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Take video and see a doctor
right away

Take some video immediately

The faster an infant can get diagnosed and started on treatment, the better their chances are for reducing or eliminating future developmental delays or disability.

It is helpful to record video of your child having spasms using your phone or tablet. You can use this video to show the doctors what you are seeing and suspecting. A pediatrician or neurologist can often differentiate between reflux and infantile spasms based on the visual characteristics of the episodes. This will help save time getting to the correct diagnosis.

See a doctor right away

Don’t hesitate if you see movements that you think may be infantile spasms. Get to a doctor and insist that a consult within the next couple of days is established with a neurologist or epileptologist. The more quickly a diagnosis can be made and treatment started, the more likely the child will have better outcomes.

What to do if you suspect your child could be having infantile spasms.
  • Take at least one video with your phone of your child having symptoms to show the doctors
  • Call your pediatrician or family doctor right away and describe what you’re seeing and/or show the video(s)
  • If your pediatrician is unable to see you within a day, take your video and baby and go to the emergency department
Insist on seeing a specialist and push for an EEG

Not all doctors are familiar with infantile spasms. And only certain specialists can diagnose infantile spasms.

While a primary care doctor or pediatrician is often the first point of contact, it's crucial to get a referral to a pediatric neurologist or epilepsy specialist for accurate diagnosis and treatment.

An EEG is an important step for diagnosis. Insist on an immediate EEG. Every day matters in infantile spasms.

Early diagnosis can reduce impairment

Infantile spasms cause developmental delay and disability in children.

Getting your baby diagnosed quickly and started on treatment as soon as possible can help reduce, or even avoid, life-long impairment.

Act today
Getting a diagnosis within 7 days of seeing the first signs of infantile spasms can decrease life-long impairment.

How many parents get their child evaluated within 1 week of seeing spasms?

How many parents get their child evaluated within 1 week of seeing spasms?

Ideal
Diagnosis within 7 days
(1 week)
Diagnosis within
8-14 days
Diagnosis in more
than 15 days
Only 3 out of 10
2 out of 10
More than 5 out of 10

More than half the children are not evaluated for 2 or more weeks, putting them at greater risk for life-long disability.

Tips for conversation with your doctor

This is not a
time to "take
the next available appointment."
You must see a
doctor immediately.

If your doctor understands you think you may be seeing signs of infantile spasms, the path to testing and diagnosis can begin quickly.

If your doctor understands you think you may be seeing signs of infantile spasms, the path to testing and diagnosis will begin quickly.

It's so important to relay the severity of your concern, but knowing what to say may not be easy. Here's an example of what you can say when you call your pediatrician.

Hi Doctor,

I’ve noticed my baby has started making some jerking movements that are repetitive. I think they are seizures, and I am worried it may be infantile spasms.
The spasms look like...

Describe for the doctor what you are observing. For example,

  • Arms extend up and stiffen
  • Fists clench
  • Legs bend up and curl into belly
  • Legs extend out and stiffen
  • Face tenses up
  • Mouth droops to one side
  • Eyes look way up
  • Eyes stare blankly
  • Head bobs

I first noticed them...

Tell the doctor when they began

They repeat every...

Tell the doctor how many seconds you estimate between each spasm

The cluster lasts...

Tell the doctor how long the episode lasts

I have taken some video of the spasms. Can I email you a few videos or can I come in today to show you?

When to go to the emergency department

If your pediatrician is unable to see you within a day, take your video and baby and go to the emergency department.

You should be referred immediately to see an epilepsy specialist (called an epileptologist).

Example of what you may say when you get there:

My baby has started making some jerking movements that are repetitive. I think they are seizures, and I am worried it may be infantile spasms.

I have video of some episodes and clusters.

I need to see an epilepsy specialist. If this is not possible, I would like to get an EEG done quickly and have the results, along with my video, sent to an epilepsy specialist as soon as possible.

EEG=electroencephalogram.

If there isn’t an epileptologist in your area, your baby will be seen by a neurologist. In rural areas, or hospitals that don’t have these specialists, the doctors at the hospital will do a virtual consult.

FROM A PARENT WHO’S BEEN THERE

Pack a day bag and go to the nearest children’s hospital’s emergency room, even if it is hours away, and tell them [that you believe] your child is having some sort of seizure...You need a child neurologist and this is the best, quickest way to get proper diagnosis and immediate treatment.”

If your child is diagnosed with infantile spasms, here's what you may expect

EEG=electroencephalogram.

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.