Main Page
Contents |
PWS Notes
PWS Notes is designed to provide useful background on Prader-Willi Syndrome (PWS) for parents and to organize medical information that may be helpful for future research directions.
This wiki was created by a PWS Mom and is particularly dedicated to the new generation of PWS children who are receiving the advantages of early interventions.
New Diagnosis? - First Steps
I know the pain and depression that comes with hearing that your perfect baby has PWS. Everyone has a different way of making it through that pain. As you figure out your way, I have several steps that I believe are critical for the health of your baby. I welcome the addition to or modification of these steps by other parents:
- Start your baby on carnitine fumarate (note that this recommendation is based soley on theory, not on scientific data)
- Bond with your baby
- Move/stimulate your baby
- Get your baby on Growth Hormone
- Contact your state Early Intervention/Birth to Three Program
- Get Organized! Start a Care Notebook for your child
- Contact Foundation for Prader-Willi Research and your state PWS Chapter
- Feed the brain (most important during first 12 months)
- Log onto online PWS Discussion Boards for support
What is a Wiki?
This site is a wiki designed to be edited by any interested member of the PWS community, including family, researchers, and others. If you see information that should be changed or added, please create an account (it's free and takes just seconds) and then click the Edit button at the top of any page. The best example of the power of wikis is the Wikipedia, the most comprehensive encyclopedia in history, which is assembled by regular people serving as writers and editors.
The PWS community has several excellent Mailing lists. However, these tend to both distract long-time participants by repeating the same info while not providing good information to new participants because of the lack of organization and poor searching. This wiki is designed as a complement to those mailing lists and other forums, such as the PWS websites. If you're writing an email about PWS that could be useful to others, please consider adding it to a page on this wiki to make the info more generally useful. Please be aware that while some mailing lists have restricted access, this wiki is open to anyone and so private information should not be shared.
Early interventions
- Overview
- Human Growth Hormone
- Paradigm shift related to metabolism
- Carnitine fumarate
- Leaky genes
- occupational therapy
- physical therapy
- Signing
- CoQ10
- Essential Fatty Acids
- Feeding
- Hippotherapy
- Hip helpers may help muscle tone
- Dr. Ross Greene's views on aggressive behavior
- Sleep and PWS
- Picking
- Bonding
- Movement
- Exercise
- Flexibility
- Whole-body vibration
- Sensory integration
- Creatine
Other health issues
- Health Care Guidelines from PWSAUSA
- Diet
- Hypoglycemia
- Breathing
- Muscles
- Bacteria in gut
- Water
- Serotonin
- TMG/Methylation
- Hunger
- Social Issues
- Holidays
- Medical Research
- Nonverbal Learning Disorder
- Stuttering
- Pet therapy
- Mild Phenotype
- Vitamins
- Education
- Low Tone
- Artificial Sweeteners
- Ginger/Digestion
- Marriage
PWS Community
- New Generation
- PWS stories, please add your story here
- Mailing lists
- PWS websites
- Books
- PWSMom, the site's creator
- Inspirational Words