Infantile Spasms Awareness

Francie Khalaf by Francie Khalaf Additional Needs

Francie Khalaf

Francie Khalaf

I am a wife and mother of two children with cerebral palsy. I believe in making lemonade out of lemons

Did you know that infantile spasms only effects one out of a few thousand according to epilepsy.com?

I am spitting this fact out to you because Sawyer was one of those children.

We had no idea he was having seizures.

I decided to set up an appointment with neurology to get an idea of what we were facing with Sawyer’s brain injury.

It was something I advocated for because I am a planner and I wanted to know what to expect.

I remember calling to go over the questionnaire with our neurology nurse before we set up our appointment.

One of the questions was is he having some repetitive or jerking moments.

I remember saying “No, he seems totally fine.” I then added “He is doing this new thing where he is reaching over and over for something it’s super cute.” Thankfully the nurse said “Well given his history lets just set up an EEG to rule them out.”

Thank God for that nurse. I thought it was just another step.

I had no idea it would be life changing.

I remember going into the appointment and talking to my mom who was babysitting Sawyer’s twin sister at the time saying “I’m sure its no big deal, I will be home in a bit.”

Sawyer was very grumpy that day and it was stressful getting the probes on but once we got them on I grabbed my book to sit and read while holding him.

Forty five minutes later they came in and said they are stopping the test early.

I assumed that this meant he was fine and we would be going home.

I was brought into a patient room once Sawyer’s probes were all off and the doctor came in and sat down with all the paperwork.

“Your son is having Infantile Spasms.”

My stomach dropped. What does this mean? What do we do? How to we stop them and what causes them?

My mind raced but I stayed calm as I typically do in an emergency.

She said “I will explain more at the hospital but you need to drive him over to be admitted now. These are considered an emergency and he needs to be admitted now.”

WHAT? Is this real? That cute reaching thing he as been doing for 3 months isn’t a cute reaching thing?

The neurologist explained that these are a rare form of seizures in infants and considered an emergency and we need to get them under control.

“Do you want an ambulance or can you drive?” (She must have seen how confused and shaken up I looked.)

Ummmmm….. what??

“No, I can drive just tell me where. He’s safe in the car on the drive over right?”

“Yes, he will be fine, just go straight there.”

The journey of our hospital experience and official diagnosis will be in my next blog.

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