a funny tale

[DCJenn]

OK- most of you know that I work with people with developmental disabilities. One of the homes I have is for people with a syndrome called Prader-Willi. It's really a horrible thing- it causes insatiable hunger (described as take the hungriest you've ever been, multiply it by 10 and imagine that every day, all day for your entire life) So, we have to do things like lock up all of the food, restrict diets (they also have a very slow metabolism), etc. One more important piece of information- most of the time people with P-W are NOT retarded.



Imagine a whole bunch of really smart, highly motivated sneaky people and that's our house.



One of my guys got some money from his grandmother. He somehow cashed the check (don't quite know that part yet) and has been ordering pizzas - to be delivered to his bedroom window!! (and they've done it!)



How funny is that? I've been laughing for 24 hours. He gets points for creativity that's for sure.



oh- well-



time to go back to work



Jenn

That is funny...but it must be an awful affliction to live with! Are most of the clients overweight? Are they able to live on their own or do they have to live in a special facility? Can they eat themselves to death? I know that sounds morbid...I'm just wondering. I know how much trouble I am having right now controlling my dietary intake..but can't imagine having a disease where I was literally hungry all of the time. Are there any medical treatments available for them?



Kris
The Medical Spouse Network

[DCJenn]

Ah- a chance to share my knowledge. Kris, you've opened Pandora's box- I love to talk about the support needs of my gang.



OK here's everything you ever didn't want to know. It is a genetic disorder (15th chromosome, I think) that can come from the mother (very rarely) or the father (usually).



When the kids are born they are very 'floppy' and really don't feed well at all. This lasts until they are about 3 and then they eat all the time. Usually the parents are so happy that they don't realize there's a problem. Remember that little girl who was removed from her parents because she weighed well over 100 pounds? The P-W people are trying to help out and see if thats the problem.



Yes, they will eat themselves to death. They will eat almost anything- we had a goldfish meet a very nasty end once. We dig up the mushrooms in the yard the second they appear. Our job volunteering at the animal shelter came to a quick end for one of my guys when he starting leaking the crunchy dog food out of his clothes at theend of the day. All food is locked up and all cooking is done by staff. My staff are forbidden to eat in the home and can only drink bottled water.



In addition to the eating, the syndrome has a few other choice behaviors that go along with it. Skin-picking is usual (to the point of infection if allowed to continue), as is stealing, lying, and all other manner of defiance. This is usually in an attempt to either get food or to get money to get food.



The people with P-W don't mature sexually- at least the guys don't. They also don't form very close relationships with others.



There is no cure and nothing can be done to manage the hunger. We try to keep a healthy sense of humor and be as honest and straightforward as possible with the people we support. Human growth hormone is being used with some success to improve muscle tone and therefore increase the metabolism. Other than that? We just manage what we can manage and hope the Pizza Hut has learned their lesson!



Jenn

You have a fascinating career...I'd love to talk with you about this more once I get settled in my *new* house



Kris
The Medical Spouse Network