Support

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 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, child development center, public school, hospital, clinic, local health department or in private practice.

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 to use his body better. Your local child development association should be able to put you in touch with a physiotherapist.

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

Many children and young adults exhibit difficulty in regulating their emotions and behaviours. The Ministry of children and Families should be able to put you in contact with a behavior Consultant that will give you strategies to use in the home and school.

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

Many young people with PWS are at risk for developing dental caries (cavities). Thick, sticky saliva, as well as poor tooth-brushing skills may contribute. It is common to see tooth grinding and rumination. Dental sealant and fluoride treatments have been helpful at decreasing cavities. There are several over-the counter products (tooth pastes, rinses, sprays) available that treat conditions of dry mouth.

It is important to find a pediatrician who will do regular check-ups with your child re: weight and height. The pediatrician may also be aware of other conditions that would arise (ie: scoliosis, gastroparesis, etc.) and refer you to the proper professional(s), specialist(s) for assistance.

This doctor will follow the growth of your child. It may be decided to do tests to see if your child is growth hormone deficient. Growth hormone therapy may be prescribed for your child. This specialist will also monitor pubescent hormonal needs and prescribe medications to support as necessary.

Some children with PWS develop scoliosis (curvature of the spine). Referral to a spinal specialist may come from a GP or pediatrician. There are a variety of treatments that can improve quality of life.

As your child approaches school age, she 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 at your school about support for your child – how many hours, support offered in and out of the classroom, etc.