The Prader-Willi Syndrome Monster

Even the smallest items can be dangerous to a child with PWS
                                            Even the smallest items can be dangerous to a child with PWS


One of the biggest issues about Prader-Willi Syndrome that make it more dangerous, even more so than overeating, for our son is impulse control. Impulse control is a relentless monster that lurks every minute of the day waiting to hurt or injure. The following is about what the two words impulse control mean to the parents of a teenager with PWS and Autism.

Let’s start off with child proofing the entire house. This means anything that an 18 month old could get into and cause harm to property or person. That includes locks on medicines, cleaners, cabinets and consumables, things that a toddler might in some way get hurt by. Check that off the list. Now we are just getting started.

Next, to ensure safety of our 14 year old, we need to contain anything mechanical/electrical. These are things an 18 month old would not or could not operate. Knives, scissors, pliers, tools (even those without moving parts), finger nail clippers, nail files, disposable razors and most electrical items. You would not have these near a toddler but securing them from a toddler would be fairly easy. If the person is 5’7” and understands how to unlock things with a key it makes a big difference. Oh and we can’t forget matches, lighters, paper clips. Anything that could pose some kind of cutting, burning, pinching, destruction hazard must be considered. Look at every item in your home and think “is this thing capable of doing damage if used as what it was meant for?” or “is this thing capable of doing damage if used as what it is not intended for?”

Ok we are getting there but are not there yet. Next we need to secure band aids. Yes that is correct. The band aid can be put on too tightly if not closely supervised causing blood loss to the bandaged finger. Same thing can be said for ace bandages to an arm, a “pretend” bandage done with a belt, bandana or shoelace for that matter.

 Have you thought yet about Epson salt? It is great for a sprain or sore muscles but what happens when in the time span of less than a minute the box of salt is spirited off to a bedroom to begin filling of an Altoids tin or other containers? While not deadly in reasonable doses, what happens when someone intends on ingesting a box? 

The little silica packs that come in new items to keep moisture out have to be policed. Sugar packets from restaurants while not dangerous in a few packs could be unhealthy by the handfuls.

All food is of course of limits unless it is meal time. 5 boxes of Girl Scout cookies can disappear in a hurry if a single lapse in supervision happens. The extra 6000 calories are scary enough but then there is severe constipation and possible intestinal blockage that can occur. I am not saying here that Girl Scout cookies are the cause of constipation but anything can be dangerous if a large enough amount is consumed at once. The quantity of food isn’t always the culprit either. Red 40 food coloring is in many items and in our son Red 40 heightens, hyperactivity, poor judgement and you guessed it worsens impulse control. As if knowing to avoid red 40 coloring is enough. Now it has new names to be aware of that include: Allura Red AC, Food red 17, C.I. 16035, E129 and I imagine several more by now. There is even a Wiki page that surprisingly mentions the health effects to children. wiki red 40

Did I mention peanuts? In the past my son’s body tried to stop breathing as a result of peanuts and required a shot with an EpiPen. Not only are the needles much larger than I would expect but it is also a mandatory ER visit once administered (though the difficulty of breathing would also merit the ER). It could be my boy has outgrown the allergy to some extent but it is not worth taking the chance just to try out a new food.

You may ask “is there anything in your house that is safe?” “How about water?” you may inquire, “surely the water is safe?” Every year our water is tested and the lab assures us our water is absolutely safe. Or is it? While the water is safe we have recently become aware that the amount of water being consumed could be, if unsupervised, a high enough amount to water down medicines or even cause injury. Put unsupervised cups on the list of dangerous items.

We have been so blessed having a mother, father and caring younger sister at home full time to have 3 sets of eyes on the situation to keep things safe but extra eyes aren’t always enough. Alarms have been installed to allow sleep at night so the refrigerator is not pillaged.

PWS proofing is much different than child proofing. Just when we delude ourselves into thinking we are a step ahead, the PWS monster shows up and proves us wrong. I know for certain there are extra Angels watching over our A-man and keeping him safe even though he makes poor decisions often. I also know that he is not the only one out there that this happens to. Parents reading this please share your experiences and what you have had to do to PWS your home and keep your child with PWS safe.

I love my child very much but sometimes hate the disease.

My friend Vanessa has PWS and she recently stated “Today we fight. Tomorrow we fight. The day after, we fight. And if this disease plans on whipping us, it better bring a lunch, ’cause it’s gonna have a long day doing it!”

Join the fight against the monster that tries to steal away our children. Join The fight against PWS.