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Renee's Perthes Journey
Welcome to our CaringBridge website. We've created it to keep friends and family updated about our loved one. Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.
Renee was diagnosied with Legg-Calve Perthes disease on 05/26/2010. This is a rare condition in children that is similiar to Avascular necrosis in adults. With adults, a hip replacement is what is often needed to cure the condition. With children, it is a little tricky as they are still growing and to have a hip replacement at age 9 is not ideal! See more information in our backstory.
We have gone through a few specialist who (surprise) all differ in treatment methods. Through painstaking research, we found Dr. Shawn Standard at the Rubin Institute for Advanced Orthopedics at Sinai hospital in Baltimore. Dr. Standard is an expert in Perthes and has treated numerous cases. This particular disease is really not a disease but a condition in which the head of the femur has lost blood flow causing it to die. Renee has been in pain since the first of May that worsens each day.
Her first symptoms were in Nov 2009, where there was a period of 3 days in which she was in pain and could not walk. After that period -- she was fine until around 05/05/2010. She developed a limp that was not injury related. This was her ONLY symptom -- besides pain that traveled up and down the left leg.
We took her to the Dr. who initially diagnosed Strep Induced Arthritis (scary stuff), but then once her strep cleared up, the pain worsened and so did the limp.
After many trips to the ER, we finally had a name for the problem, Legg-Calve Perthes Disease. We then went on a hunt for information -- that is what happens when you have two geeks for parents :). We were able to find the most awesome support group (through Yahoo). The members of this group have all had children with the same disease who are in various stages of the process. This is how we found Dr. Standard. He is so awesome (I know-- totally overused word but he is so awesome!!! think of the little hamster in Bolt -- that is how I feel when I think of how great this guy is) he has web chats and reviews x-rays for children who have this disease without us even being a patient (read free!!!). Well of course I checked him out and found that he is really what he represents. He cares for the kids and parents and wants to make the quality of life better for everyone affected by this disease.
After he reviewed our x-rays in August, we scheduled our appointment in Baltimore on 08/19/2010. More x-rays, more info, and now we are set to have surgery on 09/14/2010. Renee will have Perthes Hip Distraction and possible core decompression. She will have an external fixator in place for 4 months and require extensive physical therapy. We will be in Baltimore for about a month (the whole family) and then have to make numerous visits back during the 4 months and even after.
But the good news is -- 10 -11 months of yuck, and my little bear will be able to run, walk, sit cross-legged on the floor, go up stairs, and have no pain!!!!!!!! I am going to try to post some links to the surgery and the fixator as it is somewhat scary looking.
Unfortunately our story is not going to end so quickly. Renee's femoral head has developed both overgrowth / abnormal growth and what appears to be collapse since the initial xrays from frame removal. We still havea long way to go before we are pain free but we are focusing on all of the good and what we can do instead of dwelling on the bad.