3.04.2012

The Non Kung-Fu PANDA

A few weeks ago, our four-year-old-son, Lil' C, started making a noise that sounded like a cross between a hiccup, a sharp intake of breath, and the sound a person makes when he is trying to suck snot into the back of his throat.

Pleasant, I know.

At first, I found it a bit annoying, and would ask him to stop.  To which he would politely answer, "Yes, Mommy, I'll stop."

But the noise continued unabated for another week.  And instead of simply asking him to stop, I demanded, "Lil' C, that is driving me crazy! WILL YOU PLEASE QUIT MAKING THAT NOISE!" 

To which he would politely answer, "Yes, Mommy, I'll stop."

It soon became clear that he couldn't stop making the noise, that it wasn't just an attention-getting ploy created by an often-ignored little brother.  Fearing we had another child with a tumor, I made an appointment with the doctor.

When Lil' C continued making the noise in front of the pediatrician, I was relieved I wasn't just being a crazy paranoid mom.  The doctor asked me a battery of questions, including if Lil' C had been sick recently. I answered that he hadn't, but his six-year-old brother was suffering from a bad sore throat.

When the doctor suggested swabbing Lil' C for the strep virus, I was puzzled.  And when he said, "I think he has a Panda," I was really confused.

Lil' C, however, was thrilled, "We have a panda!  His name is Po."

The doctor laughed and explained that PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.  Sure enough, the rapid strep test came back positive, even though Lil' C showed no other signs of having the virus.

The term, coined in 1998, describes a theory that some children develop rapid onset of obsessive-compulsive disorder (OCD) or tic-like behaviors following group A beta-hemolytic streptococcal (GABHS) infections like strep throat or scarlet fever.

Huh?

I had never heard of such a thing, and an informal poll of my friends, family and Facebook peeps revealed the same.  Out of 70 people I asked, only 5 had ever heard of it.  Two are in the pediatric medical profession, two had a child diagnosed with it, and one heard buzz of it in relation to the high school girls from LeRoy, New York who had developed sudden tic-like symptoms.

The doctor gave us both a prescription for antibiotics (one for the six-year-old, too) and an assurance that the tic would go away (although he couldn't say when), but that did nothing to quell my nagging feeling that it was much more than that.

Surprisingly, a lot of information is available about PANDAS.  Here are some fast facts about this rare, odd, and controversial diagnosis:
  • It occurs in children from age 3 to the age of puberty onset (which makes it a questionable diagnosis for the LeRoy girls).
  • One percent of children have OCD not related to GABHS infection.  Not all children who get an infection will develop PANDAS.  There has been no research conducted as to the percentages of children who develop PANDAS after a strep infection.
  • PANDAS is caused by the body's immune reaction to the strep infection, not the strep itself (thus the reason not all children will develop it).  The child's antibodies mistakenly attack a part of the brain, known as the basal ganglia, which is thought to control movement and behavior.
  • There is no proven medical solution for PANDAS.  A course of antibiotics will cure the strep infection and therefore make the tic go away, but another strep infection or other autoimmune illness (such as scarlet fever, Lyme disease, celiac disease, the chicken pox or flu) can make the symptoms reoccur, possibly even more intensely and for a longer time period.
  • There is even evidence that common childhood illnesses such as ear infections, sinusitis, pneumonia and impetigo can trigger PANDAS.
That's enough to scare the most seasoned parent and send her running to the pediatrician's office!  I have to admit that as a mother of five who has spent more than her fair share of time in pediatric hospitals and doctors' offices, it freaks me out a bit as well. 

I feel like there are dots that I can connect on Lil' C's road to this diagnosis.  His dad suffers from an autoimmune disorder, celiac disease, in which he has an extreme intolerance to gluten in wheat, oats, barely, and rye.  The genetic component is there; our children are more likely to develop autoimmune disorders because one of their parents has one.

There is also a nutritional component.  It's been theorized that nutritional supplementation may help the brain recover from the PANDAS response, causing me to wonder if Lil' C's past food issues could have weakened his body's response to the virus.  And the fact that he seemed to have no symptoms of strep is worrisome, although many of the people I talked to reported non-symptomatic cases of strep in their children.

Little children do all sorts of strange things, mainly to get our attention.  Most are harmless.  The important thing to remember about PANDAS is that the tics, strange thoughts or actions, or OCD-like behavior occur very abruptly, like your child is a different person from one day to the next.  Many parents can pin-point exactly when the strange behavior started (I know I can).   A strep test is an easy way to quell fears and save months of heartache and worry.

Lil' C has been on antibiotics for almost a week, and he is still making the hiccuping noise.  He is otherwise happy, active, and healthy.  I know I am going to have to watch for OCD and tic-like signs in the future, but at least I will know where to start when, and if, they occur again.



Has your child ever had any tic-like behaviors?  Have you ever heard of PANDAS?



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