Name:  Amanda (mom) and Grace (daughter)

Child:  5 years old

Area of body affected:  right hand

City, State:  Atlanta, GA


Personal History:

My Five year old daughter has been diagnosed with Melorheostosis in her right hand.

 (4/9/98)   When she was Two the doctors thought she had a Trigger Thumb because her thumb would not fully extend. She had a Trigger Release. No splitting or therapy was required. About five months later we noticed her thumb bending towards her palm. I took her to The Hand Treatment Center here in Atlanta. Her new doctor suggested splinting her at bed time. She cried when she wore the splint and her hand was getting stiffer.

 (11/17/98)  my daughter had surgery again.  Her hand seemed better but the doctors were concerned about the scar tissue and contractures at the index finger.

(9/13/99) x-rays showed bony changes of her fingers, doctor diagnosed her with Melorheostosis.

(1/7/2000) my daughter was waking up  from a deep sleep in the middle of the night with severe pain. Doctors recommended Advil before bed.

The doctors have given me a few articles about Melo. It is so frustrating because it seems there is nothing we can do. Her hand has gotten worse. She is having PT at school. They are trying to have her switch to being left handed. She truly is a right brain person. I'm afraid we're going to have trouble in school.

 (1/18/2001) we had a second opinion by a Michelle Gerwin Calson at the hospital for special surgery. She confirmed my daughter's condition as Melorheostosis. The doctor said no surgery, no splinting. Physical Therapy only.

Both of our doctors are surgeons and have not provided a great deal of information,

Questions and comments:

Now what?? Where do you go for help???

What type of doctor sees children with Melo??

How progressive is Melo? One article I read said the melo can "spread" to the closest hip or shoulder.

Does one ever out grow this condition??

I am so pleased to see there is a web page. I would be very interested in your experience.

Amanda Keyes 

UPDATE:  May 12, 2006: 

E-mail :

City, State:  Encinitas, CA

Areas of body affected:  Right hand, wrist, arm and shoulder

Personal History Update:

I am writing to update my original information on my daughter, Grace.  Grace is now 10 years old.  The melorheostosis seems to be spreading and the pain is too.

Grace has contractures in her right thumb and next two fingers (her thumb is unusable and lays on her palm), her right wrist and now going into her shoulder.  She cannot rotate her wrist or forearm.  She has trouble with her shoulder.  I want her to swim for the rotation.  It hurts her so she doesn’t want to do too much.

Grace went to physical therapy for 6 months.  She got better but then the funds ran out and they told us to do everything at home.  It's hard. We have gone to USCD, the BEST, and they have no answers. Her doctor feels her condition is not just "Melo" but that something else is causing these horrible contractures. She is attending a fitness program at the Y.  Her trainer was asking me a bunch of questions about how to train her upper body.

I wish we could be there for the conference. 

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