Almost Diagnosed

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valigirl21

Guest
I first wanted to say thank you to everyone who posted comments. Your info and support are very helpful.What I find odd is that Noah was very ill with respiratory problems as an infant, but only really has "allergy" symptoms now. Is that common, or am I hoping against hope that the doctors are barking up the wrong tree. He had the simple panel done (genetic test), and we are...waiting...for the full panel. Keep us in your prayers as we do anyone who is or has faced this battle.
 
V

valigirl21

Guest
I first wanted to say thank you to everyone who posted comments. Your info and support are very helpful.What I find odd is that Noah was very ill with respiratory problems as an infant, but only really has "allergy" symptoms now. Is that common, or am I hoping against hope that the doctors are barking up the wrong tree. He had the simple panel done (genetic test), and we are...waiting...for the full panel. Keep us in your prayers as we do anyone who is or has faced this battle.
 
V

valigirl21

Guest
I first wanted to say thank you to everyone who posted comments. Your info and support are very helpful.What I find odd is that Noah was very ill with respiratory problems as an infant, but only really has "allergy" symptoms now. Is that common, or am I hoping against hope that the doctors are barking up the wrong tree. He had the simple panel done (genetic test), and we are...waiting...for the full panel. Keep us in your prayers as we do anyone who is or has faced this battle.
 
V

valigirl21

Guest
I first wanted to say thank you to everyone who posted comments. Your info and support are very helpful.What I find odd is that Noah was very ill with respiratory problems as an infant, but only really has "allergy" symptoms now. Is that common, or am I hoping against hope that the doctors are barking up the wrong tree. He had the simple panel done (genetic test), and we are...waiting...for the full panel. Keep us in your prayers as we do anyone who is or has faced this battle.
 
V

valigirl21

Guest
I first wanted to say thank you to everyone who posted comments. Your info and support are very helpful.What I find odd is that Noah was very ill with respiratory problems as an infant, but only really has "allergy" symptoms now. Is that common, or am I hoping against hope that the doctors are barking up the wrong tree. He had the simple panel done (genetic test), and we are...waiting...for the full panel. Keep us in your prayers as we do anyone who is or has faced this battle.
 
A

Alyssa

New member
It is still possible that his symptoms have just decreased for the time being. My daughter was misdiagnosed for 8 years. She had a couple of infections per year but we just thought it was asthma. Fortunately she always cleared them on her own, until she was 14 years old -- that's when we had to get antibiotics and finally got some answers.

Yes, I'm sure there is still reason to hope that he does not have CF, and I'm sure it is still very possible that he doesn't. But do not be too quick to quit looking for answers -- it is far better to be persistent and know for sure that is not what you are dealing with than to let it go undiagnosed and not given the right treatment or to be followed even if he doesn't have any problems. We are very fortunate that my daughter never picked up pseudomonas during that 8 year period - I'm sure she would have been colonized by the time anyone figured out how to treat her correctly.

When do you get the genetic results back? Did you say it is a full panel?
 
A

Alyssa

New member
It is still possible that his symptoms have just decreased for the time being. My daughter was misdiagnosed for 8 years. She had a couple of infections per year but we just thought it was asthma. Fortunately she always cleared them on her own, until she was 14 years old -- that's when we had to get antibiotics and finally got some answers.

Yes, I'm sure there is still reason to hope that he does not have CF, and I'm sure it is still very possible that he doesn't. But do not be too quick to quit looking for answers -- it is far better to be persistent and know for sure that is not what you are dealing with than to let it go undiagnosed and not given the right treatment or to be followed even if he doesn't have any problems. We are very fortunate that my daughter never picked up pseudomonas during that 8 year period - I'm sure she would have been colonized by the time anyone figured out how to treat her correctly.

When do you get the genetic results back? Did you say it is a full panel?
 
A

Alyssa

New member
It is still possible that his symptoms have just decreased for the time being. My daughter was misdiagnosed for 8 years. She had a couple of infections per year but we just thought it was asthma. Fortunately she always cleared them on her own, until she was 14 years old -- that's when we had to get antibiotics and finally got some answers.

Yes, I'm sure there is still reason to hope that he does not have CF, and I'm sure it is still very possible that he doesn't. But do not be too quick to quit looking for answers -- it is far better to be persistent and know for sure that is not what you are dealing with than to let it go undiagnosed and not given the right treatment or to be followed even if he doesn't have any problems. We are very fortunate that my daughter never picked up pseudomonas during that 8 year period - I'm sure she would have been colonized by the time anyone figured out how to treat her correctly.

When do you get the genetic results back? Did you say it is a full panel?
 
A

Alyssa

New member
It is still possible that his symptoms have just decreased for the time being. My daughter was misdiagnosed for 8 years. She had a couple of infections per year but we just thought it was asthma. Fortunately she always cleared them on her own, until she was 14 years old -- that's when we had to get antibiotics and finally got some answers.

Yes, I'm sure there is still reason to hope that he does not have CF, and I'm sure it is still very possible that he doesn't. But do not be too quick to quit looking for answers -- it is far better to be persistent and know for sure that is not what you are dealing with than to let it go undiagnosed and not given the right treatment or to be followed even if he doesn't have any problems. We are very fortunate that my daughter never picked up pseudomonas during that 8 year period - I'm sure she would have been colonized by the time anyone figured out how to treat her correctly.

When do you get the genetic results back? Did you say it is a full panel?
 
A

Alyssa

New member
It is still possible that his symptoms have just decreased for the time being. My daughter was misdiagnosed for 8 years. She had a couple of infections per year but we just thought it was asthma. Fortunately she always cleared them on her own, until she was 14 years old -- that's when we had to get antibiotics and finally got some answers.

Yes, I'm sure there is still reason to hope that he does not have CF, and I'm sure it is still very possible that he doesn't. But do not be too quick to quit looking for answers -- it is far better to be persistent and know for sure that is not what you are dealing with than to let it go undiagnosed and not given the right treatment or to be followed even if he doesn't have any problems. We are very fortunate that my daughter never picked up pseudomonas during that 8 year period - I'm sure she would have been colonized by the time anyone figured out how to treat her correctly.

When do you get the genetic results back? Did you say it is a full panel?
 
H

hopesiris

Guest
A sweat test above 30 is a concern. Mine was 36 and I needed the full Ambry panel.
 
H

hopesiris

Guest
A sweat test above 30 is a concern. Mine was 36 and I needed the full Ambry panel.
 
H

hopesiris

Guest
A sweat test above 30 is a concern. Mine was 36 and I needed the full Ambry panel.
 
H

hopesiris

Guest
A sweat test above 30 is a concern. Mine was 36 and I needed the full Ambry panel.
 
H

hopesiris

Guest
A sweat test above 30 is a concern. Mine was 36 and I needed the full Ambry panel.
 
V

valigirl21

Guest
On Friday the doc's office returned a call to me to let me know that my son's full panel genetics test was negative. Does this mean he doesn't have cf, or does it just mean he doesn't have a common or known mutation. I'm hoping it's the first, although he is as of now still being treated as a cf patient.
 
V

valigirl21

Guest
On Friday the doc's office returned a call to me to let me know that my son's full panel genetics test was negative. Does this mean he doesn't have cf, or does it just mean he doesn't have a common or known mutation. I'm hoping it's the first, although he is as of now still being treated as a cf patient.
 
V

valigirl21

Guest
On Friday the doc's office returned a call to me to let me know that my son's full panel genetics test was negative. Does this mean he doesn't have cf, or does it just mean he doesn't have a common or known mutation. I'm hoping it's the first, although he is as of now still being treated as a cf patient.
 
V

valigirl21

Guest
On Friday the doc's office returned a call to me to let me know that my son's full panel genetics test was negative. Does this mean he doesn't have cf, or does it just mean he doesn't have a common or known mutation. I'm hoping it's the first, although he is as of now still being treated as a cf patient.
 
V

valigirl21

Guest
On Friday the doc's office returned a call to me to let me know that my son's full panel genetics test was negative. Does this mean he doesn't have cf, or does it just mean he doesn't have a common or known mutation. I'm hoping it's the first, although he is as of now still being treated as a cf patient.
 
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