Name : Brandon Donaher (Mother, Tammy Donaher)
E-mail : email@example.com
Child: 10 years old
Location: Moncton, New Brunswick, Canada
Area(s) of body affected: Right foot
On January 15, 2009, my 10 year old son was diagnosed with Melorheostosis. I first noticed his right foot starting to turn out at about age 7. It was not bothering him at the time so I let him be. I just thought he had flat feet.
Last summer when we were at the beach with friends we noticed how bad his foot had actually become. It looked like his ankle was bulging to the inside as if it was going to fold over. I realized something more serious was going on.
In early September 2008 I took him to the emergency department for a routine x-ray. The doctor on call hadn't seen an x-ray like his before and referred us to an Orthopedic Surgeon and a Pediatrician. The next week we were in to see the Orthopedic Surgeon who decided to refer us to the area children's hospital.
Within a couple of weeks, several tests were performed including blood tests, bone scans, CT and MRIs. I was quite scared because I was thinking he had some sort of bone cancer, which I'm relieved it is not. At first we thought it may be a metabolic disorder, possibly his parathyroid hormone, but all his tests came back normal.
On November 18, 2008 we made the trip the the IWK Children's Health Center in Halifax for an evaluation at the Orthopedic Clinic. The specialists there were unsure what my son had and I left that day somewhat disappointed. I was, however, glad they weren't quick to jump to any conclusions. It took two months, probably due to the holidays, but they have come to the conclusion that he does in fact have Melorheostosis.
Today we discussed some treatment options including lengthening his Achilles Tendon and a possible osteotomy to correct the deformity. I don't think they want to perform the later until he's in his mid teens. I'm unsure whether this will help or make matters worse and I'm having a hard time processing everything. The fact that there is no real treatment is very disturbing.
I think my biggest fear is that my son may be unable to walk or dependent on pain medication when he gets older. It's already affecting his life where he has to sit out of sports. He loves to skate but when he tried a couple weeks ago he was unable to walk afterwards. I hate seeing him suffer.
UPDATE-- January 13, 2010
After great consideration, we have opted not to go ahead with the surgical
tendon lengthening at this time. I was very uncomfortable with the whole idea
and took Brandon to the Shriners Hospital for Children for a second opinion. I
am happy to say that we are going to see about trying botox injections and
serial casting to lengthen his achilles tendon. It seems like the least invasive
thing we can do right now. Although I know of no one with Melo who has tried
this, I have great faith that we will see results from doing this procedure. We
have an appointment on January 19, 2010 for an assessment at the Stan Cassidy
Center for Rehabilitation in Fredericton, NB. If this works, he will finally be
able to get fitted for his AFO.
An osteotomy is still one of those options we're discussing but I'm not keen on the idea as I don't want to aggravate the disease. I'm trying to be patient and tackle this Melo thing with baby steps. Brandon still has a lot of growing left to do and hopefully we can get him in his AFO before he has another major growth spurt. I think this will somewhat help correct the deformity or at least keep it from getting worse than it already is.
Since September, Brandon has been experiencing pain almost all the time from when he gets up in the morning to when he goes to bed. It used to be only if he was on his foot too much. I've also noticed him limping a lot as of late. Brandon is being referred to a rheumatologist to see if he is developing arthritis.
(Brandon was seen in May 2009 by Dr. Francis Glorieux and Dr. Francois Fassier at the Shriners Hospital for Children in Montreal, Canada. We continue to work closely with Dr. Fassier as we try to set Brandon up with the right people to help manage the disease.)
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