Posted by Tim on November 07, 2003 at 12:02:42:
This is an email that I received as well as the responses, I just thought it was something we all might appreciate.
Hi Tim
My name is X, My son has leg perthes. He is now 13 yrs old. He has had 13 operations and has spent most of his childhood in the hospital. My son has very low self esteem and hoping maybe you could help me or any suggestions on how I could make this easier on him. My son loves sports but was never able to play them. My son is doing better this year, he is now using a walker . This has been a very long journey for him. Even at times I can feel myself giving up. Hope you can help
X
X,
First, let me tell you that letters like yours are the hardest for me to answer. This disease has so many unknowns and differences in kids that the treatment options vary incredibly. I'm 40 yesterday :) and my bout with LP seems still like it was just the other day. I'll never forget the day that the doctor told me I may never walk again, boy I'll tell you he had my attention right away. We knew I had a problem as I was limping pretty bad. I would practice walking "normally" to prove to my mom I was OK but I knew I wasn't. Never in a million years would I have thought of what I was about to go through. At first I didn't want to go to school, scouts or any other thing that meant I had to leave my house. My mom would even carry me to the breakfast table as I didn't even want to get out of bed. When I did get out finally, people would stare at me and say things about me, it was truly horrifying for me. On a brighter note the first day I could actually walk w/o crutches, and for me that was only 4 years later, was possibly the best day of my life. I'll never forget that day either, I can still feel the huge smile I had on my face.... I stood on the back of our wooden rocking chair smiling at my brothers and sisters, it didn't take them long to know that this was a great day in my life.
Looking back there are a few things that I really feel helped me out. First was my parents, especially my mom, they would continue to tell me that I could do whatever I wanted, as long as I had my crutches, braces, sling or whatever I was supposed to be using at the time. They reinforced that it wouldn't be forever, though I truly thought that it would. They gave me lots of love, no matter how I felt, they were there for me. As far as participation in sports, at first I wasn't even allowed on the gym floor at school, people thought I would damage it, I wasn't allowed to be on a baseball field, they thought I would just get hurt. It took some doing, but we fought and I was allowed to do whatever I thought I could do. Eventually I was made the base coach for the baseball team, I'll tell you what it wasn't much but it made me feel like something, I could in fact be involved. Once and awhile during practice they would let me bat, someone either holding me or even standing on my crutches. I couldn't do too well, but even the other kids would cheer me on, oh what a feeling....
I guess the biggest thing I could tell you or anyone is not to give in. Follow the medical instructions of the path you choose, and pay attention to the things that you CAN do more than the things you cannot. Emphasize to your son that he will get better, that there are a lot worse things that can happen to a child. I know I didn't care to much to hear it then, but to be honest I did hear it, I did pay attention to it, and it sure did help me get through it. Today I am 40, I know I had LP, I am reminded of it everyday. Though I did have better times when I was younger, I had LP and that is simply a fact of life. There are many of us out here, many stories and many outcomes, all of us must do the best we can with what we have. Writing this letter tears my eyes, honestly I am full blown crying.... I lost my mom a couple years ago to cancer and I'll tell you what, when she was going in her last few weeks I was there. I held her like she held me, I told her how I loved her like she told me how she loved me, I reminded her of what she had done for me during my LP.... but unlike cancer LP lets you survive, that is a blessing....
regards,
Tim
Thank you for taking the time to read my letter. I showed this letter to my
son, It was sad for us both but we won't give up!!!! My son has severe LP. He has been dealing with this since he was 4. The doctor's are telling me
that my son needs a hip replacement but they have to wait until he stops growing. They want to give my son another operation I dont' think I can put him through another one What do you think. Sometimes I think they use him has a genie pig
X,
I really can't say too much as far as the surgeries (I'm not a doctor), and if they are really required. I do think (my opinion only) is that the doctors take the "wait and see" approach way too often, by the time there is real damage there is no alternative to the surgeries.... On the other hand, there are many degrees of LP, depending when they catch it originally has a lot to do with the whole deal as well. Have you joined the Yahoo LP group ? There are many, many people there and possibly someone else would have better answers than I.
The biggest thing I maintain, is positive attitude and never to give up. I truly believe that a positive outlook on whatever the situation can never hurt and many times can prove to help....
Tim