Congenital Adrenal Hyperplasia

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re: Dealing with our pediatric endocrinologist's fragile ego – advice please
Jun. 16th, 2008   2:42pm

You are doing exactly what you should be doing- watching out for the well being of your child by doing some research and exploring your options!

It took me a while to realize this, but any doc who is not willing to stop and listen to your questions and then give a reasonable explaination is not worth going to. When my daughter was born, my daughter's pediatric endo was willing sit and talk with me until all my questions and concerned were answered and addressed. Conversely, her plastic surgeon dealing with her cleft palate was what I now call a 'doorknob doctor'- the whole time I tried to get some answers out of him, he was trying to get out of the room! We now have a new plastic person who answers my questions and we still go to our dear pediatric endo. After all, the more you know about something, the better equipped you are to deal with it.

Ultminately, being on pred a month or two should not affect adult height or bone density but are there any other pediatric endos in the area that you could get a second opinion with ASAP? Whatever endo you do end up selecting to treat your daughter, you're probably going to be dealing with them a long time- you'll want to find someone you can deal with, and hopefully even like! You can always contact the CARES Foundation to see if they could recommend a good pediatric endocrinologist in your area.

By the by, I'm also in research and I also gleaned every scrap of information I could from the journals after my daughter was born. It's a lot easier to learn about CAH with a science library at your fingertips! Whatever you do, tho, don't stop asking questions until you get satisfactory answers- good luck-

MarthaF

 

MarthaF




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