Name : Hunter (Mother, Donna)
E-mail : donnaorman2@aol.com
Child: 16 months old
Location: Milan, TN
Areas affected: Left foot and left lower leg
Personal History:
My son was diagnosed with melorheostosis of the left foot and the lower left leg on 12/30/03 by Dr. Susan Austin an Orthopadedic Pediatrician, through the Le Bonheur Childrens Hosipital of Memphis, TN. Our local Pediatrician, Dr. J. Todd Blake of the Childrens Clinic of Jackson, TN, sent us to her upon referral. I first noticed the left leg and foot were different from the right at the age of 5 to 6 months. At the six month check up, I mentioned this to Dr. Blake; he suggested to wait until Hunter started walking to see if the legs would catch up in size and shape.
Hunter never crawled, he scooted on his bottom with the right leg tucked underneath him and the left affected leg as the puller. Upon the 15 month-well baby check up, Hunter was walking for almost 2 months. Dr. Blake examined his leg for changes and found a visual leg length difference. We then were sent for x-rays of both legs. The x-rays show 7/8ths of an inch difference in the leg lengths. He sent us to Dr. Susan Austin of Le Bonheur. She set up the MRI and upon the results we were diagnosed with melorheostosis. My son walks on the inside of his foot, never walking flat footed. His 3rd,4th,and 5th toe are contracting, leaving them in an upward point. His foot and leg are thicker and hardening. Now we are having trouble with shoes and we end up buying two pair of different sizes. On April 5th we are to see Dr. Neal Green of the Pediatric Orthopaedic Clinic at Vanderbilt University Medical Center. Our Pediatrician, Dr. Blake, has done research for us through the Hospital Library and has come up with several articles about the Oschner Clinic and Alton Oschner Medical Foundation of New Orleans, LA. These have been helpful in gaining knowledge and we hope to visit the clinic in the near future. I'm so glad that I found this web sight and have read your histories; it has helped me to gain insight on this disorder. I pray every night that a break through will happen in my son's lifetime and I have added each and every one of you to my prayers also.
New information added 5/21/04
April 5th, 2004, we had our full body x-ray and we found out that we have it in more than just the left lower leg and foot. Even though it is bad news my family and I remain hopeful and we are just going to take it one day at a time. My husband said that any time he wants to go and do anything, just because we may be tired we are still going to get up and go, because there will be a day that he may hurt too much and we will always have our memories that we made with him. We are in the process of starting physical therapy. We hope this will help him stay strong and help him later on.