Skip to main content

Food

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.

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 :) 









Comments

Popular posts from this blog

It's the most wonderful time of the year....

This is our sixth Christmas.
Our sixth Christmas since our son was born and diagnosed with Prader Willi Syndrome.

If you had asked me back then, how I thought Christmas would be now, I would have told you that we probably would have cancelled it. When we first got the diagnosis of PWS, all we could see was food..... food everywhere, at every turn, at every event, everywhere. How were we going to protect our son, keep him safe and enjoy an event that's filled with food?

And then we started to learn about some of the other complexities of PWS, the need for routine, the challenges of change, the importance of setting expectations and we were overwhelmed.

What we didn't know was how incredible our son would be.

Today The Lodger got his Christmas holidays (break!). His last week of school consisted of a topsy-turvy week of no homework, a change in the usual school day and a nativity play in which he played the role of an angel. 
How did he handle it all?

Without a hiccup.... well he wasn&…

Jingle bells... not until December!

The festive season is upon us once again.

The Lodger was banned from talking about Christmas until December 1st and it was purely selfish on our part in saving our sanity.  What we didn't expect was that The Lodger would take this new rule to the extreme.
If we were out and about in November, we would inevitably stumble across Christmas themed decorations. I don't think many children would stand there pointing at them and shaking their heads saying "O no, take it down. It's too early. Mum close your eyes. You'll be so cross if you see it!"
When Santa's grotto appeared in the local shopping centre, he was on his way to talk to the security man to tell him to remove it. If there were fines to be handed out for premature Christmas decorations, The Lodger would have made a fortune!! 
It was like walking around with a mini Grinch. Though, in all honesty, a mini Grinch who 100% loves Christmas. 


The 1st December could not come fast enough. 
"How many days are le…

Ugh Pancake Tuesday!

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things. 
Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way. 
He then stopped and said “What is Pancake Tuesday?”
A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger. 
"Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is Pancake Tuesday?" "M…