How do children with GHD see themselves?

We know that overall health and wellness is important to caregivers and their families. Here are some of the questions we’ve heard.

[She’s] always said ‘I’m very small. Why are they so much bigger than me?’ I think that kept her from really interacting with kids her age.
Karyn, mother of a 6-year-old daughter with growth hormone deficiency (GHD)

Living with GHD

Living with GHD is a personal and individual experience. As your child grows and matures, their ability to understand their treatment and condition will change.

Younger children

For younger children, the inner workings of the body are still “magical” and difficult to understand.

For younger children, the inner workings of the body are still “magical” and difficult to understand. Provide simple answers so they can be reassured that they are getting the best possible care and treatment.

Consider saying:

You’re taking medicine so you can stay strong and healthy.

Your medicine is just replacing the missing growth hormone.

Taking your medicine every day will support your body as you grow.

The social challenges of GHD

Your child may experience teasing because of their height. Many shorter children deal with hurtful comments from others, which may increase feelings of not fitting in. If your child is being bullied, remind them of their progress. Their daily injections will help them grow and catch up to their friends—even if things seem difficult now.

How can I help my child? There is no “one-size-fits-all” approach to dealing with bullies. Common advice for children being teased includes:

Telling an adult whom they trust
Calmly saying “stop” to the bully
Laughing or making a joke in response
Simply walking away

Remember that your child may be more comfortable with one coping strategy over another. They may also find their own way of dealing with teasing.

Grow your understanding! Explore more resources about how GHD can affect your child’s social interactions.

It is difficult to see your child upset because of bullies. As your child’s advocate, your emotional wellness is just as important in these tough situations. Don’t be afraid to reach out to others—teachers, advocacy groups, mental health professionals—for support.

Outgrow GHD is here for you. Our GHD Wellness page has more wellness tips for times when you’re feeling overwhelmed.

Adapting to new routines

Whether your child has been on treatment for GHD or is just starting, they will experience fun and exciting transitions as they grow. They will begin different routines, like summer camp, hanging out with friends, sleepovers, vacations, and school trips.

However, these new adventures may pose challenges to your child’s GHD treatment journey. Overnight stays can be fun, but may disrupt your treatment routine. Even though it may seem easier, skipping injections can affect your child’s growth and overall health.

But sleepovers don’t have to mean missed injections. Discover more below about balancing your child’s activities and GHD treatment.

Sleepovers can be very exciting for your child, but often interrupt their nightly treatment.

Make a plan together for sleepover day. This may mean changing your schedule. For example, your child may arrive late to their friend’s house in order to get their injection first
Other adults may be willing to help out with your child’s treatment. Discuss options for safely giving your child’s injections when you’re not there
Talk with your doctor. Ask for advice about managing your routine in these situations, even when it seems easier to skip

Other parents may not know about your child’s diagnosis and treatment. Take our Stigma Quiz for helpful tips on talking to others about GHD.

Let’s get ready for vacation!

Remembering to pack everything you need and your child’s GHD treatment can be a balancing act. Here are some useful tips when making your packing list:

It can be helpful to bring a note from your doctor, explaining your child’s diagnosis and need for their treatment
Know before you go. Research requirements for traveling with your child’s growth hormone (GH) medicine
Keep it cool. Pack enough ice packs for the trip if your medicine needs to be refrigerated
Confirm that you can safely store your child’s medicine at your destination
Create your own GH travel kit to keep everything you need close by
Don’t forget the shot! Make sure that you have enough doses for your entire stay and a safe method of disposal

You may already have concerns about traveling or changing routines. Talk with your doctor before you leave for more guidance about staying on track. Keep their phone number on hand for any questions that come up while you’re away.

Preteens

Preteens are at a stage where they’re developing logic and reasoning skills.

Preteens are at a stage where they’re developing logic and reasoning skills. Children this age may start to question why they’re still on treatment, and why their friends don’t have to take injections.

Having a more active role in conversations about how their body is changing can help develop a greater understanding and acceptance of their GHD. Allow your child to take the lead during doctor’s visits and ask questions.

Consider saying:

Keeping up with injections has been hard, but you’ve been doing so well. Let’s make a list of questions for your doctor for the next visit so we can get some goals in place.

Let’s talk about your biggest treatment concerns and make a game plan for your next doctor’s visit.

I know your treatment has impacted your health in more ways than just height. What differences have you seen and felt since beginning injections?

Sharing with friends

At this age, your child and their friends are becoming curious and asking more questions. GHD may come up in conversations with friends, even if they do not know about your child’s condition. Friends may take note of your child’s height, bruises from injections, or even clothing size—which can be embarrassing.

Start a conversation with your child. Talk with them about their GHD journey. Map out the milestones from diagnosis to first injection to first new pair of shoes…and beyond.

By talking about these experiences together, your child may feel more confident about sharing what they are going through with friends. They may also realize that they are not ready to talk about the ins and outs of GHD with anyone outside of their family.

If your child is comfortable talking about GHD:

Address what questions their friends have already asked (remember, these questions may just be comments about your child’s height)
Discuss off-limit GHD topics that may come up in conversation
Brainstorm the best answers for potential questions
Research interesting, little-known facts about GHD together. Here’s an example:
Can you guess which famous soccer player was diagnosed with GHD as a child? (Hint: He plays for FC Barcelona!)

If your child is not ready to share with their friends:

Make a plan to best answer friends’ questions without making your child uncomfortable
Grow your GHD community! Reach out to advocacy organizations like The MAGIC Foundation and Human Growth Foundation, or visit our Resources page to connect with other families. They understand your experiences with GHD because they have lived them
Your child may be self-conscious about bruising from treatment. Explore options to help avoid embarrassment. For example, when your child is concerned about swimming with friends, suggest wearing a cover-up or a rash guard
Create more opportunities for sharing feelings about treatment at home
Offer more control over parts of their treatment. At first, you could put them in charge of packing their injection kit for overnight trips and begin to give them more responsibility over time

Younger Children

Teenagers

Teenagers may see that they’re catching up to their peers and are losing motivation to continue treatment.

Teenagers may see that they’re catching up to their peers in height and are losing motivation to continue treatment.

It’s important to remind them that GH treats more than just height. Bone and heart health, muscle development, and metabolism are all affected by the presence of GH in your child’s body.

Consider saying:

I know that you’ve been getting treatment for some time. Let’s talk with your doctor together and make sure we know what continuing treatment means for you. Not just your height, but your health as a whole.

Growth hormone is essential for your overall health. During the next visit, let’s check in with your doctor to see how you’re progressing in addition to reaching your height goals.

We’re all so excited to see you catching up with your friends—but I know you’re getting tired of your treatment routine. We can talk about starting self-injections, if you’re ready.

Navigating GHD with a teenager

One of the biggest transitions your child will face as a teenager is puberty. Though they may have been on GH for years, this stage can present unique challenges for your child’s treatment journey, especially with continuing injections.

Every parent raising a teenager with GHD is sure to have some questions. Here are some common concerns from parents and caregivers.

What can I expect when my child reaches puberty?

Talk with your child’s doctor to learn more about what to expect with puberty and GHD. Prepare a list of questions, such as:

Will puberty affect my child’s growth or treatment plan?
How can I tell if their emotional changes are related to puberty or GHD?
What are some common worries that you have seen in teenagers with GHD?
Can you recommend coping mechanisms for this stage?

Reach out to advocacy groups or those in your GHD community. Visit our Resources to learn more about these great organizations, like The MAGIC Foundation and Human Growth Foundation. Advocacy groups help foster connections with other parents of children with GHD who can provide a personal perspective into this transition stage.

Why is continuing treatment important for teenagers with GHD?

Teenagers on GHD treatment may experience treatment fatigue, meaning they can begin to grow tired of their nightly injections. They may question why they are still on treatment, especially if they have met their height goals. Stopping treatment too soon at this stage can affect your child’s overall health, including their development, energy levels, and emotional wellness.

As you remind your child why their treatment is important, think of more ways to motivate them to continue treatment.

What if my child wants to give their own injections?

If your child wants to begin self-injections, work together to figure out the best transition. There are many ways you can ease into this new routine.

Give them more responsibility preparing their injection
Start with one self-injection per week
Let them self-inject with your guidance at each step
Think back to your own memories. What helped you with injections when your child started treatment?

Talking with your doctor first about beginning self-injections is always a good idea. They may be able to provide information about potential training for your child, advice about self-injecting with your device, and more. Being informed can help prepare your child to keep their treatment on track and continue with injections.

Remember, it may take some time to adjust—for both you and your child. Let them know that you’re available for support.

Guide them through the first few self-administered injections
Encourage them to develop a system for nightly injections
Show them how you have kept track of their injections over the years
Help them set nightly reminders
Find the right method to track their treatment, like a journal, calendar, or phone app

Preteens

Younger children

For younger children, the inner workings of the body are still “magical” and difficult to understand.

For younger children, the inner workings of the body are still “magical” and difficult to understand. Provide simple answers so they can be reassured that they are getting the best possible care and treatment.

Consider saying:

You’re taking medicine so you can stay strong and healthy.

Your medicine is just replacing the missing growth hormone.

Taking your medicine every day will support your body as you grow.

The social challenges of GHD

Your child may experience teasing because of their height. Many shorter children deal with hurtful comments from others, which may increase feelings of not fitting in. If your child is being bullied, remind them of their progress. Their daily injections will help them grow and catch up to their friends—even if things seem difficult now.

How can I help my child? There is no “one-size-fits-all” approach to dealing with bullies. Common advice for children being teased includes:

Telling an adult whom they trust
Calmly saying “stop” to the bully
Laughing or making a joke in response
Simply walking away

Remember that your child may be more comfortable with one coping strategy over another. They may also find their own way of dealing with teasing.

Grow your understanding! Explore more resources about how GHD can affect your child’s social interactions.

It is difficult to see your child upset because of bullies. As your child’s advocate, your emotional wellness is just as important in these tough situations. Don’t be afraid to reach out to others—teachers, advocacy groups, mental health professionals—for support.

Outgrow GHD is here for you. Our GHD Wellness page has more wellness tips for times when you’re feeling overwhelmed.

Adapting to new routines

Whether your child has been on treatment for GHD or is just starting, they will experience fun and exciting transitions as they grow. They will begin different routines, like summer camp, hanging out with friends, sleepovers, vacations, and school trips.

However, these new adventures may pose challenges to your child’s GHD treatment journey. Overnight stays can be fun, but may disrupt your treatment routine. Even though it may seem easier, skipping injections can affect your child’s growth and overall health.

But sleepovers don’t have to mean missed injections. Discover more below about balancing your child’s activities and GHD treatment.

Sleepovers can be very exciting for your child, but often interrupt their nightly treatment.

Make a plan together for sleepover day. This may mean changing your schedule. For example, your child may arrive late to their friend’s house in order to get their injection first
Other adults may be willing to help out with your child’s treatment. Discuss options for safely giving your child’s injections when you’re not there
Talk with your doctor. Ask for advice about managing your routine in these situations, even when it seems easier to skip

Other parents may not know about your child’s diagnosis and treatment. Take our Stigma Quiz for helpful tips on talking to others about GHD.

Let’s get ready for vacation!

Remembering to pack everything you need and your child’s GHD treatment can be a balancing act. Here are some useful tips when making your packing list:

It can be helpful to bring a note from your doctor, explaining your child’s diagnosis and need for their treatment
Know before you go. Research requirements for traveling with your child’s growth hormone (GH) medicine
Keep it cool. Pack enough ice packs for the trip if your medicine needs to be refrigerated
Confirm that you can safely store your child’s medicine at your destination
Create your own GH travel kit to keep everything you need close by
Don’t forget the shot! Make sure that you have enough doses for your entire stay and a safe method of disposal

You may already have concerns about traveling or changing routines. Talk with your doctor before you leave for more guidance about staying on track. Keep their phone number on hand for any questions that come up while you’re away.

Preteens

Preteens are at a stage where they’re developing logic and reasoning skills.

Preteens are at a stage where they’re developing logic and reasoning skills. Children this age may start to question why they’re still on treatment, and why their friends don’t have to take injections.

Having a more active role in conversations about how their body is changing can help develop a greater understanding and acceptance of their GHD. Allow your child to take the lead during doctor’s visits and ask questions.

Consider saying:

Keeping up with injections has been hard, but you’ve been doing so well. Let’s make a list of questions for your doctor for the next visit so we can get some goals in place.

Let’s talk about your biggest treatment concerns and make a game plan for your next doctor’s visit.

I know your treatment has impacted your health in more ways than just height. What differences have you seen and felt since beginning injections?

Sharing with friends

At this age, your child and their friends are becoming curious and asking more questions. GHD may come up in conversations with friends, even if they do not know about your child’s condition. Friends may take note of your child’s height, bruises from injections, or even clothing size—which can be embarrassing.

Start a conversation with your child. Talk with them about their GHD journey. Map out the milestones from diagnosis to first injection to first new pair of shoes…and beyond.

By talking about these experiences together, your child may feel more confident about sharing what they are going through with friends. They may also realize that they are not ready to talk about the ins and outs of GHD with anyone outside of their family.

If your child is comfortable talking about GHD:

Address what questions their friends have already asked (remember, these questions may just be comments about your child’s height)
Discuss off-limit GHD topics that may come up in conversation
Brainstorm the best answers for potential questions
Research interesting, little-known facts about GHD together. Here’s an example:
Can you guess which famous soccer player was diagnosed with GHD as a child? (Hint: He plays for FC Barcelona!)

If your child is not ready to share with their friends:

Make a plan to best answer friends’ questions without making your child uncomfortable
Grow your GHD community! Reach out to advocacy organizations like The MAGIC Foundation and Human Growth Foundation, or visit our Resources page to connect with other families. They understand your experiences with GHD because they have lived them
Your child may be self-conscious about bruising from treatment. Explore options to help avoid embarrassment. For example, when your child is concerned about swimming with friends, suggest wearing a cover-up or a rash guard
Create more opportunities for sharing feelings about treatment at home
Offer more control over parts of their treatment. At first, you could put them in charge of packing their injection kit for overnight trips and begin to give them more responsibility over time

Younger Children

Teenagers

Teenagers may see that they’re catching up to their peers and are losing motivation to continue treatment.

Teenagers may see that they’re catching up to their peers in height and are losing motivation to continue treatment.

It’s important to remind them that GH treats more than just height. Bone and heart health, muscle development, and metabolism are all affected by the presence of GH in your child’s body.

Consider saying:

I know that you’ve been getting treatment for some time. Let’s talk with your doctor together and make sure we know what continuing treatment means for you. Not just your height, but your health as a whole.

Growth hormone is essential for your overall health. During the next visit, let’s check in with your doctor to see how you’re progressing in addition to reaching your height goals.

We’re all so excited to see you catching up with your friends—but I know you’re getting tired of your treatment routine. We can talk about starting self-injections, if you’re ready.

Navigating GHD with a teenager

One of the biggest transitions your child will face as a teenager is puberty. Though they may have been on GH for years, this stage can present unique challenges for your child’s treatment journey, especially with continuing injections.

Every parent raising a teenager with GHD is sure to have some questions. Here are some common concerns from parents and caregivers.

What can I expect when my child reaches puberty?

Talk with your child’s doctor to learn more about what to expect with puberty and GHD. Prepare a list of questions, such as:

Will puberty affect my child’s growth or treatment plan?
How can I tell if their emotional changes are related to puberty or GHD?
What are some common worries that you have seen in teenagers with GHD?
Can you recommend coping mechanisms for this stage?

Reach out to advocacy groups or those in your GHD community. Visit our Resources to learn more about these great organizations, like The MAGIC Foundation and Human Growth Foundation. Advocacy groups help foster connections with other parents of children with GHD who can provide a personal perspective into this transition stage.

Why is continuing treatment important for teenagers with GHD?

Teenagers on GHD treatment may experience treatment fatigue, meaning they can begin to grow tired of their nightly injections. They may question why they are still on treatment, especially if they have met their height goals. Stopping treatment too soon at this stage can affect your child’s overall health, including their development, energy levels, and emotional wellness.

As you remind your child why their treatment is important, think of more ways to motivate them to continue treatment.

What if my child wants to give their own injections?

If your child wants to begin self-injections, work together to figure out the best transition. There are many ways you can ease into this new routine.

Give them more responsibility preparing their injection
Start with one self-injection per week
Let them self-inject with your guidance at each step
Think back to your own memories. What helped you with injections when your child started treatment?

Talking with your doctor first about beginning self-injections is always a good idea. They may be able to provide information about potential training for your child, advice about self-injecting with your device, and more. Being informed can help prepare your child to keep their treatment on track and continue with injections.

Remember, it may take some time to adjust—for both you and your child. Let them know that you’re available for support.

Guide them through the first few self-administered injections
Encourage them to develop a system for nightly injections
Show them how you have kept track of their injections over the years
Help them set nightly reminders
Find the right method to track their treatment, like a journal, calendar, or phone app

Preteens

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How do YOU feel about GHD?

GHD doesn’t just affect the children that are diagnosed with it. It can have a ripple effect that impacts both children and their families.

It’s perfectly normal to feel anxious about the role you play in your child’s GHD journey and the questions that may come up along the way. However, there are several other factors surrounding GHD that can become overwhelming.

You may feel some concerns about:

Stigma around GHD
Your child fitting in with their peers and their social and emotional health
Feelings of sadness over the need for treatment and worry for your child
Properly injecting your child
Causing pain from injections

You’re doing everything you can to help your child through their GHD journey, including getting them the treatment they need!

Though you might feel a lack of control in your child’s diagnosis and treatment, there are choices you can make about how to manage your child’s GHD.

Below are some techniques you can turn to if you begin to feel overwhelmed:

Create your own care team. This can include friends of family, nurses at your doctor’s office, and members of the GHD community
Keep a journal! Add any questions you or your child may have. Be sure to bring it with you to your child’s appointments
Ask for help! You know your limits, so don’t hesitate to get help when you need it

And most importantly, give yourself a time-out when you need it!

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Your child’s emotional health

Stress-free tips

You and your child’s emotional health is an important part of your GHD wellness. Shorter children often have emotional and social problems because of their height. You may see your child upset, becoming more anxious, or acting differently. Knowing how to identify these behaviors can help you and your child find solutions to their stress.

What are some common stress-related behaviors?

Anxiety
Sadness
Feelings of not fitting in
Immaturity
Acting out
Seeking social acceptance

These behaviors can be caused by a number of different reasons. For example, your child may be acting out in class—or taking on the role of the “class clown”—because they are trying to make up for their shorter height. Or, they may begin to act younger or more immature because others are treating them according to their height, not their age.

Parents and caregivers are sometimes better able to recognize these behaviors in their child. When you notice something out of the ordinary, don’t be afraid to address the problem.

Talking to your child is the first step to bettering their emotional well-being. They may not want to talk about their struggles yet. Or, they may not be aware that they are acting differently. Let them know that they can talk to you about anything. Don’t hesitate to reach out to outside support, like teachers or school counselors.

How does GHD affect my family?

While only one child in your family may be on growth hormone (GH) treatment, the emotional well-being of their sibling(s) can also be affected. When dealing with an illness like GHD, your child’s siblings may experience stress, anxiety, and depression as a result. When they see the adults in their life worried or stressed, they may attempt to find ways to help. It’s important to be aware of your entire family’s emotional health—and to support one another during your GHD journey.

Dealing with Stress

Children can often pick up on their parents’ emotions, especially when anxious or upset. Here are some ways to limit stress for everyone in your home.

Maintain a routine—outside of GHD treatment. Find ways to relax with your family, like reading a book together before bed
Keep your sense of humor. Laughing is one of the best ways to stay worry-free
Allow your child and their siblings to enjoy being kids, while setting boundaries. GHD doesn’t have to define how they have fun
Watch for unusual behaviors. Get the support you need to help when your child seems stressed

Have more questions? We have answers!

We want to hear from you! Come back for tips on how to manage GHD from others who are in the know and for additional information you need. For now, sign up to hear about information related to new treatments, updates to our website, and more!

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Of the options below, pick the questions that you find most relevant:

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You may also find answers through these partner advocacy organizations:

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