BCPWSA - British Columbia Prader Willi Syndrome Association
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Support and help for those with PWS

Speech and Language Consultant
For children born with PWS, the development of speech and language skills is often delayed and problematic. Parents may require professional help for a child with PWS to achieve his or her full potential in the use of speech and language.
PWS can impede all aspects of speech and language development, from receptive language, expressive language, articulation, fluency to voice. Try to seek help from a speech/language pathologist when the diagnosis of PWS is made as assessment and intervention are critical to the development of functional communication. Even an infant can be assisted with improving receptive and expressive language and the oral-motor skills needed early for feeding and later for speech. You may be able to locate a speech pathologist at a rehabilitation center, public school, child development center, hospital, clinic, local health department or in a private practise.

Physiotherapy Consultant
Due to the low tone associated with PWS children a physiotherapist should be contacted to assess the PWS child and suggest activities that will help him use his body better. Your local Child Development Association /Center should be able to put you in touch with a physiotherapist.

Dietitian/Nutritionist
This professional will help plan your child's meals and snacks while being aware of their needs regarding calories and balanced nutrition.

Behavior Consultant/ Mental Health Professional
Many children and young adults with PWS exhibit difficulty in regulating their emotions and behavior. The Ministry of Children and Families should be able to put you in touch with a Behavior Consultant that will give you strategies to use in the home and at school.

Ophthalmologist
Because of generalized poor muscle tone, many children with PWS, especially younger ones, may be at risk of developing strabismus (cross-eye). Glasses, patching, or surgical correction may be needed.

Dentist
Many young people with PWS are at risk of developing dental caries (cavities). Thick, sticky saliva as well as poor tooth brushing skills may contribute. It is common to see teeth grinding and rumination. Dental sealant and fluoride treatments have been helpful at decreasing cavities.

Pediatrician
It is important to find a pediatrician who will do regular check-ups with your child re: weight and height. He/She will also be aware of other problems that could arise (i.e.: scoliosis) and refer you to the proper professional(s) for assistance.

Endocrinologist
This doctor will follow the growth of your child. They may decide to do tests to see if your child is growth hormone deficient. If this is the case, growth hormone therapy may be prescribed for your child.

Certified Education Assistant
As your PWS child approaches school age they may require extra help in the classroom. A trained adult may be placed in the classroom to assist your child. (It is important to ask the resource teacher in your district about support for your child - how many hours, support offered in and out of the classroom, etc..)

Interesting Read
Rick Johnson has written a book about his family; raising two daughters with different life-threatening genetic disorders (one of them being PWS). For a full description of the book go to the publishers web site. Paperback, 170 pages, $24.95

Please note: The BCPWSA website is intended to provide information only - not to diagnose or advocate particular treatment options. The diagnosis and treatment of Prader-Willi Syndrome should be made through a qualified medical professional. Thus, it is strongly urged that patients do not change treatment without first consulting their doctor.

Inspirational Stories

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This is a letter written by a B.C. mother, Marion Platt, that shows us the proud feelings of a mother and hope as our children with PWS grow older...

Hello everyone! Our son David is now 19 years old and doing very well. Here is an update:

David now lives in his own suite under our roof. This situation works very well. He gets his own breakfast and comes to eat dinner and usually lunch with his parents upstairs. He keeps his own suite tidy, does all his own dishes, laundry, etc.

He has a faithful companion dog – Oscar the pug who sleeps on his bed. David trained him to do “fly ball” and goes to tournaments.

He graduated from high school and is now in a two year work experience program at Pearson College. He is a food prep person in a cafeteria. He loves his job and is handling his responsibilities well. Our local grocery store wants to hire him when he is finished to stock shelves.

David is very aware of his dietary needs and manages his own diet very well. He refuses to eat certain foods if he knows he will put weight on. He is an avid label reader and only chooses organic food and low fat to boot! We are extremely proud of him. He exercises three times a week on his elliptical trainer and other exercise is aqua fit and swimming once a week. He also takes a 2 mile walk once or twice a week. His weight is maintained at 178 pounds. He used to weigh 200…so he is diligent at trying to keep it off. What a daily battle for him. My heart aches that he has to be over focused on weight issues.

We have just hired a respite care worker who will be taking David on more social outings. David is passionate about fishing!

All in all David is a miracle in the battle with his PWS.

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