PWS + DMD = big problems… dinner at our house

dinner at our house…

Little Miss Adorable has Prader-Willi Syndrome (PWS).  That means she is little, cute, has low muscle tone and is developing an insatiable appetite.  This is part of PWS – as she gets older she will lose the ability to feel full.  She could become morbidly obese (and have related health problems) or eat to the point that she ruptures her stomach.  Neither situation is good, so Little Miss Adorable is on a seriously calorie reduced diet.  Portions are rigorously controlled, food is kept out of her sight and she does not get seconds.  Ever.

She has never had cookies, candies, cake or ice cream.  There is no point giving her a taste of something she can never have.

Mr. Sensitive has Duchenne Muscular Dystrophy (DMD).  That means he is missing part of a gene that helps build his muscles.  Mr. Sensitive looks like an uncoordinated kindergartener as he ambles around the school yard chasing his friends.  Mr. Sensitive falls – a lot.  Mr. Sensitive will eventually lose the ability to use his muscles, but not for a few years.  In the meantime we try to life as full a life as possible.  Mr. Sensitive has serious anxiety issues and Sensory Processing Disorder (SPD).  For us that sometimes means that Mr. Sensitive is too worried or overwhelmed with sensory stimuli to do things – like put on his jacket, walk to the car, or eat a meal.

Mealtime is becoming a disaster in my home.  Little Miss Adorable’s PWS requires everyone to eat as soon as she does so there is not a tonne of food sitting in front of her when her dish is empty.  If she sees food on someone else’s plate she will point and demand, want that, want that, want that.  As soon as Little Miss Adorable is done eating she either goes to play with her baby dolls or into the bath.  Maybe she’ll watch a youtube video.  Redirection is the key in our home.

Mr. Sensitive is becoming so overwhelmed by anxiety, stress and sensory stuff that mealtimes are now where he whines, argues, refuses, pokes at his food and does not eat.  Two hours after dinner time however, he will take a plate of pasta out of the fridge and eat it.  And ask for seconds.  He is clearly not eating enough during the day.  (And judging by what’s sent home in his lunchbag, he’s not eating enough at school either.)

Our solution for now?  Little Miss Adorable goes to bed at 6:30 pm (she has always slept through the night).  Mr. Sensitive has a second dinner.  Sometimes Hubby and I have a second dinner too.

How are we managing so far?  I’ve lost over 70 pounds in the 7 months after the birth of baby Dunk.  Mr. Sensitive and Little Miss Adorable are both maintaining their weights – nothing gained or lost.  Hubby has gained weight, he’s always been an emotional eater who drowns his sorrows in a package of cookies.

I guess that’s the way the cookie crumbles.



About Angela

Super-powered, Special Ed teacher and special needs mama to FOUR (!) children with an assortment of special needs; including Duchenne Muscular Dystrophy and Prader Willi Syndrome. Our family features a heavy dose of good ol' ADHD). I blog about our halfpastnormal life.
This entry was posted in Duchenne Muscular Dystrophy, Halfpastnormal is who we are, Parenting, Prader-Willi Syndrome and tagged , , , , , , . Bookmark the permalink.

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