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Sneezing girl officially diagnosed

Doctors say she has PANDAS

Updated: Wednesday, 02 Dec 2009, 6:32 PM EST
Published : Wednesday, 02 Dec 2009, 5:38 PM EST

CHESAPEAKE, Va. - For several weeks, WAVY.com has been following Lauren Johnson, the 12 year-old Chesapeake girl who started sneezing in upwards of 12,000 times per day after suffering from a bad cold. Recently, Lauren was officially diagnosed with Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, otherwise known as PANDAS.

"Now we can actually treat it as something," says Lauren who is thrilled to finally have a diagnosis.

WAVY.com spoke with Dr. Rosario Trifiletti, a child neurologist treating Lauren.  He explained the onset of PANDAS. "Following a common streptococcal infection, the most common of which people are familiar with, the strep throat from a few days to a couple of weeks later, there's a marked change in a child that gets this."

Trifiletti says those changes happen quickly.  PANDAS symptoms include:

  • Cognitive inflexibility, difficult to reason with, as if stuck on an idea
  • Obsessive/repetitive/compulsive argumentative behaviours
  • TICS (repetitive vocalisations of body movements)
  • Tourettes Syndrome
  • Attention deficits and oppositional/defiant behaviours.

The good news? There is treatment for Lauren and other children who suffer from PANDAS.

"She was placed on antibiotics and has improved considerably," says Dr. Trifiletti.

However, there is some bad news.

"Lauren is at risk of getting this again, so we're probably going to place her on some sort of...a low dose of antibiotics, for a long period of time," says Dr. Trifiletti.

Lauren's family learned the PANDAS diagnosis is relatively unknown.  It was discovered only 13 years ago meaning a lot of trial and error.

"If it doesn't work, you know, you cry and you go, 'Why? It doesn't work,' and then the next day comes and you try something else, you start something else until you find what works for your child," says Lauren's mother, Lynn choking up.

"People need to know about it. I think the more we know as parents, the more we're going to accomplish."

Dr. Trifiletti tells WAVY.com there could be millions of kids suffering from PANDAS, but only several thousand have been diagnosed.

Lynn Johnson says she's in close contact with other PANDAS parents, networking, sharing new research, and supporting one another. Their goal is to shine more light on the disorder.
 

 

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