Legg Perthes? - Bone Disorders Message Board

pip48a · 10-26-2003, 09:21 AM

I am looking for anyone who might have had Legg Perthes Desease as a child and is now living with the result of it? I have a 28 year old son that now has osteoarthritis and need hip replacement. Any advice?

callie3 · 10-26-2003, 01:43 PM

Do a google search under "Avascular Necrosis" AVN is a disease(my husband has it) that causes the bones to die at the joints(hip replacements and core decompressions are common among sufferers) but from my research on the disease I have found that Perth's disease is what AVN is called in children. There is a site devoted exclusiveley to OVN/AVN and will answer all of your questions. My husband did not have Perth's as a child. He developed AVN after taking steroids for a hernated disc (prednisone). I know another 32 year old woman who took prednisone and developed AVN and just had both hips replaced. I remember reading about the Perths disease being linked with AVN on the site and being classified as the childhood version. There is a previous post on this board from a man who's was asking the same questions about a 10-11 year old boy about a month ago. Good luck to your son. OVN/AVN is a very painful,time consuming disease. He is lucky to have a good support system in place. My husband and I have been going thru this for 2 years and still face more surgery and numerous doctor visits. Watching him struggle in pain is hard because I can't help him there, I can only try to stay abreast of the latest info and be ready to quiz the doctor at every visit. I think that is what I have been able to do the best for him. I refuse to let him be blindly led down every path the doctor suggests without investigating everything about it and then making informed decisions about how it may affect us personally. It would be so easy to just trust in a doctor but I've learned that to them,we are just another name on a chart and another body on the operating table so its up to us to question and investigate EVERYTHING and ask people who have been there if this is what is really best and if it is as successful as we are led to believe.

Tony King · 11-13-2003, 03:13 PM

Hi. I am looking for any perthes person who uses crutches. The reason I ask is that I am having problems with my son's school and our local Hospital. So if you could help I would be very greatfull, or if you know any one or if you could pass this on.

E mail [removed]

Many thanks.
Tony.

Quote:

Originally Posted by pip48a

I am looking for anyone who might have had Legg Perthes Desease as a child and is now living with the result of it? I have a 28 year old son that now has osteoarthritis and need hip replacement. Any advice?

riggs · 11-16-2003, 12:41 AM

I had this disease at age 6, I am female and I am now 40. I have a slight limp and occasional aches, but other than that, I really dont think about it. I wish I could help more but I seem to have the same health concerns as most people my age. If you have any specific questions - post again and I'll help if I can.

precious_1_r_we · 12-28-2003, 11:37 PM

I was diagnosed with Legg Calve Perthes Disease at age 10 by age 12 i had a right hip fusion. I am now 26 years old and the mother of 2 boys. I too have athritis in both hips. It is very painful and I use a cane, and wheelchair when needed. I have been to ortho doctors after ortho doctors and Unfortunatly someone that is our age cannot have a replacement now. The main reasons why are we will outlive the replacement which will result in future replacements. With every replacement there is bone loss eventually by the time we are in our late 60's early 70's the quality of the bone isnt good enough to hold because by that time we would be working on our 3rd or 4th replacement. It's a really tough situation. I have been looking for a doctor to do it for 3 years now and can not find one. They all say that i am perfect cantidate for a replacement x-ray, pain, and health wise however doing one so young would make my quality of life worse when i become older than it is now.
also when i was in school with LCPD i used crutches and a wheelchair. If you are haveing problems with the school accomidating your son and crutches mention the American's with Disabilities Act. It is manditory for all public schools to accomodate the disabled whether it be a lift for stairs or letting the child out of class early to accomodate them with crutches. I (and 1 per to carry my books) was allowed out of class 5 minutes early so that i wouldnt get knocked down during class change. They also bought a lift to get me up stairs.