Our daughter was diagnosed with Lennox-Gastaut Syndrome nearly 23 years ago; she is now 27. After years of a diverse use of medications she eventually required the placement of a feeding tube, through which she receives both her nourishment and medications jejunally (anything received gastrically generally ends up being vomited).
Now we are moving on to a new concern, again believed to be a secondary condition from the treatment of her LGS. She recently experienced a third broken bone, each which followed very minimal falls. Her bone density has been monitored for the past eight years, and recent testing is showing a 15 - 20% drop in the density. There is now concern that she may experience further breaks upon seizing alone. Extensive testing has found no cause for this loss of bone density, and the diagnosis may end up being idiopathic pre-menopausal osteoporosis. Unfortunately, this again means an unknown (idiopathic) cause leading to further treatment (medications) which may again cause further harm. We were told that some standard drug treatments for osteoporosis could be exactly what she should not receive if she might have an extremely rare disorder for which testing is difficult to accomplish. Does anyone have experience that may be of guidance in this area before an irreversible type of treatment is directed?
Now we are moving on to a new concern, again believed to be a secondary condition from the treatment of her LGS. She recently experienced a third broken bone, each which followed very minimal falls. Her bone density has been monitored for the past eight years, and recent testing is showing a 15 - 20% drop in the density. There is now concern that she may experience further breaks upon seizing alone. Extensive testing has found no cause for this loss of bone density, and the diagnosis may end up being idiopathic pre-menopausal osteoporosis. Unfortunately, this again means an unknown (idiopathic) cause leading to further treatment (medications) which may again cause further harm. We were told that some standard drug treatments for osteoporosis could be exactly what she should not receive if she might have an extremely rare disorder for which testing is difficult to accomplish. Does anyone have experience that may be of guidance in this area before an irreversible type of treatment is directed?