Erica Nicholson is one of those moms who had to make the decision of whether or not to put her child under growth hormone therapy. Standing at 5 feet herself, she assumed that her son, Sam too was like her. However, although he got older, his growth didn’t seem to correspond with his age, At age 4, he couldn’t touch the floor with his feet while riding the same bike his sister did at age 4. That was when Erica decided something was not right.
Sam was diagnosed by a pediatric endocrinologist as having Celiac disease, which is an autoimmune disorder that inhibits the normal absorption of nutrients. When Sam changed his diet to a gluten-free diet, he grew one inch within a month. However, his growth was still too slow for his age and doctors predicted that he would not grow taller than 4 f00t 7 inches at most.
Doctors diagnosed him to have Idiopathic Short Stature after they could not find any other abnormality that would result in the slow growth.
Switched to a gluten-free diet, he grew an inch in a month. But his growth rate was still slow. Doctors predicted he would be no taller than 4-foot-7 as an adult.
Nicholson set out on a search for answers, going from “one scary diagnosis to another,” she said, eventually finding success with growth hormone, a costly and controversial treatment.
Success In HGH therapy
After many desperate searches for a treatment, Erica finally found a solution in growth hormone replacement therapy. At that time, it was a highly controversial and costly treatment but Erica chose to put her son under the therapy to eventually find success in it. From age 5, Sam began growth hormone therapy and two years later, at age seven, he has grown eight inches in a short span of two years. “He is in the 8th percent on the growth chart,” Nicholson said. “You’re happy to have that.”
Laurie Cohen, clinical chief of endocrinology at Boston Children’s Hospital said, “Short stature is a not a disease, But the further outside the normal range a child is on the grid that physicians use to monitor height and weight, the more likely something else is going on.”
The potential adverse effects of HGH therapy
Although highly effective, Growth hormone therapy can have some serious side effects. Assessing whether a healthy child with short stature will be unnecessarily exposed to risks of HGH therapy is difficult, which is why it is such a controversial treatment.
In addition, getting insurance reimbursement for growth hormone replacement therapy can be tricky as it is tough for insurers to differentiate between a child with actual hgh deficiency and normal short stature variation.
Various studies also claim Growth Hormone to be behind the increased mortality rate in children receiving HGH therapy, however, the FDA rules these study findings to be inconclusive. The FDA guidelines instruct pediatric endocrinologists to clearly disclose the risk factors associated with long-term growth hormone therapy and its adverse effects in adulthood.
“A lot of assumptions that were driving growth hormone as a treatment for shortness have been difficult to prove,” Allen said.
A clear diagnosis of Growth Hormone deficiency is difficult as the available tests are not very sensitive and risks of false negatives or false positives are high. “It’s not how these kids are categorized, it’s the severity of their disability. That’s the one thing I think we’re struggling with,” said Allen. “It’s difficult for insurers to sort out who needs treatment from those who don’t,” he said.
“Growth hormone treatment can help not only with such problems but also with bone density, energy metabolism, and cardiovascular health,” said Kupper A. Wintergerst, professor of pediatrics at the University of Louisville and chief of endocrinology and diabetes at Norton’s Children’s Hospital.
Nicholson’s appeal for HGH therapy coverage has been rejected thrice. Her family has to shell out $550 a month just for the HGH injections. For desperate moms like Nicholson, they believe the costs to be worth the results. With each year of HGH therapy, her son is growing to meet the height of his peers.
The risks of HGH therapy in adulthood has not been studied well, and the short-term risks are rare, but it can be serious when they do occur. Some of the serious adverse effects of HGH therapy include intracranial hypertension, worsening scoliosis, and Type 2 diabetes.
“Because of the role growth hormone plays in tumors and making cells grow, there have always been theoretical risks of malignancy,” she said.
Unlike Nicholson, some families are interested in GH therapy to give their otherwise healthy child a competitive advantage in sports.“I don’t care if you’re a millionaire — there are a lot better things you can do with your money for $50,000. You could hire a pretty awesome coach or go to some great camps,” University of Iowa Stead Family Children’s Hospital, pediatric endocrinologist Vanessa Curtis said. “If a family is asking that I prescribe GH who doesn’t meet the criteria and just wants them to be bigger, faster, stronger, I would not feel comfortable doing that.”
“When the treatment brings the child’s height closer to normal, you see this incredible change in their personalities and their happiness,” said Kupper A. Wintergerst.