Tens of thousands of U.S. children have growth disorders
Friday, October 24, 2008
Deno Andrews would shock strangers with his vocabulary, drawing comments such as ‘he’s very wise for his age’ and ‘he’s so articulate’.
Often, however, amazement became embarrassment when they learned Deno’s real age was not 4 as they assumed, but 7.
Uninvited comments on his size were just the start of the skepticism and teasing that Deno, who has a growth hormone deficit disorder called hypopituitary dwarfism, encountered from the first day of kindergarten until well into high school.
But Deno, who now stands at nearly 5-feet-7 after more than 10 years of daily growth hormone injections, wouldn’t have changed his experience for the world.
"Despite what I went through with the psychological abuse and being singled out, it worked out well for me," says Deno, a 37-year-old Oak Park father of two. "I remember my father and mother saying this is a difficult thing you’re going through and that other children go through difficult things and I was constantly being told to toughen up. You can look at it like that’s a tough way to deal with a child, but that has allowed me to be a successful adult."
Although very little was known about growth hormone deficit disorders when he was young, today it is estimated that tens of thousands of children across the nation have one of nearly 600 such disorders, says Mary Andrews, Deno’s mother.
Of the numerous conditions, about six disorders, such as thyroid hormone deficiency, idiopathic short stature, Russell-Silver Syndrome and Turner Syndrome are most often diagnosed, says Dr. Richard Levy, director of pediatric endocrinology at Rush University Medical Center.
Like their names suggest, treating the majority of growth hormone deficiency disorders involves administrating growth hormone via an injection, says Levy, adding that today’s needles are much smaller—some resemble insulin pens used by diabetics—and the shots nearly painless.
Which was not the case when Deno was a child, says his mother, recalling her trepidation 30 years ago about having to inject a 3-inch-long needle into her son.
Nowhere to turn
Her frustration with the lack of a support network to vent her emotions and share her concerns, not to mention dismay about the shortage of information on growth hormone disorders, compelled her and two other mothers to create the Magic Foundation.
Laden with information about the disorders and resources for parents, the Oak Park-based nonprofit connects newcomers to the group with parents of children with similar conditions.
"The hardest thing for parents is that everyone would just love to have the perfect child," Mary says. "It’s a shock in the beginning that you do have a child with a problem and it changes life because the focus needs to be on what the child has and what needs to be done."
Sometimes, though, information is hard to obtain, especially with some of the rare disorders.
"When a parent of a child with a disorder no one’s ever heard of calls here for the first time and we’re able to say we understand what you’re going through ... it gives them some hope."
What is normal growth?
Central to Magic’s mission is advising all parents to monitor their child’s early growth.
"It’s very standard—kids grow 8 to 10 inches in the first year, about 5 inches the second year and 2 to 2.5 inches a year until puberty," Mary says. "If a child is not outgrowing their clothes and their shoe size is not changing, it’s an indication they’re not growing and that should be looked into."
Because like all chronic conditions, the earlier the diagnosis and treatment, the better the outcome.
"The younger the child and the longer you treat them, the better the result. For growth purposes, once growth centers fuse (in puberty) you can’t grow anymore," Levy says.
Calculate your child’s growth
• Find a flat location without carpet
• Remove shoes and any bulky clothing
• Place your child’s back to the wall, asking them to stand tall with the back of the heels touching the wall
• Place a hardback book on their head as if you were placing it on a shelf, making sure the edge is flush with the wall
• Make sure child’s head is facing straight ahead and not tilted
• Place a mark where the bottom edge of book meets the wall
• Ask child to step away and measure the distance from the floor to the mark with a tape measure
• Write the number down exactly
• Repeat process to get an accurate measurement
• Input the information into a growth chart, available through the Magic Foundation, or online growth calculator at magicfoundation.org/Growth_chart/main_growthchart.html.
Source: Magic Foundation
Robin Huiras is a freelance writer living in Evergreen Park. She is expecting her first child.