Prader Willi Syndrome

PWS is a complex genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior.  Although each person with PWS presents differently, below are some of the more common challenges faced:   

  • Difficulty in auditory and visual sensory processing 

  • Inability to recognize feelings of hunger and satiety resulting in a continuous urge to eat    

  • Poor behavioral and state regulation (emotional outbursts, screams, hyper-silly behaviors) 

  • Difficulty transitioning 

  • Poor eye contact, poor visual tracking and hand-eye coordination 

  • Delayed gross motor and bilateral motor planning skills 

  • Auditory processing difficulties, memory, phonics, comprehension and literacy skills 

  • Dyslexia tendencies 

  • Limited attention span, especially in classroom or group settings 

  • Poor engagement in the classroom and with other children 

  • Incontinence, bed-wetting. 

iLs is based upon the fact that we can change our brain – we can essentially re-wire it through specific and repeated stimulation, a concept known as neuroplasticity. Significant research or studies have been conducted showing significant improvements in visual, auditory and sensory processing disorders, reduction in the symptoms of autism, improved cognitive functioning, reduction of dyslexia tendencies, reduction of bed wetting as well as improved attention and regulation of self. 

As a family, we were rocked by our daughter's Prader Willi diagnosis at 5-weeks-old.  In April of 2017, we found iLs and on May 1st our daughter Ashley started her listening therapy. To say we were thrilled with the results would be an understatement. Our daughter who has gross motor delays began climbing up her swing set slide without falling. She started to pull herself up out of the pool instead of using the stairs. She also has incontinence at night. I am happy to say that she has woken up dry 16 out of the last 18 days. 

Five weeks into the program, she said that she was cold. She has never commented on her temperature and as with many children with PWS, she has difficulty regulating her temperature. On a particularly hot day when she was doing therapeutic horseback ridding, she told her instructor she was too hot. 

In addition, her processing time has shortened. At her most recent parent/teacher conference, her math teacher was nearly bursting to tell us that she had solved a math problem in 8 seconds. We have noticed this at home as well. Our requests to her are done almost immediately as opposed to the 20 - 40 second lag time we used to see. 

“I have been thrilled with the results of iLS in children with Prader-Willi syndrome.  This system can help with processing speed, speech and language development, and even sleep. “  - Jennifer Miller, MD, Pediatric Endocrinology: University of Florida 

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