Getting an IS diagnosis

After you've noticed the symptoms of infantile spasms (IS), your first step will likely be to visit your child's pediatrician or the emergency room. When you speak with office staff or the doctor, tell them you suspect your baby has infantile spasms.

Be prepared to show your doctor a video of your baby's movements that made you suspect IS. Talk to your doctor and ask questions. The doctor may initially think of colic, gastroesophageal reflux disease (GERD), or another condition, so you will need to be specific about what you're seeing and why it concerns you.

 

Why see a specialist?

When you tell the doctor what you've seen and that you suspect IS, he or she is likely to refer you to a pediatric neurologist. Infantile spasms is so rare and so complicated that it can only be treated by a doctor with special training in both neurology (treating the brain) and pediatrics.

These doctors are often affiliated with large medical centers, so you may have to travel some distance on short notice to meet with them. Here, too, tell the office staff and the doctor that you suspect your baby has IS. The neurologist will also want to see the video of your baby's movements.

Watch this video to see how one doctor describes how IS may be diagnosed.

The doctor's diagnosis

In addition to the video of your baby's spasms, the neurologist will take a full medical history of your child, including when the spasms happen, how long they've been happening, and how long they last. The neurologist will also measure and ask about any delayed development your child may have experienced. As soon as you suspect IS, you may wish to start tracking all of this information to share with doctors.

Then, the doctor will order an electroencephalogram (EEG). This is a noninvasive, painless test that measures brain-wave patterns. Children with IS show a distinctive, unusual pattern called hypsarrhythmia.

With the medical history and EEG, the neurologist will be able to diagnose IS and, together, you can begin to discuss a plan for treatment.

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.