Bone necrosis in my 14 year old daughter who has DS

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Hello to everyone:My name's and I've just joined your group. I have a 14-1/2 yr/old named Rita who was diagnosed with Leukemia (Acute Lymphocytic Leukemia - ALL) on Jan 1st 2007. She's undergone chemotherapy for just over two years with 1-1/2 more to go. So far so good, leukemia's in remission but she's super-sensitive to all chemo drugs. In fact she's on a maintenance dose 1/8 the strength of most kids her age but, thank God, her blood counts are holding well despite the low dose.A major problem has been bone necrosis. One of the drugs she was given, Dexamethodone (I may have mis-spelled the word) caused a necrosis of several bones in her arms and legs, but particularly a bone in her right ankle - so she now hobbles around. Necrosis is a fancy medical term for "eats away," the drug literally ate away parts of the bone (inside where x-rays

can't see very well) in her lower leg which weakened the area and caused a partial collapse of the bone structure. She has a walker with wheels which she has used for about a year but for the last two weeks has refused it, for which I applaud her. Doctors say the more she exercises the better for her leg and I fully agree - apparently the stress (and unfortunately pain as well) causes her body to react which in turn will eventually strengthen that area of bone in her leg. Also inactivity has the nasty side effect of enabling blood clots to form in the leg artery (she's had one of those and, thank God, it has since fully cleared up.) The doctors do have treatments for weakened bones which is a kind of cocktail that force-feeds calcium into the bones. However, it is usually reserved for women in their sixties, reason being that although it can strengthen the bone by "fattening it up" it also makes it more brittle - which is fine for relatively

inactive older folk but not good if you are an active child - hence the hesitation to administer it to Rita.Rita's head oncologist told me today he has experience with one prior DS girl and he realizes they are different (he told me he's had a harder time figuring out Rita's needs than with his non-DS patients.) So I wanted to see if there's a parent of a DS child who may have gone through a similar experience that may be able to offer us some advice or an MD who has more experience with DS children with ALL. Or perhaps there are alternative medicines or therapies I could administer that could relieve the pain (she takes Tylenol with Codeine every day) and/or possibly repair the damage to her bones.I realize I'm possibly grasping at straws, maybe there's nothing we can do, but I also know that if you seek you often find.Best regards,and Eileen S.