Opinions please (long)

A

Alyssa

New member
Could it be something other than CF? I don't know... I'm sure it is entirely possible. What most of us know on this board is it certainly sounds like it could be CF, because of the symptoms.

Having a lack of diarrhea is not that big of a deal, as many people with CF are pancreatic sufficient and so that by itself would not indicate that it is not CF.

Having a normal sweat test is also something that many people with CF have experienced first hand. Sweat tests are a good tool when they are high and clearly positive. When they are lower or borderline but symptoms persist, the only way to go is the genetic testing or nasal potential difference testing.

Hang in there, it sounds like you have finally found the right doctor - count it as a blessing that he has ordered a full genetic testing, that can be a huge battle for many parents, especially after a lower sweat test number.
 
A

Alyssa

New member
Could it be something other than CF? I don't know... I'm sure it is entirely possible. What most of us know on this board is it certainly sounds like it could be CF, because of the symptoms.

Having a lack of diarrhea is not that big of a deal, as many people with CF are pancreatic sufficient and so that by itself would not indicate that it is not CF.

Having a normal sweat test is also something that many people with CF have experienced first hand. Sweat tests are a good tool when they are high and clearly positive. When they are lower or borderline but symptoms persist, the only way to go is the genetic testing or nasal potential difference testing.

Hang in there, it sounds like you have finally found the right doctor - count it as a blessing that he has ordered a full genetic testing, that can be a huge battle for many parents, especially after a lower sweat test number.
 
A

Alyssa

New member
Could it be something other than CF? I don't know... I'm sure it is entirely possible. What most of us know on this board is it certainly sounds like it could be CF, because of the symptoms.

Having a lack of diarrhea is not that big of a deal, as many people with CF are pancreatic sufficient and so that by itself would not indicate that it is not CF.

Having a normal sweat test is also something that many people with CF have experienced first hand. Sweat tests are a good tool when they are high and clearly positive. When they are lower or borderline but symptoms persist, the only way to go is the genetic testing or nasal potential difference testing.

Hang in there, it sounds like you have finally found the right doctor - count it as a blessing that he has ordered a full genetic testing, that can be a huge battle for many parents, especially after a lower sweat test number.
 
A

Alyssa

New member
Could it be something other than CF? I don't know... I'm sure it is entirely possible. What most of us know on this board is it certainly sounds like it could be CF, because of the symptoms.

Having a lack of diarrhea is not that big of a deal, as many people with CF are pancreatic sufficient and so that by itself would not indicate that it is not CF.

Having a normal sweat test is also something that many people with CF have experienced first hand. Sweat tests are a good tool when they are high and clearly positive. When they are lower or borderline but symptoms persist, the only way to go is the genetic testing or nasal potential difference testing.

Hang in there, it sounds like you have finally found the right doctor - count it as a blessing that he has ordered a full genetic testing, that can be a huge battle for many parents, especially after a lower sweat test number.
 
A

Alyssa

New member
Could it be something other than CF? I don't know... I'm sure it is entirely possible. What most of us know on this board is it certainly sounds like it could be CF, because of the symptoms.
<br />
<br />Having a lack of diarrhea is not that big of a deal, as many people with CF are pancreatic sufficient and so that by itself would not indicate that it is not CF.
<br />
<br />Having a normal sweat test is also something that many people with CF have experienced first hand. Sweat tests are a good tool when they are high and clearly positive. When they are lower or borderline but symptoms persist, the only way to go is the genetic testing or nasal potential difference testing.
<br />
<br />Hang in there, it sounds like you have finally found the right doctor - count it as a blessing that he has ordered a full genetic testing, that can be a huge battle for many parents, especially after a lower sweat test number.
 
M

mommy2jack

New member
Ok so here we are a few months later. Jack had his adenoids out and his cilia biopsy came out normal. His chest seemed clear for a few weeks and then we are right back to where we have always been...full of mucus and a terrible cough. He had the screening and it came back normal - so NOW they are sending us for the full gene test??? UGH - The pulmo says his sweat test would be borderline if he had it - not low. She also ordered a CT w/contrast for Thursday. I feel so bad - I just want things to start getting better for him. He has such a hard time running around and catching his breath. I just want it to be better for him.

Thanks
Amy
 
M

mommy2jack

New member
Ok so here we are a few months later. Jack had his adenoids out and his cilia biopsy came out normal. His chest seemed clear for a few weeks and then we are right back to where we have always been...full of mucus and a terrible cough. He had the screening and it came back normal - so NOW they are sending us for the full gene test??? UGH - The pulmo says his sweat test would be borderline if he had it - not low. She also ordered a CT w/contrast for Thursday. I feel so bad - I just want things to start getting better for him. He has such a hard time running around and catching his breath. I just want it to be better for him.

Thanks
Amy
 
M

mommy2jack

New member
Ok so here we are a few months later. Jack had his adenoids out and his cilia biopsy came out normal. His chest seemed clear for a few weeks and then we are right back to where we have always been...full of mucus and a terrible cough. He had the screening and it came back normal - so NOW they are sending us for the full gene test??? UGH - The pulmo says his sweat test would be borderline if he had it - not low. She also ordered a CT w/contrast for Thursday. I feel so bad - I just want things to start getting better for him. He has such a hard time running around and catching his breath. I just want it to be better for him.

Thanks
Amy
 
M

mommy2jack

New member
Ok so here we are a few months later. Jack had his adenoids out and his cilia biopsy came out normal. His chest seemed clear for a few weeks and then we are right back to where we have always been...full of mucus and a terrible cough. He had the screening and it came back normal - so NOW they are sending us for the full gene test??? UGH - The pulmo says his sweat test would be borderline if he had it - not low. She also ordered a CT w/contrast for Thursday. I feel so bad - I just want things to start getting better for him. He has such a hard time running around and catching his breath. I just want it to be better for him.

Thanks
Amy
 
M

mommy2jack

New member
Ok so here we are a few months later. Jack had his adenoids out and his cilia biopsy came out normal. His chest seemed clear for a few weeks and then we are right back to where we have always been...full of mucus and a terrible cough. He had the screening and it came back normal - so NOW they are sending us for the full gene test??? UGH - The pulmo says his sweat test would be borderline if he had it - not low. She also ordered a CT w/contrast for Thursday. I feel so bad - I just want things to start getting better for him. He has such a hard time running around and catching his breath. I just want it to be better for him.
<br />
<br />Thanks
<br />Amy
 
J

JORDYSMOM

New member
Amy, I'm sorry you are still in limbo. I can't believe you've been trying to get answers for almost 4 months now! Ugh!! It's good that you are finally getting the full-panel test. Maybe it will rule out CF, but if it doesn't, then you can finally begin a treatment plan that should help your child feel better.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Amy, I'm sorry you are still in limbo. I can't believe you've been trying to get answers for almost 4 months now! Ugh!! It's good that you are finally getting the full-panel test. Maybe it will rule out CF, but if it doesn't, then you can finally begin a treatment plan that should help your child feel better.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Amy, I'm sorry you are still in limbo. I can't believe you've been trying to get answers for almost 4 months now! Ugh!! It's good that you are finally getting the full-panel test. Maybe it will rule out CF, but if it doesn't, then you can finally begin a treatment plan that should help your child feel better.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Amy, I'm sorry you are still in limbo. I can't believe you've been trying to get answers for almost 4 months now! Ugh!! It's good that you are finally getting the full-panel test. Maybe it will rule out CF, but if it doesn't, then you can finally begin a treatment plan that should help your child feel better.

Please keep us posted.

Stacey
 
J

JORDYSMOM

New member
Amy, I'm sorry you are still in limbo. I can't believe you've been trying to get answers for almost 4 months now! Ugh!! It's good that you are finally getting the full-panel test. Maybe it will rule out CF, but if it doesn't, then you can finally begin a treatment plan that should help your child feel better.
<br />
<br />Please keep us posted.
<br />
<br />Stacey
 
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