Posted by Holly Murnin on March 17, 2004 at 04:54:39:
In Reply to: Daughter with Perthes age 10 posted by Judy Bruce on March 16, 2004 at 12:24:10:
Hi Judy!
My name is Holly and it seems that 2 years ago we were in a very similar situation. My daughter Jessica (now 12, then 10) was diagnosed with Perthes. We also sought treatment at Johns Hopkins. Our daughter is currently being treated by Dr. Leet, a colleague of Dr. Sponseller. Dr. Leet recommended the wait and see approach - Motrin, Range of Motion (ROM) exercises and monitoring (every 3 months). Last fall she was able to resume soccer, but she is still getting running therapy to improve her walking/running gait. We have had no surgeries or bracing so far and our Orthopedic does not expect any from this point on(Knock on wood).
I'm sure your orthos have told you that every case is different and requires different treatment. I would be happy to talk to you about our experiences. If you want you can e-mail me at murnin@olg.com. I can give you my phone number in the e-mail and you can call me.
We live in Calvert County, so I suspect your not too far away. I would have loved the oppurtunity to talk to someone in the beginning. Be sure to include the word Perthes in the subject line, as I don't usually open e-mail from unknown addresses.
There is also a very helpful Yahoo message board for Perthes families. There are many people there who have gone the surgery and bracing route and can tell you more than I can about those. In order to get access to that group, I think that you have to Email Barb Kelly at Bkelly@dol.net and request permission to join group. This is a formality to keep inappropriate postings off the message board. There is a wealth of information on that site from parents who have been through it. I hope to hear from you.
Holly Murnin
: My daughter Emily was diagnosed two weeks ago with Perthes. We have been to Johns Hopkins in Baltimore, Md to see Dr Paul Sponseller and to Georgetown University Hospital in Washington, DC to see Dr. John Dalahay. They are both suppose to be excellent. However, we got two different approaches to her care. The first was to have a surgery to release the tendon and clean out the joint and have a Petrie cast for 2 weeks. After two weeks she would have the pelvic tenotomy and be in a cast for 6-8 weeks. The other doctor suggested no surgery and thinks we should try drugs and range of motion exercises. If this is not affective then he suggests releasing the tendon and then if he still needs it to have the "shelf" placed. I'm so confused because now I have gotten completely different opinions. We are going to go for a third next week, but I would liove advice if anyone has any for me. Emily is in pain everyday and walks with a limp. She was doing gymnastics 3 times a week but we have stopped that for about 2 weeks. She seems to be pretty advanced with her Perthes and has very limited ot almost no movement in her right hip. Any thoughs I would love othear for you. Thanks...Judy