Tips for Starting Growth Hormone Injections in Turner Syndrome

Our Turner Syndrome Story

My name is Niki Jacobs, and I am a proud mom of a 5 year old, spunky, spit fire butterfly named Eliana. She was diagnosed with Turner syndrome in 2025 after her amazing pediatrician put a handful of puzzle pieces together. We were lucky she was aware of what Turner syndrome was, and the wide range of symptoms that can come with it.

Once we received the diagnoses my husband and I felt pretty lost, but we immediately read up on all of what Turner syndrome can entail for our daughter now and for the rest of her life. Given some of Ellie’s rigidity and sensory issues, we were very nervous about the idea of her needing growth hormone shots every night before bed, and how she would respond to that.

The only thing I felt like I could control was getting her prepared the best I could. I looked for an entire day for a children’s book that could portray what this nightly routine, or treatment, could look like for her, but I could not find anything that was light and age appropriate. So, I created my own.

Why I Wrote A Children’s Book

Since I could not find a children’s book to help myself and my daughter adjust to this new and scary journey, I decided to get creative with methods to introduce the concept to her.

Months before actually starting the growth hormone injections, I decided to try pretend play each night with Ellie, telling her she would be taking magic medicine to help her grow. We used a play shot from her doctor kit and added this into her nightly routine. I even created a fun little song to keep it light. I couldn’t believe that after the third night, SHE was reminding ME that she needed her magic.

When it came time for her to switch to the real thing two months later, she noticed right away that it was a different shot, but after only four days, she was already used to her nightly shots. After day six of her real shots, she was reminding me about needing her “Pinch Press Pull”. It was the greatest accomplishment of my life.

This experience made me want to create a children’s book for all of the other kids and families that need help transitioning to injections as a daily need, and build a sense of community.

Start with Pretend Play

Pretend play is a light and fun way to get the idea of shots in their mind as something not to fear, but to be proud and brave about. Use a play shot and have her do a shot on her stuffies, you, or even a sibling. Make sure it is part of their bedtime routine, and a time that you will be able to continue the shots once the real ones begin.

Bonus tip: As we got to 3 weeks out from starting the real shot, we used our nail with the play shot to add a little bit more of a pinch so she knew what to expect with the feeling coming. With this, we offered more cheers and praise!

Use a Song or Rhyme

Make up a fun song or unique rhyme can also not only distract her, but add to the fun!

We started with: Pinch, Press, Pull

Pinch – when the needle/shot is pinching into them

Press – when you press the shot down

Pull – when it’s time to pull the needle/shot out

We also created a little rhyme to cover the amount of seconds the injection needed to be in as well. This will be shared in my upcoming children’s book!

Use a Comfort or Distraction Device

You can incorporate a device or comfort toy for distraction from the pain. This will depend on your child’s personality of course, but there are different kinds out there. If your child is more comforted by a stuffed animal or doll, feel free to have it be a part of her shot routine.

There is a device Ellie uses and loves, the Buzzy Bee for Shots, and it is incorporated into the book. I am hoping to secure a partnership where a percentage of the proceeds from the device purchased from my link can be donated to the Turner Foundation!

Going Forward

I hope that my experience can help other families and children adjust to the unknown journey of injections.

With that, I wanted to share my author email for anyone that would like to be notified once my official website for the book is up, when partnerships arise that may give our community some discounts or support, and of course once I get a release date and approval for pre-orders. I will be donating 25% of the proceeds from each copy of my book sold to the Turner Syndrome Foundation.

To stay connected with updates on the book, you can email me at Niki.Jacobs@outlook.com.

I am sending love to all you amazing families and butterflies, and I hope to be a voice for our community going forward!