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by Linda Thornton One of the most difficult things to deal with when living with or working with Prader-Willi Syndrome is keeping a balance between understanding the person and understanding the behaviour caused by the syndrome. There is a huge responsibility on parents to be able to supply the information needed while making sure our child is a person first, and recognised in their own right.
Sourced from Tautoko Services Ltd One of the best things we can do to try to understand what is happening when faced with 'challenging' behaviour, is to put ourselves in the shoes of the person and try to understand what is driving them to act out this way. This is probably the easiest thing to say, and the hardest to do, particularly if you are a parent and faced with some really outrageous behaviour that needs dealing with right away.
by Barbara Whitman, PhD, Prof. of Paed. St Louis University School of Medicine Often, one of the first questions of parents who have learned that their child has PWS is, "What medications may s/he need?" This simple question requires a very complex answer. As with many genetic syndromes, there is no "cure" for PWS. Medications and other medical interventions are employed to correct specific impacts of the disorder, or for "symptom management" of aspects of the disorder. For example, heart surgery may completely correct a heart defect in a child with Down Syndrome but does not change the character of the syndrome itself.
by Dr Tony Goldstone and Prof. Dick Swaab, Netherlands Institute for Brain Research, Amsterdam. It is thought that the problem in PWS is abnormal development of a part of the brain called the hypothalamus. The hypothalamus has been known for a long time to control appetite, as well as many other processes that are usually affected in PWS, such as growth and sexual development. However the hypothalamus is a very complex structure and contains many different brain chemicals, many of which may effect appetite.
Sometimes you think the whole world is against you, just like a child you have your own questions. This rather perceptive article was found on the back of a cereal packet. Perhaps it will be helpful.
What do we tell siblings about PWS? When is the best time to tell them about their brother or sister who has special needs?
What grandparents need to know - how to help their families. Grandparents need information that will help them understand what special needs their grandchild may have and how best to support their own son or daughter in caring for this child