West syndrome is a rare type of epilepsy that affects babies, usually between 4 and 8 months of age. It is named after the doctor who first discovered it and is also known by various other names, such as infantile spasms (IS) and epileptic spasms.
The primary symptom of West syndrome is seizures that occur in clusters. These seizures are brief, lasting only a few seconds, but can happen up to 150 times in a single cluster. Some babies may experience as many as 60 clusters a day. Other symptoms may include:
Crankiness
Loss of appetite
Changes in sleep patterns
Acting as if they cannot see
Slowed development or regression
West syndrome is a rare condition, affecting fewer than 6 out of every 10,000 babies. Slightly more than half of the affected infants are boys. Possible causes and risk factors include:
Genetic changes
Metabolic disorders
Unusual brain development or formation
Brain injury due to lack of oxygen or other causes
Brain infections
If your child's doctor suspects West syndrome, they will ask for detailed information about your baby's seizures. Recording a video of the seizures can help the doctor differentiate between West syndrome and other conditions, such as colic. An electroencephalogram (EEG) is essential for diagnosing West syndrome, as it records the patterns of electrical activity in the brain. Other tests may include MRI or CT scans, as well as urine, blood, or cerebrospinal fluid (CSF) tests to help determine the underlying cause.
Treatment for West syndrome aims to control seizures and may include:
The most common medications used to treat West syndrome are ACTH (a hormone), vigabatrin (Sabril), steroids like prednisone, and vitamin B6 (if a deficiency is the cause). These medications can have side effects, so it is important to work closely with your child's doctor to balance the benefits and risks.
A ketogenic diet, which is high in fats and low in carbohydrates, may be recommended by your baby's doctor. This diet should only be implemented under the guidance of a nutrition specialist and may require hospitalization to initiate the process.
In some cases, surgery may be necessary if brain scans show lesions or if the cause of West syndrome is a condition like tuberous sclerosis complex. Surgical options include corpus callosotomy (split-brain surgery) and resection of the affected brain areas.
The long-term outlook for children with West syndrome depends on the underlying cause and their development before the onset of the condition. While some children may have normal mental abilities or only mild disabilities, others may experience severe mental disabilities, autism, or hyperactivity. Seeking prompt treatment and achieving quick seizure control can improve the chances of a more favorable outcome.
Parents of children with West syndrome can find support and information through online forums like the Infantile Spasms Project, run by the David Geffen School of Medicine at the University of California, Los Angeles.
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