Growth Hormone Deficiency

Growth hormone deficiency happens when your child’s pituitary gland doesn’t release enough human growth hormone (HGH). This hormone plays a role in your child’s metabolism (how their body changes food into energy) and how they grow.

There are three main types of growth hormone deficiencies in children:

• Congenital GHD: Your child was born with a genetic change (mutation) or a structural issue in their brain that affects how well their pituitary gland works.
• Secondary GHD: Your child’s pituitary gland isn’t working like it should because of a condition like a traumatic brain injury (TBI) or pituitary adenoma.
• Idiopathic GHD: The reason for the condition is unknown (idiopathic).

If your child has growth hormone deficiency, they may also have hypopituitarism and other hormone deficiencies.

What to expect at your first visit

When you bring your child to Cleveland Clinic Children’s for their first appointment, we’ll start by listening to your story. We’ll talk about their growth from birth, and then we’ll look more closely at their growth over the past six months to a year.

If your child is approaching puberty (around 8 to 13 years old in girls and children assigned female at birth and 9 to 14 in boys and children assigned male at birth), we’ll talk with you both about what to expect and answer any questions you may have.

And since other conditions — like hypothyroidism, celiac disease and undernutrition (not having enough nutrients) — can slow or stop growth in children, your child’s provider will do a physical exam and may order tests to check for these conditions.

Tests for GHD in children

We use blood tests and X-rays to check for causes of poor growth. Since the amount of growth hormone in your child’s blood can vary throughout the day, we’ll first check for markers of growth hormone, such as insulin-like growth factor (IGF-1).

The main test, though, and the only way to accurately confirm that your child has GHD, is with a growth hormone stimulation test. This specialized procedure measures GH levels in their blood.

• If the test shows that your child has GHD, their provider will order an MRI (magnetic resonance imaging) to make sure there are no brain or pituitary problems.

Meet Our GHD Team

Your child will have a team of expert providers from different specialties working together to make sure they have the most focused, personalized care.

 Their team may include:

• Endocrinologists.
• Pediatricians.
• Neurologists.
• Child psychologists.
• Nurse practitioners.
• Social workers.

And throughout all tests and treatments, our child life specialists are here to support your child and prepare them for what to expect.

As we start to plan treatment, we’ll first go over your child’s test results with you and answer any questions you may have. Then we’ll work with you to build a personalized care plan that will help your child grow.

We take their age, needs and goals into account while doing this. And we also include treatment for any underlying health conditions that might contribute to their GHD. There are several therapies we may recommend.

Growth hormone replacement therapy

Growth hormone replacement therapy helps your child reach a typical adult height. The daily hormone injections (shots) may help your child grow up to 4 inches in the first year of treatment. Your child’s care team will teach you how to give these injections before bedtime each night. This treatment may last for several years.

Psychological support

Some kids have depression or poor self-esteem when they find out they have GHD. Our social workers and pediatric psychologists help your child work through their emotions. We also help you learn the best ways to support and encourage your child when they’re feeling down.

Ongoing care

Your child will have regular appointments with their care team throughout childhood. We track their growth and change their treatment plan, as needed. Once your child reaches an adult height, they often will stop taking growth hormone. Only in special cases would we suggest extra tests to see if they’ll need to have growth hormone replacement therapy into adulthood. If they do, our team works with them to move them into adult care at Cleveland Clinic.

Taking the Next Step

It’s natural to worry when it seems like your child isn’t growing like they should. But the good news is, you and your child have a team of caring healthcare providers on your side at Cleveland Clinic Children’s. We’re here to listen to your concerns, answer your questions and ease your fears — all while offering the best, personalized care for your child’s growth hormone deficiency. We’re here to help your child grow, thrive and enjoy being a kid.