A growing problem: A number of children need hormone injections to reach normal height

The Orlando Sentinel (MCT) - Madeline Truman Dang stands a few centimeters shy of 5 feet tall.

Although she longs to be taller, the 12-year-old knows that she's lucky to be as tall as she is _ doctors once warned her parents that Madeline might not grow more than 4 feet tall.

But, thanks to eight years of daily growth-hormone injections, Madeline will now be able to drive a car without adding pedal extenders when she's 16. She may still need to use a step stool to reach high cabinets, but she will not need special accommodations throughout her life.

"As a parent, it's a relief," says her mom, Melanie Truman of Orlando, Fla. "You want your child to live a normal life."

Although many Americans are confused about human growth hormone _ thanks to news of athletes illegally using it to improve their performance _ there are thousands of parents around the country using the drug to help children who, without it, might not grow to a normal height. Endocrinologists estimate that 1 in 10,000 children may be growth-hormone deficient.

"Heightism in America is a huge cult," says Dr. Paul Desrosiers, chief of pediatric endocrinology at Arnold Palmer Hospital for Children. "It's overwhelming, and kids end up at the behavioral pediatrician's office and psychologists' offices all the time."

For years, short children were viewed as just that _ short people. But if a child's body isn't producing enough growth hormone, he or she could also have a weaker heart, less lung capacity and suffer from early osteoporosis. And that, for many parents, is more frightening than the prospect of a child who may be short.

"People ask us if it's cosmetic (treatment)," says Melanie Truman. "And it's frustrating because I always have to explain that this is a medical condition. ... If your kid was diabetic, would you not give them insulin?"

For Madeline's parents, the medical mysteries began when Madeline was 2 years old. At first, doctors thought she wasn't growing because of a severe case of reflux, so they installed a feeding tube in the toddler.

But by the age of 4, Madeline's weight was normal for her age, but she wasn't getting taller.

After a series of tests, doctors discovered that Madeline's body wasn't producing enough growth hormone, which is produced by the body's pituitary gland that regulates growth.

For her parents, the news was both good and bad. Good, because they finally had found the problem. The bad news was soon obvious: Madeline would require daily shots of growth hormone for years, an expensive regimen for which many insurance companies refuse to pay.

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Madeline was lucky, however. At the time, her family was living in South Carolina, where she was added to the state's high-risk insurance pool for people who are uninsurable. And when Madeline and her mother moved to Florida in 2004, her ex-husband, who owns his own small business, shopped around until he found an insurance plan that would cover Madeline's medication.

The cost of treatment is prohibitive. Last year, Madeline's treatment cost $20,000, although her insurance picked up most of the cost.

The treatment is not used to make NBA superstars out of children whose parents are short, says Desrosiers. "It's very hard to take a child and make them taller than their parents are," Desrosiers said. "Your goal is to get children to mid-parental height."

During treatment, children often gain 4 to 6 inches in the first year _ which doctors call "catch-up growth" _ before slowing to an average of 4 inches a year.

There can be complications, including headaches caused by intracranial pressure, which doctors treat by lowering the dose temporarily. Patients with scoliosis are not good candidates because their scoliosis will get worse. And though it's rare, the growth plates in the hips of some children have slipped, requiring surgery to screw them together. Doctors also screen carefully for patients who might have childhood diabetes in their family, or any family history of tumors and leukemia.

Despite the small risk of side effects, many parents have mixed feelings about the treatment.

Alyson Innes of Orlando is 5-foot-1, and her husband is 5-foot-8, so she wasn't concerned that her son, now 3, was the smallest kid in his preschool class. But when the doctor told her that his heart and lungs weren't growing either, she decided to try two therapies: a gluten-free diet (to treat his regular bouts of diarrhea) and growth-hormone therapy.

Now he's growing and starting to catch up to his peers. Innes, however, hopes he can be weaned off the hormone. "I don't want to give him hormones until he's 15 or 16," Innes says.

Yet many patients make peace with their daily hormone injections. Madeline Truman Dang, at 5 feet tall, isn't going to grow any taller _ according to X-rays, her growth plates have closed.

She's thrilled that she no longer has daily injections. But deep down, Madeline wishes she could grow a little more.

"Sometimes, you get tired," she says with a shrug, "of being the shortest person in the room."

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© 2009, The Orlando Sentinel (Fla.).

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