Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Monday, August 13, 2012

Early to Bed, Early to Rise...

Early to bed, Early to rise,
Makes a man,
healthy, wealthy and wise.
-Ben Franklin

Many children diagnosed with Prader Willi Syndrome seem to instinctively follow Ben Franklin's sound advice, or at least this is true for my son, Nicholas.

No matter what I do to try to engage my young son, by 7 pm he is tired and ready for bed. Of course, with this early to bed time comes the opposing early to rise time.

While the rest of the house is sound asleep in their beds, Nicholas is wide awake and enjoying his morning quiet time. He watches TV, plays with his toys and explores our dark, quiet home. Often, I have awoken to find all of the contents of our front closet scattered across the hallway floor or my favorite antique lamp sitting disassembled on the dining room table.

More seriously however, while Nicholas does get 10 hours of ample sleep time, the early rising creates a problem for a child who is designed to eat.

Parents of children diagnosed with PWS must be vigilant in their efforts to ensure that all food is secure before bedtime thus preventing the life threatening food seeking that can occur during this early wakening period.

Refrigerators and cabinets must be locked. All food must be removed from counter tops and cabinets. Given this uninterrupted alone time, children diagnosed with PWS can become very clever in their ability to disable locks and unscrew kitchen cabinets, driven mercilessly by their unquenchable desire to eat.

It is not unusual for children diagnosed with PWS to raid basement freezers, eating things like frozen meats, pies, pastries etc. Household baking items like powdered sugars and syrups stored in pantries are other potential food sources for our always hungry children.

In severe cases, some children diagnosed with PWS will elope in an effort to find more available sources of food. Many PWS parents resort to installing home alarm systems that will warn them if their child tries to escape the house in search of food.

There is hope, however.

Researchers have uncovered a gene called Magel2 which is highly expressed in the hypothalamus of the brain. Recent studies of this gene and its expression, seem to suggest that it plays a role in circadian rhythms (early rising), growth, metabolism, endocrine function and fertility.



It is the hope of all parents of children diagnosed with PWS that this research will help us to better understand and more importantly "treat" these unusual and life threatening features common to so many of our children.

Luckily for us, Pete also rises early for work each morning. He feeds Nicholas his breakfast immediately which seems to help alleviate Nick's early morning food-seeking temptation for now. We also ensure that all food is placed away in our pantry with the door closed and locked before we head to bed. Even Weston has become super vigilant in his ability to remember to close and lock the door.

If and when Nick's food seeking escalates, we are ready to install an alarm or redesign our kitchen to accommodate the unusual needs of our hungry child.

As Ben Franklin also said....

By failing to prepare, you are preparing to fail.

Our family has adopted its own PWS motto...

We hope for the best but like our favorite founding father, we are aways prepared to find solutions for the worst!


Elizabeth said...

The extraordinary characteristics of Prader Willi syndrome never fail to amaze me -- and equally so, the efforts of families to help alleviate them. I hope this new research has results that will help everyone -- thank you for educating all of us and for doing so with an inimitable sense of humor and strength!

Lisa said...

Thank you dear Elizabeth.
You are very special to me.

The Henrys said...

As always Lisa, I am blown away by the wonderful care you give your son. You are truly an amazing mother.

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