Mom's intuition credited for stopping son's misdiagnosis

January 31, 2013 3:51:46 PM PST
When a small boy kept suffering from life-threatening seizures and medication just wasn't helping, his mother took a stand against his doctor. She fought for her little boy to make sure they found out what was going on and didn't stop until she uncovered the mystery.

When little Zane began experiencing seizures, mom Holly Guillaume took him to the emergency room for help. Yet he went home no better than he arrived.

"The medications that they were giving him were not helping at all," Guillaume said.

Finally, Guillaume began taking videos to show the doctor what was happening.

"I felt like I was getting the brush off, and she wasn't listening and she wouldn't even take the time to watch a two-minute video," Guillaume said.

That doctor wouldn't watch the video. But Dr. Gretchen Von Allmen, a pediatric epilepsy specialist with UTHealth and Children's Memorial Hermann, did and it helped her diagnosed a severe form of epilepsy called infantile spasms.

"He was having probably hundreds a day," Von Allmen said.

He needed immediate treatment with special medications.

"They need to be started on medication on a short trial and if it doesn't work, you move on to the next one," Von Allmen said.

It worked, and in the past three months, Zane's seizures have stopped.

"Just a couple of months ago he couldn't hold his own head up. Now he's sitting, standing, laughing and giggling and just a huge progress," Guillaume said.

But it happened because Zane's parents didn't accept a wrong diagnosis.

"Keep fighting for your child. Do your own research and find a doctor who will listen to you," Guillaume said.

Dr. Von Allmen agrees.

"Parents should feel confident enough to continue to advocate for their baby and find a doctor who will help them," she said.

And now Zane has that chance to be that healthy boy.

"I want him to be happy and healthy like he was when he was born," Zane's older sister, Abby, said.

Dr. Von Allmen says parents should trust their instincts, and if they feel like their child is getting the brush off, maybe it's time to change doctors.

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