Precocious Puberty and RSS – Part I
The topic everyone has been waiting for:
GUEST BLOGGER – Leslie Leach
Mom to Christopher, Russell-Silver Syndrome and Eosinophilic Esophagitis
My friend Leslie and I met on the internet. She is an amazing woman whose son Christopher has Russell-Silver Syndrome. In part 1 of our 3 part series on Precocious Puberty in Russell-Silver kids – Leslie speaks about how quickly Precocious Puberty evolved in Christopher. In part 2 and 3 of this series, Leslie and I will discuss the signs, symptoms, and treatment.
Chris was diagnosed with Russell Silver syndrome when he was 3 years old after countless visits to specialists. He was born 4 lbs 4 oz and had typical RSS dysmorphic features, failure to thrive, feeding difficulty, reflux, sensory issues and chronic ear infections.
We attended the MAGIC foundation wanting to get answers and a diagnosis. We were so focused on getting Chris fed and nourished, that the thought of him as a school aged child was something we could not imagine. We never attended the seminars on Precocious Puberty. At that point we were going day to day and was unsure of what his future would hold.
The food, physical, and speech therapy coupled with Growth Hormone actually worked and he grew. He physically started to change and started to grow at a fast speed. As he grew, he began to meet more developmental milestones and we were only dealing with frequent ear infections and some crowded teeth.
In September of 2009 when Chris was 9, we started to notice a slight change in his voice. We thought he had a cold for a few days because he literally woke up with it. It happened very quick! We then began to notice his skin breaking out. It then hit me like a ton of bricks….and at that moment I wished we had paid more attention to the Precocious Puberty seminars! I immediately placed a call to his Endocrinologist. His bloodwork came back with a testosterone level of a 15-17 year old. That was shocking and we knew it had to be treated. The fear was that he would have his growth spurt and his growth plates would close prematurely causing short stature as an adult.
The doctor gave us our options: Lupron injections or a Supprelin implant. He explained Lupron injections came with more side effects and the shots were monthly. We chose the Supprelin implant, although costly, because it was placed in his arm once a year. This seemed like the least invasive option. Before the implant was placed in January 2011, his voice had already changed completely. He also had some hair growth. None of these characteristics are reversed with treatment. The testosterone levels are what decrease and that is the most important. The side effects he experienced were an increase in weight and some mood swings.
He has been very blessed not having issues at school with other children making fun of him. They definitely noticed in 4th grade as he was the only child with a deep voice. His personality and ability to adapt has benefited him, as he has never felt sorry for himself. His teachers have been very supportive.
One of the unexpected emotions has been the loss of him sounding like a little boy. He sounds so much older than he is, and that is difficult because I was not ready for that to happen so soon!
The Supprelin implant was successful in that it decreased his testosterone, delaying puberty. However, when it came time to decide to remove the old implant and place a new one, Chris was adamant about not wanting another one. He said he was tired of going to so many doctors and wanted his body to just go through puberty. This came on the heels of the new diagnosis of Eosinophilic Esophagitis. A severe form of food allergy when the esophageal cells attack the esophagus. His diet has been so restricted that it has taken a toll on him.
We decided to allow him to have a say in the decision to continue treatment for precocious puberty. It was important to give back some control in his life. He is well aware if we stop then his adult height may not be ideal. His answer to that was “I’m not planning to be a basketball player”.
It has been 2 months since the Supprelin removal. We will continue to keep an eye on his growth physically and emotionally. He will continue to be followed by the endocrinologist every 6 months.
We remain in awe of his spirit, strength, resilience, sense of humor and will continue to guide him through this journey no matter what the future holds!
– Leslie Leach