Name : Elaine (Phyllis Ogden, mother)

E-mail :

Child: 8 years old

City, State:  Fort Polk, LA

Areas affected:  Left foot and leg

Personal History: 

My daughter has severe pain in her left foot and leg.  Since she was two she has cried of pain in her hip, butt, and leg but the doctors have always said it was "growing pains."  She has always said "my everything hurts."

In Feb. 2004, right before she turned 8, her foot had a lump on it.

In March, it looked like the bone was growing backwards. In April her shoes are taking the shape of her foot and the doctor says it may be retracting cerebral palsy (it wasn't).

In May we had several MRIs and the foot started to also turn in (they rule out bone and muscle disease because the leg is strong).

In June we see the orthopedic surgeon (who did many more tests); and she now can only walk on her toes.

In July she cried of pain daily and we get more MRIs than I've ever heard of  (meanwhile I'm calling every doctor known to man because this needed to be attended to).

In Aug. the neurosurgeon sends us away -- all scans look fine, but now her whole foot is deformed (so I made a lift for her shoe, and watched her fall all the time).

In September, more tests and scans (terrible).

Foot shrunk 2 inches and I told the doctors to please hurry!!

October more scans.

They thought it may have something to do with her former bladder trouble (it did not).  But now the foot looks like melted plastic and this is the first we hear of the lesions.

November her walking was limited and her leg is turning.

I call the surgeon in distress; he didn't want to do the surgery until he knew the cause, but I said please she is losing a normal leg and there has to be something!  He refers us to the bone oncologist.  We had  3 days notice to prepare for tendon release/tendon transfers and possible bone transfer, but not if the  bone oncologist thinks the spicules in the bone of the foot are dangerous or the surgeon sees no need!  He saw no need but could not figure for the life of him what happened to the foot and what were the lesions in the hip.  She had surgery on her foot 3 weeks ago and they said they had never seen anything like this - her tissues were like that of a 75 year old man so they did more tests and an MRI with dye.  They sent the tissue away to be looked at and the next visit they say it is probably melorheostosis and that she has a severe case.   They said it's not 100% and nothing is, but she's been cleared of every other possible thing they can think to test her on.  She was diagnosed by a bone oncologist last Friday at Wilford Hall MC Lackland Airforce Base.   I had never heard of this disease and they gave me a copy of a page from a medical book with the definition of melorheostosis.

My daughter has also had a bladder problem and heart problems.

I am just not sure what to do or where to go and I have no treatment plan.  I am a seriously concerned mother.

Return to Personal Histories