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Puberty and DMD
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- Posted in DMD, Duchenne Muscular Dystrophy, Uncategorized
I am always in the field looking for more information to help me navigate the Duchenne trajectory and I try to be one step ahead of how it is affecting my son, so I recently watched a webinar from Dr. Rob Benjamin, a Pediatric Endocrinologist at Duke University who described what puberty is like for a non-Duchenne male vs what is expected for a Duchenne affected male.
He stated that the FIRST and most important sign of puberty starting is testicular enlargement. He gave this diagram below about the size of the testicles in comparison to age.
He stated that typically around age 14 Duchenne boys will be checked for levels of LH, FSH, and testosterone. Typically with Duchenne boys, the levels for these will be decreased (due to steroid use which leads to delayed puberty). A bone age scan will also be done, which is just an xray of the hand.
The question remains when to begin testosterone supplementation.
He stated that if at age 14 there are no signs of puberty, the next thing to do is to try to “jump-start” the brain by giving 3 months of low dose testosterone and then to reassess in 6 months.
After it is established that testosterone supplementation is needed, a gel or injection is most likely to be prescribed. The benefit is approx. 14 cm in growth as well as increasing levels of hormone.
In regards to the gel, typically a glove is used as to not have it be absorbed by the person applying it. If the shot is given, then that can produce acne and also lead to an pain or issues of infection due to injection.
If you would like to watch the webinar or learn more, below is the link to the video!
WATCH: Puberty and Duchenne – Webinar Recording with Dr. Robert Benjamin, Pediatric Endocrinologist
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In 2012 my oldest son, Jackson, was diagnosed with Duchenne Muscular Dystrophy. At that time I had never heard of it and so began this journey. I realized that because of the extent of the diagnosis, I don't have much time with my dear son. I took a year to process, grieve, get upset, test my faith, and then to make the decision of how I would let this affect me. The result is this website, Joy in Jackson's Journey, because I realized that instead of falling down with the pain and heartbreak of my situation, I'm choosing to rise up and face it head on, to fight for my son and to show how I not only survive through this new normal, but thrive.
Our Story
It all began back in January of 2012, Jackson was 3 years old and had a diagnosis of Autism (which I’ll share about later), and I took him to see a Biomedical doctor to try the gluten free/casein free diet and supplements to see if if would help him out. After meeting with the doctor she ordered a routine bloodtest to make sure that there wasn't any underlying disorders before beginning supplements.
A few days after getting Jackson’s bloodwork done, I got a phone call from the Doctor. It is a day I will NEVER forget. First of all, because I knew she was away on a family vacation and she was calling me and #2) because she then said, ”I received Jackson’s labs and I need to discuss something with you”.
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