Tammy,
Blood spot (filter paper) testing is not widely available in the United States. Generally, the only laboratories that have the proper equipment are the state-run labs that also do new-born screening tests for CAH.
However, several years ago, a parent on this mb (Laura K.) spoke with Pediatrix Screening, a commercial lab in Pennsylvania, and convinced them to offer blood spot testing to the general public. I know Laura tried this with her girls a couple of times, but am not sure if she ever did it regularly. You might try posting to her directly, though I don’t know if she is a regular visitor to the mb anymore. Or, you can call Pediatrix yourself to see if they still offer this...it’s been a number of years and I am not sure they ever got a big response. The number is 1-866-463-6436.
You can also ask your endo to contact the government laboratory in your state, if you live somewhere that has newborn screening for CAH. I don’t think they will do this regularly, but may honor a special request from your MD.
My son’s endocrinologist, Dr. Scott Rivkees of Yale, was also co-author of a study using filter paper samples to monitor control in CAH (see below.) The study was done at a hospital in Australia, not the U.S., but if your doctor has further questions, she could probably also contact him.
Good luck!
*******************
| 1: J Pediatr. 1999 Feb;134(2):185-9. | Related Articles,[unauthorised script deleted] language=JavaScript1.2>[unauthorised script deleted] language=JavaScript1.2> Links |
Home monitoring of 17 hydroxyprogesterone levels in congenitx127drenal hyperplasia with filter paper blood samples.
Bode HH, Rivkees SA, Cowley DM, Pardy K, Johnson S.
Sydney Children’s Hospital and School of Paediatrics, University of New South Wales, Australia.
OBJECTIVE: The purpose of this study was to evaluate the usefulness of 17 hydroxyprogesterone (17OHP) determination in dried filter paper blood samples from patients with congenital adrenal hyperplasia caused by 21-hydroxylase deficiency. It was hypothesized that these home samples would enhance patient treatment. STUDY DESIGN: Results of 17OHP determination in simultaneously collected venous and dried filter paper blood samples were compared to establish assay reliability. Thereafter, parents mailed dried filter paper blood samples collected before each hydrocortisone dose. RESULTS: The 17OHP levels in wet and dried blood samples correlated well (r = 0.98). Results did not change when stored for 2 weeks under various conditions. Blood sampling at different times of the day provided insights into the patterns of 17OHP secretion and identified times of inadequate adrenal suppression. Dose adjustments were then made considering the time of day when adrenal suppression was inadequate. CONCLUSION: Home monitoring of 17OHP is a reliable and practical approach for assessing adrenal steroid activity in patients with congenital adrenal hyperplasia. Considering the time of day of 17OHP elevations also facilitates hydrocortisone dosing adjustment.