US - Parents Consider Treatment to Delay Son's Puberty...

May 08, 2008

CHILDREN'S HEALTH

Parents Consider Treatment to Delay Son's Puberty

New Therapy Would Buy Time to Resolve Gender Crisis

by Alix Spiegel

Part two of a two-part series

All Things Considered, May 08, 2008 · Note: To protect the identities 

of this family, NPR has used only first names.

Robert and Danielle instituted an "only-in-the-house" rule when their 

son Armand was around 5, a modest effort to save him from himself.

By that point, Robert and Danielle were exhausted. They had tried for 

years to steer Armand away from female clothing, fearing their young 

son would become the object of neighborhood ridicule. But nothing they 

said or did seemed to make any difference. There was no dissuading 

him, and so the only-in-the-house rule seemed like reasonable 

compromise.

Armand agreed — he even seemed comfortable with it. He spent hours in 

the basement and backyard, playing with his sister's cast-offs.

But one day, Robert came home early and found Armand out front in the 

middle of their cul-de-sac. He was wearing a poodle skirt, swaying 

back and forth, singing. Wanting, Robert says he thought, the whole 

world to see.

"That caught me by surprise," Robert says. "There was worry."

A Minnie Mouse Dress and a Temper

This obsession with female clothing had started early, when Armand was 

around 2. He had found an old Minnie Mouse dress the family had gotten 

at Disneyland. He put it on and then refused to take it off.

"It was like, 'NO!' " Danielle says. "Feet in a stance, a strong 

stance, just standing there.... She pretty much from that point slept 

in it, stayed in it all day."

(Danielle and Robert now refer to their son as "she.")

Any effort to remove the dress would provoke an outburst. In fact, the 

more Robert and Danielle tried to limit Armand's behavior, the more 

explosive their son became. And it only got worse as Armand got older.

"The terrible twos became terrible threes and fours and horrible fives 

and intolerable sixes," Robert says. Armand "seemed on edge all of the 

time."

There were two-hour tantrums. Tornadoes of tears and screaming that 

left the family exhausted. Any comment could set Armand off, and, once 

triggered, there was no controlling him.

"One night I remember it got so bad, where she was so out of 

control ... I literally walked her out the front door and said, 'You 

need to stay,' " Robert says. "And it was probably at eleven o'clock 

at night. And I walked her out the front door, closed the door, 

because I didn't know what to do."

Robert remembers standing with Danielle beside the door, listening to 

his 6-year-old son scream.

"She was pounding on the door — and my wife and I looked at each other 

and said, 'What is happening? Why is this child so unhappy? What have 

we done?' " Robert says.

Doctors and More Doctors

The family consulted mental health professionals with all kinds of 

initials after their names. They passed out diagnoses with even more 

initials: ADD (attention-deficit disorder), OCD (obsessive-compulsive 

disorder).

"I mean, every conceivable diagnosis," Robert says. "But no one could 

put their finger on it."

Still, while the doctors were unable to find the right label, their 

son seemed to understand what was going on. Danielle says that during 

quiet moments, like the ride from school, her child would confess what 

was causing so much trouble.

"A lot of times she'd come out and say, 'I'm a girl.' No, at first it 

was, 'I want to be a girl,' then it's like 'No. I am a girl.' And 

she'd ask if me if I [thought] she was crazy and I'd say, 'No, honey, 

you know, it's OK.' And in the front, you know, I'm driving going ... 

'Oh my gosh, what is this?' " Danielle says.

Gender Identity Disorder

After many years, the family found a psychologist who had experience 

with gender issues. At the end of a two-month evaluation, the 

therapist gave them a diagnosis: gender identity disorder.

Gender identity disorder is the label most psychiatrists and 

psychologists give to children who believe themselves to be born into 

the wrong biological body. It involves a range of behaviors, but on 

one end of the spectrum there are children like Armand: kids who are 

more than effeminate boys or masculine girls who may turn out to be 

gay in adulthood. These are children who genuinely believe they are 

girls — even though they have a male body — or boys, even though they 

have a female body.

The doctor explained that their son would, in all likelihood, grow up 

to be transgender — someone who lives as a member of the opposite sex.

Robert and Danielle say that at this point the diagnosis was more of a 

relief than a shock. They decided almost immediately to stop trying to 

force their son to live as a boy. And then looked, with some anxiety, 

to the future. Armand was close to 11 years old.

"We knew that puberty was around the corner and we needed to start 

looking into ... what do we do," Robert says. "How do we help this 

child, you know, develop in a way that is consistent with who she is."

A New Treatment

Robert and Danielle soon came to find out about a new, highly 

controversial, treatment for preteen kids with gender identity issues. 

The treatment allows kids to postpone puberty and avoid developing the 

physical attributes of the sex they were born with.

The treatment has been offered in the United States only for around 

four years. Essentially, kids who meet the criteria for gender 

identity disorder are given monthly injections of a medication that 

blocks their bodies from releasing sex hormones. This means that while 

the children continue to grow taller, for the three or four years they 

are on the medication, they are kept from maturing sexually.

Norman Spack, an endocrinologist at Children's Hospital in Boston, was 

one of the earliest practitioners of this treatment in the United 

States. He explains that doctors have actually been able to block sex 

hormones for decades — the technique has been used to treat everything 

from prostate cancer to fibroids — but it was only about 10 years ago 

that a medical group in the Netherlands decided to use it on kids like 

Armand.

"They had the idea. ... They decided to see what would happen if they 

took such a child that was in such distress over their body, [and 

stopped their body from] taking the form that they feared," he says.

To put off puberty, children ­- usually between 10 and 13 — are 

injected with hormone blockers once a month. Spack explains that the 

blockers only affect the gonads, the organs responsible for turning 

boys into men and girls into women.

"If you can block the gonads, that is the ovary [in women] or the 

testis [in men], from making its sex steroids, that being estrogen or 

testosterone, then you can literally prevent ... almost all the 

physical differences between the genders," Spack explains.

Without testosterone, boys will not grow facial or body hair. Their 

voices will not deepen. There will be no Adams apple, and height 

growth will slow. Without estrogen, girls will not develop breasts, 

fat at the hip, or menstrual periods. And since most growth happens 

before puberty, if you block estrogen — and therefore puberty — girls 

will grow taller, closer to a typical male height.

The hormone blockers are the first stage of the treatment, but there's 

a second stage that's possible. Once children have postponed puberty 

for three or four years, at around age 16 they can choose to begin 

maturing sexually into the opposite gender, the gender they want to 

become. To do this, they begin taking the hormones of the opposite 

sex. For males, taking estrogen at this point will bring on breast and 

hip growth — and all the attributes physical and emotional of females. 

The reverse will happen for girls who take testosterone. Spack says 

this treatment can help make an adult transgender male almost 

indistinguishable from a biological male in terms of physical 

appearance.

"We can make it possible that they can fit in in the way they want to. 

It is really quite amazing," he says.

If, however, puberty is not blocked — if it is allowed to happen 

naturally and sexual maturity takes place on time — fitting in as a 

transgender adult is more difficult. An adult man who chooses to 

become a woman by taking estrogen will still tower over other women. 

He'll have larger hands and feet, a pronounced brow, and facial and 

body hair that will need to be removed. These are physical attributes 

that can set a transgender person apart and make day-to-day life more 

difficult.

This is exactly the fate that Robert and Danielle hope to help Armand 

avoid. Armand will soon start the hormone blockers, but in the 

meantime, he is already living as a girl. Danielle says she and Robert 

decided to allow Armand to transition after they got the official 

diagnosis.

"Once we officially knew that [Armand] was transgender it was like, 

'What do you need? You tell us.' We weren't going to try to control 

anymore; we'd been doing that for years. So it was like, 'What do you 

need? What do you want?' " Danielle says.

Armand was clear. He wanted to be called Violet, not Armand. He wanted 

to be known as their daughter, not their son. He wanted his parents to 

call him a "she."

Robert and Danielle agreed. The first official day of Violet's new 

life was Aug. 19, 2007. It was the first day of a family vacation. 

Armand — now Violet — was 10. And Robert says her emotional 

transformation that day was nothing short of astonishing.

"It was the happiest kid I'd ever seen. Just lit up. Just ... 

brilliant and funny and these things that we caught glimpses of that 

weren't always there," he says.

Since the transition there has not been any real outburst. Still, 

there have been challenges. Last September, Violet returned to school, 

this time as a girl. Though the school was supportive, Robert says he 

and Danielle were terrified.

"You know just that walk from the car to the front doors of the school 

was the longest walk of our lives," he says. "Violet broke my heart 

and I was proud of her all at the same time," Robert says.

He says when Violet got out of the car she immediately put a on long 

coat and put her hood up. She started walking behind her father and 

mother. "We said, 'No!' You are not going to do this. You're not going 

to walk behind anybody. We're going to walk together. And we held 

hands and we marched right up the sidewalk into those doors. Into an 

extreme unknown," he says.

And their worst fears — of ridicule, of violence — were not realized. 

At the end of the day, Violet skipped to the car and reported she had 

had a great day.

Robert says that since the family event, and Violet's transition, 

there's been a new level of peace in his household, a liberating 

clarity. "There is no doubt at this point in our lives that we have a 

transgender child. ... And there is no doubt in our mind that we are 

going to do what we can to help her," he says.

A Side Effect of Treatment

But not everyone believes that it is possible to know with this level 

of certainty that a child is transgender. There are two views in this 

debate.

Polly Carmichael, a British psychologist who works at the Portman 

Clinic in London, which has a unit specifically dedicated to gender 

identity, says the identity of most children this age is in constant 

flux.

"You can have a child who is presenting with absolute certainty, but 

it may be that at a later point they will decide that is not in fact 

what they want and their feelings may indeed change," Carmichael says.

The Portman clinic has treated 124 kids since 1989. It requires 

children to live as the gender they were born with. And 80 percent of 

its patients — once grown — chose as adults to keep their biological 

gender.

The opposite outcome was seen by the researchers in the Netherlands 

who first developed the hormone-blocking treatment. They have treated 

100 patients and all chose — as adults — to live as the opposite sex.

So the verdict is still out about how many kids with gender identity 

disorder will choose sexual reassignment as adults — that is, to live 

as a member of the opposite sex by changing physical appearance or by 

having a sex change operation. This makes deciding on treatment very 

difficult, because there is one very serious side effect to the second 

part of the treatment.

Taking testosterone or estrogen immediately after blocking puberty 

will make a teenage patient sterile.

Spack, the endocrinologist at Children's Hospital in Boston, says that 

because the gonads do not mature before they are exposed to the 

hormones of the opposite sex, the gonads become too damaged to produce 

either viable eggs or viable sperm.

"This is one of the most controversial aspects of this. At what age 

can a young person fully understand the implications of doing 

something that will make fertility for them, by today's technology, 

virtually impossible?" he says.

Spack, however, is quick to point out that there is no risk of 

infertility from the hormone-blocking treatment alone. Infertility 

only comes when the hormone-blocking treatment is paired with Stage 2, 

the use of opposite-sex hormones. And so, Spack says, hormone blockers 

should really be seen simply as a treatment that gives families more 

time to think about what to do.

"It's a lot different to be talking to a 14-, 15-, 16-year-old about 

the implications of this than a 10- to 12-year-old," he says. "And so 

it buys you time ... without the tremendous fear of their body getting 

out of control."

Heading into the Future

Robert says he, too, sees the hormone blockers as a way of buying 

time. And he remains absolutely certain that Violet is genuinely 

transgender. In fact, he finds himself almost offended when people 

suggest that he and his family have been too quick to embrace a 

transgender identity.

"It puzzles me because we even have well-intentioned parents who we 

care about and who know us ... say, 'Well she's too young to know!' 

Well, when did you know you were a girl? When did I know I was a boy? 

I knew my whole life, I can't tell you exactly when, but it wasn't 

like I was 10 and realized, 'Oh gee, I must be a boy!' " Robert says. 

"What people fail to realize is they made that decision way earlier 

than that. It just happened that their gender identity and their 

anatomy matched."

In terms of how Violet thinks about hormone blockers, her older 

sister, Melina, says that the problem of puberty is very much on her 

mind. "She's getting hair in some places and stuff and ... every day 

she says that she feels a little bit more manly. Which is really hard 

for her."

Melina, who is 14, says she sometimes thinks about what it would be 

like if she woke up every day to a body that was slowing turning male. 

If she were growing in ways that felt alien and frightening.

"To go through the process of the gender that you're really not ... 

that must be the most scariest most disgusting thing ... I can't even 

imagine what that's like," she says.

You can hear the radio version of this story by listening to today's 

On Health podcast.

-

“A lot of times she’d come out and say, 'I'm a girl.' No, at first it 

was, 'I want to be a girl,' then it's like 'No. I am a girl.' And 

she’d ask if me if I [thought] she was crazy and I'd say, 'No, honey, 

you know, it's OK.' And in the front, you know, I'm driving going ... 

'Oh my gosh, what is this?'”

Danielle, Armand's mother

“If you can block the gonads, that is the ovary [in women] or the 

testis [in men], from making its sex steroids, that being estrogen or 

testosterone, then you can literally prevent ... almost all the 

physical differences between the genders.”

Dr. Norman Spack

“You can have a child who is presenting with absolute certainty, but 

it may be that at a later point they will decide that is not in fact 

what they want and their feelings may indeed change.”

Polly Carmichael, on children who have identity issues

Doctors on Treatment

Dr. Norman Spack has treated teens and pre-teens in the U.S. with 

puberty-delaying therapy. Polly Carmichael, a doctor in the UK, 

practices medicine in a country where the therapy is not approved for 

use. Read their answers < http://www.npr.org/templates/story/story.php?storyId=90234780  > to questions about gender identity issues and the ethics of 

hormone-blocking therapy.

Part One of Series

Read part one < http://www.npr.org/templates/story/story.php?storyId=90247842  >of this series on gender identity issues.

--