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Food is everywhere.

The day after we got the Lodger's diagnosis, we were walking into the hospital and all we could notice was Food!!  
Adverts for food, shops selling food, cafes, restaurants, a bus with an advert for a burger on it, people eating food... it went on and on! In the early days of learning about Prader Willi Syndrome our focus was almost entirely on trying to get our minds around hyperphagia.


Defined as: 

abnormally increased appetite for consumption of food frequently associated with injury to the hypothalamus

In other words, a preoccupation with food that if left uncontrolled can lead to life threatening obesity. 
The part in the brain that tells us we are full, is broken in people with PWS. Even after eating, someone with PWS is hungry.

As parents, we both felt enormously guilty anytime we ate something. We worried and felt very anxious about how The Lodger was going to be able to live in a world that is filled with food. We ate a fairly healthy diet but with The Lodgers diagnosis, we decided it would only be fair to him if we adopted a much healthier diet.

I can't remember the last time we had a takeaway. At the weekend, we plan the meals for the week ahead. We don't eat, other than at meal times. We try not to eat infront of The Lodger if he isn't eating. We only eat in the kitchen. We allow ourselves one treat a week. These little changes have made a huge difference in our house.

I used to be a chocoholic! ! !

When does hyperphagia start?

We've been told, anywhere from 18months onwards. Sometimes earlier, sometimes later. 

Is the Lodger aware of food?

Yes he is. Though since his arrival  his meals have been scheduled. 

Breakfast, snack, lunch, snack, dinner.

He could just be genuinely hungry when mealtime arrives. It's so hard to know.

We've learned from other families who have kids with PWS, that behaviour around food is important in the long-term, that putting in rules now will help us in the future (as habits are so hard to change).

We both  have become FOOD POLICE! 

When we were having a meal on holidays, the waiter picked up a chip to give it to The Lodger and we both dived across the table. The waiter must have thought 'overprotective, crazed parents'. It was our first incident of a stranger giving him food- I'm sure it won't be the last! 

Family and friends know not to bring food if they are visiting. 

The Lodger is never  rewarded with food. If he's sad, he's never cheered up with food. It can be hard, as it's in human nature to spoil kids with treats.

The Lodger's grandparents are getting a new kitchen fitted and are making it Lodger friendly. A locked pantry will be added so The Lodger can feel comfortable and safe in their home. It's little things like this, that can make a big difference to someone with PWS, reducing their anxiety around food and lessening the urge of  food seeking behaviours.

We've been looking into alternative birthday cake designs... 

There are many other symptoms associated with PWS. Hyperphagia is just one.
We are only 20 months in. We are still learning and there's a lot to learn.

We just hope medical advances through research will change the future for all with PWS.

This gave us a giggle on a recent trip to Dublin Zoo- edit out 'these animals' and input The Lodger. Respect our decisions as his parents to protect him from food :) 


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This is Real

This is real.
This feeling. 
This comfort.
This feeling of being surrounded by like-minded people.
A warming safety feeling.
No stress.
No panic.
No fears.
The joys of the Prader Willi family weekend.

A time when you release your child to the elements, safe in the knowledge that if anything was to happen the Prader Willi Police (PWP) are everywhere. Watching. Like undercover agents hiding in the shadows. But not actually in the shadows. 

We are a fun crew. A happy crew. A proud crew. We look out for each other with a nod and a smile. A simple nod of 'I've got this, fear not'. It's lovely to embrace these moments. The Lodger loves these weekends. If excitement wasn't sometimes such a chore it may well be exciting. A time when he can meet all his like-minded friends and enjoy the freedom although he's being watched by so many knowledgeable eyes. 

Another dad once told me; "We, the parents are the experts of this syndrome". And those words have never left me. 

As I …