Updated: Sep 8
One of the most common questions that Turner Syndrome patients and parents have is the use of Human Growth Hormone injections. Do parents often ask what HGH really is? When and if my child should start it? What is the risk of injections? Do the benefits outweigh the risk? I know that these were the questions my parents and I certainly had when I first started the process myself. Although I have watched plenty of Grey’s Anatomy, I am not a doctor. So this week’s blog I will write about my experience with HGH treatment and try my best to address the most common questions about this course of treatment.
Around the time I turned seven, my regular medical doctor recommend to my parents that I visit a Pediatric Endocrinologist, to start looking into the process of Human Growth Hormone injections. For the next 2 years, I had regular visits With Dr. John Sheslo and he observed my growth which was way below average. I was literally only growing a half-inch a year and it was clear intervention was needed to help me achieve normal height. After further testing, it was strongly recommended to my parents that I should start the injections.
A week before my tenth birthday March 8, 1995, I started my first injection. At the time I was only 3”7 and we were not sure what the outcome would be in the end. They even took my parent's height and used that as a benchmark for what my average adult height should be.
For the next six years, I would take injections six days a week and have one day off. I picked Fridays as I was determined not to have to take the medications at a friend’s sleepover. It was a rocky start, as to this day I hate needles so having to have injections six times a week was not ideal, but it became just like every other adjustment my family found a routine to it. Each night before bed either my mom or dad would process the injection. The medicine would be mailed to us and it was extremely costly even with my parent's great healthcare plan it still was an out-of-pocket cost of around 1,900 a month.
About 2 years in I was finally getting used to the shots and my parents found a way to help with a tool called the inject-ease, it was a way for me to not see the needle and somehow made it a little easier to give me the medication and I even started to do it myself . I was growing and showing that I was benefiting from the injections.
The only concern that the Doctors had was since with Turner Syndrome there is an increased risk of diabetes and with HGH it is even higher, My blood sugars spiked and I needed to get further testing at the Sioux Falls SD Children’s Medical Center. The test came back good and I was able to continue the medication and for the next 4 years I did and when I turned 16 I was officially a normal adult height of 5”1 and was advised that I no longer needed the medication.
I am still considered short and believe me my family and friends have a lot of fun with it. I would strongly recommend this treatment to anyone who is diagnosed with Turner syndrome I am grateful to Dr. Shelso and my parents for starting me on this course of treatment. It was a game-changer for me and I know it is a scary and costly treatment but it could be the best thing that ever happens for your child I hope this gives you and your family some insight as you consider if this is the right journey for you.
Also, now that I have shared my personal experience with HGH treatment I wanted to try address some of the questions most parents and patients might have while starting the process. The first question is what exactly is Human Growth Hormone? Growth hormone injection treatment is prescribed for children who have been diagnosed with growth hormone (GH) deficiency and other conditions causing short stature.
The second most common question is what is the process and how soon should my child start treatment According to The Children’s Hospital of Pittsburgh the average age a child should start treatment is around 10 years of age. a process is usually a number of tests that are conducted first to confirm GH deficiency, for example, Turner Syndrome, or other conditions for which GH therapy is indicated. These tests may include stimulation tests, MRIs, and x-rays. After the test are confirmed usually by a Pediatric Endocrinologist then treatment is recommended
The third most common question is what to expect after starting HGH? According to the Children's Hospital Of Pittsburgh, it could take up to 3 to 6 months to first notice signs of growth it is common that 1 to 2 inches of growth will occur in the first 6 months. it is common for your child to outgrow shoes in the first 6 to 8 weeks. Your child may eat more than you are used to and it is common that they will look thinner as they are starting to show signs of growth. Your child will likely be on this journey for a number of years until they achieve adult height or born maturity.
The fourth most common question is what is the risk? There are a few risks while taking Human Growth Hormone injections such as an allergic reaction like swelling and redness around the injection site. Also headaches and that was one I personally dealt with while on it. Increase blood glucose levels while on treatment. After the compilation of the medication, it will go back to normal. Overall it is a very safe and effective course of treatment.
The last common question I will address is the dreaded question is this treatment covered by insurance? That is a hard question to answer as each insurance provider will be different I would recommend speaking to your provider before starting a course of treatment
Overall this is a personal decision that you and your family must make and I hope this week’s blog help address some of your questions. Below are some resources for you to use as you are making the decision www. Turnersydromefoundation.org, https://www.chp.edu/our-services/endocrinology/resources/endocrinology-patient-procedures/growth-hormone-treatment and www. tunersyndrome.org. if you like to share your personal journey in the comments section below or send me a message I would love to hear from fellow butterflies.