I think low bone density is a result of the disease and is increased by the use of steroids. My son (16 yrs. old) took actonel for 5 years. We saw bone density improve, but it never improved to a normal range. There are some side effects associated with fosamax/actonel that I think need to be put in the equation. Our son stopped walking 18 months ago and we stopped actonel about 6 months ago. These are my suggestions for bone density health. Food with calcium or supplements, vitamin D and weight bearing activities. Try to avoid major falls as your son gets older.
My son has Osteoporosis and is 8 years old. He has been on steroids since he was 6. He had his first DEXA Scan when he was 7 at which time he was put on 35 mg fosamax weekly. His lumbar score has actually improved some but his femoral score continues to get worse. The last DEXA was in October of this year and his femoral score was -5.4. The Endocrinologist has no plans to increase the Fosamax and our neurologist concurs. He currently takes the largest calcium supplement, a multivitamin with calcium and he loves all things dairy.
it's not medical or anything, but i have heard that theraputic horseback riding can help with some of osteoporosis, not cure it or anything and not replace medication, but maybe look into that and it's fun, at least worth the research.
My son Jeffery is almost 17 years old. He has been on steroids since he was 8 1/2 years old. He was started on Fosomax 35mg. soon after the steroids. He has osteoporsis. He has had 5 fractured lower legs & 2 vetebral fractures. About a year ago his Fosomax was increased to 70mg. We visited Dr. Wong in Cincinnati at Childrens, the neuromuscular Duchenne's clinic. He currently takes 2800mg. of vitamin D. His endocrinologist started him on Testosterone gel one pump once a day for 4 months, he believes it will help with his bone density. Jeffery can still walk short distances with assistance.