Growth hormone deficiency is present in almost all children and many adults with PWS. In multiple studies, human growth hormone (HGH) has been found to be beneficial for those with Prader-Willi syndrome. The first research on using growth hormone (GH) with Prader-Willi syndrome (PWS) began in 198I. In June of 2000, HGH was officially approved by the Federal Drug Administration (FDA) in the United States for use in patients with Prader-Willi syndrome. HGH is effective not only in increasing height, but also in decreasing body fat, increasing muscle mass, improving weight distribution, increasing stamina, and increasing bone mineral density. In addition, studies suggest its positive effects on development and behavior. In 2013, guidelines for the use of HGH in PWS were developed as part of an international meeting of experts – these guidelines are available here and provide an excellent overview of GH use in PWS. [Deal 2013]
Before Siena could begin Growth Hormone she had to have her adenoids removed because of severe sleep apnea (which we monitor with sleep studies when needed). So in December 2011, 9 months after being diagnosed with PWS, Siena began receiving HGH injections. Since then Siena has received approximately 750 injections – she gets a shot every night and is such a trooper! Her sisters love assisting with this nightly ritual and Papa Bob & Grandma Becky have leared how to administer the shots when mom & dad are away!! Siena’s wonderful endocrinologist, Dr. Jennifer Miller, monitors Siena’s growth and evaluates her blood tests every three months from the University of Florida and we have visited her twice a year since 2012. Now that Siena is 4, we will only have to visit her once a year… which is a little sad, as it is always a breath of fresh air spending time with this amazing doctor!! Thankfully, as many of my fellow PWS parents can attest, Dr. Miller is always just an email away or phone call away.
Here is a photo from the day Siena had her first HGH injection in December 2011, when we traveled on the train to Philadelphia for our “teach”….. and here are also a few photos of our visit in April 2014 with the infamous Dr. Miller…. xo