Name

Areas of body affected: Left hand, wrist, arm and elbow Update: shoulder blade and a little in spine

Sam has always been very active in sports. Starting Softball at age 5 and Soccer and Basketball not too much later. She loves Softball. She started playing fast pitch at age 9 and that is when we realized that she had a problem. The ball was coming faster now and her batting had become weaker and when she went to catch a ball hit off the bat it would take the whole glove with it. It turns out she didn't have enough range of motion in her thumb to wrap her hands around the bat and she couldn't keep her hands properly in the glove. It didn't look that severe and we just thought it was a birth defect because it just looked like she didn't have the webbing between the thumb and hand. But when she turned 12 and we moved to Texas the trouble became apparent. We had started using a 1st baseman's glove for her to catch with because we could take out the thumb loop and she could keep her hands together. The Texas league will not allow this glove any where but on first base. She has also started learning the Clarinet and Piano and these too were difficult because of the thumb. I took her to her pediatrician and he took an x-ray and admitted that he had never seen it before and he had no idea what it was. He referred us on to the Scottish Rites Children's Hospital in Dallas, TX. The Dr. there immediately diagnosed her with Melorheostosis. She said that it wouldn't go past her elbow and there was no cure or fix. She said if the pain got to bad or if she lost all use of the hand then they would consider some surgical options. She said Sam probably needed to consider a different instrument but didn't say much about her sports. Sam turned 13 on December 23rd. Her left hand is smaller than her right and her thumb is quite a bit shorter. She can only bend the thumb at the top joint (try doing a left handed lay up without a thumb) and the tissue in her hand are really hard. Sam has complained about back aches for several years even getting up at night and sleeping on a hardwood floor to alleviate the pain. We have bought her a new mattress and even put a board under it but to no avail. No one has taken x-rays of her back but say there is nothing wrong. With this new diagnosis on her wrist and after reading some of your stories I am inclined to ask for an x-ray of her back and maybe even a full body MRI. What do you think? I am so glad to have found this site. Thank you all for your stories and I hope and pray for more information for us all.

When Sam was diagnosed, it was at the Scottish Rite Hospital in Dallas, TX. The very next year we moved to Missouri and were transferred to the Shriners in ST. Louis, Mo. They admitted her for a week on the Research Floor. Her urine and blood was tested every day, several times a day and she was only allowed to eat the exact same thing every day with day deviations. The last 2 years we have gone just for follow up checks. She first saw Dr. Manske in the hand clinic and then was sent to Research to see Dr. Whyte. They took x-rays and bone density tests, and this time she had to do a 24 hr. urine and they took a lot of blood.

Dr. Manske still seems to stand on the theory that surgery is not a good option because it is only a temporary fix and usually comes back. The occupational therapist hooked Sam up with some things to slide onto her drum and mallet sticks because she is having problems holding them and her hand begins to hurt before band is over.

Dr. Whyte said that it has spread into her shoulder/clavicle area now and he seemed to be a bit surprised that she really didn't have much pain in her elbow yet, just her hand and lower arm. She still does not have any of the bumps I hear is common with this but has had to stop playing softball because the vibrations of the bat send her hand into severe pain. I say stopped but she is begging to try it again this summer in the recreation league but she plays soccer in High School and Cheerleading so no room for softball.

Her left thumb and first 2 fingers are really affected and she can't really use them. But she said she tries not to pay attention to it and just works around them. She doesn't have much of a grip in that hand without them either so simply opening a can of pop can be frustrating but her friends take good care of her.

They did see a spot in her right arm and in her spine but Dr. Whyte doesn't think it is anything to worry about but we will have to wait for the final readings of the x-rays. I really like the team at Shriners, they are very helpful and eager to answer any of our questions. Sam usually has the same nurses that she had assigned to her while she was there for her week long stay. They have also x-rayed my 12 year old son's hand, my hands and knees and my mom's hand and are making an appointment to see my 8 year old.

Sam was so upset when she got this and felt out of place but she has named her special hand and tries to make light of it. I hope she doesn't experience all the pain that I read about later in life.....there's a cure out there some where....