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A Functional Medicine Desktop Reference
on Basal Ganglia Encephalitis
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Copyright © 2022 by Dynamic Professional Women’s Network, Inc.
All rights reserved. No portion of this book may be reproduced by mechanical,
photographic, or electronic process, nor may it be stored in a retrieval system,
transmitted in any form, or otherwise be copied for public use or private use
without written permission of the copyright owner.
Published by DPWN Publishing
A division of the Dynamic Professional Women’s Network, Inc.
1879 N. Neltnor Blvd. #316, West Chicago, IL 60185
www.OvercomingMediocrity.org
www.OurDPWN.com
Printed in the United States of America
ISBN: 978-1-939794-26-0
PANS/PANDAS Clinical Membership and Mentorship with
Dr. Nancy O’Hara:
• Self-paced online learning modules with brief videos and detailed
lectures.
• Trademarked Functional Medicine Flow Chart.
• Monthly virtual individual and group mentoring sessions.
• Quarterly Live Q & A.
• In-office and virtual case review, troubleshooting, and
examination.
Please visit www.drohara.com for more information.
Caring for children with neurodevelopmental and neuropsychiatric
illnesses has been my passion for over 25 years. It all started with one
child and my introduction, during a time of my own personal infertility,
to Dr. Sidney Baker: mentor and friend, one of the most brilliant men I
have ever met, and the grandfather of personalized, functional medicine.
I am forever grateful to him.
As with everything in caring for our children, it often takes a village.
In my practice and in this guidebook, that includes my incredible and
compassionate colleagues, notably Lindsey Wells, ND. I would not be
able to help the children with PANS/PANDAS in our practice, continue
to learn from as well as teach others, let alone remain balanced myself,
without the support of my colleagues and entire staff.
I would also like to thank my co-author and wing person on this
project, Sarah Ouano, ND, who has edited and co-written this guidebook
with aplomb and kept me on task throughout this process. I would like to
thank all the powerful and compassionate women in my life: my family,
my friends, my readers, including Gabriella True, Kelly Barnhill, and
Cathy Witkos, and my mom, who has always been my role model for how
to live this journey with compassion and grace. Finally, I would like to
thank the students and staff with whom I have worked and aided in
bringing this project to fruition, particularly Shannon Wu, Yueh Qi
Chuah, and Emily Walsh, for their tireless work on citations and more,
and to Peter Riley on the Neurotherapy Chapter.
Finally and most essentially, I would like to thank the three most
important men in my life: my father, my husband, and my son. My father
has contributed immeasurably to my professional development and to this
book. My husband has given me balance, perspective, and his
never-ending support and unconditional love in the pursuit of all of my
passions and my life. And from start to finish in my career and my life,
even before he was conceived, my son. He is my inspiration and
motivation for all that I do and all that I am. He is a person with more
character, compassion, and strength than anyone I know. More than the
gratification of my work as a doctor, mentor, and now author, I am most
proud to be his mom.
Thank you.
I’ve been in integrative medicine for well over twenty years. I started
my career as a partner in a primary care pediatric group but had previously
been a teacher of children with autism and had a great affinity for them.
In my first few years of general practice, I met Noah, a four-year-old boy
who presented with asthma, allergies, and autism. He was not speaking.
He and his family had gone away on vacation, where he contracted a
diarrheal illness. His parents called our office and spoke with the nurse,
who advised them to go off dairy because the dairy might be making the
diarrhea worse. He went off dairy and began talking. Once the acute
illness passed, his parents incorporated dairy back into his diet, and just
like that, he was once again not speaking. Noah’s mom started and
stopped dairy several times over the next few months, and each time, the
same results. His mother called me and urged me to look further into
nutrition and behavioral disorders, and at that time, I thought, “Diet
change behavior? Dietary changes ameliorate Autistic symptoms? No
way!” Still, the anecdotal clinical evidence was compelling, and ever the
investigator, I dug in.
I was immensely fortunate at that time in my life to meet my mentor
and colleague, one of the grandfathers of functional medicine: Dr. Sidney
Baker. For years, I absorbed all of his teachings and the plethora of
wisdom of many others. I began seeing success in caring for children with
Autism Spectrum Disorder by addressing foundational imbalances and
insufficiencies, always looking for underlying infectious, immunologic,
metabolic, or mitochondrial problems that they may have. I was always
asking, “What does this child need that he or she is not getting?” or,
“What is this child getting too much of that needs to be removed?” I was
finding my stride by focusing on all of these aspects of health. Then, I
met Matt. Matt presented as a ten-year-old child with a sudden onset of
seizure-like tics. His family described his illness, saying, “Matt will be
quietly sitting and doing homework, then thrown instantly to the ground,
appearing as though he was having a seizure, his tics are so violent and
progressive.” In addition to these terrifying tics, he developed a sudden
onset of OCD and anxiety, and his family began to see regression in his
thinking and ability to complete assignments at school.
Matt was born through spontaneous vaginal delivery from a healthy
pregnancy, was breastfed, and had a healthy lifestyle. He ate an organic,
gluten-free, and casein-free diet. Although he had a few sensory
processing issues, he was otherwise a neurotypical child. Before
presenting to my office, Matt developed a viral illness with cold/upper
respiratory tract symptoms. That same week, he developed a
culture-positive Strep Throat and was bitten by a Lyme-positive tick. All
of the bloodwork immediately following this infection was normal.
Although he initially had negative Strep antibodies, these titers were
elevated six weeks after his initial presentation.
In addition to these eventually positive Strep titers, we found an
elevated ANA, low vitamin D, low zinc, and a positive Lyme Western
blot six weeks after the infection. He was treated for three months with
prescription antibiotics, then was switched to an herbal rotation of
antimicrobials. During the entire course of treatment, he supplemented
with zinc, vitamin D, essential fatty acids, and other natural
anti-inflammatories. We also chose to incorporate helminth therapy as an
alternative method of managing the autoimmune reaction and promoting
immune tolerance. After three months of treatment, his tics resolved, but
he was still experiencing OCD and anxiety and continued to require
accommodations at school. These remaining symptoms were just
attributed to “who he was,” and his family learned to live with their new
normal.
Years later, he presented with a “rash” that appeared as stretch marks
that blanched and did not follow a normal dermal line. Instantly, I thought
Bartonella, and sure enough, Matt tested positive for this Lyme
co-infection. He was immediately started on a protocol of Azithromycin,
Bactrim, Artemisinin, and other antimicrobial herbs, including Japanese
knotweed. When these were started, his tics became much, much worse,
similar to what he had experienced at age ten. Although it seems
counterproductive, this abrupt flare in symptoms and even return of old
symptoms is known as a Herxheimer reaction or “healing crisis,” and it
is not uncommon when beginning an antimicrobial protocol.
The tics continued for about six weeks after the initial onset of
treatment but eventually eased, much to my relief. Interestingly, the
resolution of the tics with this antibiotic and herbal protocol brought
about another change—th
since he first presented at age ten resolved, as did the need for
accommodations in school. In retrospect, I assume that he had been living
with a Bartonella infection for many years, with symptoms only
presenting as OCD, anxiety, and learning differences. You can read more
about Matt in the case studies at the end of this guidebook.
Both Noah and Matt were keys in my learning to correctly and
successfully diagnose and manage children with neurobehavioral
disorders. With Noah, I learned how to support a child’s health by
strengthening his ability to fight disease and maintain homeostasis
through diet and nutrition, in addition to appropriate therapeutic
interventions. With Matt, I learned that infectious disease is multifaceted
and complex and that there can be multiple culprits playing a role. I
learned to always ask, as Dr. Sid had taught me, “Have we done enough
for this child?” When caring for susceptible individuals, we need to create
a strong foundation for health in order to build resiliency. We need to
continually monitor for multiple types of infectious, autoimmune, and/or
metabolic issues in order to help each child find a healthy and balanced
life.
Looking back… it’s almost difficult to place myself back in a time
when my mind operated completely within the conventional, allopathic
model. Particularly when caring for children with neurobehavioral
disorders, we need more options than those available to us via the
prescription pad. As Dr. Sid always reminded me: follow those who seek
the truth but flee from those who have found it. Listen to each family and
child to help them reach their fullest potential using a holistic and
whole-child approach. I’m not here to say that every child will recover
completely from whatever they have been diagnosed with, but functional
medicine may be a small piece of the puzzle. It may even be a large piece
of the puzzle, as it was for these children.
Being entrusted to care for these children and seeing firsthand the
difference that integrative, functional medicine makes was the lightning
rod that changed my way of thinking about healthcare. We have to treat
the person, not the disease, and in treating the person, we have to look at
the entire person, including the things that contribute to a strong
foundation upon which we can build.
What is it that these children need to get? Perhaps better nutrition,
cleaner air, or more potent antioxidants. What is it that these children need
to get rid of? Let’s consider chemical toxins, allergens, infections, and
inflammation. We must investigate how each one of these aspects of
health can affect an already compromised system like those of our
children. I fully believe that working with children and families in an
integrative, functional medicine model is the solution to this complex
puzzle.
Functional Medicine: a New Frontier and Old School Wisdom
For many of us in the conventional medical world, words like
“integrative,” “holistic,” and “natural,” when linked to healthcare, can be
more than a bit taboo. I was trained in the world of evidence-based
practice through the example of my parents, general practitioners in my
home state of West Virginia. In my youth, I believed that nutrition, herbs,
and even homeopathy had no place in modern medicine because I never
saw the research. The truth is, I never saw the evidence of these modalities
having profound and lasting effects on the body because I wasn’t looking.
Working with Noah and his family inspired me to look into this world for
myself, my own family, and for all the families with whom I work. My
world completely opened to a new way of looking at the human body,
complete with a new set of tools to complement my own skill set.
Just because I came to a mind-blowing revelation about functional
medicine more than two decades ago does not mean that this concept is
at all new. Naturopathic principles—seeing the body as a whole and
perfect system, creating a strong foundation for health through nutrition
and lifestyle, utilizing natural substances as much as possible, and
teaching the patient to care for himself, to name a few!—have been
documented as early as the 16th century. So much of what I practice is
rooted in these concepts. While I am not a naturopathic doctor myself, I
am proud to integrate my practice with naturopathic doctors,
dietitians/nutritionists, and other allied health professionals because I
know this approach provides the best care possible for my patients.
Many doctors and families see great success with conventional
medicine alone, which is fantastic! Still, others go down the conventional
route and do not see the same success. I wrote this guidebook for those
families and practitioners eager to learn more but unsure of where to turn.
I hope our practice and this guidebook bring the best of both of those
worlds together to help each child. I want to provide a straightforward
framework
to
diagnose,
assess,
and
treat
children
with
neurodevelopmental disorders, specifically PANS/PANDAS and Basal
Ganglia Encephalitis. I also want to bring this debilitating but treatable
disease to the forefront so that families affected by it can find a
community where they feel supported and can easily seek excellent care
for their children.
In true integrative style, this book is designed to help you approach a
case using in-depth history taking, thorough physical examination, and
conventional and functional lab testing; analyze your findings both
allopathically and naturopathically; develop an individualized treatment
plan that takes into account not only the diagnosis but the unique needs
of each child. This is no small task, but I truly believe that once you begin
to see a child through an integrative, functional medicine lens, your
ability to help more families will skyrocket, and your passion for the
medicine you practice will follow suit.
I am under no delusion that as a pediatrician or as a parent/caregiver
of a child with neurobehavioral disorders, you have plenty of time to sit
and read a textbook all about PANS/PANDAS or Basal Ganglia
Encephalitis! That’s why I decided to organize this book as a field guide,
with straightforward chapters on the most common symptoms of
PANS/PANDAS that I see, a breakdown of tests, diagnoses, and
treatment options to consider for each, and a solid number of case studies
for you to read through. I want you to be able to reference this book
quickly during a busy workday or in small doses after your long day is
complete and your children are in bed each night. Although
PANS/PANDAS can be an overwhelming illness, with proper diagnosis
and appropriate care, it is treatable and manageable, and I can help.
For practitioners, this book should efficiently guide you through an
initial assessment, diagnosis, and treatment of a child. It will also help
you know how, when, and to whom you should refer. Finally, it is meant
to be the initial foundation for a mentoring relationship between you and
our practice. For more information on our mentoring programs, access to
lectures, videos, and live Q & A, refer to www.drohara.com. I hope to
help you make your practice a place where these children and their
families can heal.
Thank you for giving me the opportunity to share my hard-earned
