More from the Dr.

[candiebar76]

After leaving several messages with the Dr. speaking with the Dr. at Denver Children's Hospital, the hospital that ran the test (PVH), & the CFF Denver chapter we have concluded that the 49 chloride along with a medical history of Failure-to-Thrive (infant), Hyperthyroid (infant), anemia (infant), prolonged bronchitus (infant to age 2 neb treatment), and recurrent sinusitis that Maxwell would benefit from the DNA test. The Dr. called our insurance to get the test approved and after going over history and the number they asked Maxwell's race, caucasion, test approved! We will be having the test done before the weeks end and have the results within 10-21 days.

Candace & Bill, still waiting for results

 

[2005CFmom]

I am so happy to hear you were able to get the DNA test. Now you will finally find out if he has CF and start proper treatment....or find out (with better assurance) that it is not CF.

I know that sometimes all this waiting is the hardest part...hang in there!

 

[julie]

Way to go Candace and bil!!!! I suppose I could say a tentative welcome to the world of a CF parent (in my case, CF spouse). If your child does have CF (and I'm no doctor but from what I've read in your postings about maxwell, it sounds like CF!) this is just the beginning of fighting for things for him. You ought to be proud of yourself. It's not always easy to stand up to these doctors!

Out of curiosity, do you know if you are having the standard DNA test of the extended mutation panel? The standard test covers between 25-89 of the most common CF mutations, which is great it determining a diagnosis if your son has common mutations.
The extended mutation panel is available through 2 different companies currently (ambry Genetics and Quest Diagnostics, I personally would recommend the latter for insruance reasons) and tests for 1300 of the KNOWN CF mutations.

The wait is going to seem like forever. Please keep us posted on the outcome, and I am really curious as to what test you are having (standard or extended).

Best of luck,

 

[Jem]

Congrats on getting the test approved. It is rediculous how many hoops you have to jump through to get approval but now you can move forward either way. I have you all in my prayers.

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>candiebar76</b>[/ after going over history and the number they asked Maxwell's race, caucasion, test approved! within 10-21 days.



Candace & Bill, still waiting for results</end quote></div>


So if he was black or hispanic....chances are good the test would have been denied since the chances of him having it would be less? What a crock?!

 

[candiebar76]

<div class="FTQUOTE"><begin quote>So if he was black or hispanic....chances are good the test would have been denied since the chances of him having it would be less? What a crock?! </end quote></div>

Well the statistics show that it is less likely in other races and yes I agree it is a crock! However, in this case it gave us immediate approval for the test and perhaps the answer we have been looking for many years.