LENDRI PURCELL, Founder of FACTS – Families Advocating for Chemical and Toxic Safety; Vice President of Jonas Philanthropies
A year and a half ago, my quirky, spirited and brilliant 7-year-old son started to experience some very strange symptoms. He complained often about tingling in his hands and feet. And, he started to fall a lot, telling me that his legs “stopped working” from time to time.
I took Bodie to a doctor who wanted to do an EEG, and the results looked fine although they were not entirely valid since Bodie was not calm enough to enter a restful state. I refused the offer of an MRI until we had more information.
A doctor diagnosed a “leaky gut,” along with sensitivities to eggs, gluten, and dairy. We started him on the gluten-free diet and believe that was helpful. I requested that his heavy metals be tested, and we learned his arsenic level was very high. The truth is, we have never figured out the source of this. A staff member at the pediatric specialist health unit at the University of California, San Francisco, told us that people on a gluten-free diet often have high arsenic levels from their rice intake, but we were not heavy rice consumers. His levels were retested a few days later and they had gone down significantly. My son never played on pressure-treated wood, which previously contained arsenic until it was banned. (We are now alert for any foods that may contain arsenic or have been treated with arsenic-containing products, and are doing a re-test to check his levels.)
Tics, anxiety and phobias begin
Soon after this, Bodie started having very pronounced tics, both motor and vocal, including loud barking. Then things got even worse: my school-loving kid became school phobic. He was having panic attacks and at one point thought he was having a heart attack. On top of this, he had what seemed like never-ending sinusitis for almost a year, and he complained of intense neck pain.
I noticed Bodie had developed large, dark circles under his eyes. Meanwhile, new behaviors emerged. He stopped eating many foods he used to enjoy, and he was super picky about clothing textures. Also, the sensation of touching certain foods bothered him, he was having exaggerated sensory reactions. It seemed like even kisses felt like punches to him. It was so heartbreaking to watch. He was rarely happy.
During this time we saw lots of therapists, naturopaths, an occupational therapist, MDs at a local Kaiser Permanente medical center, and many other specialists, some with conflicting opinions.
After reading information on the Latitudes.org site, I insisted that he be tested for strep and, sure enough, although he had no overt symptoms, he and his brother (the carrier) both had strep. We treated the strep and found that the tics and behaviors improved a bit. We were also treating his leaky gut by avoiding certain foods, using supplements, and giving him lots of bone broth and gelatin (Great Lakes makes 3rd party tested products for this). We were seeing additional improvements.
The trouble was, though, that his sinusitis kept coming back, and this would trigger more tics and problem behaviors. We had a Cunningham panel done as an assessment for PANDAS. Results showed one borderline value, one highly elevated value, and the rest of the testing was normal. He received a diagnosis of PANDAS and one doctor mentioned IVIG, but we did not go that route.
Finding the help we needed
We found a PANDAS expert who recommended a nutritional/supplemental approach and referred us to local practitioners, including a chiropractor. After having seen so many specialists, receiving a possible PANDAS diagnosis, and trying many different therapies, I took Bodie to the recommended chiropractor in Sebastopol, California.
After a thorough evaluation, the doctor noticed an enlarged lymph node on the side of my son’s neck where he had been experiencing pain. He diagnosed a severely infected root canal and told me that he thought this was the source of the inflammation that had been aggravating him and affecting his nervous system.
We had just been to a pediatric dentist a few months prior, and were told that his X-rays looked fine. But now, we quickly went the following day for a second opinion with my own dentist. The diagnostic X-ray showed a large and severe abscess under a root canal that Bodie had received at 2.5 years. (I must point out that yes, we do brush well!). My dentist said he thought he’d had this infection for many months.
Apparently, there is a high fail rate for root canals in kids, especially in very young children. While it was recommended for a problem my son had at the time, it seems it is now a more controversial approach. In any event, my dentist removed the infected tooth on the spot. The roots were terribly decayed and had mostly eroded away.
To my joy, within three days—literally—the never-ending mucous Bodie had struggled with for a year ended, and he could breathe through his nose once more. (He actually had a scar under his nose from blowing it so often.) Within a week the circles under his eyes had faded dramatically, and just a few days later the tics were gone.
Our happy ending
We are going on four months now and my son remains happy and healthy. He is thriving, with no symptoms except for a little hyperactivity. We are on a low-gluten and low-dairy diet with a few supplements—and have no need for specialists. By the way, I had his genes analyzed, and apparently he has mutations that make it harder than normal for his body to detox from metals and pesticides.
Bodie has only had two episodes of tics since the dental procedure. These flares lasted only a few days, and happened right before each of his front teeth fell out. After giving him Motrin for the inflammation, the tics subsided. It is interesting, because on the PANDAS Facebook support pages, parents often write about seeing more tics and adverse behaviors when children are losing their teeth. Also, the prime age that kids lose their teeth is correlated with the onset of PANDAS.
I am curious about the possibility that inflammation in the mouth can be a trigger for tics. Is there a connection? I do not know, but I remain grateful beyond belief for my son’s recovery.
I will keep this article updated
The dramatic turnaround after finding the source of Bodie’s infection has been a huge relief and incredible to witness. At the same time, I realize that my son may be susceptible to having a neurological reaction to different types of infections, and we will be on guard for that. I intend to send updates for this article if we run into any significant difficulties down the road, or make new discoveries that might be of help.