PANDAS: Our Own Personal Snowpocalpyse in Atlanta

Since this disease is as present in my home as the snow outside our front window right now, while snowbound I decided to compose a list of what the Snowpocalypse 2.0 in Atlanta has in common with PANDAS.
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Snowpocalypse 3.0, as my students are calling it, seems to be going better than the earlier 2.0 version for Atlanta. Happily, my family is safe and warm at home.

And, we have another reason to cheer. We finally have a way to treat our 9-year-old's obsessive/compulsive and Tourette-like symptoms when they seem to randomly appear. We understand why he's losing control of his bladder and bowels. We get why he has unpredictable spurts of impulsivity and hyperactivity. We have figured out the reason for his newly acquired stutter and decline in fine motor skills:

He suffers from a childhood disease called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections); it sometimes arises if strep throat is not treated properly.

Never heard of it? You're not alone. Many health professionals know very little about this disease. Hopefully that will change since October 9th was named PANDAS/PANS Awareness Day.

Since this disease is as present in my home as the snow outside our front window right now, while snowbound I decided to compose a list of what the Snowpocalypse 2.0 in Atlanta has in common with PANDAS.

1) Fun!

When most people hear about 2 1/2 inches of snow, they think of fun -- snowmen, snowball fights, snow-covered streets to slide down on in sleds. They don't think about spending 12 1/2 hours stuck on the highway as they deliver someone's baby in a freezing cold car and wave to a busload of shivering kids.

Same with PANDAS. Most people think about those cute little bears in China. They never imagine examining the latest bald spot on their child's head (self-induced) as they clean poop off of their 9-year-old's butt and listen to him rattle off swear words as he chews on his shirt.

2) The cause is simpler than you think.

If you were to look at the pile-up traffic jams on the Atlanta belt line, you would think Zombie Attack, not two and a half inches of snow.

With PANDAS you might think Tourette Syndrome, OCD, or Encopresis, not strep throat. However, the symptoms of PANDAS are caused by a bacterial infection, often strep throat. Many doctors are re-thinking the treatment of children with OCD, Tourette's and similar diseases--giving them antibiotics rather than antidepressants at the onset of symptoms to see if their symptoms go away.

3) It didn't have to get this bad.

Had Atlanta been proactive rather than reactive with the storm, many preschoolers wouldn't have had to sleep at their daycare, students would not have been stuck on school buses for hours, and adults would never have been handing out hot chocolates to perfect strangers on the highway.

The same goes for PANDAS. Long-term antibiotics and prednisone are standard treatments for the onset of PANDAS, but most doctors are reluctant to take this step because of issues surrounding both medications. In general, children are sent to psychiatrists and become much worse, with often-catastrophic results and brain changes associated with OCD or Tourette's that can last a lifetime. The closest PANDAS experts in my area are in Tampa, Fl and Washington, DC. Fortunately my son showed up at my pediatrician's office and began swearing his 4-year-old head off, and she immediately tested him for strep throat.

4) Rewiring is necessary.

Both in Atlanta and in the brains of kids with PANDAS, rewiring is necessary. Atlantans have repeatedly voted down government and community efforts to expand rail systems. If the current rail system had been expanded after it was voted down in 2012, many Atlantans would not have been stuck on the highway for hours, freezing, hungry and with no place to pee. PANDAS children have the unfortunate pleasure of experiencing their strep antibodies attack their brains. When the strep bug visits, the results are as catastrophic to their bodies as not having a rail system in place in Atlanta when it snows during rush hour traffic.

5) This problem will strike again.

Just as Atlanta is in the midst of another snowstorm, PANDAS will strike again in my son's life. We have been dealing with PANDAS since my son was 4, but every time his symptoms resurface, it takes us at least a month or two between onset of symptoms and diagnosis. Last time, for six months his strep test came back negative until a blood test confirmed what we had already known. In the meantime, our son became worse and worse and we began pulling our own hair out. Doctors won't treat PANDAS without proof that an illusive strep virus is present. Yet our son's behavior is all the proof we need. In Atlanta, had school and government officials taken the weather predictions seriously, things would have gone a lot easier for Atlantans and lots of precious time and aggravation could have been spared. Fortunately for Atlantans, this wasn't the case the second time around and most of us made it home safely before the snow even began. My family is still trying to juggle the health system in order to treat PANDAS with the ferocity my son merits. Wish us luck.

For more information about PANDAS, please click here and here.

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