A mother's persistent concerns about her son's growth led to a diagnosis of pediatric growth hormone deficiency (PGHD), a rare condition affecting 1 in 4,000 to 10,000 children. Diane Benke first noticed her son Alex's height lagging around age 7, but was repeatedly reassured by their pediatrician that he was fine. Despite Alex measuring around the 50th percentile for weight, his height consistently hovered around the 20th percentile and dropped into single digits by 4th and 6th grades.
Benke's instincts prompted her to seek a second opinion after a friend shared her daughter's PGHD diagnosis. She pursued an appointment with a pediatric endocrinologist, which took several months. The diagnostic process included bloodwork, a bone age X-ray, a growth hormone stimulation test, and a brain MRI to rule out pituitary abnormalities. The results confirmed PGHD, a condition where the pituitary gland does not produce enough growth hormone.
Common signs of PGHD include being significantly shorter than peers, slow growth rate, delayed puberty, reduced muscle strength, and slower bone development. Early detection is crucial to minimize health impacts and support optimal growth. After diagnosis, Alex began treatment with daily injections of somatropin, the standard of care for decades. However, insurance required a trial of daily medication before approving a once-weekly long-acting growth hormone (LAGH) option, which became available following a 2015 recognition by the Growth Hormone Research Society.
Alex struggled with daily injections, often missing doses. After three months, he switched to a weekly treatment, which improved adherence and quality of life. Benke emphasized that the weekly option minimized disruptions and allowed the family to focus on normal activities. She advises parents to trust their instincts and seek specialist care if concerns persist. For more information, visit GHDinKids.com to download a doctor discussion guide.
