Infantile spasms

A family in Thomas Township is sharing their story of misdiagnosis to hopefully help others who may be going through the same thing.

George and Tammy Smith have three children. Their youngest is 8-month-old Zaila Rose Smith.

In October of last year, Zaila started making strange movements.

"Her eyes rolling into her head, she's jolting forward, arms coming out," George said.

Sometimes it's so subtle, that just blinking could cause you to miss it.

The Smith family said Zaila was diagnosed with a condition called Infantile Spasms. It's a seizure disorder. Symptoms can be hard to detect because it often looks like the baby is simply startled.

It's common to see a series of sudden jerking movements of the arms and legs, a drop of the head, and in Zaila's case- widening of the eyes.

The Smith family said getting this condition diagnosed was extremely difficult.

Tammy Smith, Zaila's mother, said the spasms just "started one night out of nowhere."

Tammy said she took Zaila to the local emergency room right away.

"The doctor on-call said she looks like a healthy 5-month-old baby and she sent us home," Tammy said.

Tammy followed up with her pediatrician the next day, but she claims her concerns were dismissed once again.

"'Oh it's just GERD, oh it's just acid reflux, something along those lines.' They sent us away," George said.

Before the family left the clinic, they said they tried to set up an EEG, or a brain scan for their daughter. However, they were upset to find out the next available appointment for that test was three weeks away. At that point, they just couldn't wait and made the choice to go to C.S. Mott Children's Hospital in Ann Arbor.

"Just go down there, just go. Go to the emergency room. Don't call just go. She left work early and I called in that day, in tears just frazzled," George said.

Things got better once they arrived at Mott Children's Hospital.

George was pleased with their care.

"They were absolutely amazing. She got a diagnosis the same day. She was put on treatment, had an EEG... all within 12 hours of us being there," he said.

Zaila was treated with steroids and hasn't had a seizure since.

A great outcome in this case, but as University of Michigan resident of Pediatric Neurology Taryn Surtees points out, things don't always end well for those with this condition.

"If they go untreated it can cause what we call regression of milestones, meaning that the child can lose their skills. It can also lead to long-term cognitive problems," Surtees said.

She said this condition is relatively rare, happening in children ages 3-8 months of age.

https://www.wnem.com/news/family-shares-story-of-misdiagnosis-in-hopes-of-helping-others/article_99e7684c-438b-11ea-a1a5-5f9493906472.html