Hi All,

 

CAH is only one of the lovely things I’ve passed along to my children.  Another is veins that hide, roll, and blow.  The result was a situation where my girls were becoming more and more afraid of blood draws, and the techs at the lab hated to see us coming.  For the past two years, we’ve abandoned blood draws in favor of 24-hour urine collections.

 

For the past couple of months, I’ve been working with Pediatrix (formerly known as NeoGen) to make 17-OHP filter paper testing available for my girls.  Pediatrix is a private lab in Pennsylvania that does a full newborn testing screen.  They have a good reputation, and they were wonderfully helpful to me.  I agreed to keep the news to myself until we all agreed that the process worked smoothly, and until the folks at Pediatrix could convince themselves that the testing would be both accurate and of value to CAH patients.

 

Many studies have concluded that filter paper testing can be helpful in the management of CAH patients.  It’s simple and safe.  There is no trip to the hospital or the lab.  You send the paper to Pediatrix, and they notify your doc of the results (they think it will usually be the next day).  You can test 17-OHP levels throughout the day instead of relying on one time point.  Just think - we’ll never have to have the “test before meds vs. test after meds” argument again.  We can have it both ways!

 

Anybody interested?

 

LauraK