Christopher is a wonderful, fun-loving, active boy with Legg-Calve-Perthes disease. He’s in many sports – flag football, basketball, baseball and soccer. All of that came to a screeching halt on December 30, 2010. He was officially diagnosed with Legg-Calve-Perthes disease in the left hip. The orthopedic surgeon had originally diagnosed him with Meyer’s Dysplasia. Our Houston physicians told us to ‘wait and see’ what develops over the next six months. This is familiar story with children with Perthes.
The Beginning
It all started in March 2010. Christopher was playing basketball and one day woke up with a limp. We thought it was just an basketball injury; a kid had forgotten which sport he was playing when he tackled Christopher on the basketball court. Christopher had fallen hard on his right hip but never bruised. After a couple of weeks with no improvement, we took him to the pediatrician. It was thought to be ‘growing pains’ but we were told if it didn’t get better in a week to come back. So, we returned, this time for X-rays and it was the shock of our life. When our pediatrician called and said ‘I need you to grab a pen and sit down,’ it was hard to keep my composure. She rattled off a lot of information and said Christopher had Legg-Calve-Perthes disease.
The Diagnosis
We immediately made two appointments with the top pediatric orthopedic surgeons in the area. The first physician barely looked at Christopher’s X-rays and said it was Perthes and to come back in two weeks to determine if the other hip was affected. The second physician immediately ordered an MRI and new X-rays. He determined it was possibly Meyer’s Dysplasia. This was music to our ears. He said we would have to ‘wait and see.’ So, Christopher didn’t run or jump for the next five months and we returned in August 2010. The X-rays looked promising and the physician said Christopher could return to full contact sports. Christopher was ready to play tackle football but my ‘mommy intuition’ came back into play and I have to say Dad was in complete agreement too. We decided that he could play flag football. The Doctor said he would see us in March 2011 and he expected Christopher to be completely healed. Christopher’s team went on to win the championships. It was Dad’s first time coaching the team.
The Day of Reckoning
In November 2010, Christopher started to complain about his other leg hurting. I immediately made an appointment with the orthopedic surgeon but we missed it due to a camping accident. By the time we went to the rescheduled appointment in December, Christopher was taking one Aleve a day due to the pain. After the X-rays were taken, we were given the bad news. It was official; Christopher had Legg-Calve-Perthes in the left leg but not the right. It was the day before New Year’s Eve and I really didn’t feel like celebrating after that. Christopher was already on a basketball team and practicing with them. It was his third year with the team.
Find the Expert
Through the tears of the news, all I could think was ‘find the expert.’ I hadn’t had time to process everything. My dear friend, you know who you are, told me to find a support group for Perthes. I quickly perused the Internet and found nothing. Within seconds, my friend was sending me links to various blogs and support groups for Perthes. One of those links lead me to Dr. Standard and I’m so grateful. It was a Facebook Perthes Support group. Dr. Standard offers a web chat to anyone with Perthes and will review your X-rays electronically and let you know his opinion. I sent off all of Christopher’s X-rays to Dr. Standard and he confirmed that Christopher had bi-lateral Perthes. We were fortunate that Dr. Standard was in-network with our insurance plan and we quickly made an appointment.
The Truth
We visited Dr. Standard at the Ruben Institute of Advanced Orthopedics in Baltimore on February 9, 2011. We took X-rays and Dr. Standard said Christopher is ‘ancient’ in Perthes years. He has had at least 2 1/2 years involvement in the left hip and just starting in the right. He said we could do nothing or have a core decompression surgery that could possibly shorten Christopher’s Perthes time in half. I didn’t blink an eye and scheduled the surgery right then and there. Dr. Standard spent more than two hours with us answering all of the questions we had. He is truly the most genuine physician I have ever met (and I used to work with many physicians at a hospital).
Hope for the Future
We had the core decompression surgery and bone stem grafting (bone marrow transplant) with botox injections on the right side March 25, 2011 and the same procedure on April 29, 2011 for the left. We know we are taking a risk because there is no guarantee it will be successful. We have a 50/50 chance of success. I truly believe we are in the right place and God is in the driver seat. Christopher is in so much pain some days that he cannot walk without crutches or a walker. He has a great attitude and told me he is ready to put this Perthes behind him and ‘kick it’ old school.
The Results
We have save the right hip. If you didn’t know that Christopher had perthes, you can’t tell in the right hip. The left hip is a train wreck. He had bone regrowth within six weeks and everything was looking good. Then, October 2012, it started to impinge. We are now looking at a head splitting ostetomy sometime in the future. Dr. Standard said Christopher will let him know when it’s time because the pain will be unbearable.
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