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Is anyone dealing with Prader - Willi syndrome? It is suspected that one of our children has it and has family members that does. We have to wait a couple of months to see a developmental pediatrician in order to get the okay for genetic testing. In the meantime, I'm trying to gather information and figure out how to be proactive in terms of care. Any good resources out there? Any foster parents living with this?
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Here is a good resource:
[url=http://www.prader-willi.org/]Prader-Willi Alliance of New York[/url]
I'm not sure where you are located, but there are some other good information networks out there. Let me know if you need help finding them.
Chelle
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I recently met a woman whose 17 year old bio son has Prader-Willi syndrome. She uses Franciscan Children's Hospital in Boston where she also attends a support group.
I searched on yahoo and there are several support groups. The largest one is:
[url=http://health.groups.yahoo.com/group/Prader-Willi/]Prader-Willi : This is a list for family and friends of people with Prader-Willi Syndrome. This list is to discuss the good and the bad of Pra[/url]
Take care
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