Start at Chapter 1 – My life By Accident
Chapter 4 – The Key to PANDAS Treatment and Recovery
My intention last year was to continue sharing our family PANDAS journey and provide details on the step by step approach we discovered to reverse the symptoms caused by microbes like streptococcus.
… here is what really happened
It has been almost a year since I have posted a chapter about our family’s journey with PANDAS. Since our participation in the documentary Stolen Childhood, and after I posted the first few chapters of my Diaries of a Naturopathic Mom and Two Boys with PANDAS, our clinic has been inundated with children suffering with PANS/PANDAS.
One family’s story became 2 and then 10 and then hundreds and after months of hearing the trauma that these families have endured, I couldn’t continue to write about our boys. I was, quite simply, drowning in guilt. I will, hopefully, one day finish out the chapters and tell the remainder of our story.
How following the research of Dr. Derrick MacFabe and Dr. Claudia Morris saved Rowan’s life (and ours).
How we then lost our youngest son in massive regression into autism that years later we would discover was also caused by chronic infection. The details are important. When we thought we were dealing with autism, our family shared our story in this video on biomedical treatment of autism.
The story deserves to be told. For now, my guilt over not sharing that recovering from PANDAS is not only possible but probable keeps me from going back in time.
So, I will jump ahead for today’s diary.
Today I woke up and asked our youngest what he wanted for breakfast. He asked if I could help him make an omelette. A kid who had such severe ARFID (Avoidant Restrictive Feeding Disorder) that he would only eat cashews or cashew butter for YEARS!!!
Today I am thankful. During this time in quarantine, I have had a chance to see more of my kids and they are doing so well. After years and years of biomedical treatment, our kids are thriving.
So today, we are sharing the step by step approach to PANDAS RECOVERY with the hope that any family who is struggling can benefit from what we learned from our two sons with PANDAS.
We learned that PANDAS recovery required hard-work and persistence. We learned that recovery is not only a reality for our boys but for the hundreds and hundreds of patients that we support. The biggest clinical pearl I will every share is that PANDAS treatment and recovery depends on removing biofilm that is stuck to the intestinal wall.
So… let’s talk biofilm. Why do chronic infections persist? Let’s ask a world-renowned expert in biofilm to explain…
Biofilms are formed when microbes change shape and connect. Biofilms have two protective layers. The outside layer is a sticky substance called EPS. The inner layer is made up of minerals and metals. Some of these metals are toxic heavy metals that can come from environmental exposure.
Moms pass their toxic metals onto children during pregnancy and breastfeeding. Transgenerational accumulation of heavy metals means inheriting heavy metals from previous generations (great great grand-mother, to great grandmother to grandmother to mother to child).
Biofilms allow microbes to hide and evade both the immune system and anti-microbial agents (both botanical medicines and pharmaceutical medicines like antibiotics).
The microbial members of biofilms come from multiple kingdoms including fungi, bacteria, parasites and viruses. Viruses have addition protection from their own virome which can exist within a biofilm or on its own. This is why viruses are so hard to treat and contribute to significant shifts in immune functioning.
Natural Killer Cells require vitamin A to function. Their job is to kill microbes from all kingdoms. Viruses deplete vitamin A which is why one of the most important treatments to eradicate biofilms is cod liver oil. Vitamin A is a fat-soluble vitamin and needs to be given with a healthy fat to ensure absorption.
PANDAS RECOVERY – STEP ONE
Biofilm is “sticky”. Think about what happens when people have chronic sinus infections. The mucous is stick and gets stuck in the sinuses and it is hard to get out. The mucous can and does stick to the mucous membranes in the sinuses.
So where is the biofilm in PANDAS? It is in the largest reservoir in the body… the gut. The first step in PANS treatment is to identify the severity of FECAL LOADING which is basically like having clogged pipes.
Fecal loading is the amount of fecal matter that is stuck in the gut. The retained stool allows biofilms to persist and proliferate. Biofilms will attach and infiltrate the bowel wall. The immune system in the gut is directly related to the immune system in the brain and microbial chemicals very quickly travel from gut to brain causing the intense and overwhelming symptoms of PANS.
The good news is, fecal matter and biofilm is EASY to treat with safe, effective laxative therapies.
Your child and your family DO NOT have to live with the debilitating symptoms caused by PANS.
Please reach out for help if your child has diagnosed or suspected PANS… we are only a call or email away!