It is with a heavy heart that I provide this update.
Sam began to limp a little more than a week ago. He had X-rays last Friday and on Wednesday we went in to see the orthopedist. I wish I had better news, I’m still kinda in shock. I will try to explain it to you as they did to me. Sam has been diagnosed with Perthes disease. This is a condition that occurs in children. The upper portion of the femur in Sam’s left hip has lost some of its blood supply. This has caused damage to the hip joint. The medical term for this is avascular necrosis. It effects only the hip joint and no other part of the body. Perthes is most often seen in children age 2 to 12 years. It is more common in boys than in girls. Usually only one hip is affected but sometimes both hips can be affected.
Sam’s has degenerated to the point of the femur pulling forward and away from the socket. Both of Sam’s sockets are malformed and shallow. The doctor has recommended surgery which would consist of a femur varus derotation ostetomy (breaking the femur and repositioning it to work with the socket) and a possible dega osteotomy (reshaping and rebuilding the socket) to the hip versus the shelf procedure in order to reconstruct the hip and femur to fit as they should. He wants to help Sam regain as much movement and proper positioning as possible to help with his continued growth. Not doing surgery will result in the hip socket and femur to degenerate a little further and would make future reconstructive surgery very difficult. In 4 to 5 years they estimate that Sam would begin to have severe arthritic pain and his movement would be limited.
Sam would be put into a rigid brace, not cast (they only do that for young children), for up to 2 months and would be immobile. His limp would probably be worse after surgery due to that leg now being shorter. The screws and plates would be removed in another surgery in 12 months. He may require surgery on his other leg to slow its growth.
Jeff and I and our family are trying to wrap our heads around this. We will be seeking a second opinion. For those of you following the blog you know that Sam had a great vacation this summer which included hiking, he just learned how to ride his bike and had really taken off in swimming. This is not what we expected but as I have often learned on this journey with Sam, I have to put him in God’s hands and trust…believe that everything will be okay.
Faith isn't the ability to believe long and far into the misty future. It's simply taking God at His Word and taking the next step. - Joni Erickson Tada
Prayers, personal experiences with Perthes and some time to adjust and consult with all of Sam’s doctors is appreciated.
Subscribe to:
Post Comments (Atom)
Posts
Sue - that is difficult news to hear, and your family and Sam will be in my continuing prayers.
ReplyDeleteBecause I am a certifiably insane optimist, I am very happy to learn that though the condition is severe, it can be helped to a degree! It's a great thing that Sam enjoys swimming, and that it is a sport he will be able to continue even as he heals.
I'm a little surprised the doctor suggested hindering the growth of the "good" leg, however, but I'm sure the doctor knows best. In the past I have heard of surgery to slightly lengthen a shorter leg, and can't help but wonder if that would be an option?
At any rate, Sam is a fighter with a zest for life. I bet he'll overcome his new obstacles and come out stronger and more determined to succeed than before. If he can learn to ride a bike, he can do anything!
Oh my. This sounds horrific. My prayers are with you all as you navigate this next challenge. Sam is tenacious, as are you.
ReplyDeleteI second a second opinion.
Praying for guidance.
Wow that is a lot to digest. I am glad you are getting a second opinion. That is quite a bit of surgery and you want to make sure you are doing what is best for Sam. I am a bit surprised that they would want to shorten the other leg. As wonderful of a Mom as you are, as wonderful of an advocate for your son as you are, we all know you are doing what is best for Sam and will find all the right answers. Take a deep breath...one day at a time my friend, one day at a time. That is all that we can do. You are a strong lady.
ReplyDeletePraying for peace, wisdom, direction. Sending cyber hugs.
ReplyDeleteOh no, Sue. My prayers are with you and Sam.
ReplyDeleteJeanne Selep
I found your post through a Google Alert on Perthes. I wanted to take a moment to post as the mom of a son who went through Perthes and is now healed. He was 5 when he was diagnosed (because of a limp and knee pain) and just past 7 when his orthopedist declared him healed. He never had to have surgery but I know that many children do. The head of the femur has grown back now, and while it is flattened and not as round as it's supposed to be, he's doing great. He plays baseball, lacrosse, and hockey and no longer has much of a residual limp or gait that would alert someone that his hip isn't normal.
ReplyDeleteI wish you the best of luck going through this process. They told us it would take about 18 months for the bone to finish dying off and about 18 months for it to finish growing back. Our son was actually declared healed about 3 months before we were anticipating it. That was a great day! I just wanted to give you a sense that there is an end to the process and your son can be happy and healthy despite his Perthes disease. It was a scary diagnosis since there are so many unknowns and a lot of controversy over how to treat children with this condition.
If you haven't already found it, I can also pass on info about a great online support group of other parents whose children have Perthes too. Please feel free to contact me if you would just like to talk to someone whose child went through the same thing.
Sincerely,
Karla (libkarla@yahoo.com)
Also wanted to mention, here's what they told us about slowing growth in the good leg. If there is too much of a leg length discrepancy (because Perthes can damage the growth plate of the bad leg), they may do something to the "good" leg to slow it down so the other leg can catch up (they told us they hit the growth plate with a hammer, ouch!). Otherwise, they can end up with a lot of other issues due to the leg length difference.
ReplyDeleteCoincidentally, my daughter who does NOT have Perthes, is seeing an ortho soon because her legs are about a half inch different in height. It causes her back pain and made her doctor think she has scoliosis when she does not. Not sure if it's related at all to her brother's Perthes, but they do want to deal with it since it's causing pain.
Good luck!