Name : Brad (Lisa Kennedy, mother)

E-mail :

Child: 14 years old

City, State: Arnold, MD

Areas affected:  Right foot 

Personal History:

I noticed my son was standing on his tip toes when he was around 5-6. If you asked him, he would place his heels to the ground. Slowly, this changed and he couldn't place his right heel on the ground without bending his knee. We took him to the orthopaedic foot specialist at our community hospital. He x-rayed and diagnosed it the first visit. He also told me that he had never seen it and suggested that I look around for other doctors for treatment options at a bigger hospital.

We traveled to Baltimore and to D.C. and couldn't find a doctor that had seen it. When we were in D.C., they paraded a group of 10 residents in to look at this rare disease that they might never get to see again. One guy actually brought his camcorder. In D.C., they serial casted him for 6 weeks, forcing his foot to flex. We felt very odd there. After the cast came off and he went through months of physical therapy, he was walking on his whole foot again, but with a distinct limp. This stretching of the tendon lasted about three years....and then it started contracting again.

We went back to the first doctor who found it and he said to serial cast it again. This time we had him do it. This time it only lasted a year, but he was also 12 and growing 6" in a year, which  didn't help the situation.

So we decided to operate when he was 13 and this September 2004,the original orthopedist did a surgical lengthening of the Achilles tendon by nicking it 3 places. He did an osteotomy on two metatarsals and repinned them in place. At the same time he released the plantar facia to stop the last two toes on his foot from curling under. The doctor did say that this would probably reappear and that there weren't any permanent solutions at this time. But it would buy him more time to play sports and keep active.

After the cast came off and weeks of physical therapy, he started up with the basketball season (his sport) and is doing great. He sprints down court and rebounds for the ball very aggressively. He wore out the first right heel of his sneaker yesterday-he was proud!

Throughout these years he has never had pain besides the casting or the surgery. I looked for information on melorheostosis in the beginning and didn't find much at all besides that only 200 cases had been diagnosed since the 1800's. I found this website only after his cast came off and it scares me reading everyone's stories of pain. I'm knocking on wood right now because I know it's only been four months since the surgery and we have a whole lifetime to live with this.

I think my son feels good about going through with the surgery right now.

I'm praying for him and for the rest of the people who are affected by this for a cure. Please contact me if you have any specific questions about our experience.

Added 1/19/05:

At the Washington Hospital Center, we saw Dr. Malawer, I think once.  When we returned for the serial castings weekly we saw others in his department but I don't recall ever seeing him again.

The doctor who did the second serial casting and then the surgery is Dr. Ed Holt in Annapolis, MD, at the Anne Arundel Medical Center.  It's an excellent facility that is state of the art.  Dr. Holt is an orthopaedic surgeon who specializes in the foot/ankle.


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