Managing GHD challenges
Difficult situations can appear at any stage of your GHD journey.
Here are some issues that you may have during your GHD journey, plus tips on facing these challenges head on.
“The first year it feels like you’re walking through heavy mud and like your life is never going to be the same and it’s just so heavy. Eventually you do adjust. You find the new normal and you find ways to still do life.”
Amy, mother of a son treated with growth hormone (GH)
Injection challenges
It is natural for children to feel scared about receiving routine injections. If your child has injection anxiety, talk with your child’s healthcare team. They have experience helping parents and children deal with this issue. In the meantime, here are a few tips that may help:
- Remind your child about how the treatment will benefit them. Knowing that the treatment will help them grow can help your child feel positive about receiving treatment
- Set up a time and place that works best for you and your child. For example, administering the injection in the kitchen right after dinner may fit into your family’s schedule. Once you set a routine, stick to it as much as possible
- Encourage your child to participate in the routine by performing helpful tasks. You can let them help you remember the right injection site, help clean the site with an alcohol wipe, or get an “after injection” treat ready. As children get older, they can help out with more tasks
- During the injection, distract your child by singing a favorite song together or telling a story. As they get older, you can ask about their day at school
- Hug and praise your child for a “job well done” after each injection
Interference with activities
Your child’s treatment can also interfere with lifestyle activities, like traveling and social events. Some common issues are:
- It is difficult to plan ahead when traveling or at social gatherings. Scheduling a time to administer injections can be affected when you are not in your “normal” routine
- Being away from home is especially challenging. When you are in a new place, such as on vacation, you can be more prone to missing injections
- Illness is sometimes a factor. When your child is sick, they may complain about getting their injection or ask to skip
GHD tip: Set expectations when traveling or attending social events. Knowing that some activities may conflict with your child’s treatment schedule will help you be more prepared—and hopefully, avoid interruptions. As a parent, you will have to adapt to give your child the treatment they need.
Emotional challenges
Growth hormone injections can also present emotional challenges. Even if their child has been on GHD treatment for years, many parents are anxious when it comes to administering injections.
You may feel worried about giving your child the correct dose, stressed about preparing the medicine, or overwhelmed with the responsibility to complete this important task. You may also feel guilty when giving your child their injection because you know it can be uncomfortable.
Your emotional health is just as important as your child’s during your treatment journey. In the times when you feel worried or alone, find support from your GHD community.
Learn more about the importance of emotional well-being.
Communicating with your care team
Sometimes it is hard to talk with your care team. But doctor’s visits can be a great resource during your GHD journey. As an advocate for your child, you will go above and beyond for their well-being.
Ask questions. If you want to understand your child’s GHD better, ask your doctor for more information. It is possible that they can provide additional resources and support.
If you or your child have specific concerns, write them down beforehand. It is helpful to have a reminder to guide your discussion during doctor’s visits.
GHD tip: There are times when you may feel reluctant to share concerns with your doctor. But it is important to voice any uncertainties you have about your child’s condition. Advocating for your child can be challenging. Remember that you’re doing so with your child’s health and best interests in mind.
Check out our downloadable guide below for more information on preparing for doctor’s visits.
Not registered? Join Outgrow GHD to receive helpful tips on how to advocate for you and your child, emotional health, and more.
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Injection Support
Giving injections is a big part of your family’s schedule. Right now, you probably have a consistent treatment routine. But what happens when the plan changes?
Here’s the plan…
While you do your best to plan ahead, you may need to adapt to a new routine during your GHD journey. Here are a few situations where you and your child may need to make a new plan for getting injections:
When someone else will be giving your child’s injections. There may be nights when other family members or adults will administer your child’s treatment. For example, they may be spending the night at their grandparents’ house. You have agreed that Grandma will give your child their injection before bed.
First, check in with your child. Are they comfortable getting injections from this person? If they are, make sure that everyone is prepared. Below are some ways to:
- Go over your routine or complete an injection together
- Demonstrate an injection
- Write up a step-by-step list
- Keep important information and directions on-hand
- Give your child more responsibility—let them take over the instructions!
When your child is ready to start self-injections: Your child may be growing more independent. They may be able to manage their own treatment. Learn more about ways to help your child transition to self-injections.
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Puberty and GHD
Parents of teenagers usually have questions about puberty. But what role does GHD play in your child’s life once they reach puberty?
During puberty, GH production rises, resulting in growth spurts. You can probably remember your own experiences at this stage or have older children who went through growing pains. But, your child with GHD may not be growing as quickly as their friends who have reached puberty.
Remember, every child’s experience is different. Your child may enter puberty at a different time than their friends. Even siblings can reach puberty at different ages. It is important to remind your child—and yourself!—not to compare their progress to anyone else.
GHD-specific challenges
- Differences in height can become clearer. As other children have growth spurts, your child may feel frustrated with their progress. They may even become embarrassed.
- Your child’s doctor may discuss potential adjustments during puberty. Once your child reaches puberty, they have limited time to reach their full growth potential. Your doctor may want to adjust your child’s dose at this time.
Despite some of these growth-related challenges, your child will also have new and fun experiences. They may begin high school, form new routines, get their first job, and more. Your child may also need less supervision over their treatment or begin to manage their own medication.
For more GHD insights, explore the ins and outs of preteens and teenagers living with GHD.
Sleeping patterns
Your child’s sleeping habits will change during puberty. They may experience:
- Irregular, shortened, or delayed sleep
- Staying awake later at night and sleeping in later in the morning
- Lifestyle changes, like after school activities, sleepovers, parties, and more
These new sleeping patterns may affect your child’s treatment routine. If you notice new behaviors, talk to your child about adjusting their routine. Even if one schedule worked for your family in the past, there may be a better one for this transition period.
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Doctor appointments
When it comes to your child’s GHD, your questions and concerns matter. At your child’s doctor’s appointments, use our Discussion Guide to get the answers you need.
Over the course of your GHD journey, you will have routine visits to your child’s pediatric endocrinologist. Your doctor will want to monitor your child’s growth. At these visits, your child may need additional tests to assess GH levels, cholesterol, blood glucose, and bone density.
This is also a great time to talk to your care team about any concerns.
At Outgrow GHD, we want you to get the most out of your doctor visits. You can use our guide to record and review all your important questions before your next visit.
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Navigating the insurance process
The insurance process can be confusing and, at times. Learn more about what to expect when navigating insurance coverage.
Your insurance company will require authorization before your child can start treatment. Insurance companies have strict criteria for GH medicine that your child must meet in order to be approved for treatment. Your insurance may even require additional tests.
Insurance insights
The insurance process begins at diagnosis. Once your pediatric endocrinologist has decided to treat your child for GHD, they will prescribe GH therapy or injections. They order this treatment by sending a request to the nurses who specialize in GH treatment.
The nurses begin the prior authorization process when they get the doctor’s request. This can take some time because there is a lot of paperwork to fill out and review. Once you are approved, you and your care team can begin coordinating medication shipments and training.
Ongoing authorizations
During your GHD journey, your insurance usually requires ongoing authorizations. You may need to get authorization as frequently as every 3 months. Your insurance company may also require authorization if your doctor changes or increases your child’s GH dose.
It’s important to stay connected to your care team. Let them know when your current authorization is close to ending. They can help you continue to get authorizations for your child’s GH treatment.
Appeals
What happens when your prior authorization request is denied?
If your request is denied, you can begin the appeal process. The number of appeals that you can submit is determined by your insurance company. Here are some steps to take when you want to appeal your denial:
- First, review your insurance policy and guidelines for information about appeals
- Know how long you have to appeal. Your denial letter will include a set number of days to file your appeal—put this in your calendar!
- Check your insurance policy for exclusions to make sure your treatment is covered
- Always keep a record of communication with insurance companies, both in writing and over the phone
Why was my request denied? Requests can be denied for a number of reasons. Identifying the reason is the first step to writing your appeal letter and explaining why your child needs GH treatment.
Keep your appeal letter simple and clear. Create a counter argument that explains why your child needs this treatment. You may need to outline the criteria that your child does meet and the benefits of GH treatment for their overall health. You may also need additional documentation.
Important documents
When filing your appeal, be sure to include these documents:
- Letter of appeal
- All denial letters from your insurance company
- Medical records, like growth charts, tests, and lab results
- Letters of medical necessity from your doctor(s)
- References to research from accredited organizations
Additional assistance
Many pharmaceutical companies offer insurance coverage support for their patients. If you experience difficulties with authorization and appeals, see if your medication company offers an assistance program. Advocacy organizations are also available for help with insurance questions and appeals.
Watch Outgrow GHD’s recorded webinar, Navigating Coverage and Insurance Trends, for key insurance information. Get guidance on the insurance process, managing authorizations, handling potential denials, and more. Visit our resources page for more information on how to find insurance support.
Working with Specialty Pharmacies
You may already be familiar with Specialty Pharmacies. However, every family’s journey is different. You may be wondering, what is a Specialty Pharmacy?
A Specialty Pharmacy largely provides medications to people living with health conditions that require complicated treatments, like GHD. A specialty drug, like GH, is more complex than a regular prescription. These drugs are considered more complicated because of how they are given, special access needed, required authorization, and more depending on the condition.
Specialty Pharmacies are designed to provide faster access to the medicine your child needs. They may also offer support services for injection training and reimbursement.
Your insurance company may choose a Specialty Pharmacy as their preferred pharmacy for GH treatment. You will order your treatment directly from the pharmacy and receive your medication—and any device(s) needed—in the mail. Depending on your insurance, you may receive a 1-month supply or 3-month supply of GH from the pharmacy.
Questions? Your care team is a great resource for getting the answers you need when working with Specialty Pharmacies.
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Your GHD journey can be challenging at times. Remember: your own emotional well-being is just as important as your child’s health. It’s okay to take a break when you are feeling overwhelmed. Check out our Activity Center for GHD-related quizzes and other resources.
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