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’s a separate appointment with an OT. 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.
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 at this age, 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, children are screened for scoliosis with yearly x-rays. This is not routinely offered in New Zealand, but your paediatrican will make the referral for an x-ray if you ask. Many families are opting for x-rays every two years if there are no concerns. The most common ages for scoliosis to occur is in the under 2’s and during the teenage years, but it can occur at any time.
- 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.
- Start as you mean to go on. Set up rules and routines around food, such as only eating at the table, set meal times, and decide as a family how you will manage out of the ordinary events such as birthday parties. Consistency is key.
- Develop a small set of meals and snacks on rotation and become familiar with what the correct portion size looks like for your child. Use the same plates or weigh if needed.
- Make sure your child understands that food will only be available at meal times. This may require locking cupboards and fridges. (Use the ‘Food Security’ method.)
- Weighing your child six monthly is good practice, more often if your child is overweight. This can be done by the paediatrician, dietitian or GP.
- Regularly review how things are going – it’s easier to make small changes earlier on than larger ones later!
Please refer to our Behaviour page for detailed behaviour management information and resources. In addition to following the principles of ‘Food Security’ and using positive behaviour management, our advice is to remember the 4C’s – a strategy that can easily be shared with and learned by family members, carers and friends:
BE CALM, CONSISTENT AND CLEAR – AND AVOID CONFRONTATION
The specialist advice service, Explore, offers one to one behaviour support to families for help with specific issues. Contact your local NASC for a referral. Early years parenting programmes are well worth doing and you should be able to get a referral from your paediatrician or early intervention teacher. Triple P programmes, such as ‘Stepping Stones’ for families who have a young child with an intellectual disability, may be available through Explore or other providers. The Incredible Years programme is offered by the Ministry of Education and other providers.
The early years can be a difficult time for families as they adjust to their child’s diagnosis and start to build a team around them for support. It is important your wider whanau are on board with the choices you are making with diet and behaviour management for your child. Please refer whanau to our Grandparents, Family and Friends page.
The PWS Association provides opportunities for families to meet others via our young families weekends, family camps and regional events. We can also put families in direct contact with others who have a child around the same age or have similar experiences. Furthermore, we host a private Facebook group where families can post questions and support each other.
All children with PWS qualify for the child disability allowance, and most families also receive carer support hours. Usually, this is money paid to an informal carer of your choice so you can take a break. Your paediatrician should refer you to your local NASC (Needs Assessment and Service Coordination) who will carry out an assessment to see if you qualify. You may find the Guide for Carers a helpful resource, plus the Care Matters workshops and website. For an extensive list of disability and carer support services, please view our NZ Links and Resources page.
- 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.