Little Johnny loved his brothers and sisters since he was old enough to play with older brother Jack and younger sister Susy. For the first 7 years, they would enjoy Saturdays, playing happily under the sun in their back yard with neighbors and visiting cousins. Then, one morning in his 7th April, Johnny woke up a different Johnny, in fact, not Johnny at all. Mom and Dad thought he had mostly recovered from an unidentified infection the week prior with snots, fever, and cough. The day before he was eating better and the cough had subsided enough to let him come out of his room to hang out with Jack and Susy. This particular day however began with an outburst unlike anything Mom and Dad had seen before. Brother Jack touched Johnny’s baseball bat and Mom thought Johnny was going to take a swing at Jack.
After separating the two boys, Mom worked to sort out the event’s play by play but could only get out something about Jack having too many germs on his hands. This was all that Johnny would share as he rushed to wash both the bat and his own hands repeatedly for several minutes. Mom hoped this was a single event, but the rest of the day brought more outbursts both with Jack and Susy as Johnny could not seem to tolerate any contact or interaction without extreme fears of contamination. After confirming that Johnny had not ingested anything unusual in the home and did not have a fever, she made a mildly desperate call to the pediatrician, who encouraged me to wait it out and expect a better day tomorrow.
Better days never came and despite multiple tests, sweet little Johnny was replaced by irrational, edge of explosion, stay-away-from-me Johnny and their home was constantly in turmoil- except when Johnny was off to school, where he now struggled to stay out of trouble, much less keep up any decent grades. Mom and Dad were at a loss as was the pediatrician. Was this to be Johnny’s future, given that he was turning 9 and the symptoms had only gotten worse?
Welcome to a quick glance into the world of parents with children who suffer from PANS or PANDAS (Pediatric Autoimmune Neuropsychiatric Syndrome or Pediatric Autoimmune Syndrome Associated with Strep). This condition includes a very wide range of neurological and psychiatric symptoms in children that start suddenly, usually in the elementary years to as late as the teen years. A quite normal child in terms of typical neurological and psychological development becomes, over the course of a day or a few weeks, very abnormal and different after an infectious or toxic exposure. The infection or toxin triggers an autoimmune response which leads to changes in the child’s brain. Depending on the location of the inflammatory changes, symptoms can vary in form and intensity. Tics or other abnormal movements can seem uncontrollable. Personality changes range from depression or anxiety to panic attacks, obsessions and compulsions or even inconsolable delusions about others. The child’s life and the family are turned upside down.
An understanding of the mechanisms behind this disease process can help understand means to treat this condition which will be discussed in the next article. At the recently attended MAPS conference, the mechanisms were reviewed as a clear example of an autoimmune condition. Autoimmunity at its simplest is the abnormal activity of our immune system attacking our own cells and tissues rather than those of dangerous microbes and toxins. The attack leads to inflammation of the target cells or tissue and ultimately some measure of dysfunction. When the target becomes our nervous system, quite a variety of unusual symptoms can arise in these children. The specific symptoms depend on which parts of the nervous system are involved. Each neurologic or behavioral activity of life arises from specific brain areas or the interactions of those areas. When the area or the connections between areas are inflamed or damaged, problems arise in the symptoms witnessed by parents.
During the conference, a wide variety of triggers were noted as being the initiating factor which could set one’s immune system off into this downward spiraling cascade of neurologic damage. The bacteria include commonly recognized ones like mycoplasma pneumonia which can cause walking pneumonia or ear infections and streptococcus which can cause strep throat or skin infections. The list of bacteria also includes less commonly recognized ones like Borrelia (Lyme disease) and Bartonella (cat-scratch disease), and while these four are most common, many others can serve as a trigger.
The conference reviewed a wide variety of viruses which could trigger such an autoimmune response. Most of these are rather ordinary in terms of their high prevalence in children. They include coxsackie viruses, influenza, EBV, Human Herpes Virus 6 (HHV6), and even our latest coronavirus behind COVID 19. In truth, a multitude of viruses can set off this type of autoimmune reaction and children often experience flares of symptoms after viral infections which have only short term effects on other children.
Conference speakers also echoed how children sometimes experience PANS or PANDAS symptoms with parasite infections. Oddly, these exacerbations can appear focused around full moons and is believed to be related to the parasite’s life cycle of increase growth and reproduction during the full moon. The parasites can range from the simple and unnoticed due to lack of GI symptoms to more pathologic, with more GI symptoms such as pain or diarrhea.
While genetics gives us a start in understanding why one child suffers so much while another has no long-term problems, but genetics is only the beginning. Besides the microbes, toxins play the largest role. Metals such as mercury, lead, aluminum, arsenic, and others can enter the child’s body through air, skin, or the GI tract. Once in the body, they can either turn down the immune system, allowing easier entry for infections, or stir up the immune system and create autoimmune conditions. Synthetic toxins from plastics, pesticides, petroleum, herbicides, or other volatile organic compounds may turn the immune system upside down as well. Then we come to the biotoxins, especially mold but also some algae toxins and reactions to infections like Lyme or Bartonella. The mold toxins’ effects may lead to autoimmunity or add to the inflammation in the brain and throw gas on the brain’s autoimmune fire.
Parents who have lived through this (yes there are remedies to overcome this) or are living through it now report symptoms in their children such as the following:
Insomnia and other sleep disorders
Obsessions and Compulsions
Depression and suicide
Delusions and Hallucinations
For the parents and their children who have not found the root cause trigger and the contributing factors, they often express significant hopelessness. They may have seen numerous providers and tried countless therapies without any major resolution of symptoms. The next essay will share some insights from the recent conference in how to treat and restore health in these children. They can live healthier, more abundant lives when the root cause and contributing factors are addressed.
Sanctuary Functional Medicine, under the direction of Dr Eric Potter, IFMCP MD, provides functional medicine services to Nashville, Middle Tennessee and beyond. We frequently treat patients from Kentucky, Alabama, Mississippi, Georgia, Ohio, Indiana, and more... offering the hope of healthier more abundant lives to those with chronic illness.