Hi Barb,

My older daughter Julia was diagnosed at age 7.  We gave the ACTH stim test to my younger daughter Claire (then 4) just to be sure she didn’t have it as well.  She does.  At that age, she didn’t have any symptoms.  Treatment has prevented the bone age advancement and height loss that my older daughter suffered. 

The girls are now 10 and 13, and both are well controlled on very low doses of Cortef.  Julia has a BSA of 1.37m2 and a total dose of 7.5mg daily (2.5mg/3am, 2.5mg/7am, 1.25mg/11:30am, and 1.25mg/3:30pm), for an effective dosage of 5.5mg/m2/day.  Claire has a BSA of 1.19m2 and a total dose of 5mg daily (1.7mg/3am, 1.7mg/7am, 0.8mg/11:30am, 0.8mg/3:30pm), for an effective dosage of 4.2mg/m2/day.

My advice would be to get your older daughter’s treatment squared away before you worry about testing your younger daughter.  When you can breathe again, ask the endo to do the stim test on the little one.  An alternative is to do genetic testing.  Unfortunately, not all defects are identified so you may still be left wondering.

You have my sympathy.  Diagnosis was a tough time for our family, but it has gotten much easier. 

LauraK