Posted by Joel on January 20, 2004 at 10:48:48:
In Reply to: 3yr old boy just diagnosed with perethes disease posted by sarah on January 19, 2004 at 02:06:27:
Sarah,
Please tell your friend that there is hope. I was diagnosed with Perthes when I was 4 (almost 5). I also had the surgery because that's what my parents felt was the best method _FOR ME_. Know that there are a variety of treatments out there, and there seems to be no consensus in the medical community on what is the ideal treatment. So, I would suggest to any parent of a child with Perthes to do what anyone should do regarding a serious diagnosis: Find a doctor whose treatment plan fits with what _you_ feel is best. Make the doctor convince you. If your gut says that his/her treatment is not in lune with what you think should be done, get a second opinion. If you don't like the doctor personally, find one that you do like because you will be seeing this person for a while.
Once again, in my case, the first fellow my parents took me to just did not seem to them to know what he was doing. Therefore, they took me to another doctor, whom they loved and who did a marvelous job. Following a 6 month "Wait and See" period, it seemed that things were not improving, so I was scheduled for the surgery because they felt that I would not like the sling/crutches that was also mentioned. The long and the short of it is that I was in a body cast for 6 weeks and then on crutches for another couple of months. After that, I had to visit a follow-up doctor (not the same as the one who did the surgery because we had moved) once a month or so for X-Rays and Range of Motion (ROM) tests for about 3 years.
I know about being an active child. I was, too. My folks say that I was like a rubber ball in an enclosed room. Anyway, after enough visits, the follow-up doctor cleared me to do anything I wanted. It was a great day (it compared to the feeling I had when my orthodontist took my braces off)! After that, I was just like all of the other kids and could do anything that they could. One possible exception that I just discovered is that LP can be a deterring factor for military service.
But, there is hope. I am now 27 and in good health. I can do anything I want and have no real pain. If you or your friend have any further questions, please email me and I will be happy to help.
: hi my friend is a youn mother of 2 and her eldest jake age 3 almost 4 has just been diagnosed with perethes she discribed to me that her sons hip ball joint has faded away to half the size it should be and that he will have to get an operation..
: she naturally is devstated..mainly because of his interest shown in sports already and how much he loves to participate in any play sport even at his young age..she is unsure of the future that this disease will bring for her son and i would love to give her some feed back on what is to come of this and what are the long term effects.
: she is soon to get a computer for herself and i think a support group of some kind would really be good for her..so if you could help out with any info on the disease and support groups it would be great
: thanbk for your time.....sarah.