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Down's Syndrome
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Parents & carers

Health Watch, Checks and When to Act

Use this as a prompt list for GP, paediatrician, school nurse, annual reviews and care plans.

6 min read

Use this as a prompt list for , paediatrician, school nurse, annual reviews and care plans.

Health AreaWhy it mattersPossible signs/questionsWho can helpSources
Heart/cardiologyCongenital heart conditions are more common. Babies and children may need cardiac checks, echocardiogram and cardiology follow-up.Breathlessness, blue colour, poor feeding, sweating, poor growth or reduced stamina should be discussed urgently.Paediatrician, cardiology, , health visitor other health conditions;DSMIG medical surveillance
Feeding and swallowingBabies may need help with feeding because of low tone, coordination, reflux or health issues.Choking, coughing with feeds, poor weight gain, long feeds or chest infections need assessment.Midwife, health visitor, paediatrician, feeding team, dietitian Down's syndrome; how to help CYP
Growth/nutritionGrowth should be monitored using appropriate charts and by considering feeding, thyroid, heart, coeliac and sleep issues.Do not dismiss poor growth or excessive weight gain as simply Down's syndrome.Paediatrician, dietitian, DSMIG medical surveillance
Hearing/glue earHearing problems and glue ear are common and can affect language, behaviour and learning.Ask for audiology if speech stalls, attention drops, behaviour changes, or the child misses instructions.Audiology, ENT, school, other health conditions;DSMIG medical surveillance
VisionSight problems are common and regular eye checks are important.Squint, sitting very close, clumsiness, headaches, losing place when reading or avoidance of table tasks may be signs.Optometrist, ophthalmology, school other health conditions;DSMIG medical surveillance
ThyroidThyroid disorders are more common and can affect energy, weight, mood, constipation, development and learning.Ask /paediatrician about routine thyroid blood tests and record dates/results., paediatrician, endocrinologyDSMIG medical surveillance; other health conditions
Sleep and obstructive sleep apnoeaSleep-disordered breathing is common and may affect behaviour, learning, mood, heart health and daytime tiredness.Snoring, pauses in breathing, restless sleep, sweating, daytime sleepiness, morning headaches or behaviour change need discussion., paediatrician, ENT, sleep clinic other health conditions;DSMIG medical surveillance
Infections and immunisationsPeople with Down's syndrome may be more vulnerable to infections and should have routine immunisations; extra advice may apply for flu/pneumococcal/covid depending on risk.Seek medical help early if breathing, fever, hydration or alertness concerns appear., paediatrician, immunisation nurse other health conditions;DSMIG immunisation
Gastrointestinal/reflux/constipationReflux, constipation and coeliac-related symptoms can affect eating, sleep, behaviour and comfort.Persistent vomiting, severe constipation, blood, pain, weight loss or swallowing problems need medical review., paediatrician, dietitian, gastroenterology other health conditions;DSMIG medical surveillance
Dental/oral healthLow tone, mouth breathing, reflux, feeding issues and sensory needs can affect oral health.Start early dental visits, desensitisation and visual supports.Dentist, community dental service, DSMIG medical surveillance
Motor skills and low toneLow muscle tone and joint laxity can affect posture, walking, stamina, handwriting and self-care.Ask for physiotherapy/ if milestones, pain, walking, stairs, fatigue or school access are concerns.Physiotherapy, , orthotics how to help CYP
Haematology/TAMBabies with Down syndrome can have transient abnormal myelopoiesis/transient leukaemia and need appropriate blood checks/follow-up where indicated.Unusual bruising, pallor, persistent infections, swollen tummy or unexplained tiredness should be checked.Neonatal team, paediatrician, haematologyDSMIG haematology;BSH transient leukaemia
Cervical spine/neck concernsSome people may have neck/spine instability or neurological signs that need urgent attention.Neck pain, change in walking, weakness, loss of skills, altered bladder/bowel control or new clumsiness require prompt medical advice., paediatrician, emergency care, orthopaedics/neurologyDSMIG medical surveillance
Mental healthAnxiety, depression, trauma, grief, bullying and sensory stress can occur and may show as withdrawal, sleep changes, refusal or behaviour change.Look for triggers, pain, communication frustration and environmental stress; ask for accessible mental health support., , learning disability team, school support for adults;Mencap Down syndrome
Adult health checksAdults with a learning disability should have regular health reviews; Down's syndrome-specific issues may include thyroid, hearing, vision, sleep, mental health and dementia screening.Create a health passport and keep a baseline of skills, mood, sleep and communication., learning disability nurse, adult social care support for adults;DSMIG medical surveillance

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