West Syndrome: Causes, Symptoms, and Treatment
Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 2, 2026.
What kind of doctor treats West Syndrome?
A pediatrician is often the first to suspect West syndrome. Babies are then referred to a pediatric neurologist, who orders the EEG and MRI and leads the treatment plan. A direct primary care or concierge doctor can be a first stop for an evaluation and can refer you to a specialist when needed.
What it is
West syndrome is a rare form of epilepsy, a brain problem that causes repeated seizures. It usually starts in babies during the first year of life and is also called infantile spasms, because the seizures look like sudden jerking or bending movements.
Symptoms
The main sign is a cluster of spasms. A baby may suddenly bend forward at the waist, throw the arms out, or draw the knees up. Each spasm lasts only a second or two, but they often come in groups of several in a row, often when a baby is waking up or falling asleep. After the spasms begin, a baby may seem less alert or lose skills they had already learned, such as sitting or babbling.
Causes and who gets it
West syndrome affects about 1 in every 2,000 to 4,000 babies, usually starting between 3 and 12 months of age. Causes include brain injuries around birth, genetic conditions such as Down syndrome or tuberous sclerosis, brain malformations, and metabolic problems. In many cases, no specific cause is found.
How doctors diagnose it
Doctors start with a description of the spasms, often from a home video. The key test is an EEG, which usually shows a distinctive pattern called hypsarrhythmia. An MRI scan and genetic tests may look for the underlying cause.
Treatment
The main treatments are hormonal therapy (ACTH or steroid medicines) or a seizure medicine called vigabatrin. Early treatment gives the best chance of protecting development, and regular follow-up checks how well therapy is working.
When to see a doctor
Contact a doctor right away if your baby has repeated jerking or bending movements, especially in clusters around sleep, or if your baby stops smiling, seems less alert, or loses skills they had learned. Fast treatment improves the chances of a better outcome, so do not wait.
How a direct primary care or concierge doctor fits in
A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either can see a baby quickly when parents notice worrying movements, which matters because fast referral improves results. They do not treat West syndrome directly, so they will refer the baby to a specialist, then handle follow-up visits and coordinate care.
Common questions
Will my child outgrow West syndrome?
Many children stop having infantile spasms, especially when treatment starts early. However, some children develop other seizure types or have learning delays later.
Are the spasms painful for my baby?
The spasms themselves do not appear to cause pain. The bigger concern is the effect on brain development, which is why quick treatment matters.
Can West syndrome be prevented?
There is no known way to prevent it, because many causes are genetic or happen before birth. Good prenatal care may lower some risks.
What should I tell the doctor when I call?
Describe the movements in detail, or better yet, take a video with your phone. Note when the clusters happen, how long they last, and how many occur in a row.
Sources
- NIH Genetic and Rare Diseases Information Center - West syndrome
- Epilepsy Foundation - Infantile Spasms
Medical Disclaimer
This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.
