Know the symptoms of infantile spasms

Something just isn't right

Parents and caregivers are usually the first people to notice the motions and behaviors that give infantile spasms (IS) its name. Initially, you might think your baby has colic or another routine health problem. However, parents of children with IS often say that "something just doesn't feel right" about the way their baby is acting. There are various infantile spasms causes, and most are not obvious without testing.

What you may see

Spasms usually begin within a baby's first year. They occur most often in the morning or after a nap. They may last from less than a few seconds to up to 10 seconds—and they can happen in clusters of 2 to 100 at a time.

Spasms, which are a type of seizure, involve sudden, uncontrolled movements, including:

  • Bending or bowing from the waist when sitting
  • Nodding or bobbing the head forward over and over
  • Stiffening the neck, trunk, arms, and legs, or extending them out
  • Bringing up the knees when lying down
  • Wrapping the arms across the body like the child is hugging itself
  • Extending or thrusting the arms to the side while elbows are bent
 

What spasms look like

You can see an example of spasms in this video. You should also record a video of your own child's movements to share with your doctor.

In comparison, a baby with colic may cry, lift the legs repeatedly while clenching the hands, or have a swollen stomach. It's important to speak with your pediatrician about your infant's spasms.

What you should say

You are your baby's advocate. If you are seeing the symptoms of IS, the most important words to say are, "I think my child could be showing signs of infantile spasms." It's OK to be persistent.

When you call to request an office visit—and when you meet with a doctor in the office or the emergency room—there are some ways you can describe what you are seeing in your child that may help your doctor identify what is happening. IS is sometimes misdiagnosed as colic, gastroesophageal reflux disease (GERD), or another condition.

It helps to be specific. Here's a list of symptoms, so you can better describe what you're seeing and why it concerns you.

If you see your child

Repeatedly crunching, bending, or hunching the body

Jerking the legs

Flinging arms up or thrusting the arms to the side with elbows bent

Bobbing or dropping the head

Extending or stiffening the neck, trunk, arms, and legs

Crossing the arms across the body like a self-hug

Say to the doctor

Seems to be having seizures

If you see your child

Doesn't maintain eye contact as much anymore

Has trouble watching moving objects

Rolls his or her eyes

Stares widely and blankly

Say to the doctor

Strange eye movements

If you see your child

Doesn't reach for things as much as he/she used to

Has learned to roll over and then stopped

"Losing" skills that were learned

Say to the doctor

Not progressing as I would expect

If you see your child

Doesn't smile like he or she used to

Looks irritable and in pain during spasms

Cries hysterically and then seems OK

Has "weird spells"

Seems "just different"

Say to the doctor

Personality changes

Talk to your doctor

Prepare for a conversation with your child's doctor by downloading this discussion guide.

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Helpful Resources

Parent and Caregiver Brochure

Learn more about your child's IS and treatment with Acthar from this helpful and informative brochure.

Download your brochure

Acthar A.S.A.P.

See the many ways the Acthar Support & Access Program (A.S.A.P.) can help you get Acthar for your child with IS.

Learn how to give Acthar

Step-by-step videos help you walk through the administration process so you can learn, and then review, at your own pace.