POTS, PANDAS, PANS & Strep Infections
A few years ago, I remember watching a story on 20/20 or 60 Minutes about several high school kids from a small town in New York exhibiting strange, uncontrollable, and unexplained behavior. The community had many thoughts on the cause - such as something in the water or the kids were all pretending as a group. But some thought it was PANDAS - pediatric autoimmune neuropsychotic disorder associated with streptococcal bacteria. That was the first time I had heard of it.
PANDAS is a neurological condition where antibodies are thought to cross the blood brain barrier and affect the basal ganglia portion of the brain. It is a medical illness and not a psychiatric condition. The basal ganglia controls voluntary motor movements, emotions, habital movements, reasoning, and comprehension among several other things. Symptoms include motor tics, OCD, handwriting decline, joint pain, trouble with math facts, ADHD, defiance, aggression - and often the onset is sudden. For Meghan, her symptoms included tics, trouble in math when she was once in honors math, trouble with comprehension, OCD, defiance, and emotional outbursts.
POTS, Lyme's, and PANDAS are examples of neurological illnesses. They each have overlapping symptoms. Researchers are now finding links between autoimmunity, antibodies, and many neurological conditions - it is also common for individuals to have multiple neurological conditions at once. Some people seem to be prone to neurological syndromes or have underlying conditions that make them predisposed to these types of illnesses. Now that we think that Meghan's POTS is auto-immune based, the PANDAS diagnosis seems more likely, too. I have mentioned in earlier blog posts that someone with the right underlying conditions often has a defining trigger to their illness - often a virus or other occurrence (such as a tick infected with lyme in Meg's case) that causes the body to produce antibodies that subsequently turn bad. Check out PANDAS Network for the top research and educational info.
When Meghan was in 5th grade, she started with some small OCD type repetitive movements. Repeatedly moving her thumb back and forth. Shrugging her shoulders or a repeated closing of her eyes in a long, tight blink. It was something we talked about with her and tried to get her to consciously stop - mistakenly we thought it was something she should be able to control. Our schedules were busy, so it often went unnoticed or somewhat ignored. A visit to the doctor for an ear infection didn't seem to raise concerns when we asked questions about the behavior. It seemed slightly better in 6th grade, so we did nothing. Looking back, Meghan had an abscessed tooth pulled in 5th grade that could have been the source of bacteria. She also had strep throat at least once that year (many times when she was a preschooler). It's hard to say for sure.
Here is an article from our Articles page about two unrelated boys living not that far from us that were both determined to have PANDAS: A Little Known Side of Strep. Fortunately they had found a doctor who had some background in PANDAS and was willing and able to help. That is not always the case. The boys also had dramatic behavior changes. Meghan's behavior was not that severe and she worked to hide it when she could - or at least tone it down. Her symptoms are much worse as her body is physically or mentally stressed or when she is tired. We are hoping that her IVIG therapy will help with antibodies that affect her basal ganglia. Other treatments can include high doses of antibiotics given over longer periods of time.
Schools could be a great place for more information on these types of conditions - not to diagnose, but to provide direction to finding help for things out of the norm. I have been trying to raise some awareness in our district on POTS, and now PANDAS, but it seems many don't take neurological conditions seriously - or it is easily forgotten or maybe it is downplayed. I'm not really sure. I know teachers are already busy with many demands through-out their busy day. I have seen over and over the families in a doctor's waiting room that don't have the time or the resources to do all the searching for answers. Or they believe there is nothing else they can do.
Meghan is part of a study that uses the Cunningham Panel - a blood test available through Moleculera Labs (it can be ordered by your own doctor). The test looks for certain antibodies thought to be the cause of the PANDAS. If you want to learn more about the Cunningham Panel and Moleculera click here. It might be worth discussing with your doctor or searching for a doctor who has experience with it. Another test a doctor might order is one that checks for elevated ASO titre levels (often a very time sensitive test). PANDAS and PANS is controversial depending on whom you talk to. We had a doctor get very upset when I asked about PANDAS - she demanded to know about the studies and documented cases. I was very hurt by the doctor's reaction - I was desperate and simply trying to find answers.
The top resource for PANDAS and PANS is: PANDAS Network. Please link to their site for the latest research and help.
Everyone's medical experiences and situations are often very different. This is just an example of what we experienced.