management, PWS, children, life, help, support, weight, strategies, behaviour
Support » Managing the syndrome
While your child is young, there is much you can put in place that will make later management much easier. It is important to set some boundaries (for your child, and for yourselves) that will stand you in good stead as your child grows up. There are many excellent papers, pamphlets, textbooks written on the management of PWS. But that's all they are - textbooks. The management of your son or daughter is what you make of it. If you decide that you want the very best for your child, then you will become that child's chief advocate throughout life.
It's not easy, but there is help, support, advocacy, and good advice. And of course, plenty of written text! Here is a little more...
Two of the most outstanding characteristics of PWS are insatiable appetite and challenging behaviour. It doesn't happen all the time, and it doesn't have to be 24 hours a day, but it will happen.
The most important thing as a parent, member of the family, caregiver, or teacher, that you have to bear in mind is that much of this is caused because there is a tiny deletion in one of the chromosomes (15th) and not because the child is going out of his/her way to make your life a misery. Often, they cannot help it.
Often, life for them becomes a misery of its own - governed by what "everyone else is allowed to do, or eat". Every single day, three times or more, there will be meals provided.
Try to imagine what it would be like if your life revolved around this need to eat. Your major anxiety will be focussed on whether the next meal really is coming, and when, and what it is.
What if someone forgets me? What if midday comes and goes and no one gets me lunch? What if my parents/caregivers decide to go out and forget my tea? Who will feed me? If I have to go out visiting, will the people have food there, and will I be allowed it? If no one makes my dinner, where will I find some money to buy food with? Why can't I have what everyone else has? Why can't I eat at McDonalds? Why can't I have chocolate cake and fizzy drinks for afternoon tea? Why? Why? Why?
And so it goes on. All their lives.
How do you cope with this? First, by recognising the syndrome-driven needs. Second by trying to be one step ahead. Third, by intervening early enough to make it a way of life. Fourth, by educating everyone else around!
The craving for food is complicated by the fact that people with PWS have poor muscle tone so that exercising is often difficult, and so the weight goes on. People with PWS really need to eat only 75% of what their peers would eat.
There is a simple balanced equation that works, no matter what...
Energy input (what you eat) equals Energy output (exercise)
In other words, eating good low-fat meals and balancing this with the right amount of exercise should ensure that the person's weight remains stable.