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Local Girl Takes Great Risk to Treat Severe Tremors


We all know kids can be mean - teasing those who are different from them, or those with disabilities.

Lyndsey Meyer looks like any other 17-year-old.

She's a junior at Waunakee high school.

Like other teenagers, school is the last place she wants to be - but her reasons are very different.

Lyndsey says, "They just started calling me earthquake like last year."

She is an expert at hiding it.

But that horrible nickname "earthquake" is due to severe tremors that cause every part of Lyndsey's body to shake, all the time.

"I come home crying a lot because I can't do stuff. Like I can't even eat so I don't like to take lunch, to school."

She can't have a job because her hands shake - and the relentless teasing forced Lyndsey to withdraw.

"I don't like to talk to friends.... I don't know... I don't have that many."

Julie Meyer says, "I don't know what it's like to be her. I know what it's like to be her mom and watch her and it's heartbreaking"

Heartbreak is something Lyndsey's mom, Julie, is familiar with.

Lyndsey and her brother Bobby were born with "galactosemia," a rare metabolic disorder.

Any food with a trace of dairy - or lactose - is terribly dangerous.

Julie says, "They can't have it because instead of the body excreting it, it just stores it."

That can lead to things like tremors, mental retardation, liver failure, even death.

Milk, cheese and butter are off limits - but they never know where *else it's hiding.

Experts don't know if it's hidden lactose - or the progression of the disease itself - that causes Lyndsey to suffer.

Julie says, "We saw a lot of neurologists - a lot. And they all said different things - we can try this, we can try that. We tried them all and we just watched the tremor get worse."

That's why she is the first galactosemia patient to EVER undergo brain surgery for tremors.

Julie says, "When she found out she could have the surgery, her depression went away because she got hope back. And when she got hope back, her whole attitude changed."

Lyndsey is having deep brain stimulation on the left side of her brain, to adjust the tremor in her right hand -- an operation usually performed on Parkinson's or MS patients.

A team of doctors will put an electrode deep into part of her brain, all while Lyndsey is awake.

UW Health Neurologist Dr. Erwin Montgomery says, "This electrode is implanted into the thalamus and is left there and is connected to an impulse generator implanted underneath the skin of the chest. And then it gives little electrical impulses to that part of the thalamus."

Those impulses, given through a pacemaker, should control the tremors.

After healing for a few weeks - Lyndsey will be given a remote control to turn the device up and down as needed.

Montgomery says, "When you see them shaking very very badly and you turn on the stimulator and the tremor stops ... it's very very dramatic."

This would give her the ability to do things most of us take for granted: drink without a straw - and write without wondering who might be looking over her shoulder.

Lyndsey says, "Hopefully people won't be so mean."

And if it gives Lyndsey hope, it finally gives her mom hope as well.

Julie says, "Buttoning, zipping, shoes, eating, drinking... and writing.... those are all the things Lyndsey could no longer do."

And one day soon, her classmates may be able to see the girl behind the tremors.

"I think I'm a good person and you should get to know me first instead of just judging."

Read the UPDATE on Lyndsey's Surgery:

Lyndsey's mom says she's tired but in good spirits. The procedure went well - no major complications.

The degree of success will be determined in the weeks and months to come.

This operation is was just for her right hand. If this works and she wants to, it is an option, but risks are higher second time around.

The disease is rare - and some may ask how is it diagnosed if it's so dangerous?

Wisconsin is one of the states that include it in newborn screenings.

There is speculation, though, that some unexplained newborn deaths might be caused by galactosemia.

Research is being done right here at UW.


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