Prader Willi Syndrome: Jaden's Story

Posted on Mar 10, 2017

If you’ve ever had one, you know that most 11-year-olds dread going to bed. But for Jaden and his mom, Milan, nighttime was a nightmare. From age 4 through 11, Jaden barely got a moment of sleep due to severe sleep apnea. That meant Milan, his single mother, was awake right along with him. He was afraid. He was cranky. He could barely function at school. It was misery for both.

Jaden has Prader Willi syndrome, a complex genetic disorder that affects appetite, growth, metabolism, behavior and cognitive function. Weight struggles for affected kids often lead to sleep apnea, a serious disorder characterized by pauses in breathing while a person sleeps. Although he was diagnosed in Texas at age 4, doctors there were not ready to address the apnea. It wasn’t until the family moved and Milan was recommended to Johns Hopkins All Children’s Hospital by a neurologist that they both found relief.

“Jaden is a wonderful boy who faces challenges every day including eating. He is my hero,” his mom explains. “Prader Willi syndrome sends his brain chronic signals of insatiable hunger. He’s on a strict diet and we are very careful but he still faces weight issues on fewer calories, and low muscle tone which affects how much he can exercise.”

As a full-time working mother with limited help to assist with a child facing medical issues and behavior problems in school, Milan was desperate for help.

Sleep Center Services

The Sleep Center at Johns Hopkins All Children’s Hospital is accredited by the American Academy of Sleep Medicine. Among the available services:

  • A board-certified sleep medicine physician familiar with various sleep    disorders affecting children with complex and rare medical problems.

  • A certified sleep educator to help patients learn to adjust to the CPAP mask.

  • Technologists trained in working with complex medical issues offer comfort and expertise which positively affects testing success. 

  • Specialized laboratory equipment that meets special pediatric standards including carbon dioxide monitoring not readily available in many adult-focused l aboratories.

Sleep Center Provides Help

Jaden was offered a multidisciplined care plan that included work with sleep medicine, surgery, continuous positive airway pressure (CPAP) therapy and a long-term physical therapy plan that helps with weight loss.

“We have seen dramatic changes and Jaden is now able to function better, especially in school,” his relieved mother explains.

Jaden was taught how to use his new CPAP machine and it took a few tries with different masks before he found one with which he’s comfortable. He’s a little fussy and usually wears it for six or seven hours a night—but even that is a significant improvement in sleep time. Jaden, who wants to be a firefighter or an EMT, has great respect for all of his doctors and nurses. “He really listens to them and he loves them. He’s a big kid so not every adult remembers to treat him like an 11 year old, but they all do at Johns Hopkins All Children’s.”

Jaden does his twice-a-week physical therapy at the Johns Hopkins All Children’s Sarasota Outpatient Center, but the family still visits the St. Petersburg campus for regular appointments.

When asked if he has a favorite caregiver, Jaden says, “Do I have to answer? Can I say all of them?” He was a little afraid before the adenoid surgery, but the staff explained it all and eased his fears. Now, Jaden says, “I would tell my friends and cousins not to be afraid of the hospital.”

As for mom? “When Jaden is sleeping, I get to sleep. And he’s doing so much better in school with the help of the Prader Willi Association in Sarasota and school staff, which means I’m doing better at work. He is so much happier, and more well-rested. Jaden truly inspires me to be a better person. He’s a great kid.”

Finally, a good night’s sleep, nightmare-free for this family.

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