Prader Willi Syndrome is a rare genetic disorder that is known for the individuals inability to feel satiety. In other words, a person with PWS is in a constant state of hunger. However, it is much more complex than this.
Physical features include a long face with narrowing at the temples, almond shaped eyes, and small hands and feet. As infants individuals with Prader Willi Syndrome have very low muscle tone, reflexes are slow to develop, and most cases these babies show no interest in feeding and have to be fed through either an NG or G-tube. As infants they sleep A LOT, have a very weak cry and are slow to reach milestones (but they DO reach them!).
As the child grows so does their interest in food. "Phase Two" is when the more well known characteristics of the disability start to show. A slower than average metabolism combined with the constant feeling of hunger makes food a danger for these individuals. Children with Prader Willi are on a very strict diet that consists of about 70% of an average child's caloric intake. Many families are force to lock the refrigerator and the cupboards in order to keep the child with PWS from accessing food and struggle daily with extreme food seeking behaviors. High levels of anxiety lead to behavioral problems such as stubbornness, skin picking, repetitiveness, and tantrums. IQ's range from 40 to 105 with the average being around 70 (100 is considered a "normal" IQ) but even those who are "high functioning" will experience some sort of learning disability. Several other health problems often accompany this diagnosis as well such as sleep apnea and scoliosis.
WHEW! Overwhelmed yet?! I sure was! To the parent of a recently diagnosed child I will say this, THERE IS HOPE! Thanks to research and parents like you and me who fight to raise awareness for our kids, there is more being done than ever before to help them achieve healthy and happy lives!
Programs such as Early Intervention coupled with the relatively new discoveries in the advantages of Growth Hormone Treatment, are helping our kids reach their milestones closer to the "normal" time frame. Growth Hormone is also believed to help cognitive development, metabolism, and bone structure.
Researchers are working hard to find a cure but equally exciting is the progress they are making in developing an appetite suppressant that would work for our kids.
More importantly, however, is the amazing spirit these little bodies have been blessed with. Individuals with Prader Willi Syndrome are known for their sweet disposition, infectious smile and love of life! As infants they are blessed with a fighting personality that enables them to build muscle tone and learn skills despite their disability, constantly keeping their parents in awe of their ability to set their mind to a goal and achieve it.
To the new parent I say welcome. I hope this blog will be a resource to you. A place where you can get ideas, answers, and hope. Life is good my friends! Life is good...
For more information on Prader Willi Syndrome please visit http://www.pwsausa.org/.
Also, please note the information shared on this blog is not considered medical, nutritional, or therapeutic advice. This is simply what has worked for our family (or not worked so well). Please always consult a professional before making any changes to your child's treatment plan.