Your Child’s Headache May Be More Than A Migraine
When she was 5 years old, Lauren Ashley had trouble seeing. Her mom took her to the eye doctor and figured Lauren would be getting some glasses.
Lauren remembers the doctor’s face vividly. He turned white as a ghost.
“He looked into my eyes and told me that I had a brain tumor,” she remembers.
“When they tell you that your child probably has a brain tumor, it knocks the wind right out of you,” says Lauren’s mom, Diane.
But brain scans and spinal taps showed there was no tumor, just the symptoms. The condition is called pseudotumor cerebri. Other than vision loss, the disease causes extreme headaches.
“It feels like someone’s got a huge knife and is pushing it through your head,” Lauren says.
Millions of children and teenagers get headaches, but not all headaches are created equal. In more and more cases, the pain and symptoms are similar to brain tumors, but there is no tumor.
The headaches make it nearly impossible for her to go to school. She can only go for a few hours in the morning then she spends the rest of the afternoon at home with a tutor. Like a migraine, bright lights and loud noises create excrutiating pain.
And the pain never goes away.
“It’s a lifelong sentence. There are treatments, but there is no cure,” says Diane.
She has seen her daughter endure dozens of surgeries and lengthy hospital stays. It’s been a real challenge for the family because Diane tries to divide her time between her career as a nurse and her two daughters.
They talk to their dad as often as possible via Skype. He’s been working as a military contractor in Afghanistan for the past few years.
“It seems to be more common it used to be,” says Nationwide Children’s Hospital Chief of Neurology Dr. Steve Roach.
He says there is an undeniable parallel between pseudotumor and obesity. But, so far, studies haven’t been able to figure out exactly how they’re connected. Doctors theorize is may have to do with over-production of spinal fluid.
“Basically if there’s an imbalance so that you make more than you absorb, then the head is a closed space, so the pressure goes up,” says Roach.
To relieve some of that pressure, Lauren has a tube running from her skull to her stomach, helping to drain some of the extra fluid. The tube occasionally clogs, though, and she has to have another surgery to reopen the drain.
Nationwide Children’s Hosptial has the first clinic in the country that is dedicated to studying and treating psuedotumor cerebri.
“By organizing clinics, keeping data, doing new research, we will have more to offer in subsequent years than we do now,” says Roach.
Roach says it’s important for parents to remember that psuedotumor is a very rare condition and Lauren’s case is unusually severe.
But Lauren keeps meeting more and more kids who are dealing with the disease. She has discovered several of them online through Facebook. Some have even journeyed to Columbus to visit her and to see Nationwide Children’s clinic for themselves.
Lauren also has her own website, I.H. Gray Matters, where she hopes to educate people and raise awareness.
In the meantime, she’s still fighting for a normal life. When she can, she dances and hangs out with friends … just like any other 15-year-old girl.
“If you don’t get used to it, you’re going to be like a lazy bum on the couch all day. So you gotta do something,” she says.
Her mother is both proud and awed.
“I don’t know how she does it. I couldn’t do it,” Diane says.
Lauren hopes to be a sophomore at Gahanna-Lincoln High School this fall. She says she is looking forward to helping other families cope with psuedotumor cerebri when she becomes a public speaker … and a newscaster.
—
By Marshall Mcpeek