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Posted on Mon, Feb. 28, 2005
 
  R E L A T E D   C O N T E N T 

A tall order


As growth hormone therapy becomes more popular, doctors worry that parents will want it mostly for boys - and for the wrong reasons.



Inquirer Staff Writer

Sean McGee was so short when he was 8 that people mistook him for a kindergartner.

Adults called him cute and adorable. Kids weren't so kind. "They called me midget and stuff," said Sean, 10.

Last February his mother started injecting him with growth hormone six nights a week after a medical evaluation showed he was unlikely to reach much past 5 feet.

Since then, he has grown 4 inches.

"I'm not the smallest kid in my class anymore," Sean said. "Out of the fourth grade, I'm like the fifth smallest now."

Being short or tall used to be a given. But Sean is among an increasing number of extremely short children who are getting expensive growth hormone treatments, sometimes for years, in the hopes of gaining a few inches.

Hormone therapy traditionally was reserved for children whose short stature was due to a hormone deficiency or other underlying medical problem. But in July 2003, the Food and Drug Administration cleared the way for Eli Lilly & Co. to sell the growth hormone drug Humatrope for perfectly normal children whose size landed them at the bottom of the pediatric growth chart.

U.S. sales of Humatrope, for all uses, rose 23 percent from 2003 to 2004 - from just under $146 million to approximately $179 million, according to IMS Health, a Plymouth Meeting company that tracks the pharmaceutical industry.

Pediatric specialists now say that parents of short boys are particularly interested in growth hormone and that girls may be getting overlooked. Some parents have even tried to get the drug to make their average-sized children taller for sports.

The demand for these drugs is going to keep growing, experts say. Another maker of growth hormone, Genentech Inc., is seeking federal approval to sell its drug for children who are small but healthy.

Doctors worry that as growth hormone becomes more popular, parents may feel pressured to make their children bigger.

In expanding the use of Humatrope for "idiopathic short stature" - when no reason can be found for a child's shortness - Eli Lilly, the drug's manufacturer, adopted strict guidelines. The drug is intended for use in the shortest 1.2 percent of children and is distributed only through pediatric endocrinologists, specialists in evaluating growth problems.

To qualify, boys are supposed to have a projected adult height under 5 foot 3. Girls must have a projected adult height of under 4 foot 11.

Studies show that Humatrope can add on average 11/2 to 3 inches to final height, depending on the dosage.

"It used to be accepted that if a parent is short and the child is short, nothing can be done," said Judith Ross, a pediatric endocrinologist at Bryn Mawr Hospital and Thomas Jefferson University Hospital.

While a gain of 2 or 3 inches seems modest, "that could make the difference with requiring special foot pedals for driving a car or being able to buy clothes in a regular store," said Ross, who has researched growth hormone in short children and serves on an Eli Lilly advisory board.

Still, therapy is costly - $15,000 to $20,000 a year, according to the company - and may not be covered by insurance.

Thomas Moshang, director of the Diagnostic and Research Growth Center at Children's Hospital of Philadelphia, says 10 children a week are seen there for short stature. Most are brought in by parents with reasonable concerns, he said, even if they don't end up qualifying for growth hormone.

But Moshang says he has also seen some parents eager to give their kids a height advantage.

One family hoped that their daughter, an up-and-coming tennis player, could gain a few inches so that she would be more competitive on the pro circuit. Another family wanted their 5-foot-10 son, a talented high school quarterback, to reach 6 feet so that Division I colleges would come calling.

Moshang turned both families away.

"Some people say being short is a disability," he said. "But is that young lady really disabled because she's not going to make it as a pro?"

Height can be a touchy subject for parents and children in part because society tends to value tallness. Some research has suggested that tall people have an edge in the work world, and being tall can have benefits for a 12-year-old in getting picked for a neighborhood basketball game.

Parents are quick to brag if their child falls in the "90th percentile" on the growth chart.

There is good reason to plot a child's height since growth is an excellent indicator of overall health. What doctors look for is extremes in height or a sudden change in where a child falls on the curve.

"I give a talk to residents saying shortness is not a disease," Moshang said. "But it can be a sign of disease."

Kidney disease, digestive disorders or Turner syndrome, a chromosomal condition that affects girls, are among the conditions that can stunt growth. Blood tests can reveal whether a child has a deficiency in growth hormone, which is produced by the pituitary gland and regulates the growth of bones and muscles. Some children are late bloomers, not kicking into a growth spurt until later in adolescence. X-rays of the hand and wrist will show whether a child has reached full height.

Growth hormone won't help if a child is already done growing.

A study published earlier this month by Children's Hospital endocrinologist Adda Grimberg found that nearly twice as many boys as girls were referred to the hospital for evaluation of short stature or poor growth - a pattern that may reflect a cultural bias that short girls are "cute" while short boys are undesirable.

The study found, however, that girls were more likely than boys to have an underlying disease that made them short, suggesting that many such problems are getting overlooked.

"While it might be OK to be a cute girl, there is nothing cute about missing a disease in a girl," Grimberg said.

Amanda DeBrielle, 18, of Blackwood N.J., said she had doctors repeatedly tell her not to worry about being short, until she ended up at Grimberg's office and found out she had celiac disease, a digestive disorder marked by intolerance for certain grains, which can impede growth. She was put on a special diet about four years ago and started to grow. She is now 5-foot-2.

Debbie McGee, Sean's mother, said she began to worry when her son stopped growing at a steady rate around age 2.

She didn't expect a tall child - she is 5-foot-2 and Sean's father is 5-foot-6 - but still her son seemed abnormally small.

After Sean started school, he would come home saying that he was being teased. Sometimes, classmates would scoop him up like a doll.

She eventually took him to Temple University Children's Medical Center, where pediatric endocrinologist Iraj Rezvani determined that Sean could qualify for growth hormone treatment.

At age 9, he stood 461/2 inches - near the bottom 1 percent for his peers.

McGee, of the Northeast, said she left the decision to Sean, explaining that he would have to get a needle almost every night for several years.

"If he reached 5-foot-6, I'll be thrilled," said McGee, who is seeking to get the growth hormone covered by her children's insurer. "If he's taller, that'd be great, too."

Potential side effects of growth hormone drugs include headache, nausea and a rise in blood sugar. The long-term implications are not fully understood, Moshang said, citing research suggesting that growth hormone might increase the risk of colorectal and other kinds of cancer.

Doctors say they worry that parents may have unrealistic expectations.

David Sandberg, a pediatric psychologist at Women and Children's Hospital of Buffalo, said parents sometimes blame their children's problems on the fact that they are short and think that growth hormone will make everything better.

"We shouldn't accept the notion that this is going to change a person's life, because it's not," he said.

Sandberg recently published a study bucking the conventional wisdom that short children are at a social disadvantage. In surveying nearly 1,000 middle school and high school students, he found that short kids are as likely as their tall classmates to be popular.

Whether it's due to his growth spurt or not, Sean McGee said he's no longer being teased, and he got up the nerve to join the basketball team. He's outgrown size 6 clothes and hopes to soon be out of size 8's. At his checkup two weeks ago, he measured 501/2 inches.

"When I'm done, I want to be 5-foot-4," he said.


Contact staff writer Susan FitzGerald at 215-854-2780 or sfitzgerald@phillynews.com.

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