If your child has recently been diagnosed, support and information are available to help you and your family navigate next steps.
West's syndrome is a rare form of epilepsy that affects infants, typically between 3 and 12 months of age. A diagnosis can feel overwhelming, but with the right care and the right people by your side, many families find a path forward.
West's syndrome - sometimes called infantile spasms - is a rare, serious form of epilepsy that begins in the first year of life. It is characterised by brief, repetitive muscle spasms, changes in brain activity seen on EEG and in many cases, a slowing or regression of development.
No two children experience it the same way and it can have many different underlying causes - from genetic conditions to structural differences in the brain, to causes that cannot yet be identified.
What is consistent is this: early recognition matters.
If you are seeing sudden, repetitive jerking movements in your infant - especially in clusters shortly after waking - please contact your paediatrician or emergency services without delay. Early action makes a real difference.
As a parent, trusting your instincts is important. These are the signs that warrant an urgent conversation with your doctor.
Sudden, brief jerking or stiffening movements - often of the head, arms and legs together. These typically occur in clusters of 5–10 episodes and are most common just after your baby wakes up.
You may notice your baby seems less responsive, has stopped smiling or appears to have lost skills they had recently gained. This regression is one of the defining features of West's syndrome.
Between or around spasm episodes, your baby may seem to suddenly go very still, stare blankly or appear briefly unresponsive. These moments can be easy to miss or dismiss, but are worth noting and reporting to your doctor.
West's syndrome is challenging to treat, but there are established therapies. Your child's neurologist will work with you to find the right approach.
Vigabatrin (Kigabeq®) is an antiepileptic medication specifically indicated for infantile spasms. It works by increasing the brain's natural inhibitory signals (GABA) and is particularly effective when West's syndrome is caused by tuberous sclerosis. Regular eye monitoring is required during treatment.
ACTH (hormone therapy) is another well-established option, administered by injection and often highly effective at stopping spasms. It is usually started in hospital so your child can be closely monitored.
Learn More About Kigabeq®Medication is one part of the picture. Many families find that early intervention services - physical therapy, occupational therapy and speech therapy - play a vital role in supporting their child's development alongside medical treatment.
Your care team can connect you with the right services. A multidisciplinary approach, with neurologists, developmental specialists and therapists working together, gives children the broadest possible support.
Patient associations and support groups are available for families of children living with West's syndrome. These organisations provide information and may offer opportunities to connect with others who have experience of the condition.
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Your neurologist and paediatrician are your most important allies. Don't hesitate to ask questions - no question is too small and understanding your child's condition helps you feel more in control.
A brief note of when spasms occur, how long they last and what they look like helps your doctor track progress and adjust treatment. A short video can also be invaluable at appointments.
Parents who have been through this understand in ways others cannot. Support groups - online or in person - can offer comfort, practical advice and the reassurance that others have found a way through.
You cannot pour from an empty cup. Seeking help, whether from family, counselling or respite care, is not a sign of weakness - it is how you stay strong for your child.
Whether you are a parent looking for answers or a clinician seeking information, our team is ready to support you.