TREATMENTS
There is no cure for Prader-Willi Syndrome (PWS), but PWS comes with a lot of health problems that need to be treated and monitored. The treatment for Prader-Willi syndrome involves consultations with a wide range of health specialists. These include a family physician or pediatrician, endocrinologist, dentist, physical therapist, dietician, speech therapist, optician, and behavioral psychologist.
Dietary counseling is paramount. Working with a dietician to learn ways to control calorie intake is critical. Daily physical activity can help in the weight loss/control efforts. Often prescription eyeglasses are needed or surgical correction of strabismus (crossed eyes). Regular dental care to monitor for dental enamel softening, oral hygiene, and signs of teeth grinding. Those with scoliosis or kyphosis can benefit from orthopedic treatment. Working with an endocrinologist on the timing or need for growth hormone therapy to overcome hormone deficiency that can lead to permanent short stature or low muscle mass as a young child is important. PWS patients often with a psychologist on a behavior management plan to help with obsessive compulsive tendencies, mood swings, and temper tantrums. Sometimes medication is needed to help with behavior. Speech and language therapy may help with speech delays and working with an early childhood intervention program can help children reach their full potential.
WHERE TO FIND SUPPORT
There are many resources available to support the family and friends of children/adults with PWS. A few useful ones are highlighted below.
http://www.pwsausa.org (the USA Prader-Willi Syndrome Association)
http://www.fpwr.org (the Foundation for Prader-Willi Research)
http://www.amazingkids.org/Medical-Services/the-center-for-prader-willi-syndrome (an inpatient treatment program for PWS patients)
There is no cure for Prader-Willi Syndrome (PWS), but PWS comes with a lot of health problems that need to be treated and monitored. The treatment for Prader-Willi syndrome involves consultations with a wide range of health specialists. These include a family physician or pediatrician, endocrinologist, dentist, physical therapist, dietician, speech therapist, optician, and behavioral psychologist.
Dietary counseling is paramount. Working with a dietician to learn ways to control calorie intake is critical. Daily physical activity can help in the weight loss/control efforts. Often prescription eyeglasses are needed or surgical correction of strabismus (crossed eyes). Regular dental care to monitor for dental enamel softening, oral hygiene, and signs of teeth grinding. Those with scoliosis or kyphosis can benefit from orthopedic treatment. Working with an endocrinologist on the timing or need for growth hormone therapy to overcome hormone deficiency that can lead to permanent short stature or low muscle mass as a young child is important. PWS patients often with a psychologist on a behavior management plan to help with obsessive compulsive tendencies, mood swings, and temper tantrums. Sometimes medication is needed to help with behavior. Speech and language therapy may help with speech delays and working with an early childhood intervention program can help children reach their full potential.
WHERE TO FIND SUPPORT
There are many resources available to support the family and friends of children/adults with PWS. A few useful ones are highlighted below.
http://www.pwsausa.org (the USA Prader-Willi Syndrome Association)
http://www.fpwr.org (the Foundation for Prader-Willi Research)
http://www.amazingkids.org/Medical-Services/the-center-for-prader-willi-syndrome (an inpatient treatment program for PWS patients)
PHOTO GALLERY OF PABLO AND DAISY
As a personal touch, I have included a photo gallery below of my cousin Pablo Martinez and Denesse Vera's daughter Daisy Martinez. They are my inspiration for this project and I am very proud of them.
As a personal touch, I have included a photo gallery below of my cousin Pablo Martinez and Denesse Vera's daughter Daisy Martinez. They are my inspiration for this project and I am very proud of them.