Update of Diagnosis

[bdd9623]

Hi everyone,

Well it's been 2 weeks and the initial 98 most common mutations came back negative. I asked what will happen at the end of testing since his sweat tests were so high, both 56 and he has every other symptom. Because they can only confirm if he has CF, can't completely rule out, they told me they would treat him anyway. She (the nurse at the CF clinic at Children's Hosp) asked me about all of his symptoms (the original doctor was in infectious disease), when I told her she said they will treat him for CF no matter what. So we are moving ahead. He will have a CF workup on July 23. At lease I don't have to wait to move ahead.

 

[bdd9623]

Hi everyone,

Well it's been 2 weeks and the initial 98 most common mutations came back negative. I asked what will happen at the end of testing since his sweat tests were so high, both 56 and he has every other symptom. Because they can only confirm if he has CF, can't completely rule out, they told me they would treat him anyway. She (the nurse at the CF clinic at Children's Hosp) asked me about all of his symptoms (the original doctor was in infectious disease), when I told her she said they will treat him for CF no matter what. So we are moving ahead. He will have a CF workup on July 23. At lease I don't have to wait to move ahead.

 

[bdd9623]

Hi everyone,

Well it's been 2 weeks and the initial 98 most common mutations came back negative. I asked what will happen at the end of testing since his sweat tests were so high, both 56 and he has every other symptom. Because they can only confirm if he has CF, can't completely rule out, they told me they would treat him anyway. She (the nurse at the CF clinic at Children's Hosp) asked me about all of his symptoms (the original doctor was in infectious disease), when I told her she said they will treat him for CF no matter what. So we are moving ahead. He will have a CF workup on July 23. At lease I don't have to wait to move ahead.

 

[bdd9623]

Hi everyone,

Well it's been 2 weeks and the initial 98 most common mutations came back negative. I asked what will happen at the end of testing since his sweat tests were so high, both 56 and he has every other symptom. Because they can only confirm if he has CF, can't completely rule out, they told me they would treat him anyway. She (the nurse at the CF clinic at Children's Hosp) asked me about all of his symptoms (the original doctor was in infectious disease), when I told her she said they will treat him for CF no matter what. So we are moving ahead. He will have a CF workup on July 23. At lease I don't have to wait to move ahead.

 

[bdd9623]

Hi everyone,
<br />
<br />Well it's been 2 weeks and the initial 98 most common mutations came back negative. I asked what will happen at the end of testing since his sweat tests were so high, both 56 and he has every other symptom. Because they can only confirm if he has CF, can't completely rule out, they told me they would treat him anyway. She (the nurse at the CF clinic at Children's Hosp) asked me about all of his symptoms (the original doctor was in infectious disease), when I told her she said they will treat him for CF no matter what. So we are moving ahead. He will have a CF workup on July 23. At lease I don't have to wait to move ahead.

 

[JORDYSMOM]

Brenda, I'm sorry you still don't have definite answers. With there being over 1500 mutations, 98 is really a drop in the bucket. Are they continuing to test for the rest?

I am glad to hear that they are going to treat your son's symptoms. I hope you will see a significant improvement in his health. Keep us posted.

Stacey

 

[JORDYSMOM]

Brenda, I'm sorry you still don't have definite answers. With there being over 1500 mutations, 98 is really a drop in the bucket. Are they continuing to test for the rest?

I am glad to hear that they are going to treat your son's symptoms. I hope you will see a significant improvement in his health. Keep us posted.

Stacey

 

[JORDYSMOM]

Brenda, I'm sorry you still don't have definite answers. With there being over 1500 mutations, 98 is really a drop in the bucket. Are they continuing to test for the rest?

I am glad to hear that they are going to treat your son's symptoms. I hope you will see a significant improvement in his health. Keep us posted.

Stacey

 

[JORDYSMOM]

Brenda, I'm sorry you still don't have definite answers. With there being over 1500 mutations, 98 is really a drop in the bucket. Are they continuing to test for the rest?

I am glad to hear that they are going to treat your son's symptoms. I hope you will see a significant improvement in his health. Keep us posted.

Stacey

 

[JORDYSMOM]

Brenda, I'm sorry you still don't have definite answers. With there being over 1500 mutations, 98 is really a drop in the bucket. Are they continuing to test for the rest?
<br />
<br />I am glad to hear that they are going to treat your son's symptoms. I hope you will see a significant improvement in his health. Keep us posted.
<br />
<br />Stacey

 

[Ratatosk]

While it's nerve wracking that you don't have answers yet, at least they're taking this seriously and are going to treat the symptoms!

 

[Ratatosk]

While it's nerve wracking that you don't have answers yet, at least they're taking this seriously and are going to treat the symptoms!

 

[Ratatosk]

While it's nerve wracking that you don't have answers yet, at least they're taking this seriously and are going to treat the symptoms!

 

[Ratatosk]

While it's nerve wracking that you don't have answers yet, at least they're taking this seriously and are going to treat the symptoms!

 

[Ratatosk]

While it's nerve wracking that you don't have answers yet, at least they're taking this seriously and are going to treat the symptoms!

 

[bdd9623]

Yes, they are continuing the testing. I'm at a point where I don't even care about the results (sort of). I just want to start fixing him. Can anyone give me information on what to expect with a full CF workup? I know he will have a pulmonary function test - what exactly is this? What about digestive tests, etc.
Would love to know some more.

 

[bdd9623]

Yes, they are continuing the testing. I'm at a point where I don't even care about the results (sort of). I just want to start fixing him. Can anyone give me information on what to expect with a full CF workup? I know he will have a pulmonary function test - what exactly is this? What about digestive tests, etc.
Would love to know some more.

 

[bdd9623]

Yes, they are continuing the testing. I'm at a point where I don't even care about the results (sort of). I just want to start fixing him. Can anyone give me information on what to expect with a full CF workup? I know he will have a pulmonary function test - what exactly is this? What about digestive tests, etc.
Would love to know some more.

 

[bdd9623]

Yes, they are continuing the testing. I'm at a point where I don't even care about the results (sort of). I just want to start fixing him. Can anyone give me information on what to expect with a full CF workup? I know he will have a pulmonary function test - what exactly is this? What about digestive tests, etc.
Would love to know some more.

 

[bdd9623]

Yes, they are continuing the testing. I'm at a point where I don't even care about the results (sort of). I just want to start fixing him. Can anyone give me information on what to expect with a full CF workup? I know he will have a pulmonary function test - what exactly is this? What about digestive tests, etc.
<br />Would love to know some more.