Demystifying PANS/PANDAS Podcast

This episode is brought to you by ReligenDX:
ReligenDX offers the Folate Receptor Antibody Test (FRAT), which detects autoantibodies that block folate transport to the brain. It provides critical insights for families and practitioners navigating conditions like PANS, PANDAS, and autism. To learn more, visit ⁠fratnow.com⁠ or ⁠religendx.com⁠.
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A child who starts stuttering during a flare, or whose anxiety and OCD just won't settle, can leave a family wondering what is happening in the brain. Dr. Lindsey Wells is back on Demystifying PANS/PANDAS to share her newest research on folate receptor alpha autoantibodies, which can block folate from reaching the brain. This time, she studied children in her practice with vector-borne infections and found that symptoms alone couldn't tell us which children had the antibodies. We talk about why that makes testing worth doing, and how folinic acid differs from the folic acid found in most prenatal vitamins.
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Dr. Lindsey Wells, ND, FMAPS, is a naturopathic physician in Trumbull, Connecticut, who cares for children with PANS/PANDAS, vector-borne infections, and autism. She is a Fellow of the Medical Academy of Pediatric Special Needs (MAPS). She has published research on folate receptor alpha autoantibodies in children with PANS/PANDAS and, most recently, in children with vector-borne disease.
She lectures on cerebral folate deficiency for parents and practitioners and co-created Emephysis, a calcium folinate supplement, with Dr. Myriah Hinchey for families who cannot get a prescription.
Website: lindseywellsnd.com
Instagram: @lindseywellsnd
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Nancy O’Hara, MD, MPH, FAAP, FMAPS
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Families tell me the same thing all the time. “I thought it was just strep.” Dr. Richard Horowitz arrived at the same place from the other direction, over 41 years in medicine and more than 13,000 tick-borne disease patients. His 16-point MSIDS model maps what he calls six rivers of inflammation running into one ocean, and he describes the way most medicine handles it as a patient walking in with sixteen nails in their foot while the doctor pulls out one and sends them home. On Demystifying PANS/PANDAS we walk through all sixteen, and through the free Lyme questionnaire I use in my own practice almost every day. Then he tells me about the Alzheimer's biomarker case study he has just had accepted for publication. Whatever you name the illness, it is inflammation in the brain, and the work is finding out where it is coming from.
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About the Guest:
Dr. Richard Horowitz, MD is a board-certified internist and medical director of the Hudson Valley Healing Arts Center. Over more than thirty years he has treated more than 13,000 tick-borne disease patients from around the world. He is a founding member and past president of ILADS and ILADEF, has trained hundreds of healthcare practitioners, has consulted for government agencies, and has published on both classical and integrative approaches to vector-borne disease and COVID.
He developed the term multiple systemic infectious disease syndrome, or MSIDS, for the symptom complex arising from infections, inflammation and immune dysfunction. He is the author of Why Can't I Get Better? and How Can I Get Better?, and of Ending Chronic Illness, released October 13. He no longer prescribes directly, and now consults with and trains other physicians on complex cases.
Read more about Ending Chronic Illness, released October 13, at cangetbetter.com.
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Nancy O’Hara, MD, MPH, FAAP, FMAPS
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Michelle Pinto is a nurse, and when her two children were diagnosed almost ten years ago her first reaction was a professional one: how is this not covered by insurance. That question took her to the Massachusetts State House in 2019 to testify, then into a coalition of parents, an advisory council, and a PhD.
Her research is why I wanted her here. Most of what we know about these disorders follows the child. Michelle surveyed parents and caregivers, scoring family burden — a wider concept than caregiver burden: the parent who stopped working, the changed income, sibling fallout, stigma, and sheer uncertainty. Her survey filled faster than expected, and the open-ended questions surprised her. Every response had a real answer in it. She is planning a second paper on what families wrote when finally asked what they wished a provider knew.
We talked about the Look. Foundation, where she serves as a board member and where her family received a healing grant before she ever volunteered. Michelle says the foundation has given more than five hundred thousand dollars in healing grants to date, close to one hundred thousand last year, covering what insurance does not: testing, supplements, appointments, sometimes parking. There are also village hours: open support calls where a parent can simply listen without speaking, and where, Michelle says, the most useful information passes along. Then, the advocacy. Massachusetts has had an insurance mandate since early 2021, and a Department of Public Health advisory council in its third year. Two further bills are pending: a prevalence study to count affected children statewide, and a screening bill, so a sudden change triggers a look for infection at the point of care. Michelle's argument there is the one I want providers to hear. You do not need to be an infectious disease specialist to recognize this, and the evidence favors catching it early, not years later.
Her closing words are for the parents. If you feel a tug, follow it. Make the call that is hard to make. As she puts it, this illness makes you feel like you are not a good parent, and that is not true. I would add what I always say: it is treatable, it does exist, and it takes a village.
This conversation is educational and is not medical advice. If you are worried about your child, talk to a clinician who can see them.
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About the Guest:
Michelle Pinto, PhD, MSN, RN, is a registered nurse, nurse researcher and clinical assistant professor at the University of Massachusetts Dartmouth. She recently defended her PhD dissertation, Perceived Family Burden in PANS/PANDAS: A Descriptive Correlational Study, which makes her one of very few researchers examining what these disorders do to families rather than to patients alone.
She serves on the Board of Directors of the Look. Foundation, on the Massachusetts Department of Public Health PANS/PANDAS Advisory Council, and as a member of the Massachusetts Coalition for PANS/PANDAS Legislation, where she helped pass the state insurance mandate that took effect on January 1, 2021. Michelle is also the mother of two children who have lived with PANS/PANDAS, which is where all of this work started.
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Social Handles:
Look Foundation: lookfoundation.org
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Nancy O’Hara, MD, MPH, FAAP, FMAPS
Website: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.drohara.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
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I always say it takes a village, and this conversation is a good example of what that village sounds like. I sat down with my dear friend and colleague Dr. Christine Saba at MAPS, and we ranged across a lot of ground, starting with the talk she gave on refined sugar as a genuine burden on children's health. Chris is a pharmacist and a pediatrician, so she sees the biology and the whole child at the same time, and she is wonderful at making the science practical, from choosing whole foods over refined ones to something as simple as slowing down and eating together instead of on the run.
From there we went where this show always goes, to the children in front of us. Chris shared how she first came to understand that infections can sit underneath neuropsychiatric symptoms, and how her work with ILADS and MAPS has deepened her understanding of vector-borne illness and co-infections in kids. The theme we kept returning to is that it is never one single thing—it is the whole child and the whole system, and our job is to be detectives who look at all of it. If you are a parent in the thick of this, please hear the part that matters most: it is treatable, you are not alone, and we do not give up hope. We keep knocking until the right door opens.
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About the Guest:
Dr. Christine Saba, PharmD, MD, is both a pharmacist and a pediatrician, a combination that shapes how she thinks about children's health from the inside out. She serves on the boards of the International Lyme and Associated Diseases Society (ILADS), where she has worked to bring a pediatric lens to vector-borne illness, and she is a clinician within the MAPS community. Through her practice, Saba Integrative Medicine, she cares for complex children by looking at the whole picture: diet, environment, infection, and immune function, rather than any single trigger.
Learn more about Dr. Christine Saba and her practice at sabaintegrativemedicine.com
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Nancy O’Hara, MD, MPH, FAAP, FMAPS
Website: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.drohara.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
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Scott Antoine and I have been telling each other for years that we are brother and sister from another mother, because when it comes to anxiety and OCD in our children we tend to see the same thing. What he brought to the Medical Academy of Pediatrics and Special Needs this year was a framework I had not heard put quite this way. He trained in toxicology. In the emergency department, a poisoning gets three responses: get the patient away from the substance, support while it clears, and where one exists, give the antidote. He applies all three to anxiety, and adds a fourth, which is preventing the next exposure.
Most of this conversation is about reframing, which is not the same as talking a child out of a feeling. Scott is not trying to remove anxiety. He is changing what it means. There is the woman who could not tolerate a mask and reworked it into a scuba regulator. There is the eighth grader whose bullying registered as more damaging than a later assault, because, as he puts it, the brain decides for us what counts. And there is the moment he tells a child with OCD that neither three washes nor a thousand is the right answer, so the child gets to choose. Scott had OCD himself at sixteen, and he says the thing every child in that room needs to hear: your brain is not broken.
Then it gets personal for both of us. He goes to the basement when it rains to check for mold. I spent four sleepless nights running through infections when my son told me something was not right, and it turned out to be a girl. We name it as what it is, and we talk about the work of not putting our own fear onto our children. If you are in a support group that has told you every sniffle means the wall is coming down, that has not been our experience. It is treatable. It does exist. And it takes a village.
This conversation is for education only and is not medical advice. Any supplement, device or technique discussed should be reviewed with your child's own clinician before you try it.
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About the Guest:
Dr. Scott Antoine, DO, FACEP, ABOIM, IFMCP, is triple board certified in emergency medicine, integrative holistic medicine, and metabolic nutritional medicine. He trained in toxicology during his emergency medicine residency and spent years in the emergency department before moving into integrative practice. He now practices at the Center for Fully Functional Health in Carmel, Indiana, and is one half of The PANDAS Docs. He is the author of The Comprehensive Physicians' Guide to the Management of PANS and PANDAS and co-created an online course for parents who cannot get to him in person. He is also a PANS/PANDAS parent himself.
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Social Handles:
Website: thepandasdocs.com
Instagram: @thepandasdocs
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Nancy O’Hara, MD, MPH, FAAP, FMAPS
Website: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://www.drohara.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠
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