so confused after clinic appointment

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilliansmom</b></i>

My cousins son has the same doctor, and has been doing CPT for years, since he was a baby. He is 18 now. I do trust the doctor, it just seems like it is very different from what everyone else's kids are doing.</end quote>

This is exactly why the "atypical" label worries me. It's hard to understand why a doctor would treat patients so differently.

Stacey

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilliansmom</b></i>
<br />
<br />My cousins son has the same doctor, and has been doing CPT for years, since he was a baby. He is 18 now. I do trust the doctor, it just seems like it is very different from what everyone else's kids are doing.</end quote>
<br />
<br />This is exactly why the "atypical" label worries me. It's hard to understand why a doctor would treat patients so differently.
<br />
<br />Stacey
<br />
<br />

 

[Ratatosk]

So based on the sweat test being normal... That would mean that DS has atypical CF despite having pretty common cf mutations. That's why I hate the atypical statement because all to often it's often used in conjunction with the term "mild" cf and as a reason to not be proactive.

Our local CF clinic has some parents doing CPT and using a vest, others only if and during symptoms (pneumonia). And I know of two teenagers who've never ever done cpt or have vests. The inconsistency is crazy!

 

[Ratatosk]

So based on the sweat test being normal... That would mean that DS has atypical CF despite having pretty common cf mutations. That's why I hate the atypical statement because all to often it's often used in conjunction with the term "mild" cf and as a reason to not be proactive.

Our local CF clinic has some parents doing CPT and using a vest, others only if and during symptoms (pneumonia). And I know of two teenagers who've never ever done cpt or have vests. The inconsistency is crazy!

 

[Ratatosk]

So based on the sweat test being normal... That would mean that DS has atypical CF despite having pretty common cf mutations. That's why I hate the atypical statement because all to often it's often used in conjunction with the term "mild" cf and as a reason to not be proactive.
<br />
<br />Our local CF clinic has some parents doing CPT and using a vest, others only if and during symptoms (pneumonia). And I know of two teenagers who've never ever done cpt or have vests. The inconsistency is crazy!

 

[Melissa75]

To throw another two cents in the bucket, trapped mucus can cause damage...period, regardless of the bacteria your kids do or don't culture. That is why it is so important to get it out.

I have damage/scarring, and many of my exacerbations do not culture anything. I am sure I would have worse bronchiectasis if I had CF bugs in my lungs, nonetheless, my FEV1 has dropped 30 percentage points in the past ten years and I spent a lot of those years sick.

CPT, the acapella, the Vest AND exercise are hugely important for getting mucus out. If your dr thinks the Vest is unlikely to get covered in your case (I did not get coverage for the Vest b/c of no CF and my particular insurance), he should make that clear. In my case, I ended up returning the Vest after a long appeal process because my husband is good at CPT and I became an exercise addict. But manual CPT is free and the acapella is $60 or so.

When my eight year old gets pneumonia (2x in his life, he is a less severe chip off the old block), I do CPT on him. My neighbor had me to it on her son. It is the old fashioned way pneumonia was treated on anyone, CF or no.

 

[Melissa75]

To throw another two cents in the bucket, trapped mucus can cause damage...period, regardless of the bacteria your kids do or don't culture. That is why it is so important to get it out.

I have damage/scarring, and many of my exacerbations do not culture anything. I am sure I would have worse bronchiectasis if I had CF bugs in my lungs, nonetheless, my FEV1 has dropped 30 percentage points in the past ten years and I spent a lot of those years sick.

CPT, the acapella, the Vest AND exercise are hugely important for getting mucus out. If your dr thinks the Vest is unlikely to get covered in your case (I did not get coverage for the Vest b/c of no CF and my particular insurance), he should make that clear. In my case, I ended up returning the Vest after a long appeal process because my husband is good at CPT and I became an exercise addict. But manual CPT is free and the acapella is $60 or so.

When my eight year old gets pneumonia (2x in his life, he is a less severe chip off the old block), I do CPT on him. My neighbor had me to it on her son. It is the old fashioned way pneumonia was treated on anyone, CF or no.

 

[Melissa75]

To throw another two cents in the bucket, trapped mucus can cause damage...period, regardless of the bacteria your kids do or don't culture. That is why it is so important to get it out.
<br />
<br />I have damage/scarring, and many of my exacerbations do not culture anything. I am sure I would have worse bronchiectasis if I had CF bugs in my lungs, nonetheless, my FEV1 has dropped 30 percentage points in the past ten years and I spent a lot of those years sick.
<br />
<br />CPT, the acapella, the Vest AND exercise are hugely important for getting mucus out. If your dr thinks the Vest is unlikely to get covered in your case (I did not get coverage for the Vest b/c of no CF and my particular insurance), he should make that clear. In my case, I ended up returning the Vest after a long appeal process because my husband is good at CPT and I became an exercise addict. But manual CPT is free and the acapella is $60 or so.
<br />
<br />When my eight year old gets pneumonia (2x in his life, he is a less severe chip off the old block), I do CPT on him. My neighbor had me to it on her son. It is the old fashioned way pneumonia was treated on anyone, CF or no.

 

[TonyaH]

Melissa,
Your point is a very good one!

My son uses the vest, flutter, and sometimes manual CPT. He actually seems to get the best results with his flutter! Like the acapella, it runs about $60 and some clinics even have them on hand to distribute to patients free of charge. (kind of like handing out drug samples) It might be worth asking next time you take your little one back to clinic.

 

[TonyaH]

Melissa,
Your point is a very good one!

My son uses the vest, flutter, and sometimes manual CPT. He actually seems to get the best results with his flutter! Like the acapella, it runs about $60 and some clinics even have them on hand to distribute to patients free of charge. (kind of like handing out drug samples) It might be worth asking next time you take your little one back to clinic.

 

[TonyaH]

Melissa,
<br />Your point is a very good one!
<br />
<br />My son uses the vest, flutter, and sometimes manual CPT. He actually seems to get the best results with his flutter! Like the acapella, it runs about $60 and some clinics even have them on hand to distribute to patients free of charge. (kind of like handing out drug samples) It might be worth asking next time you take your little one back to clinic.