Re: Information???


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Posted by Joel on March 26, 2003 at 13:54:20:

In Reply to: Information??? posted by Caprina on March 24, 2003 at 12:05:22:

Back in 1982 when I was diagnosed with this disease, my parents got most of their information from a neighbor who was a nurse. I've been doing research on this disease lately in order to better understand what happened to me. Mostly I've found the internet to be very useful. Unfortunately, doctors are pretty closed mouthed about a lot of things. I believe that this is partly because of malpractice suits, partly because of HMOs, and partly because they want to seem all-powerful and all-knowing.

Now, don't blame yourself for your daughter's condition. You took her to the doctor and then you followed the doctor's advice. You have done nothing to be ashamed of. The doctor should have realized the problem, but didn't. It's HIS/HER job, not yours, to diagnose diseases and treat them. This is going to be a painful time for everyone, but with a lot of love and support, it can bring your family closer together. I agree with Terry. Push the doctor for information. If you don't like/trust the doctor or his/her prescribed treatment method, get a second, third, fourth (or more) opinion until you are satisfied. I will be happy to assist if I can.

: Hi, My 8 year old daughter was diagnosed with Perthes in August. I've been doing some research on the internet about the disease but that's been my only source of information. My doctor has not been very informative and has actually been suprised by the disease's progression in my daughter. After reading other people's stories, I find that what has been happening to my little girl is pretty standard. My basic question is...where is everyone getting your information. I am a tiger mom and will do anything for my kids...I feel like I've let her down by trusting the doctor to give my all the information relating to Perthes. Are your doctors giving you the information? Are you finding it yourselves somewhere? How do you know so much about the braces and surgeries and when or if to use them? Madison was diagnosed...I was told to give her Advil when she hurt and was sent home. I finally got her PT. Is waiting what most Perthes parents do? If someone has answers, please let me know.
: Caprina




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