It would be really easy to sit back and blame just about everything and everyone for the little man getting sick. But I learned some time ago that blame will get you nowhere fast.
Lately however, I have had lots of parents begin to ask the questions I have been asking for some time. Why him? I don’t mean in the lamenting, desperate sense. I mean, why was he affected when from conception, we kept him as healthy as possible? I ate a very healthy, diverse diet throughout pregnancy. He was born at home with the assistance of a loving midwife with very mild complications. He was breastfed until two. He ate plenty of organic fruit and vegetables and had loads of time outdoors in the dirt. I could continue, but am fairly certain you can see the trend.
As I have said before, I am not a doctor. Given my background as a chiropractors’ wife and a health and wellness writer and ghostwriter, research in this arena is definitely not foreign to me. I have read until my eyes crossed and I have developed a theory that seems to jibe with just about everything I have read, though it doesn’t seem to be widely accepted. From what I gather, some of this is a political move to get PANDAS recognized in the DSM…but that’s another story.
Now, here’s where I am going to go off the deep end. I don’t believe PANDAS is caused by strep. In fact, I don’t believe any of the pathogens that these kids carry are causative factors. Let me take a step back and explain. In my experience on several discussion boards, PANDAS kids almost never only have strep. They have Lyme, Bartonella, Babesia, Epstein Barr and the list continues. My first question is, “Why?” Why wouldn’t they just have strep present if the strep is the cause of their disorder? This, in my opinion, is a very clear indication that the strep is not the causative factor, but merely ONE symptom trigger. But the pathogens are attracted to these little bodies for a reason. I believe the answer lies in a combination of factors which may not be detrimental on their own, but together, create the perfect storm.
The following is a partial list of these factors:
1. Toxic Soup
We live in a world that is much more toxic than when I was a child, and infinitely more toxic than when my parents were kids. They are exposed to toxins in the womb as moms lather on make-up, lotions, potions, and sunscreen, eat pesticide-laden and genetically-modified food, breathe air filled with pollutants, sleep on matresess filled with toxic materials, and the list goes on and on. Even for a mom who tries to be conscientious, it is virtually impossible to live in our modern-day world and not be exposed to these things. The toxic load makes itself known mostly in our most vulnerable populations, and it is showing up BIG TIME in our kids.
2. Genetic Mutants
When I was 17, I contracted Epstein-Barr virus (commonly known to cause mononucleosis). I was out of school for nearly 3 solid months and even when I returned, I still felt terrible. Honestly, I do not think I have ever felt the same. After mono, I suffered several ailments from multiple, massive sinus infections to toxic shock syndrome to fainting spells to adrenal fatigue. What I did not realize was just how intimately all of these things were connected and how they also, could have contributed to my son’s health.
When I asked my doctor about ridding myself of EBV, I was surprised to hear that it wasn’t something I was ever rid of, but rather, that my body would learn to adapt to it. At 17, I didn’t really understand the ramifications of this. What is interesting is that doctors believe about 90 percent of adults carry EBV, but most are completely asymptomatic. So again, why did it manifest as mono in my system?
I believe my EBV was a product of a depleted immune system caused by a series of extreme stressors in my early teen years and I suspect was worsened by a genetic mutation called MTHFR. I suspect little man also has this mutation. In fact, we have sent away for genetic testing (www.23andme.com) to be sure, however the wait for results is rather long. Though geneticists aren’t entirely certain, they estimate that as much as 40% of the world population has this or some other mutation and it isn’t anything new. This specific mutation however, can reduce the methylation cycle to only about 20% efficacy. The methylation process is crucial for the body’s ability to detoxify and fight of pathogens. Essentially, with 40% of the population running around with MTHFR mutations, and genes not changing much over the last umpteen years, we have to look at what did change. This is where I refer you back to number one and allow you to connect the dots.
3. Dental Visits
As with other PANDAS kids, dental visits were a HUGE trigger and ultimately, what worsened his condition exponentially. Last year, little man lost no less than 6 teeth, had one tooth pulled, had a cleaning, had a cavity filled (with enamel), had that filling fall out, and had to go back and have it re-filled. Have you ever heard a dentist ask you or someone else to take an antibiotic prior to your dental visit? This is especially common among the elderly population. Why?
Well, dental work can often cause dementia-like symptoms as well as cause the elderly to become extremely ill. Guess what? It isn’t just the elderly who are affected. The mouth is a breeding ground for pathogens. When the gums are opened in any way, this gives those pathogens a direct route into the bloodstream causing a whole host of issues.
I am not suggesting that dental visits be shunned, but perhaps we need to look at many procedures a little bit more carefully before deciding that we have no other options.
When our son was in a preschool program, his teachers were in awe of what he ate for lunch. In lieu of the traditional sandwich and chips, etc. he arrived with sushi, seaweed salad, and fruit. When our weekly produce box arrived, he would anxiously help me carry it in and grab a head of cauliflower to munch on. He ate pretty much whatever we fed him and without any complaints.
But as his symptoms became more severe, he began insisting that he couldn’t eat the majority of his usual favorites. He became more and more selective with his food and would scream and rage until we fed him something he would eat. I will admit that I began feeding him separately to avoid the meltdowns. Eventually, the only thing he would eat was bean and cheese burritos from a taco shop. At this point, he was too far gone for me to do anything until I understood what was causing these behaviors. So…while I don’t believe food was a causal factor in the beginning, I believe his regression caused his picky eating, which only served to worsen his gut.
5. Lack of Routine
In 2012, we sold all of our belongings and set out on what was to be the adventure of a lifetime. It was. We spent 9 months as bohemian backpackers and loved (almost) every minute of it. We have no regrets. I do feel however, that had we made a few different choices, we would not have caused ourselves (yes, I am including little man) so much stress towards the end of our journey. As he had contracted PANDAS at the outset of our travels, we attributed much of his behavior to feelings of homesickness. As his symptoms worsened, we thought he was merely ready to head home. He didn’t want to leave our hotel rooms, etc. for the last 3-4 months of the trip, which made travel exceedingly difficult. Though I am certain we made the right choice by coming home early and I don’t wish anything different, I believe if we had been living a more routine lifestyle at the time, we would have more easily recognized the signs that something was most definitely wrong.
Calming The Perfect Storm
While I recognize and appreciate the efforts and advancements made by many doctors in the PANDAS field, I think that sometimes the educated mind can cloak reality. It isn’t that I believe they are moronic (I don’t) but that they are looking at these kids with a clouded lens. From an epidemiological perspective, one must look to the cause to find a cure. But what if the cause is systemic rather than pathological? What if we are creating a generation of kids with increasingly depleted immunological systems that simply cannot thrive in our toxic world? What if we have only seen the tip of the iceberg?
I do not believe PANDAS is going away anytime soon. In fact, I believe it will be the new diagnosis to make news headlines due to the “rapid increase” in diagnoses. *Note that as of this writing, there is no listing in the DSM for PANDAS.* I sure hope I am wrong.
Hugs and Healing,