My 12-Year-Old’s Experience With Growth Hormone Injections

My 12-year-old’s Experience With Growth Hormone Injections

Although my husband and I are short, we were surprised when our oldest child’s growth slowed. Over the last two years, the size difference between my son and his peers became increasingly noticeable. What ultimately caught our attention was when our other son, younger by more than two years, became the same height as his older brother. Our pediatrician referred us to Children’s Hospital Endocrinology. As a pediatric nurse, I know the process can be misunderstood and isn’t often discussed, so with my son’s blessing, I wanted to share our experience for other families who might be in a similar situation.

My 12-year old (left) and my 9-year-old (right) are the same height.

Step 1: Referral

Generally, specialty clinics won’t see patients without a referral, so this part is important. As soon as you suspect an issue, talk to your pediatrician. There aren’t many pediatric endocrinologists, so there can be a long wait to be seen.

Step 2: Endocrinology Consult

Our first appointment was mid-June. During this visit, our endocrinologist, Dr. Felipe, talked to my husband and me about our family history. She paid particular attention to heights of our relatives and asked how old we were when we started puberty. She asked for pictures of my son with his classmates and his brother so that she could get a comparison. She considered my son’s clothing size (size 8-10 at age 12). Dr. Felipe took several measurements, including height and arm span, and even examined his genitals for signs of puberty.

Step 3: Blood Work And X-Ray

The endocrinologist ordered basic labs, as well as glucose and T4, to rule out a thyroid issue. All labs were within normal limits. Next was a hand x-ray. She used this to determine bone age and assess whether his bones were maturing at a rate appropriate to his age. Dr. Felipe was not immediately concerned by the x-ray and advised us to wait two months to see if puberty might kick in. We scheduled a follow up for September.

Step 4: Stimulation Testing

At the follow up visit, we learned my son had not grown over those 60 days since his first visit. She ordered a growth hormone stimulation test. This 3-hour test was the most invasive part of the process. Because a patient may not have any food or drink prior to the test, all growth hormone tests are scheduled at 7:00 AM in the Children’s Hospital Infusion Clinic. The test requires an IV in each arm. The two-IV system ensures that medication can be given through one IV and blood can be drawn from the other. Because numerous blood samples are required, an IV allows the nurse to simply attach a syringe and draw back from it, avoiding multiple needle sticks.

The nurse administered arginine, an intravenous medication that stimulates the pituitary gland to secrete growth hormone. She drew baseline labs and infused the arginine over 30 minutes. Over the next few hours, the nurse collected serial labs to determine whether his body made the appropriate amount of growth hormone in response to the arginine. In addition, she checked stress hormones and blood sugar, as they can also influence growth. Something to prepare for is three total needle sticks: two IVs and one subcutaneous injection of glucose. After that first hour, the rest of the test was smooth sailing. My son’s biggest complaint was hunger, as he’d fasted overnight and throughout the entire test. Otherwise, he stayed busy with video games and school work.

Step 5: Results

Results came a week later. His growth hormone level was 0.3; normal is over 10. His brain did not make growth hormone correctly when stimulated, so further intervention was needed. Before he started daily growth hormone injections, he needed an MRI to rule out an unlikely tumor on the pituitary gland that might cause problems making growth hormone. My son’s MRI was clear, and we got the green light to start injections.

So proud of his ownership!

Finally, The Injections

Growth hormone injections are very expensive, and insurance doesn’t easily approve them. After a week of jumping through some prior auth hoops, our insurance agreed to cover (our monthly co-pay is still $250!). My son takes one daily Norditropin injection. We don’t know how long he will need it, but it could take 4-6 years. My husband and I are both pediatric nurses and felt comfortable with the subcutaneous injections. We started him off, but by day 3, our boy could inject himself. He hasn’t experienced any side effects so far, but we’ve been advised that growing pains are common.

Overall, we were pleased with the process, but it took about six months from meeting the endocrinologist to getting injections. If you suspect a growth issue, consult your pediatrician now to get the ball rolling. We look forward to the results and hope that the shots, combined with puberty, will get our boy growing.

Alyson Haggerty
Alyson lives in Metairie with her husband, Patrick, their two boys, and their Morkie, Beignet. After teaching for almost ten years, she left a career in education, earned her BSN, and now works as a pediatric emergency nurse. In her free time, Alyson enjoys flipping furniture, writing, dancing, and painting. She is always looking for a racquetball partner and loves streetcar rides and playing board games with her family. A good cook, she is constantly on a quest to answer the age-old question, “What’s for dinner?” but has thus far been unsuccessful.

2 COMMENTS

  1. Great post! I work as the Patient Advocate for The MAGIC Foundation, a nonprofit dedicated to children’s growth disorders, and we would love to share this across our social media. Our families are always grateful to hear stories that make them feel less alone. Let me know, if you’d like to connect. -Courtney

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