Name : Cindy and Jeff Wilson (parents), Rachel (daughter)
Email: wilson5@friendly.com
Child: 7 years old
Areas of body affected: Right big toe and surrounding area, some spots in right knee, and pelvis.
City, State: Swannanoa, NC
Personal History:
Like most of the parents at this site I always thought something was not right with her right foot since birth, but was not really noticeable to anyone else. At 2 months her pediatrician did think there was a size difference in her right leg and knee and we were referred to an ortho. dr., who did not see anything and did not even x-ray. She walked at 11 months and was very active and did not appear to be in any pain. When she was 2 and was running on the beach her grandfather noticed she was using the side of her foot to run and walk. We took her to a check up with our family dr. and he dismissed the problem. Because of her now very clear deformity and such a hard inflexible toe she quite frequently got infections on the toe from the rubbing. We happened to see a different dr. on call in treating one of these infections and he was very adamant that there was something wrong and referred us to another ortho. dr. As a lot of you know the ortho. dr. saw the x-rays and said he didn't know what it was, he had never seen this before (the waxing look on the foot bone) and he didn't think it was cancer, but...After he discussed this with two other drs. he suggested it might be melorheostosis. We were referred to Duke University, but insurance declined the visit because there was no diagnosis and there were ortho. drs. in our area. We then pursued the Shriners Hospital in Greenville, SC. where she was diagnosed and asked to come back for yearly visits, but no other help. Since then a pediatric ortho. dr. has come to our area whom we can call for treatment of some of the problems associated with her foot ie: pain, infections, watching possible progression, etc. We are continuing yearly visits with him. What a relief to see others struggle with the same issues we do. I have heard of adults with this condition, but not children. So glad to know we are not alone.