October 24, 2006
A growing problem
Hormone shots can help very short kids, but is treatment wise?
October 24, 2006
Taylor Hollingsworth didn't grow for three years. At age 6, he still fit into clothes he'd worn at 3. In kindergarten, he couldn't reach the water fountain. His doctors near his family's Marshall, Ill., home assured his parents that his stunted growth merely reflected their heights -- 5 foot 1 and 5 foot 7.
When Taylor hit 6, his parents consulted a specialist at Riley Hospital for Children. After extensive testing found no clear cause, the doctor suggested that Taylor try growth hormone.
The effect was immediate; in the past three years, Taylor -- now a fourth-grader -- has shot up about 20 inches, to 4 foot 2.
"Now he's on the growth chart," says his mother, Tina. "He feels like he fits in better, because people treat him more like his own age. Before, they always thought he was younger."
Three years ago, the government approved the use of growth hormone to treat children like Taylor who fall into the shortest 1 percent for their age group and appear not to be following a normal growth curve.
For some extremely small children, daily injections of growth hormone offer their only hope of achieving a so-called normal height.
But despite the appeal of the drug, some experts remain wary of what benefits this expensive medication actually bestows. Children on the drug gain an average of only 2 inches, experts estimate.
For nearly two decades, David Sandberg, a Michigan clinical psychologist, has explored what impact short stature has on a child. He found that while small kids endure teasing from their peers, most cope with no adverse effects. One study of sixth- through eighth-graders found that height alone did not predict a child's reputation, number of friends, nor the friends' heights.
Such studies led Sandberg to believe that doctors need to tread carefully when prescribing growth hormone.
"There is the potential risk of communicating a very harmful message, and that is that your quality of life is dependent on isolated physical characteristics," says Sandberg, director of the division of child behavioral health at the University of Michigan Medical School. "It's important in the medical setting that we not become complicit with that stereotype."
Massachusetts social worker Ellen Frankel agrees, arguing that prescribing growth hormone misses the point.
"Instead of asking, 'How can we make healthy short kids taller?' the question should be 'How can we change the social prejudices that deal with short people?' " says Frankel. She's the author of "Beyond Measure: A Memoir About Short Stature and Inner Growth" (Pearlsong Press, $18.95) and adviser to the board for the National Association of Short Statured Adults.
"Are we 'fixing' a perfectly healthy child? We're asking the wrong question and we're subjecting our children to needless medical intervention."
Dr. Andrew Cagle, a pediatric endocrinologist with the Community Health Network, has seen more families in recent years concerned about the height of their children, most often boys. Few actually qualify for treatment; many are late bloomers -- children who start off short but then shoot up once they hit puberty.
"By far, the majority of cases that come in, I end up not treating with growth hormone," Cagle says.
Eastside teen Sam Oskins, however, met Cagle's criteria. At age 8, he grew slower than many classmates, says his mother, Jessica Oskins. From then until age 13, Sam's doctor tracked his growth. Instead of moving closer to the normal curve, Sam fell further off.
About two years ago, he started on growth hormone. Since then, he has added about half a foot and gained about 25 pounds, his mother says.
Now 15, the Cathedral freshman is 5 feet and an ardent fan of growth hormone.
"I was enthusiastic about it because I had noticed that I was a lot shorter than everybody, and so they came up with a way for me to kind of get back into everybody else's height range," he says. "I'm still a lot shorter than everybody else, but at least I'm not as short as I would have been."
A generation ago, doctors had little to offer children on the lowest rungs of the growth ladder. Only the shortest short children were eligible for the hormone, derived from cadavers.
But in 1985, companies started producing synthetic growth hormone, allowing the treatment for children whose short stature stemmed from a physiologic condition, such as a growth hormone deficiency.
Then, in 2003, the Food and Drug Administration extended approval to include the shortest 1.2 percent of children, even without a clear medical reason, a condition known as idiopathic short stature, or ISS.
For a 10-year-old, this means a height of less than 4 feet 1 inch. Adult males who fit this definition stand 5 feet 3 inches or shorter, while a woman would be 4 feet 11 inches.
It's not 'cosmetic'
Despite the lure of the hormone as an Alice-in-Wonderland-like drug, doctors say their interest is in using it only for children with ISS and other clear medical conditions.
"We're not using growth hormone as a cosmetic treatment," says Dr. Andrew Riggs, a pediatric endocrinologist at St. Vincent's Children Hospital. "We're using it to correct abnormality."
The first step in evaluating a child for growth hormone consists of ruling out other reasons a child might be short, such as heart disease, renal failure, gastrointestinal problems or thyroid disease, says Dr. Jack Fuqua, Taylor Hollingsworth's pediatric endocrinologist at Riley. About one child in 5,000 has a deficiency in growth hormone.
If no cause for the short stature is found, Fuqua compares the child's height with peers' as well as the parents' heights. Next, he tracks how fast the child is growing, making sure he or she is not falling further off the growth curve.
Short stature alone does not translate into a prescription for growth hormone.
"There's got to be a bottom 5 percent somewhere," Fuqua says. "We're not interested in looking at bottom 5 percent as far as height goes. We're interested in ones who are growing slowly."
But sometimes that's of little solace to parents who see only that their child is shorter than his or her peers.
So not every child leaves with a prescription for growth hormone. At times, doctors must reconcile parents to the fact that not every child can be the tallest in his or her class.
How much is enough?
Other experts question the goals of treatment with growth hormone. Should doctors allow children to grow as tall as possible, or should they discontinue the hormone once an adolescent enters the zone of average?
Those final years of treatment often constitute the most expensive and raise another conundrum, says Dr. David B. Allen, a professor of pediatrics and head of endocrinology at the University of Wisconsin Children's Hospital, Madison.
"We should be considering discontinuing therapy as soon as adult height within the normal range is assured," he says.
"Otherwise you get into this interesting dilemma. You're treating someone with growth hormone so they can be taller than people in the normal range."
But Taylor Hollingsworth and his family have no doubt about the drug's benefits. They're looking into switching insurance plans to make sure they have one that will continue to cover the drug.
And every night, Taylor reminds his mom to give him the shot. "I'm glad that I take it so I can grow," he says. "Now I can reach into cabinets."