1. Treating Precocious Puberty
Treating the symptoms of the type of precocious puberty that occurs in children with McCune-Albright syndrome can be difficult. Most often seen in girls, the cause of early puberty in MAS is very different from that of other disorders that involve precocious puberty. While early breast and pubic hair development and menstrual bleeding before the age of 8 are typically gonadotropin dependent, girls with McCune-Albright syndrome tend to have gonadotropin-independent causes. This means that it's not an early activation of the glands that secrete puberty-inducing hormones that's making her develop early.
Treating gonadotropin-dependent precocious puberty is relatively easy; your doctor will prescribe aromatase inhibitors to lower the hormonal levels. But if the levels of LH and FSH in your daughter's blood are normal, a different course of action will be required. Your doctor will begin by measuring the levels of estrogen in your daughter's bloodstream, as the most common cause of precocious puberty is estrogen-secreting cysts on her ovaries. The cysts can be removed surgically but tend to grow back, so your child's doctor may also prescribe estrogen-suppressing medications such as Tamoxifen.
2. Treating Polystotic Fibrous Dysplasia
Precocious puberty can take a toll on your child's bones, causing rapid aging, osteoporosis and stunted growth. Unfortunately, his bones are probably also weakened by polystotic fibrous dysplasia, a common condition in patients with McCune-Albright syndrome. The soft, fibrous lesions that replace bone tissue put him at risk for skeletal deformities and increased fractures. This disorder, too, is difficult to treat.
There are no treatments to stop the progression of the disorder or to replace the lesions with bone, though oral bisphosphonates and supplemental vitamin D have been shown to have some benefit in strengthening the bone and reducing pain. If your child is only mildly affected by fibrous lesions, these supplements and regular bone scans to track progress may be all the treatment he needs. In more involved cases, however, your child may need surgery to pin fractures or correct deformities.
3. Treating and Supporting Families
One of the most important treatments for McCune-Albright syndrome isn't medical and isn't limited to your child. Both being a child with a chronic illness and parenting such a child can be draining and isolating, so finding support is critical. Ask your doctor to refer you to a child psychologist to help your child cope with the emotional effects of chronic illness. Ask about parental support groups, too. The Magic Foundation, an organization devoted to supporting families of children with critical and chronic growth-affecting disorders, can also put you in touch with other parents of children with McCune-Albright syndrome.
