Some of the things I would look for in a good ped endo...

1. Have they clearly explained when and how to do stress doses by mouth. Better yet, the office should have a written sheet explaining the whens and have a place where you can write in how much.

2. Have they clearly explained when and how to give an injection and who should you contact after giving an injection.

3. Do you know how to contact someone during non-office hours. Kids NEVER get really sick during office hours.

4. Have they discussed the various labs that will be done and how often they should be.

5. Do you know how often your son is to be seen (typically every 3 months)

6. Does the staff weigh, measure, take the BP and heart rate with EVERY visit?

7. Is there a good endocrine nurse in the office?

Concerning getting a second opinion... that is a tough one. I completely understand where your husband is coming from, we are taught that we need to do this. What type of labs have been done? If an ACTH stimulation test has been done, that is pretty definitive. This is how my daughter was diagnosed. However, the ped endo did indicate (and I agree based on my limited knowledge) if we had know we were dealing with 11-beta hydroxilayse deficiency then the initial set of blood work would have been enough because her levels were that much out of control.

You might consider contacting CARES to see what information they have on ped endos in your area.

Kelly R. Leight, Executive Director
1-973-912-3895 (in New Jersey)
1-866-227-3737 (toll free out-of-state)

http://www.caresfoundation.org/

Best regards,

Janet