Name : Virginia Swaim (mother), Samantha (child)
E-mail for Virginia: firstname.lastname@example.org
Child: 13 years old
City, State: Denison, TX Update: currently in Aurora, MO
Areas of body affected: Left hand, wrist, arm and elbow Update: shoulder blade and a little in spine
See also: posting from Samantha, now 16 years old, on 3/12/05.
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.
Update 3/7/05 from Virginia:
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