Sneezes stop for Chesapeake girl

CHESAPEAKE, Va. (WAVY) - For five months, her sneezes were literally heard around the world. Finally, there is silence in Lauren Johnson's life. The 12-year-old from Chesapeake has stopped constantly sneezing.

Even so, her family says Lauren is not cured. Now, they are on a mission to continue Lauren's progress, while helping others diagnosed with the controversial syndrome doctors say sparked it all.

When WAVY.com started following Lauren Johnson's story in November 2009,  she sneezed upwards of 15 times a minute.

"She didn't stop overnight. She gradually stopped over a period of about 36 hours, but she did," said Lynn Johnson, Lauren's mother.

The improvement happened after her diagnosis of the controversial PANDAS in December. It's a relatively new syndrome triggered in the brain by bacteria that causes strep throat.

Lauren's initial treatment of steroids and antibiotics didn't stop the sneezing, so her doctors tried another approach called IVIG. It's a process that infuses plasma into the bloodstream to strengthen the immune system.

After roughly 20 hours of treatment over two days, "We saw the first three or four minute pauses and it seemed like an eternity. It was silent. It was like the silence was forever," said Lynn.

However, those precious moments of silence came with side effects.

"She had really, probably the worst headache she's had in her life and we treated that very quickly and she had some leg cramping."

After the pain wore off, Lauren reached a major milestone on February 19, 2010.

"She had one sneeze at 10:22 p.m. that Friday and it was the last one she ever did," said Lynn.

As exciting as that was, Lynn and her husband Mark didn't point out to Lauren for a little while that she stopped sneezing. They wanted to give it some time to make sure the sneezes or "tic-like" symptoms didn't start again.

When they didn't, Lynn asked Lauren, "Have you noticed you haven't sneezed? And she goes, 'Oh! Okay,' and off to do something else."

If you ask Lauren how she feels, she shyly shrugs and says, "Tired, but good."

It's a happy time for the Johnsons, but they know there is a possibility, as with many PANDAS cases, Lauren's symptoms could come back.

"I live with this fear in the back of my mind every day of my life that, what will tomorrow bring? I'm optimistic and I know I have great, wonderful doctors and people helping us through this journey, and we're determined to find change and make change and understand PANDAS, understand this disease that affects easily a half a million children right now and most of them don't even know."

So while Lauren focuses on being a normal 12 year old, Lynn and one of Lauren's doctors, Dr. Denis Bouboulis of Connecticut, decided it's time to make PANDAS easier for others to understand and treat.

"What I quickly realized is that there is very little information out there for a parent to find good viable information. We really felt the need to create a non-profit organization to build awareness to communicate the signs and symptoms, treatment options to parents, and to hopefully fund good research in the future."

That non-profit organization is called the "PANDAS Resource Network."

"We hope that we're going to reach half a million or more people out there and help a lot of very sick families, you know, sick children get well quicker and easier than they are now," said Lynn.

While the Johnsons work to help more PANDAS families, they know it's not over for their own child, but they are optimistic.

"She's not cured. That's the most important part. This isn't the end of her journey. We won the battle. We didn't win the war, not yet. We will."

Lauren and her family will be on the NBC Today Show Thursday morning to talk about PANDAS and Lauren's progress. That segment will air shortly after WAVY News Today, at 7 a.m..