The Heartwood Program for PANS PANDAS

Announcing The Heartwood Program –

Dr. Susan Swedo’s Consultation Practice!

ASPIRE is pleased to share news from Dr. Susan Swedo, ASPIRE ex-officio Board Member regarding the opening of her new consultation practice in Bethesda, MD. Please note, that due to recent changes in telehealth rules, families won’t have to travel to the Heartwood Program’s offices in Bethesda, Maryland, but will be able to do video consultations in a HIPPA-compliant video “conference room.” If you know of a family who might benefit from a consultation, please send them to the PANDAS/Heartwood Program’s website, where they can fill out a “Service Request Form.” Heartwood Program.

About The Heartwood Program

The Heartwood Program’s PANS PANDAS Consultation Practice is a multidisciplinary team of professionals led by Dr. Susan Swedo, one of the world’s foremost experts on PANDAS and PANS. Dr. Swedo will be joined by Dr. Shari Thomas or Dr. David Driver, child psychiatrists, and Ms. Krystyn Akers, a behavior therapist. The team brings together a broad range of skills, knowledge, and sensitivity to provide comprehensive PANS/PANDAS evaluations, diagnostic clarity, and state-of-the-science treatment recommendations for children and adolescents up to age 18.

In an effort to serve the largest number of patients and families, The Heartwood Program provides consultation services only. All treatment recommendations must be implemented locally, by the child’s primary care provider, with ongoing guidance from Dr. Swedo and colleagues.

Service Overview

After families submit the Service Request Form, the Heartwood Program staff will contact them to provide information about the consultation process, fees, etc. Prior to receiving an appointment, families will need to complete a set of PANS/PANDAS questionnaires and medical history forms.

As soon as the Heartwood Program receives the completed packet and the child’s medical records, they will schedule the consultation. Once the visit is confirmed, the Heartwood Program team reviews all records received, works to obtain any outstanding or additional records and obtains collateral information from the referring providers (i.e., primary treatment team). If indicated, families may be asked to obtain additional lab work or studies in preparation for their visit.

The consultations will last approximately two hours. The child’s symptoms and clinical course will be reviewed together, and then Heartwood Program staff will provide their diagnostic impression(s) and specific treatment recommendations (verbally and in writing.) A block of time also will be allotted to answering the family’s questions and providing them with resources and additional information.

After the visit, Dr. Swedo and the consultation team will prepare a summary of the child’s illness, diagnosis, and treatment recommendations. The report will be shared with both the family and the treating doctor, and the Heartwood Program will remain available to ensure the successful implementation of the recommendations.

Service Request Form click here.

Contact Information
Phone – 301.970.4099
Fax – 301.970.4098
Address – 4350 East West Highway, Suite 201, Bethesda, MD 20814

Website

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Questions and Answers

Gabriella: Why did you decide to open a consultancy practice rather than a practice that provides treatment directly?

Dr. Swedo: A consulting practice allows me to be available to a larger number of patients. Our hope is that a comprehensive evaluation by skilled and PANS/PANDAS knowledgeable physicians will provide families with the “definitive” answer – is it PANS/PANDAS or not? And, perhaps more importantly, to provide practical guidance on how to help the child recover, whether his/her symptoms are due to PANS/PANDAS or another neuropsychiatric disorder.

Gabriella: Do you see patients who have not been formally diagnosed?

Dr. Swedo Absolutely! We’d love to see patients in the earliest stages of their illness, to ensure that they receive appropriate care as quickly as possible. We also recognize that there are a large number of children and teens who have a PANS/PANDAS diagnosis but aren’t receiving appropriate care – we’d love to hear from their families, as well.

Gabriella: If a patient is working with a provider, but that provider can’t order certain treatments, will you help them connect with a provider who will? For example, will you connect clients with an immunologist to get IVIG or a therapist for CBT?

Dr. Swedo: Yes. One advantage of our consultative service is that the treatment recommendations will be specific that local providers should be able to prescribe the therapies. We will also remain in contact with the family and provider to make necessary connections (such as referrals to infusion services in the client’s community) and to ensure that they haven’t experienced any obstacles to treatment implementation. If specialized treatment is required locally, we can provide help in obtaining those services as well – while we don’t have contacts in every community in the United States, we do have access to a nationwide network of practitioners and should be able to find appropriate care for children across the country.

Gabriella: If a family is working with a doctor who is not particularly PANS literate, will your office help educate them and get them up to speed? Do you think this is one way to educate more clinicians who are new to the field?

Dr. Swedo: Yes! Professional education is an important part of the consultation model. My colleagues and I will ensure that the primary care providers have all the information and knowledge required to provide the highest quality of care to the PANS/PANDAS patients.

Gabriella: Will you be able to see patients via telehealth after rule changes due to COVID?

Dr. Swedo: I am licensed in Virginia and Maryland, which has reciprocity agreements with dozens of states. So we are hoping that telemedicine will remain the backbone of the consultations. At this time, It isn’t possible to predict what State legislatures will do to re-tighten regulations, but many “stakeholders” are lobbying for continued Interstate access to expert care.

Gabriella: Does insurance cover the consultation?

Dr. Swedo: Partly. The Heartwood Program is an in-network provider for Blue Cross/Blue Shield and will submit claims for reimbursement on behalf of the families for the consultation services (administrative costs are not covered and will be “out of pocket.”) Prior to scheduling an appointment, families will receive a detailed explanation of the charges and options for payment. The Heartwood Program will assist with filing claims for reimbursement, but the family remains responsible for all payments.

Gabriella: Can you tell us a little bit more about your colleagues?

Dr. Swedo: Yes, absolutely. I will share their bios.

Dr. Shari Thomas is a child psychiatrist who has had a long-standing interest in PANS/PANDAS. After Dr. Thomas graduated from Georgetown University with her Bachelor’s degree in psychology, she received a research fellowship from the National Institute for Mental Health. For two years, she worked in a lab, which investigated the neurobiology of schizophrenia. She then went to Howard University College of Medicine and learned how to best serve underserved patients.

Dr. Thomas then received her general psychiatry residency education from Emory University, a program that prides itself on teaching both psychopharmacology and psychotherapy. She went on to complete her fellowship at Children’s Hospital of Philadelphia (CHOP) to better understand the treatment of psychiatric illness in children with concurrent medical illness(es). On graduation from fellowship, she stayed on at CHOP as a member of the consult team. She was also tasked with developing the curriculum for the fellows for their consult-liaison rotation.

Dr. Thomas always knew that she wanted to make her home in the D.C. metropolitan area, so she moved back here in 2014. For the last 18 months, she has been the director of the children’s inpatient psychiatric unit at Adventist Behavioral Health in Rockville. With her experience in several different clinical settings, Dr. Thomas has treated a whole host of different illnesses widely ranging in severity and treatment-responsiveness. Dr. Thomas believes that a multimodal approach is the best way to treat a child and that partnering with a child’s family is essential in making lasting progress.

Dr. David Driver is a child and adolescent psychiatrist and Director of the Healthy Foundations Group and Heartwood Program. Dr. Driver worked for Dr. Judy Rapoport in her schizophrenia research program at NIMH before joining Dr. Swedo’s PANS/PANDAS clinical research team.

Dr. Driver received his Bachelor of Science in Biology from The University of Texas at San Antonio and obtained his Doctorate in Medicine from The University of Saint Eustatius School of Medicine. He completed his General Adult Psychiatry residency at Georgetown University Hospital, Child and Adolescent Psychiatry subspecialty training at Children’s National Medical Center, and research fellowship at the National Institute of Mental Health.

Dr. Driver has been serving the Washington DC metro area since 2008. He has experience treating a wide range of disorders, including anxiety, depression, OCD, and ADHD. Although being a physician gives him the ability to prescribe medications, he does so conservatively. He has extensive training and experience in a number of non-pharmacologic treatments and therapeutic alternatives and conceptualizes medications as a tool to be used only when absolutely necessary to facilitate symptom relief while other interventions take effect.

Ms. Krystyn Akers received her Bachelor’s degree in Family Science and Human Development from the University of Maryland, College Park. After graduating, Ms. Akers worked as an early childhood educator until deciding to pursue clinical mental health counseling. She graduated with her Master’s in Counseling from Johns Hopkins University and joined the Healthy Foundations Group/Heartwood Program shortly thereafter.

Ms. Akers believes the client has a primary responsibility for themselves, as it is often our choices that propel us. Choice theory, which focuses on making better choices and forming sustainable relationships, is a frame through which Ms. Akers understands her clients and guides them towards their goals. Through building a therapeutic alliance in an honest and truthful manner, Ms. Akers creates an environment where clients feel safe and free to open themselves up.

Gabriella: Will you write a report or provide guidance to the primary doctor that can be used by families to help them get or improve services at school, i.e., recommendations for accommodations or goals for a 504, IEP, or Health Care Plan?

Dr. Swedo: Yes, all consultations will include not only a verbal summary and discussion at the end of the appointment but a written report that will include diagnosis, treatment recommendations and suggestions for needed accommodations. The Consultative Team will also remain available for questions that may arise as the therapeutic plan is implemented.