Healthy eating in PWS 2 – 5 years

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Healthy eating in PWS 2 – 5 years

Jan 25, 2024

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Introduction

We all love eating! Often food is an important part of family and community celebrations. This is a wonderful part of life but supporting appropriate food consumption to enable a healthy and active life can be extremely challenging for families and individuals living with Prader-Willi syndrome (PWS).

Parents often ask when the signs of an excessive appetite will begin to show. This varies considerably between children. No-one knows why. Some may already be showing a lot of interest in food by the time they are one to two years old, others may not display this until after starting school. A small number may never develop food seeking behaviours, although the food cravings are most likely always present.

The way in which it manifests also differs between individuals – some simply like talking about food or playing with toy kitchens or eating everything on their plate; others will seek food at every opportunity. It is also not unusual for children with PWS to show food preferences, i.e., refusing to eat certain types of food.

Establishing a dietary management regimen ahead of the onset of excessive appetite will help both you and your child to control weight gain and to concentrate on enjoying family life. Setting routine habits around the management of food from a young age normalises the support needed for a child with PWS.

Remember!

Deciding on a long-term dietary strategy for your child is vital to keep them happy and healthy. Preparation is key and informing others of your plans is also crucial. Supporting your child’s health is about both nutrition and consistent eating practices. Setting good habits helps to reduce food-related anxiety.

Counting calories?

Parents and carers often ask, ‘Should we count calories?’

If your child is maintaining a healthy weight on their current diet, then there is probably no need, but if they are gaining weight, you should seek the advice of a paediatric dietitian experienced in PWS who can give you more detailed information and support tailored to your child’s needs.

Please note! The information in this article does not replace guidance from a health professional. You should seek advice, preferably from a professional with an understanding of the specifics of PWS.

Maintaining a healthy weight and monitoring growth

Because parents and carers of younger children do all the cooking, it is easier to control what they eat. Your paediatric clinic should be able to advise you on nutrition and arrange regular weighing to ensure your child is growing at the appropriate rate. You may also find the resources listed at the end of this leaflet helpful.

Monitoring growth patterns to check any child is gaining weight and height at an appropriate rate is done with the use of growth charts. It is a good idea to ask your health professional to explain what to look for on these charts and how to understand them. Interpreting them in the context of PWS can be difficult as these charts are based on information from non-PWS children. Growth charts specific to PWS do exist in other countries, most recently the USA. Currently there are none that are based on Australian data. PWS specific charts may be useful in conjunction with standard charts, and you can find a copy of the USA resource online.

Making sure your child gets a balanced diet

Over-restricting food and, in particular, fats, can occur and you should take care to prevent this. The best way to check that you have the right balance of foods is to meet with a children’s dietitian, preferably one with experience in PWS.

If you do not already have a dietitian, you can ask your paediatrician to refer you to one.

Meal Planning

How you plan meals depends very much on your personal situation, as well as the needs of other members of your family. Generally speaking, for those at this age, this should not be too much of a problem as most young children are happy to have whatever is set in front of them. Some families have found that not offering 2nd serves helps in developing appropriate future expectations for their child.

How many meals a day?

If you do not exceed the overall amount of food your child needs in a day, it does not really matter whether this includes in-between meal snacks or is limited to three meals a day. If you have other children to consider, it is probably best to keep to the regime your family are already familiar with.

Children living with PWS often like a routine about their mealtimes and can be upset if this is not adhered to. On the other hand, it can be useful to train your child not to expect too regular mealtimes. There are always the occasions when this just cannot happen for reasons beyond your control.

Snacks and treats

Ideas for in-between meals snacks and treats for young children.

  • Icy poles – make your own using diet squash or fruit juice diluted with water.
  • Yoghurt icy poles – keep sticks and make a small slit in lid of a small tub of low-fat yoghurt. Put the lolly stick into the slit and freeze the yoghurt in the pot.
  • Rice biscuits – for a special sweet treat, take a plain rice cake and lightly coat with a small teaspoon of honey.
  • Small servings of fruit, celery or carrot sticks can also be popular snacks.

Don’t forget to adjust the rest of the day’s food intake accordingly.

There’s a group for families to exchange ideas  PWS Recipe Exchange | Facebook

Educating family members

As you learn about PWS, share your knowledge with family members and friends. It’s important that those around you and your child understand the principles and strategy you are trying to establish regarding diet, and why it is important that everyone respects the habits you are putting in place.

Family members often mean well and can sometimes be easily offended. However, this can be avoided by involving and informing them of the situation, and perhaps showing them some articles for family members, such as ‘Information for brothers and sisters’ or ‘Information for grandparents.’

A particularly difficult concept for others to understand is that your child may show no obvious outward signs of having PWS. As such, the tendency can be that families and friends don’t appreciate that care is still required to keep strict control over your child’s diet and their expectation around food.

People commonly show their love through food. Treating children and spoiling them is an important role for family and friends. Encourage them to show their love in other ways by giving non-food treats such small age-appropriate gifts of toys or books can be a good substitute for feed treats.

Nursery or pre-school

Make sure that your child’s nursery or school knows all about PWS, and the necessity of keeping food out of sight.

With healthy eating on many agendas, it should not be too difficult to convince them about the need for a child living with PWS to watch what they eat. It is unlikely that your child will be the only one on a special diet – there may be others with allergies, diabetes, food intolerance etc. Some schools and nurseries provide a special area for such children to sit together so they can be more easily supported.

Some schools and nurseries allow children to bring in cakes on their birthdays. If this happens at your school, plan with the school beforehand about how you want to handle this. Many parents find it useful to receive advance warning, so that the child can either be given less dessert or supper (or a lower calorie meal) at home that day, or so that they can bring their serving of cake home to eat later. See the PWSA article ‘Information for child-minding, preschool, and day care staff.’

Birthdays and parties

Birthdays and parties are important to all children, and children living with PWS are no different. If you are the host, then it is easier to provide healthy, lower calorie options.

If your child is going to someone else’s party, make sure the host knows in advance about your child’s dietary requirements and ask the host to plan some low-calorie options, or take a plate of low-calorie options for your child to share with others.

Additional resources

‘Need to know Nutrition for Children living with PWS, A Guide for Parents and Carers’: Booklet by University of Queensland and Mater Hospital, free from https://docs.wixstatic.com/ugd/a71d4c_9055a2900becfefe090122a066742f68.pdf

PWSA USA also has information about dietary management. See www.pwsausa.org.

Thank you …

Thanks to Georgina Loughnan, Metabolism & Obesity Services & Prader-Willi Syndrome Clinic, Royal Prince Alfred Hospital, Sydney for contributing, editing, and proofreading, PWSA UK and Chris Smith, Senior Paediatric Dietitian, Royal Alexandra Hospital, Brighton, for the original source material.

 

Get in touch

We welcome enquiries about anything related to PWS. This could be about the changes through the life stage of living with PWS, individual needs, services, getting help or interacting with the NDIS, the Quality and Safeguards Commission or the AAT.

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