Coping With Pediatric Growth Hormone Deficiency

Pediatric growth hormone deficiency is a condition that affects more than just a child’s hormone levels. Without an adequate supply of growth hormone, a child’s body does not grow and mature like their peers’. This can lead to feelings of worry and sadness, as well as putting children at higher risk for bullying and low self-esteem.

Fortunately, it is possible to live well with growth hormone deficiency despite the challenges. Thanks to therapy, support groups, and educational tools, children with this condition and their families can thrive during the diagnostic and treatment processes. It requires patience and resiliency, but it can be done by taking it one day at a time. 

Emotional

Feeling and looking different from one’s peers has psychological consequences for your child, and those worries affect parents as well. Children who are shorter and younger-looking than their peers are at higher risk for bullying. In a 2013 study that surveyed children with growth hormone deficiency, 26% of children undergoing hormone treatment had experienced bullying in the classroom and 29% who were not going through treatment had experienced bullying. 

The treatment itself can contribute to emotional distress as well. Children and teens undergoing daily growth hormone injections tend to feel more depressed and withdrawn than children of the same height who do not pursue treatment. The authors hypothesized that this may be due to the intense schedule of daily injections, multiple medical appointments over the years, and repeat discussions about height.

Interestingly, studies have shown that parents of children undergoing growth hormone injection treatment tend to have less anxiety and greater satisfaction with treatment. It can be disheartening to see your child feeling sad despite successful treatment. It’s helpful to remember that this is a normal part of the process. 

Fortunately, once treatment is successful, most children report significantly higher levels of self-esteem and a better mood. A 2019 study found that a significant increase in height was usually associated with significant improvement in reported quality of life for children receiving growth hormone injections. 

It’s important to remember that many children do not share how much their condition and treatment schedule have affected them. A 2016 study found that children with short stature are more likely to internalize their feelings and lower quality of life than children who have reached average height. Even children who do not verbalize feelings of depression or anxiety could benefit from meeting with a psychologist to learn coping skills and feel more supported. 

Physical

Despite their short stature, children with pediatric growth hormone deficiency do not experience significant problems with activities of daily living. A 2013 study found that the majority of children with pediatric growth hormone deficiency, regardless of treatment status, have no difficulty performing tasks in their day-to-day lives.

One area where children with growth hormone deficiency and their families could use daily support is with medication adherence. It can be difficult to remember to administer the daily injections, especially if young children tend to fight them. For treatment to be effective, the injections must be given consistently over several years. It’s estimated that up to 82% of patients miss doses of growth hormone. 

A 2019 study found that electronic devices like the easypod can help families be more consistent with medication administration. An automated device is convenient and easy to handle, making injections quicker and less of a hassle. Helping families find financial resources can also improve medication adherence by ensuring that they can afford the daily injections. 

Social

It can be helpful for your child to have others to talk to about what it’s like to be diagnosed with and treated for pediatric growth hormone deficiency. The same goes for parents who often pour all of their energy into caring for their child rather than self-care. 

Support Groups

Because we know that children who are shorter and younger-looking than their peers experience more anxiety and bullying, it’s crucial to connect them with social support groups. The Human Growth Foundation offers resources such as support groups for the entire family, as well as specific groups for adults who continue to experience growth hormone deficiency later in life. This foundation also offers parental resources like educational webinars, podcasts, publications, and videos. 

Resources for Siblings 

When a child has a chronic health condition like pediatric growth hormone deficiency, everyone in the family is affected, and that is especially true for siblings. According to the American Academy of Pediatrics, siblings of children with a chronic illness are at risk for feelings of guilt, jealousy, anxiety, and anger. It’s not uncommon for siblings to act out as a way of receiving attention from their parents who are often busy caring for their sibling undergoing treatment. 

Signs that the siblings need extra attention and help include becoming withdrawn, acting out in school, fighting with friends, losing interest in favorite activities, rebelling against family rules, and pushing hard to overachieve. Some strategies that can help are scheduling one-on-one time and answering their questions about their sibling’s health condition honestly. If you are concerned about one of your children’s behavior, talk with your pediatrician. 

Over time, everyone in the family will begin to adjust to living with a child’s growth hormone deficiency and treatment schedule. Having a sibling or loved one with a chronic health condition can also help a child develop empathy, responsibility, resiliency, and creativity. 

Practical

Financial Assistance

Growth hormone injections are an expensive treatment that often needs to be used daily for years in order to be effective. Most families require financial assistance to both afford the prescription and navigate the complicated insurance coverage policies. 

As an example, a popular brand of growth hormone, Somatropin, averages $6,938.47 per prescription. To obtain financial assistance, talk with your hospital’s billing department about what options are available. The Magic Foundation keeps a database of pharmaceutical patient assistance programs for children with pediatric growth hormone deficiency. 

Monitoring Apps

It seems there are new health apps popping up on our phones every day. It can be difficult to determine which ones are truly helpful and grounded in science. In 2020, health researchers reviewed 76 mobile apps designed to monitor growth and growth hormone treatment. Many of the apps were not relevant to care.

Researchers recommend looking for an app that provides evidence-based education and allows you to ask questions of healthcare providers. This is especially important for parents administering growth hormone injections daily. It should be noted that about a quarter of the apps tracked location, which raises concerns about patient privacy and confidentiality. 

Be Aware of Disparities 

A 2018 study found that White children are more likely to be diagnosed early and treated for pediatric growth hormone deficiency than Black children. This is significant because treatment is usually more effective the earlier it is started.

The same study found that while boys and girls are at equal risk of having a hormone deficiency, boys are much more likely to be diagnosed and treated. This may be due to the fact that parents tend to feel more concerned about short stature in a son rather than a daughter.

Being aware of these disparities can help you recognize when to seek help and how to advocate for your child’s care. 

A Word From Verywell

There are resources you can use to help your child and family thrive with a diagnosis of pediatric growth hormone deficiency. However, this is not meant to downplay the challenges that your family may experience over years of treatment. Ultimately, it is best to seek support from both loved ones and professionals to help each member of your family feel understood and supported during this journey.