a bit about Sotos Syndrome and one of our Dragons

Our journey with Sotos Syndrome began on 12/14/2002 when my son Daniel was born. I didn’t know it then, but we were about to go on a very long journey together. Daniel was diagnosed just five days before his first birthday.

Sotos Syndrome is a deletion or mutation on the NSD1 gene, which is a fancy way of saying that Daniel has an overgrowth disorder. Sotos causes OCD, ADHD, hypotonia (low muscle tone), anxiety and developmental delays. It’s a very complicated disorder because it presents differently in each individual and causes a wide-range of challenges. For example, some kids with Sotos will never speak, but those that do tend to talk a lot (which is Daniel’s case).

Early intervention is the key to helping Sotos kids get further in life, so needless to say,  our first three years were a blur!  Most parents mark a child’s first year by the developmental milestones that they reach, but I marked Daniel’s first year with the names of each specialist we met. There were times when we had about six appointments a week! We saw Physical Therapists, Speech Therapists, and Occupational Therapists at least twice a week.

Daniel has had problems with his knees, because he grows so fast that his body can’t keep up.  Daniel’s tendons stretch so tight that they force his knee cap out of alignment. We feel so thankful for a good Chiropractor!  Daniel also  has problems with his teeth (Sotos kids have low enamel), as well as issues with reflux, which is common for children with Sotos Syndrome.

Daniel will probably always have some issues that are both physical and behavioral in nature.  However, in most ways he’s a normal kid. He loves to play baseball (he’s a Miracle Leaguer) and basketball.  He loves riding his bike, going to the dog park, and reading. He also really loves being a Dragon! I really believe that getting him into DCCS has been one of the best things I have done for him. He’s so happy there. I hope that all of your kids are having enjoying the school as much as Daniel.

Kellie Penny
Proud Mom of Daniel
Super Sotos Mom
President of the SSSA

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A huge thank you to Kellie Penny for sharing a bit of Daniel’s story and teaching us all about Soto’s Syndrome!  Dragon families:  We would love to share your story too!  Please email us if we can feature your uniquely wonderful Dragon in a future blog post!