Accredited Practising Dietitian offering on-line nutrition consults for people with Prader-Willi synd
20/05/2025
Another guest post from the Exercise Physiologists at
Exercise can make a huge difference for adults with PWS — boosting strength, mental health, and overall quality of life.
What are some ways your loved one enjoys keeping fit?! 👣✨🧡
17/05/2025
Prader-Willi Syndrome Awareness Month! 🧡
Guest post by Brooke, Exercise Physiologist from
Kids with PWS can really benefit from fun, active movement — like swimming, walking, dancing, or riding a bike! 🚴♀️🏊♂️🕺 Not only does it help with muscle strength and coordination, but it can also boost mood and overall health.
Just make sure to check in with a physio or exercise physiologist to keep things safe and suited to your child’s needs. 💪😊
👉 share this post to raise awareness, and let me know in the comments what your loved one’s favourite way of keeping active is!
16/05/2025
People with Prader-Willi Syndrome are so much more than a diagnosis 🧡
They’re kind, funny, curious, affectionate, determined, and SO capable. This PWS Awareness Month, let’s celebrate the amazing strengths, talents, and personalities that make the PWS community shine ✨
The more we understand, the more inclusive and supportive we become 🧡
👉 Tag someone who needs to see this and share one word you’d use to describe someone with PWS in the comments!
15/05/2025
8 years ago I learnt this little girl had Prader-Willi syndrome. At the time I was pretty sure I knew what PWS was but I still had to google it to make sure I was right! Even though I was working as a dietitian at the time, the only other occasion that I’d heard those words was when I was at uni. I remember the video my lecturer played us - think a very dated, worst possible scenario kind of video and that was it. Filed to the back of my memory and not given much further thought, until this day, 8 years ago. Since then, what started out as learning as much as I could so that I could answer any of my family’s questions slowly grew into seeing my first client in 2020. And now? Several hundred individuals, all over the world from 0-40 years of age! And some I’ve been seeing since the very beginning 😍
Anyway, not really sure what the point of this post was!! But thank you for all the referrals - when most of your clients come from word- of- mouth you assume you’re doing something right 🧡 happy PWS awareness month. xC
14/05/2025
Hypotonia, or low muscle tone, can significantly affect feeding in children with Prader-Willi syndrome in infancy and early childhood.
These challenges include:
1. Oral-Motor Difficulties
🧡Weakness in facial and oral muscles can impair sucking, chewing, and swallowing.
🧡This often leads to poor latch and inefficient sucking in infants, making breastfeeding or bottle-feeding challenging.
🧡In older children, difficulty chewing and moving food around in the mouth can result in prolonged feeding times and potential for choking.
2. Poor Coordination
🧡Hypotonia affects the coordination of suck-swallow-breathe patterns, especially in infants. This can lead to aspiration (food or liquid entering the airway) and feeding fatigue.
🧡Children may tire quickly during meals and not consume enough calories or fluids.
3. Delayed Feeding Milestones
🧡Children with hypotonia often experience delayed introduction of solids, prolonged use of purees, or delays in self-feeding skills due to poor motor control.
4. Gastrointestinal Issues
🧡Hypotonia in the muscles of the GI tract can lead to gastroesophageal reflux (GERD) or constipation, further complicating feeding and digestion.
5. Behavioral Feeding Challenges
🧡Because feeding is effortful, some children develop food aversions or negative associations with eating.
🧡Mealtimes may become stressful for both the child and caregivers.
If you need help feeding your baby or child seek the help of a knowledgeable Speech Therapist and/or Lactation Consultant as well as discussing feeding goals with all of your child’s therapists including Dietitian, OT and PT.
And I highly recommend and her Adapted Baby Led weaning approach which focuses on feeding babies with hypotonia and other feeding challenges, check her out for practical feeding advice🧡
13/05/2025
PWS awareness day 13 🧡
Did you know low muscle tone (hypotonia) can impact more than just movement?
For people with Prader-Willi Syndrome (PWS), it can affect everything from speech and motor development to digestion and early feeding.
12/05/2025
Low muscle tone, or hypotonia, is one of the hallmark features of Prader-Willi syndrome (PWS), particularly noticeable in infancy.
Low muscle tone in Prader-Willi syndrome refers to reduced muscle firmness, which is present from birth. Infants with PWS often appear “floppy,” have poor head and neck control, and may struggle with feeding due to weak sucking muscles. This hypotonia typically improves over time but remains a lifelong issue, contributing to delayed motor development, poor posture, and reduced physical activity, which can worsen obesity risk in later life.
11/05/2025
Despite PWS being known as a syndrome where individuals are often obsessed with food, want to eat constantly and never feel full, this aspect starts much later in childhood.
At birth, infants with PWS are often too sleepy to feed, don’t wake during the night and often don’t show any signs of hunger. Then around 9m of age babies start to feed and grow along a standard growth curve in a typical pattern and this can occur for the next year or more. This aspect can make it difficult for extended family, friends or the wider community to fully understand the challenges around food that are expected in the future.
So despite typical growth and feeding patterns in the first year or two (or more) of life, parents need to be strict with their child’s diet and eating habits right from the beginning so that learnt behaviours are managed.
If you care for a child with PWS, please know parents aren’t “starving” their child. The child’s portions of food might be smaller than other children’s and the child themselves might look to be in a healthy weight range but rather the individual’s needs are closely monitored and assessed by health professionals in order to manage the very complex nutrition and metabolic changes that occur due to PWS alongside this very important stage of growth and development.
10/05/2025
Day 10 of PWS awareness month. Let’s shine a light on one of the most challenging aspects of PWS — food-related behaviours.
Individuals with PWS often experience an insatiable hunger that can lead to behaviours like food seeking, stealing, or even consuming unsafe items. These behaviours aren’t choices — they stem from a complex genetic condition that affects hunger regulation.
By increasing awareness and understanding, we can foster more compassionate, informed, and supportive communities for those living with PWS and their families.
Spread the word. Show your support.
09/05/2025
Want to incorporate more Mediterranean style meals into your week? This one will definitely be a favourite 🤩
Packed full of nutrients and low carb, it ticks all the boxes for PWS friendly ✅
📣save this post and share with family and friends
‼️looking for more PWS friendly recipes? Check out my family meal plans available via the link in my bio.
08/05/2025
So what are some of my top food picks when following a Mediterranean diet for PWS?
✳️Salmon - rich in omega-3 fatty acids, a source of iron and a favourite protein source in the Mediterranean. Include fish/seafood 2+ times per week
✳️Nuts and Seeds - another food rich in healthy fats, high in fibre and plant proteins. Perfect low carb snacks and which boost healthy fat and protein intake
✳️legumes - use fresh or canned varieties, these foods are an excellent alternative to meat, a good source of iron and fibre plus super cheap, making your meals go further!
✳️Olive oil - extra virgin always. Rich in antioxidants, anti-inflammatory compounds and other plant chemicals beneficial to your health.
✳️Avocado - packed full of vitamins and nutrients and healthy fats important for brain health. A first food for my bubbas and one I recommend in PWS
and lastly, but certainly not least;
✳️fresh veggies - really do I need to say more?!
Do you follow a Med diet style, and what are some of your go to foods?
07/05/2025
Day 7 of PWS Awareness Month
Let’s shine a light on supportive nutrition strategies for individuals living with PWS.
While there’s no one-size-fits-all diet, the Mediterranean diet offers a fantastic foundation — packed with fresh veggies, whole grains, lean proteins like fish and legumes, and healthy fats. This balanced and nutrient-rich approach can help support health and wellbeing in those with PWS.
Top tip: Choose foods your grandmother would recognize, and be mindful of portion sizes.
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I started this then side hustle back in 2018 as a means to work in an area of nutrition and dietetics that I was truely passionate about. Fast forward to 2020 and it’s where I’m concentrating my full attention.
After having my babies, my interest shifted to wanting to help women eat well during pregnancy and beyond and I wanted to help parents navigate the sometimes daunting moments of feeding their kids. Being a parent is hard enough, but being a mis-informed one is down right scary. I was shocked at the lack of accurate advice I received as a new mum on how to introduce foods to my baby so I started offering group workshops on how to successfully start their babies on solids and hopefully set their children up to having a positive relationship towards food that will stay with them well into their adult years.
My other passion lies in the area of Prader-Willi syndrome. In 2017, my family was rocked when my 3 week old niece was diagnosed with PWS. This diagnosis undoubtedly changed the trajectory of my families personal lives but it also changed the trajectory of my professional one too. PWS is a complex, multi-factorial genetic condition where children develop an insatiable appetite that never goes away. You and I could never even dream what this must feel like where food controls every. single. aspect. of your life, never feeling full and constantly wondering when, where and if your next meal will arrive. The anxiety these kids face from that fact alone is debilitating enough. So since 2017 I have focused my attention to PWS and how to manage the nutritional complexities in order to not only help my niece but all families who love someone with this condition.
My number one aim is to equip parents with the knowledge and tools needed to help them and their children develop a positive relationship towards food so families can thrive with good health and nutrition.