[Tobra]

Peter, the steroids are a part of most treatment plans for this, my point was to proceed with caution. The catastrophic side effects are indeed very rare, say one in a million, that is fine for about 999,999 people in the mix, but for that one guy...

Clearly this is something best addressed by the treating doctor, but here is a flash for you, lots of doctors communicate poorly and the patient leaves with more questions than they walked in with, or fail to mention or make clear some pretty significant things.

If I thought it were a disservice to disseminate factual information I would not do so. There are a lot of scary treatment regimens out there, talk to anyone with RA or being treated for cancer. This kid will be taking steroids at some point, but that does not make them any less scary. The eye can only see what the mind knows. If you are in the dark about what could happen, you will never realize if it does.

I would encourage someone with a complex problem or chronic disease such as the ones mentioned keep a notebook. Write down all your questions you think of at home and what the doc is telling you during visits. Keeps things focused during visits and improves your understanding of what is happening.

Gary makes a good point. Your doctor spent years to learn what they know. It is ridiculous to think you will gain much insight when you google Duchenne, Charcot or any other dead French neurologist's names compared to asking a guy who has dedicated his life to understanding and treating a disease process.