What Comes Next

Diagnosing and treating
infantile spasms (IS)

How the specialist will make the diagnosis of infantile spasms

The diagnosis of infantile spasms requires 3 things:

Here’s what you can expect

The specialist will observe the spasms, either as they are happening or on the video you have taken.

Then you’ll be asked questions about the medical history of your baby’s development. You’ll be asked questions

  • To determine if there’s any history of brain injury
  • To understand what happens before, during, or after the spasms

Next, your baby will be given an EEG. The EEG will record patterns in your baby’s brain waves. The specialist will look at these patterns to see if there are any that are specific to infantile spasms.

A diagnosis can then be made and, if it is infantile spasms, treatment will be prescribed.

Observe

Take a
medical
history

Perform
an EEG

Make a
diagnosis

Treat

Start treatment as soon as possible

The treatment physician (epileptologist or neurologist) will determine which medicine(s) to start for your baby if the diagnosis of infantile spasms is confirmed. Your care team will help you navigate insurance, consent forms, and other paperwork and approvals necessary to start treatment.

Another EEG in 2 weeks

After 2 weeks, typically another EEG will confirm if the spasms have stopped in your child’s brain. If spasms are still happening, the neurologist may try another medicine or non-medicine treatment.

During these 2 weeks or afterwards, tests will be performed to gather more information to help in caring for your infant (for example, MRI, metabolic testing, and genetic testing).

Administering the medicine to your baby

Depending on which medicine(s) is selected for your baby, it will be given orally or as an injection.

The goal of treatment
is to completely stop the spasms.

Possible side effects

Remember, all medicines have potential side effects, which the treating physician should make you aware of and monitor with you.

You should look for the early signs of side effects, such as changes in behavior or mood, and inform doctors immediately.

The specialist will determine when to discontinue any of the treatments given.

EEG=electroencephalogram; MRI=magnetic resonance imaging.

Just as every child with infantile spasms is different, outcomes will vary

Some children might experience developmental delays or cognitive issues, while others might progress without significant problems.

  • Many infants have some level of intellectual disabilities later in life, but how mild or severe will depend on different things:
    • Early diagnosis and treatment can reduce the level of disability
    • Those who were developing normally before the spasms may be only mildly impaired, and some will have normal mental function
    • If there was previous brain injury or a brain disorder, the child will have a higher chance of severe developmental delay
  • Some will develop autism
  • Life-long monitoring will be needed, because even if the infantile spasms stop, most children will develop other kinds of epilepsy later

Outcomes from treatment will depend on how quickly treatment was started after spasms began, the cause of infantile spasms (there are many, and the tests after diagnosis will provide information about the cause), and the infant’s response to the treatment. Again, every case is different, and outcomes will vary.

Stopping the spasms
is the first step.
Outcomes will vary in
every child.

You are not alone

Approximately 2,500 babies born every year in the US will have infantile spasms.

There are many parents like you who have or have had a child with infantile spasms.

Taking care of a child with a neurological condition can be emotionally and physically draining. Remember to care for yourself, seek out respite care when needed, and consider counseling or therapy to cope with the stress and emotional toll.

Find a support group specializing in infantile spasms or epilepsy that can help you through this journey. Connecting with other parents who have gone through similar experiences can provide emotional support, advice, and practical tips.

Here are some groups and resources you can explore...*

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Pyros Pharmaceuticals (“Pyros”) does not have any affiliations, endorsements, or partnerships with any third-party organizations mentioned or linked on this website. The information, products, or services offered by these third parties are independent of Pyros. Pyros does not assume any responsibility or liability for the accuracy, completeness, or reliability of the content or offerings provided by these third-party entities.

Every day matters in infantile spasms

Early diagnosis and treatment are critical to better developmental outcomes.

Every day matters
in infantile spasms

Early diagnosis and treatment are critical
to better developmental outcomes.