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Why Infantile Spasms Awareness is Vital for Parents

This post on infantile spasms awareness is sponsored.

I was supposed to have a brand new nephew last month. If you’ve been around these parts before, you know my sister and our frequent contributor, Jessica. Well, it turns out her second born had other plans. That beautiful, bouncing boy joined our family a few weeks early instead. His brother spent a bit of time in the NICU when he was born. So, to say we were all on edge when it was clear he had to come early is an understatement. Happily, everything turned out great for both kiddos, so our family is blessed beyond measure. The cousin crew has one more member and we couldn’t be any happier about our early Christmas present!

That being said, the stress that his parents went through, along with all of us who love them, was intense. So, I can’t even imagine how it would feel to have your sweet baby go through something like infantile spasms. If you haven’t heard of infantile spasms before, I’m not surprised. This rare disorder can be confused with a situation that doesn’t require the amount of urgency that it actually does! That is why we are here today to shed some light on the subject. Our goal is to get the word out there about infantile spasms awareness! If you’re a new parent, have a baby in your family or care for infants, this is information you need to know!

newborn wearing white baby gown and blue newborn hat

What Are Infantile Spasms?

Nearly 1,200 infants every year are diagnosed with this rare seizure disorder called infantile spasms, yet many health care providers have never even heard of this disease. There is a great need for awareness to help parents, caregivers, and providers to understand the signs and symptoms. Infantile spasms present as seizures that occur in infants under age 1 and can cause catastrophic, permanent damage to a child’s developing brain. Even more frightening, infantile spasms are often subtle enough to be easily overlooked by both parents and health care providers. Prompt diagnosis and treatment are critical, but are challenging because the condition can be mistaken for normal baby movements or other disorders that don’t demand urgency.

I’m helping raise awareness of infantile spasms during Infantile Spasms Awareness Week, December 1-7, to help parents, as well as physicians and other health care providers, know about this disease and treatments. There’s even an easy-to-remember acronym to help STOP infantile spasms:

  • See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching.
  • Take a video: Record the symptoms and talk to your doctor immediately.
  • Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test.
    Prioritize treatment: End spasms to minimize developmental delays.

graphic bringing attention to infantile spasms awareness

How Can We Help Find a Cure?

Together with leading child disease advocacy organizations and parent advocates, we’re sharing information about infantile spasms so parents, physicians, and nurses will know the signs to help STOP IS and help find a cure!

Awareness is so critical because treatment options are available to improve babies’ quality of life. In fact, clinical trials going on right now are looking into new treatments to stop these seizures. Noah, a baby from Virginia and current infantile spasms clinical trial participant, was diagnosed in utero with a rare disorder that often leads to infantile spasms. His parents understood the severity of infantile spasms and quickly enrolled him in the trial. With early intervention and the incredible advancements in clinical treatment options, Noah is a thriving 8-month-old on track for normal development.

We want to hear about more stories like Noah’s. To do so, help me spread the word about the signs of infantile spasms during Infantile Spasms Awareness Week using the hashtag #ISAW2019 or visit isweek.org. Together we share hope; together we can STOP IS!

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