Noah's first PFT

[valigirl21]

Thanks to every1 that posted so far. In answer to the meds question he is taking Advair 230mg, vyramst, and zyrtec. He has not begun the vest, but Medicaid is funny about paying for it without the dx, although the pulm and pedi agree its probably a good idea.

As for testing, he had the 97 AND thefull Ambry, both neg.

Thanks Laura for the encouragement on the PFT. Hopefully as e gets better at it the numbers will go up.

This is a wonderful site and I appreciate everyones input.

 

[valigirl21]

Thanks to every1 that posted so far. In answer to the meds question he is taking Advair 230mg, vyramst, and zyrtec. He has not begun the vest, but Medicaid is funny about paying for it without the dx, although the pulm and pedi agree its probably a good idea.

As for testing, he had the 97 AND thefull Ambry, both neg.

Thanks Laura for the encouragement on the PFT. Hopefully as e gets better at it the numbers will go up.

This is a wonderful site and I appreciate everyones input.

 

[valigirl21]

Thanks to every1 that posted so far. In answer to the meds question he is taking Advair 230mg, vyramst, and zyrtec. He has not begun the vest, but Medicaid is funny about paying for it without the dx, although the pulm and pedi agree its probably a good idea.

As for testing, he had the 97 AND thefull Ambry, both neg.

Thanks Laura for the encouragement on the PFT. Hopefully as e gets better at it the numbers will go up.

This is a wonderful site and I appreciate everyones input.

 

[valigirl21]

Thanks to every1 that posted so far. In answer to the meds question he is taking Advair 230mg, vyramst, and zyrtec. He has not begun the vest, but Medicaid is funny about paying for it without the dx, although the pulm and pedi agree its probably a good idea.

As for testing, he had the 97 AND thefull Ambry, both neg.

Thanks Laura for the encouragement on the PFT. Hopefully as e gets better at it the numbers will go up.

This is a wonderful site and I appreciate everyones input.

 

[valigirl21]

Thanks to every1 that posted so far. In answer to the meds question he is taking Advair 230mg, vyramst, and zyrtec. He has not begun the vest, but Medicaid is funny about paying for it without the dx, although the pulm and pedi agree its probably a good idea.
<br />
<br />As for testing, he had the 97 AND thefull Ambry, both neg.
<br />
<br />Thanks Laura for the encouragement on the PFT. Hopefully as e gets better at it the numbers will go up.
<br />
<br />This is a wonderful site and I appreciate everyones input.

 

[letefk]

Just for a point of comparison, here are the medications my girls are on for CF-related respiratory stuff: Xopenex, Flovent (equivalent to Pulmicort), Zyrtec, Singulair, Nasonex, Pulmozyme, and CPT 2-4 times a day. For CPT, we use Vest, acapella, and hand pats, depending on need and where we are.

Pulmozyme is very expensive, and insurance will not likely pay for it until you can prove 'need." We could not get it until after the first hospitalization. Same for the Vest. But that drug, with CPT, has made a huge difference for us.

Our clinic was very helpful in getting these approved. Since our girls are atypical, the insurance co. wanted to treat them as if they were carriers, not CF patients. The clinic sent letters and documentation, and other than waiting and worrying, we did not have to do anything. I don't know if this is the experience of others, but for us, the CF clinic has really been our ally. They know how to make the system work for us.

 

[letefk]

Just for a point of comparison, here are the medications my girls are on for CF-related respiratory stuff: Xopenex, Flovent (equivalent to Pulmicort), Zyrtec, Singulair, Nasonex, Pulmozyme, and CPT 2-4 times a day. For CPT, we use Vest, acapella, and hand pats, depending on need and where we are.

Pulmozyme is very expensive, and insurance will not likely pay for it until you can prove 'need." We could not get it until after the first hospitalization. Same for the Vest. But that drug, with CPT, has made a huge difference for us.

Our clinic was very helpful in getting these approved. Since our girls are atypical, the insurance co. wanted to treat them as if they were carriers, not CF patients. The clinic sent letters and documentation, and other than waiting and worrying, we did not have to do anything. I don't know if this is the experience of others, but for us, the CF clinic has really been our ally. They know how to make the system work for us.

 

[letefk]

Just for a point of comparison, here are the medications my girls are on for CF-related respiratory stuff: Xopenex, Flovent (equivalent to Pulmicort), Zyrtec, Singulair, Nasonex, Pulmozyme, and CPT 2-4 times a day. For CPT, we use Vest, acapella, and hand pats, depending on need and where we are.

Pulmozyme is very expensive, and insurance will not likely pay for it until you can prove 'need." We could not get it until after the first hospitalization. Same for the Vest. But that drug, with CPT, has made a huge difference for us.

Our clinic was very helpful in getting these approved. Since our girls are atypical, the insurance co. wanted to treat them as if they were carriers, not CF patients. The clinic sent letters and documentation, and other than waiting and worrying, we did not have to do anything. I don't know if this is the experience of others, but for us, the CF clinic has really been our ally. They know how to make the system work for us.

 

[letefk]

Just for a point of comparison, here are the medications my girls are on for CF-related respiratory stuff: Xopenex, Flovent (equivalent to Pulmicort), Zyrtec, Singulair, Nasonex, Pulmozyme, and CPT 2-4 times a day. For CPT, we use Vest, acapella, and hand pats, depending on need and where we are.

Pulmozyme is very expensive, and insurance will not likely pay for it until you can prove 'need." We could not get it until after the first hospitalization. Same for the Vest. But that drug, with CPT, has made a huge difference for us.

Our clinic was very helpful in getting these approved. Since our girls are atypical, the insurance co. wanted to treat them as if they were carriers, not CF patients. The clinic sent letters and documentation, and other than waiting and worrying, we did not have to do anything. I don't know if this is the experience of others, but for us, the CF clinic has really been our ally. They know how to make the system work for us.

 

[letefk]

Just for a point of comparison, here are the medications my girls are on for CF-related respiratory stuff: Xopenex, Flovent (equivalent to Pulmicort), Zyrtec, Singulair, Nasonex, Pulmozyme, and CPT 2-4 times a day. For CPT, we use Vest, acapella, and hand pats, depending on need and where we are.
<br />
<br />Pulmozyme is very expensive, and insurance will not likely pay for it until you can prove 'need." We could not get it until after the first hospitalization. Same for the Vest. But that drug, with CPT, has made a huge difference for us.
<br />
<br />Our clinic was very helpful in getting these approved. Since our girls are atypical, the insurance co. wanted to treat them as if they were carriers, not CF patients. The clinic sent letters and documentation, and other than waiting and worrying, we did not have to do anything. I don't know if this is the experience of others, but for us, the CF clinic has really been our ally. They know how to make the system work for us.