Move through the age bar to see the expected medical, developmental, nutrition and behaviour issues families and care teams should watch for across the lifespan.
ImportantThis page is an awareness guide only. Always follow Adam’s doctors and treating team for medical advice.
Choose an age stage
Birth – 12 months
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Birth – 12 months
Newborn & infancy
Many babies with PWS have very low muscle tone, weak cry, sleepiness and poor suck. Feeding support and early diagnosis are key priorities.
🩺 Medical watch points
Severe hypotonia
poor suck and feeding difficulty
weak or absent cry
failure to thrive or slow weight gain
possible need for tube feeding
monitor breathing, temperature control and growth
confirm diagnosis with genetic testing
consider endocrine and paediatric specialist review.
🌱 Development & learning
Poor head control, low spontaneous movement, delayed gross motor development and delayed early communication are common. Start early intervention, physiotherapy, occupational therapy and speech/feeding therapy as early as possible.
🍎 Growth & nutrition
The early problem is usually not overeating but not feeding enough. Feeding plans may include expressed milk/formula support, special teats, tube feeding and close dietitian follow-up.
🧠 Behaviour & emotion
Infants are often calm or sleepy and may show low interest in surroundings. Focus is comfort, bonding, safe feeding and gentle stimulation.
✅ Caregiver focus
Track feeds, weight and wet nappies
ask for feeding/swallow support
organise paediatric genetics/endocrinology
start early therapy
ask doctors about sleep/breathing checks and growth hormone assessment when appropriate.
💙 Adam’s journey
Adam could not suck, was floppy, had very low crying, and needed tube feeding for about one month.
⚠️ Red flags
Poor feeding, dehydration, breathing pauses, choking/coughing during feeds, very low alertness, poor weight gain or sudden illness should be reviewed urgently.
Research basis: GeneReviews; AAP Health Supervision; ANZSPED Hormones and Me
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1 – 2 years
Toddler transition
Feeding often improves, but low muscle tone and delayed milestones usually continue. This is a key time for therapy, sleep assessment and routine building.
🩺 Medical watch points
Ongoing hypotonia
delayed sitting, crawling or walking
possible constipation, reflux, strabismus and sleep-disordered breathing
monitor growth, thyroid and endocrine issues
consider orthopaedic review if spine/hip concerns appear.
🌱 Development & learning
Motor and language delays are common. Children may need physiotherapy for strength and balance, speech therapy for communication, and OT for feeding, sensory and daily skills.
🍎 Growth & nutrition
Appetite may still be low or normal, but calorie needs can be lower than other children. Dietitian guidance helps avoid both underfeeding and early excess weight gain.
🧠 Behaviour & emotion
Frustration may increase when communication is delayed. Predictable routines and simple visual cues can help.
✅ Caregiver focus
Continue early intervention
monitor sleep and snoring
build daily movement
introduce structured meals/snacks
begin safe-food environment planning before hunger increases.
💙 Adam’s journey
Adam was still floppy, needed support for sitting, had developmental delay, and hunger issues were minor at this stage.
⚠️ Red flags
Loss of skills, persistent choking, severe constipation, new snoring/apnoea, rapid weight change or spine asymmetry need medical advice.
Research basis: GeneReviews; AAP Health Supervision; PWSA resources
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2 – 6 years
Early childhood
Weight gain risk increases even before severe hunger. Speech, learning, behaviour and sleep need regular support.
🩺 Medical watch points
Increasing weight gain risk
short stature or growth hormone deficiency
sleep apnoea or excessive daytime sleepiness
strabismus
dental issues from thick saliva
constipation
scoliosis screening
monitor adrenal/thyroid/endocrine concerns as advised.
🌱 Development & learning
Walking may occur later than typical, speech/language is often delayed, and learning pace may be slower. School readiness planning and therapy coordination are important.
🍎 Growth & nutrition
Appetite can increase after about age 4. Start portion control, food security, low-calorie nutritious meals, high-fibre foods and consistent routines before food seeking becomes severe.
🧠 Behaviour & emotion
Tantrums, anxiety, rigidity, repetitive questioning and difficulty with transitions may appear. Positive behaviour support and visual routines can reduce distress.
✅ Caregiver focus
Review dietitian plan
monitor BMI and growth
screen sleep
continue PT/OT/speech
prepare school supports
check spine regularly
create a calm food-safe home and school plan.
💙 Adam’s journey
Adam walked later than other children, went through tonsillectomy surgery, had developmental delay, moderate food-seeking issues, and severe speech delay. Growth hormone treatment started around age 2.
⚠️ Red flags
Rapid weight gain, food seeking, choking or eating unsafe items, snoring, daytime sleepiness, severe tantrums or spine curve signs need review.
Research basis: ANZSPED Hormones and Me; Nutritional Phases in PWS; GeneReviews
🎒
6 – 12 years
School years
Food seeking and hyperphagia often become more obvious. School, therapies and medical monitoring must work together.
🩺 Medical watch points
Hyperphagia and obesity risk
scoliosis risk with a common peak around 10 years and possible earlier curves under 4 years
sleep apnoea
reduced pain/vomiting response
skin picking
dental problems
risk of type 2 diabetes, high blood pressure and fatty liver if weight increases.
🌱 Development & learning
Learning difficulties are common but many children can participate well with structure, adjustments, routines and supportive teachers.
🍎 Growth & nutrition
Strict food security, planned meals, supervised food access, physical activity and consistent rules across home/school/respite are essential. Avoid using food as reward.
🧠 Behaviour & emotion
Rigidity, obsessive behaviour, anxiety, emotional outbursts and food-related distress can increase. Consistency between caregivers is very important.
✅ Caregiver focus
Create a school health and food-safety plan
monitor weight, glucose, sleep and scoliosis
encourage safe exercise
maintain therapies
keep all care team members updated through Care Team Connect.
💙 Adam’s journey
Adam started his school journey in mainstream school. School staff and teachers were educated by parents about PWS, and parents requested monitoring of food-seeking behaviour. Moderate food-seeking behaviour continued.
⚠️ Red flags
Sudden stomach swelling/pain, vomiting, breathing problems, rapid weight gain, worsening scoliosis, daytime sleepiness, diabetes symptoms or unsafe food seeking require prompt medical advice.
Research basis: PWSA-USA Scoliosis Guidelines; ANZSPED Hormones and Me; GeneReviews
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13 – 18 years
Teenage years
Teenagers need increasing independence skills while food security, mental health, puberty/endocrine care and weight management remain central.
🩺 Medical watch points
Puberty may be incomplete because hypogonadism is common
monitor diabetes, sleep apnoea, blood pressure, fatty liver, scoliosis/kyphosis, bone density, skin picking and dental health
review growth hormone and sex hormone plans with specialists.
🌱 Development & learning
Executive function, planning, money skills, internet safety and independent living skills may need explicit teaching and supervision.
🍎 Growth & nutrition
Hyperphagia usually continues. Support teens with predictable meals, safe boundaries, non-food rewards, exercise and respectful discussions about body health.
🧠 Behaviour & emotion
Anxiety, mood changes, social vulnerability, rigidity, oppositional behaviour and compulsions may increase. Mental health support and positive behaviour plans can help.
✅ Caregiver focus
Plan transition from paediatric to adult care
build NDIS/life-skills goals
monitor metabolic health
support friendships
create safe digital and community participation plans.
💙 Adam’s journey
Adam moved to a support class. Key challenges include significant hunger issues, weight management, and intellectual and physical challenges. His strengths and achievements should be celebrated alongside his ongoing care needs.
⚠️ Red flags
Depression, self-injury/skin damage, aggression, severe anxiety, runaway food seeking, diabetes symptoms, severe sleepiness or sudden abdominal symptoms need urgent support.
Research basis: GeneReviews; transition guidance for children and adolescents with PWS; RACGP adult care overview
🤝
18+ years
Adulthood
Adults with PWS need lifelong health monitoring, food security, structured living support, meaningful activity and mental health care.
🩺 Medical watch points
Ongoing obesity risk
type 2 diabetes
sleep apnoea and respiratory issues
cardiovascular risk
osteoporosis/low bone density
hypogonadism
scoliosis/kyphosis
reduced pain sensitivity
high pain threshold can mask serious illness.
🌱 Development & learning
Supported decision-making, work/day programs, community participation, relationship safety and independent living supports are important.
🍎 Growth & nutrition
Lifelong food security, portion control, weight monitoring, exercise and dietitian review remain essential. Structured supported accommodation may be needed for safety.
🧠 Behaviour & emotion
Anxiety, compulsive behaviours, mood disorder or psychosis can occur in some adults. Stable routines, skilled support workers and specialist mental health input may be needed.
✅ Caregiver focus
Maintain adult GP/endocrine/sleep/dietitian/dental/mental health care
plan housing and guardianship/support decisions
monitor bone health and metabolic health
preserve dignity and meaningful life goals.
💙 Adam’s journey
Future planning should focus on health, safety, independence, inclusion and a strong care team around Adam.
⚠️ Red flags
Rapid weight gain, diabetes symptoms, severe sleepiness, breathing issues, mental health crisis, sudden behaviour change, skin infection or unexplained pain/distress need review.
Research basis: GeneReviews; RACGP adult care overview; International PWS guidance