Physical therapy: Your child should be referred to the Child Development Team at your local hospital as soon as they are diagnosed. A physiotherapist will work on building gross motor skills and strength, and will often recommend orthotic supports for joint hypermobility. Most children receive physiotherapy in their own home by a visiting therapist, weekly or two weekly, and some regions offer centre based therapy. The appointments will be more spread out once your child is walking. Regularly awakening your child for interaction, stimulation and exercise can help make up for the motor and cognitive delays they may be experiencing.
Occupational therapy: In some regions this is done by the physical therapist, in others it is provided in a separate OT appointment. In some areas there are Visiting Neurodevelopmental Therapists (VNTs) who cover PT, OT and focus on developing play, self-care and independence. Generally, OT’s work on behavioural and sensory issues, plus fine motor skills. Sensory and vestibular input via sensory integration therapy can be helpful for developing balance and motor planning ability. Sometimes you will not get a referral if your child does not have behavioural /sensory issues and often there is a waiting list for OT services. Your paediatrician can make the referral.
Assessments / developmental paediatrician: Some regions have a developmental paediatrician available as part of your child’s team. This person is not a regular paediatrician, but is more experienced at diagnosing behavioural and sensory issues, and autism. Contact the Association if you would like more information for your region. Often, during the early years, a general paediatrician is sufficient.
Orthopaedics: Your child should be assessed by your paediatrician for orthopaedic concerns such as hip dysplasia and scoliosis (curvature of the spine). In the USA, some children are screened for scoliosis with yearly spinal x-rays. Dr. van Bosse recommends yearly x-rays from sitting unassisted to around 4 years old. This is not routinely offered in New Zealand, but your paediatrican should make the referral for an x-ray if you ask. The most common ages for scoliosis to occur is in the under 4’s and then during adolescence, but it can occur at any time.
Physical Therapy Interventions
- Choose a sugar-free, lower carbohydrate diet for your child.
- Children under 2 sometimes struggle to gain weight. In this situation, it’s important to choose healthy, high calorie foods, such as salmon or avocado. Do not increase calories by using foods which will need to be removed from their diet later on, such as sugary sauces or dressings.
- Your child needs a nutritionally balanced diet. It’s important that healthy fats (essential fatty acids), which are good for brain development, are not omitted from their diet. Some parents use dietary supplementation.
- Encourage drinking water from a young age. Your child may be reluctant because thirst awareness is often impaired in PWS. Avoid using sweet drinks, which includes diet drinks, because all sweet foods should be avoided.
- Calorific restriction is not required until around age 2 when weight typically starts to increase despite having an age appropriate diet.
- Order free copies of the Medical Alerts booklet and keep a copy in your bag and the glove box of your car. This will ensure you have the right information for emergency room and hospital doctors should you need it.
- Do you have a copy of our New Parent Pack? It includes the medical alerts booklets, along with some general information leaflets for friends and family, plus information on health, diet, growth hormone and support. Just complete a brief membership form to get your free pack and free family membership.