The sooner your little one starts treatment for infantile spasms or West syndrome, the better, because this condition can affect how their mind and body develop. In some cases, the seizures and spasms will stop on their own, but most children will need treatment.
Treating West syndrome is a team effort. You and your child’s doctor may have to work with specialists like neurologists (doctors who treat the nervous system) and surgeons, if your baby needs an operation.
The most common treatment for West syndrome is medication. Your doctor may want to try:
- ACTH, a hormone
- Vigabatrin (Sabril), a seizure medication
- Steroids like prednisone
- Vitamin B6, if West syndrome results from a lack of vitamin B
About two-thirds of babies who take ACTH or vigabatrin have fewer or less intense seizures. It may be a day or two before these treatments work.
Medications like ACTH and steroids can have side effects, so you and your doctor will have to balance the good and the bad for your child. The side effects of these drugs include:
- Weakened immune system
- High blood pressure
- Digestive issues
- Sugar in the urine
Vigabatrin side effects include:
- Permanent change in vision
- Throwing up
If these medications don’t work, your doctor might want to try:
- Benzodiazepines like Clobazam (Onfi)
- Rufinamide (Banzel)
- Topiramate (Qudexy XR, Topamax, Topiragen, Trokendi XR)
- Valproic acid (Alti-Valproic, Depakene, Depakote, Stavzor)
- Zonisamide (Zonegran)
Your baby’s doctor may suggest a ketogenic diet -- one that’s high in fats and low in carbohydrates. It isn’t something you should try to do by yourself. The doctor will want you to work with a nutrition specialist. You’ll still be able to breastfeed, but you’ll also have to use a ketogenic formula. The doctor may want to admit your baby to the hospital to start the process.
The ketogenic diet can have side effects, like kidney stones, dehydration, and constipation. You and the doctor will have to watch your little one closely.
If brain scans show lesions on your baby’s brain, they might need surgery. Your doctor might suggest a corpus callosotomy, which is sometimes called split-brain surgery.
The corpus callosum is a band of nerve fibers deep inside the brain that connects the two halves. During this procedure, the surgeon will cut it so that seizure signals on one side of the brain can no longer travel to other side. Your baby may still have seizures, but they won’t be as intense.
This surgery can also treat a common cause of West syndrome, tuberous sclerosis complex. In this condition, cancerous tumors grow in your baby’s body, including the brain. Some people with this condition do better with a type of surgery called resection, in which the doctor removes parts of the brain that are causing seizures.