Episode #66
The Part Of PANS/PANDAS Nobody Has Been Measuring
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. - - - - - 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. - - - - - Social Handles: Look Foundation: lookfoundation.org - - - - - Nancy O’Hara, MD, MPH, FAAP, FMAPS Website: https://www.drohara.com Facebook: https://www.facebook.com/drnancyohara/ Instagram: https://www.instagram.com/nhoharamd/ LinkedIn: https://www.linkedin.com/in/nancy-o-hara-md-mph-faap-390781258/ - - - - - PODCAST Thank you for listening. Please subscribe and share. This podcast is produced by DrTalks.com https://drtalks.com/channel-growth/
