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.
