NOT have CF. Which is to say, you can find plenty of stories on this website of people with borderline sweat tests who DO have CF and it might freak you out if you dwell on it too much before going back to your doctor to talk through next steps.
I hope for the best for you.
By its very nature, this website tends to have people with CF reading it, or their families - so you might not hear much her from anyone who got tested and found out they did NOT have CF. Which is to say, you can find plenty of stories on this website of people with borderline sweat tests who DO have CF and it might freak you out if you dwell on it too much before going back to your doctor to talk through next steps.
I hope for the best for you.
Those numbers are in the "borderline" range, so you might need to seek the genetic test. I have no idea if things other than CF can make sweat test results show up in this borderline range. If you got the test from an accredited CF clinic, I'd imagine you'll get good advice from them on how to proceed. But if it was from someplace not fully up on CF, you might want to see about going someplace else.
By its very nature, this website tends to have people with CF reading it, or their families - so you might not hear much her from anyone who got tested and found out they did NOT have CF. Which is to say, you can find plenty of stories on this website of people with borderline sweat tests who DO have CF and it might freak you out if you dwell on it too much before going back to your doctor to talk through next steps.
I hope for the best for you.
By its very nature, this website tends to have people with CF reading it, or their families - so you might not hear much her from anyone who got tested and found out they did NOT have CF. Which is to say, you can find plenty of stories on this website of people with borderline sweat tests who DO have CF and it might freak you out if you dwell on it too much before going back to your doctor to talk through next steps.
I hope for the best for you.
My first ?? is what led them to test to begin with. There are other things then can trigger a positive sweat test. Some are Addisons & Edema. In addition it MUST be done at an accredited center to assure the accuracy. Depending on what led you to have him tested, you might want to consider have the genetic testing done. The full panel would locate what gene mutations he has to verify if its CF. I know its frightening and honestly until you can get further testing I wouldnt totally panick. IF it is CF you take one step at a time like so many of us have. There are times we didnt think we would get thru, but we do. When you have a chance if you could give us more info on what led him to be tested.
My first ?? is what led them to test to begin with. There are other things then can trigger a positive sweat test. Some are Addisons & Edema. In addition it MUST be done at an accredited center to assure the accuracy. Depending on what led you to have him tested, you might want to consider have the genetic testing done. The full panel would locate what gene mutations he has to verify if its CF. I know its frightening and honestly until you can get further testing I wouldnt totally panick. IF it is CF you take one step at a time like so many of us have. There are times we didnt think we would get thru, but we do. When you have a chance if you could give us more info on what led him to be tested.
My first ?? is what led them to test to begin with. There are other things then can trigger a positive sweat test. Some are Addisons & Edema. In addition it MUST be done at an accredited center to assure the accuracy. Depending on what led you to have him tested, you might want to consider have the genetic testing done. The full panel would locate what gene mutations he has to verify if its CF. I know its frightening and honestly until you can get further testing I wouldnt totally panick. IF it is CF you take one step at a time like so many of us have. There are times we didnt think we would get thru, but we do. When you have a chance if you could give us more info on what led him to be tested.
He kept getting coughs and alot of mucus from his nose. he would do an oral steroid and neb treatments for a few weeks and then be OK for a week before it started all over again.We went to a specialist.When we went for all the testing, allergies,sinus ct, chest xray. Everything came back negative except the sweat tests. So we went to CHOP in Philly and the sweat test results were 42 and 46. That is where we are now. His pulminary dr wants to do the genetic test now. I guess that is what I will do. I will go to Philly (CHOP) unless there is somewhere else I should be. I live in NJ by the AC shore.So sorry to sound so freaked out but I am so freaked out.My husband died when I was pregnant and our son is my world! I cannot imagine anything other than a long wonderful life for him!
Thanks for your responses!
Thanks for your responses!
He kept getting coughs and alot of mucus from his nose. he would do an oral steroid and neb treatments for a few weeks and then be OK for a week before it started all over again.We went to a specialist.When we went for all the testing, allergies,sinus ct, chest xray. Everything came back negative except the sweat tests. So we went to CHOP in Philly and the sweat test results were 42 and 46. That is where we are now. His pulminary dr wants to do the genetic test now. I guess that is what I will do. I will go to Philly (CHOP) unless there is somewhere else I should be. I live in NJ by the AC shore.So sorry to sound so freaked out but I am so freaked out.My husband died when I was pregnant and our son is my world! I cannot imagine anything other than a long wonderful life for him!
Thanks for your responses!
Thanks for your responses!
He kept getting coughs and alot of mucus from his nose. he would do an oral steroid and neb treatments for a few weeks and then be OK for a week before it started all over again.We went to a specialist.When we went for all the testing, allergies,sinus ct, chest xray. Everything came back negative except the sweat tests. So we went to CHOP in Philly and the sweat test results were 42 and 46. That is where we are now. His pulminary dr wants to do the genetic test now. I guess that is what I will do. I will go to Philly (CHOP) unless there is somewhere else I should be. I live in NJ by the AC shore.So sorry to sound so freaked out but I am so freaked out.My husband died when I was pregnant and our son is my world! I cannot imagine anything other than a long wonderful life for him!
Thanks for your responses!
Thanks for your responses!
I am glad you are going to CHOP at least its an accredited center. I am also glad to hear the doctor is persuing the genetic testing. There have been a few CFers that had mainly sinuse issues so I am sad to say that although your son isnt have as many of the typical symptoms, he can still fall into this catergory. I am also very sorry to hear of the loss of your husband. I am sure this compounds your fear. Its easy for me to say Dont Freak, but try not to until you have additonal testing. We will be here waiting for any additional results or ?? that you have.
I am glad you are going to CHOP at least its an accredited center. I am also glad to hear the doctor is persuing the genetic testing. There have been a few CFers that had mainly sinuse issues so I am sad to say that although your son isnt have as many of the typical symptoms, he can still fall into this catergory. I am also very sorry to hear of the loss of your husband. I am sure this compounds your fear. Its easy for me to say Dont Freak, but try not to until you have additonal testing. We will be here waiting for any additional results or ?? that you have.
I am glad you are going to CHOP at least its an accredited center. I am also glad to hear the doctor is persuing the genetic testing. There have been a few CFers that had mainly sinuse issues so I am sad to say that although your son isnt have as many of the typical symptoms, he can still fall into this catergory. I am also very sorry to hear of the loss of your husband. I am sure this compounds your fear. Its easy for me to say Dont Freak, but try not to until you have additonal testing. We will be here waiting for any additional results or ?? that you have.