When Mother’s Instincts Point to More Than Just being a “Late Bloomer”

Diane Benke couldn’t shake off the feeling that something wasn’t quite right with her son, Alex. Although he measured around the 50th percentile in weight, his height consistently hovered around the 20th percentile from the age of 7. Despite reassurances from their pediatrician, Benke’s maternal instincts persisted.

Persistent Concerns Ignored: A Mother’s Determination

As Alex progressed through elementary school, his height percentile dropped to single digits. The height difference between Alex and his classmates became impossible to ignore. Yet, their pediatrician continued to assure them that Alex was fine, basing their assessment solely on Alex’s progression on the growth chart, without ever actually showing Benke the charts.

Navigating Diagnosis: A Long Road with Critical Shortcuts

It wasn’t until one of Benke’s friends confided in her about her daughter’s diagnosis with PGHD that Benke decided to find an endocrinologist, a specialist in hormone-related conditions. The diagnostic process, though lengthy, revealed Alex’s PGHD through a series of evaluations including blood tests, bone age x-rays, growth hormone stimulation tests, and an MRI of the brain.

Understanding Pediatric Growth Hormone Deficiency (PGHD)

PGHD is a rare disease estimated to affect 1 in every 4,000 to 10,000 children, occurring when the pituitary gland does not produce enough growth hormone. Some common signs parents might notice include:

• Their child being significantly shorter than other children their age.
• A slower growth rate over time.
• Delayed puberty.
• Reduced muscle strength or lower energy levels.
• Slower bone development.
• Delays in physical milestones.

Treatment and Beyond: A Family’s Transformation

<p aðFollowing Alex’s PGHD diagnosis, the Benkes started a treatment plan. For decades, the standard of care has been daily injections of a medication called somatropin, but in 2015, the Growth Hormone Research Society recognized the need for a long-acting growth hormone (LAGH), offering a weekly dose as an alternative.

Despite the insurance approval hurdle, Alex switched to a weekly treatment option, and the change had a very positive impact. It minimized interruptions to their daily routine, and Alex has not missed a dose since.

Advice from a Determined Mother

Trust your instincts. If you feel like something isn’t right, seek out a specialist and work toward answers. Don’t give up, even in the face of obstacles. Maintain hope and perseverance—it’s a path worth fighting for.

Seek Answers, Stay Informed

If you are concerned about your child’s growth, talk to your doctor as soon as possible. Early diagnosis is important, as treatment becomes less effective once a child’s bones stop growing.

Visit GHDinKids.com to download a doctor discussion guide to help you prepare for your next appointment.

FAQs

Q: What are the treatment options for PGHD?

A: The standard of care for PGHD is a daily injection of somatropin. Now, weekly injections of a long-acting growth hormone (LAGH) are also available as an alternative.

Q: Can PGHD be outgrown?

A: Without proper treatment, the effects of PGHD may not be outgrown. Early diagnosis and treatment are crucial for promoting optimal growth.

Did you know?

Early diagnosis and treatment of PGHD can help minimize potential lifelong consequences, such as short stature, weaker bones, and reduced muscle and energy levels.

Call to Action

If you suspect your child may have PGHD, don’t wait. Consult your doctor today and take the first step towards finding answers and appropriate care for your child.

Remember, a mother’s intuition is a powerful tool. Trust it, act on it, and seek the care your child deserves.