In science, doctor’s guidance, family finds hope

By Judy Harrison, BDN Staff
Posted Sept. 02, 2011, at 11:21 a.m.

“People need to understand that no one chooses this for themselves or for their child,” says Dr. Norman Spack, a pediatric endocrinologist and one of the few physicians in New England who is using a puberty suppression protocol to treat transgender children. “The attempted suicide rate for people who go untreated and unsupported is 45 percent. This population has one of the highest suicide rates of any population in the world. Once they walk in the door for treatment that kind of depression ends.”

The American Psychological Association estimates that 1 in 10,000 biological males and 1 in 30,000 biological females in Western society are transgender.

Information about the experience of untreated transgender teenagers worried and frightened Wayne and Kelly, parents of Nicole, a transgender teenager and one of Spack’s patients.

Nicole at first understood that Spack could change her life for the better, but not the specifics of treatment.

“Half the words he uses I don’t know, but I have this sense of relief from them,” she said. “They are big words that have a lot of X’s and Q’s. I don’t know a lot of X and Q words.”

The first sex-change operation in the United States was performed in 1965 by a surgical team at Johns Hopkins University. After receiving permission from a Baltimore court to undergo the procedure, Phillip Wilson underwent the sexual reassignment surgery to become Phyllis Wilson. A decade later, women’s tennis player Renee Richards made headlines when it was made public that she had undergone a similar procedure.

Surgery performed on adults doesn’t negate the changes the body goes through during puberty and adolescence. Experts now believe that better results are achieved when medical treatment for gender dysphoria begins with the suppression of puberty in early adolescence, cross-hormonal treatments through the teen years, followed by surgery as a young adult.

That is the treatment path Nicole and her family are taking at the Gender Management Service Clinic at Children’s Hospital in Boston.

“I remember our first visit to Boston,” Wayne said. “I was kind of like, what are we doing? Then, Dr. Spack started telling us what he could do for our daughter. I saw the weight come off Kelly’s shoulders and I saw the smile come on Nicole’s face.”

The international pioneers in the suppression of puberty are associated with the medical center at Vrije Universiteit, or Free University, in Amsterdam.

Baudewijntje P.C. Kreukels and Peggy T. Cohen-Kettenis are the authors of a peer-reviewed article published in the August issue of Nature magazine that discussed the research in support of early treatment. The authors said that from the studies published so far, “it seems that the benefits outweigh the risks.”

The authors said that what causes gender dysphoria is unclear but brain images of females-to-males taken before treatment showed that the microstructure pattern of white matter was more similar to the usual pattern in men and that the gray matter volume in untreated males-to-females had more resemblance to the volume usually seen in women.

If compared to a computer network, the gray matter would be the computers and the white matter would be the network cables connecting the computers together.

The diagnosis of gender dysphoria, however, can’t be made with head X-rays or a DNA test, according to Dr. Scott Leibowitz, a psychiatrist at the Boston Gender Management Service Clinic.

“Gender identity typically is formed around age 3,” he said in a phone interview in August. “It usually presents when a child makes it known that how he or she expresses gender does not match society’s expectations of how that gender should behave.”

The difference between a child with some cross-gender identity in play or dress and one with gender dysphoria often is in the language the child uses, Leibowitz said. A child who pretends to be a different gender for a period of play might say, “I’m going to wear a dress because I am a girl today.” A transgender child, however, would more likely say, “I am not wearing a dress because I am not a girl, I am a boy.”

Before a diagnosis is made at the Boston clinic, the patient and family must undergo a number of psychological tests designed to see whether the mind and body of the child truly do not match and to determine how family members feel about that mismatch.

Parents typically seek help when a child is entering kindergarten, he said, in part because of a need to deal with teachers and school administrators.

“There are no absolutes in making decisions about gender identity, but an important part of the process involves a family’s ability to support and understand it and the problems that can come from a child suppressing his or her natural inclinations.”

Those problems can include angry outbursts, depression, anxiety, substance abuse, cutting, thoughts of suicide and suicide attempts, according to the doctors in Amsterdam.

Treatment begins for girls at ages 10 to 12½ and for boys between the ages 12 and 14, once the child has reached the early stages of puberty.

This stage of development is critical, according to the doctors in Amsterdam. The majority of children outgrow gender identity concerns. But, about 20 to 25 percent of children in their studies who were diagnosed with some level of gender dysphoria continued to believe they were living in the wrong bodies.

Early puberty usually is the time when a decision is made about going forward with the suppression of puberty, according to Spack. It also is when a boy or girl begins living as the opposite gender outside the family and often picks a new name.

The second round of treatment begins around age 16 with the males-to-females taking female hormones and females-to-males taking testosterone. If a person stops taking the hormones at some point, a delayed puberty would occur.

Before surgery, the results of treatment are entirely reversible.

The treatment and results may seem incredible but are expensive. Medications to inhibit puberty and surgery for sexual reassignment are not covered by most insurance companies, according to Spack. Medical visits and routine medications usually are covered as is psychological testing, he said.

For Wayne and Kelly, Spack’s guidance has been invaluable.

“The guy helped save her life as far as I’m concerned,” Wayne said. “She didn’t have any hope before that.”

http://bangordailynews.com/2011/09/02/health/in-science-doctor%e2%80%99s-guidance-family-finds-hope/ printed on December 26, 2014