A Family’s Guide to Starting Daily Growth Hormone for Endocrinology Patients

After the growth hormone has been prescribed, the endocrinology team begins to work together to make sure that your child receives the medicine. The steps are described below.

The reimbursement team at Children’s Hospital of Philadelphia (CHOP) Specialty Pharmacy completes an insurance review to determine coverage and identify the pharmacy/distributor of the medication.

Insurance review and initial shipment of the growth hormone can take up to 4-6 weeks. If growth hormone is initially denied, it will take longer.

If you do not hear anything in 4 weeks, call the Growth Center coordinator in the Endocrinology Department at 215-590-3174 and follow the prompts.

If insurance does not approve the growth hormone:

• Your provider will be notified so they can determine the next steps, which may include a different treatment plan.  
• Sometimes, the decision may be overturned with an appeal, but this is not always the case.
• You will be notified if you need to provide any additional information.
• Appeals may take up to 3 months to be processed and do not always lead to insurance approval.

If insurance approves the growth hormone:

• The insurance company will determine the pharmacy/distributor of the medicine. CHOP Specialty Pharmacy will notify you.
• Growth hormone therapy is supplied either through a homecare company or through mail order pharmacy.  In most cases, the growth hormone cannot be filled at a local pharmacy.
• If CHOP Specialty Pharmacy is the distributor, they will contact you to set up a shipment date and provide further instructions.
• If a different specialty pharmacy will be the distributor, then your provider will be notified to send the prescription to the specialty pharmacy.
• The growth hormone team will tell you who the distributing pharmacy will be and provide instructions on how to call and set up an account with them.

• Most growth hormone brands need refrigeration after delivery.  Check the manufacturer’s instructions for specific directions.
• Once you receive your child’s medicine, call The Family Learning Center (FLC) at 215-590-6078 to schedule a growth hormone training session.
• Two adult learners and the child should attend the class. Bring your growth hormone medicine and injection supplies to the class. Remember to keep the medicine chilled.
• You will give your child the first growth hormone injection during this class.

Your child needs a current height done before starting the growth hormone. Knowing your child’s height before starting the growth hormone helps to evaluate how the growth hormone is affecting your child’s growth.

• If it has been more than 3 months since their last measurement, their height can be done on the day of the growth hormone class.     
• Visit the Endocrinology Clinic located on the 7th floor of the Buerger Building between 8:00am-4:00pm to have your child measured.

This can be done before or after you attend the growth hormone class.

Once your child begins growth hormone therapy, they need routine follow-up visits with their Endocrine provider. Your child needs to be seen 3-4 months after starting growth hormone treatment.

Follow-up appointments will be every 3-5 months to assess side effects, growth, and development. You may schedule these appointments in advance.

Bring the following information to every appointment:

• Name of the growth hormone medicine
• Name of distributor or pharmacy
• Size of medicine cartridge
• Dose of medicine
• Needle size (gauge and millimeters)
• Questions or concerns

What should I expect when my child begins treatment with growth hormone?

Your child will begin to grow more rapidly. You may notice this in the first few months after starting treatment. Because your child is growing more quickly, they may outgrow clothing faster than before. Feet and hands are often the first to grow, so changes in shoe size may be more frequent. Hair and nail growth often increases after starting treatment.

Children with growth hormone deficiency may be slower to lose baby teeth. Once treatment is started, your child may lose baby teeth at a faster rate.

An increase in growth often stimulates appetite. A regular, well-balanced diet is important for good growth. No special diet or dietary supplement is required.

Sleep patterns are not affected by growth hormone treatment.

What are possible side effects of growth hormone?

• Allergic reaction: swelling at the injection site, rash, or hives
• Growing pains: mild achiness in the joints, such as hip, knee, or other joints. This does not limit daily activities
• Fluid retention: puffy hands or feet
• Headaches: more common if your child had headaches before starting the growth hormone
• Children with scoliosis, prior to starting treatment, may experience further spine curvature as their growth rate increases.
• Slight increase in blood sugar levels. These levels will be monitored while your child remains on the treatment.

If your child develops any of the following severe side effects, immediately call the Endocrine office:

• Severe headache
• Blurry vision  
• Vomiting
• Limping
• Severe joint pain in the hip, knee, or leg leading to inability to walk
• Severe abdominal pain

What time of day should my child receive the growth hormone?

It is best to give the growth hormone in the evening, between dinner and bedtime. This is because growth hormone is naturally released during nighttime sleep. However, growth hormone given earlier than bedtime is better than a missed dose. For example, you can give the injection at noon if your child is going away overnight.

If your child is prescribed growth hormone due to low blood sugar levels, the medicine schedule may be different. In this case, your health care provider will give you specific instructions about the timing of the growth hormone injections.

Is there one injection site that is better than another?

Any injection site appropriate for subcutaneous injections is appropriate for growth hormone treatment.

You will be given specific instructions on injection sites and how to rotate these sites during the growth hormone training session.

What happens if we miss an injection?

There will be no harm to your child if an injection is missed. However, missed injections can slow down growth. If your child has been diagnosed with low blood sugar and is using this medication for treatment, monitor your child's blood sugar and contact your health care provider or the endocrine fellow on call (if after hours) for any concerns or questions. 

What should I do if I do not have enough medicine in the cartridge or bottle to give a full dose?

Do not throw away any growth hormone. You will be instructed on how to handle partial remaining doses during the training session.

What do we do during travel or camp?

The health care staff at the camp can give the injection to your child. You can travel with growth hormone if it is properly stored, such as with ice packs. Some growth hormone brands require refrigeration. Check the manufacturer’s instructions for specific directions.

Can my child take other medicine while on treatment?

Over the counter medicines can be taken while receiving treatment. However, if your child has multiple medical problems and is being prescribed a new therapy, contact your Endocrine provider about the new treatment. Examples include the use of steroids such as prednisone.

Can my child receive growth hormone injections during illnesses?

Growth hormone therapy can be given during time of illness. However, if your child is ill and uncomfortable, you may decide to temporarily stop the injections. If your child has low blood sugar levels, you should not stop the growth hormone before speaking with your child’s Endocrine provider.

What studies will be done to monitor this treatment and how often?

Your child will have blood testing about every 6-12 months. Bone age X-rays may be done yearly.

Is one brand of growth hormone preferred over another?

We do not have a preferred brand. Your insurance company determines which brands are covered by your plan. During the course of treatment, an insurance company may change the preferred brand.

Changes in insurance coverage may require a brand change. If you know about changes to your insurance plan or changes in your insurance’s formulary, call our office as soon as possible. Our office will work with you, your insurance company, and the pharmacy/distributor to ensure a smooth transition.

Who can I contact with questions or concerns?

Contact your Endocrine health care provider at 215-590-3174 or through MyCHOP.