Beyond the Diet - for the dietician

by Janalee Heineman (PWSA USA)

It is important for a dietician to know exactly what is going on for families and people with PWS. Many dieticians put the child on a regular diet of 1,500 calories and then think that the parents are not being honest when their child continues to gain weight. It is not unusual to have to put a child or an adult with PWS on as low as 800 calories a day.

"We have a heart, soul, mind and spirit and need you to understand us. Understanding and caring are two of the most important things you can do for us...I could feel sharp teeth tearing at my stomach like piranhas and still do. I know I need someone to keep the cupboards locked and I need someone to keep me active and to control my weight. I want to have some fun in my life.... If the government has money to fund crisis situations why can they not prevent situations from becoming a crisis? I need full support NOW before I get into a crisis situation. I want to live and I am sure you want the same for your child."

This is from a young man with PWS who died shortly after this was written.

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