Presentation topics include:
"Medical Child Abuse Accusations and the Rare Disease Patient"
What is medical child abuse, why are accusations of medical child abuse increasing in the United States, and why are families of children with rare or controversial diseases at increased risk of accusations? What are some of the care situations that elevate the risk of an accusation against families, and what can parents do to protect themselves and their children?
"Medical Ethics for Patients and Families"
An introduction to how medical providers make decisions in patient care, how medical decision-making differs between pediatric and adult care, and how patients and families can use this information to participate more effectively in medical care, and collaborate more successfully with care providers.
"Keeping safe in a medical setting; Protection strategies"
Living with a complex disease or one that is rare or not well understood has many challenges, including navigating a complex health care system that is only growing in complexity. However, situations sometimes arise in which mistrust enters the patient-doctor relationship, either around the symptoms or the diagnosis, and that can lead to medical and legal complications that interfere not only with a patient’s management plan but also his/her very wellbeing. This talk reviews some of the causes and trigger factors that lead to mistrust, and provides some guidance in how to prevent or ameliorate such a difficult and potentially dangerous situation. A role-playing session provides the opportunity for participants to apply strategies learned during the talk.
"Navigating the 4Ms: Mitochondria, Mental, Munchausen, and Multi-factorial Disease"
This talk will explore mitochondrial disease as a multifactorial condition that has many genetic and environmental factors leading to disease, but often not a single major "cause". Intermittent dysfunction of nerve cells throughout the body can lead to "functional" issues such as dysautonomia, pain, GI dysmotility and fatigue, while dysfunction of nerve cells in the brain can lead to "mental" or "psychiatric" issues such as depression, anxiety, OCD, and autism. Add in the complexities of mitochondrial genetics, intermittent disease manifestations, and the presence of varied disease in relatives (such as the mother), and there is a "perfect storm" for skepticism among health care providers and others. How can one navigate the complexities to arrive at a consensus diagnosis and treatment plan?
"When the Doctor says, "It's all in her head ...", What can Patients and Families Do?"
Review of common symptoms associated with mito/EDS (primarily dysautonomia). Explanation of how these symptoms may be ascribed to emotional problems only (e.g. anxiety, depression, “stress”) and how this may sometimes be correct, but often isn’t. Exploring how (mis)diagnosis is potentially traumatic, disrupts relationship, generates further stress, exacerbates problem, may lead to MCA allegation
We will learn strategies for responding, such as, not taking offense, considering possibility of stress and potential value of MH consultation, seeking help for underlying dx of problem, and appropriate rx.
"Preparing for Emergencies"
A review on how patients can prepare for a visit to the emergency room by building packets that include needed medical information, being sure to have a health care proxy in place, what they can do to help local emergency personnel understand their illness, and more.
"The Spectrum of Medical Child Abuse and What is Happening Across the Country?"
Dr. Boles will present (anonymized) cases from his own experience in 25 years of clinical practice as well as being a Medical Expert in courts across the country as these cases are litigated. What do physicians and families do that sometimes lead to excessive medical care? What do families do that might trigger an investigation? What are the avenues that can intervene successfully in the process short of filing an accusation, and short of a trial? What kind of cases go to court that do not get press coverage? What are the outcomes?
"Chronic Pain - How to Talk to Your Doctor" - The talk will focus on how to discuss pain issues with your physician, understanding the complexities of finding the right care
"Psychological Profile Contrast and Similarities Between Rare Disease Families and Munchausen Perpetrators"
Learn about difficulties physicians, social workers, child protection workers and other care team members face when distinguishing between families dealing with rare, complex disorders and children who are victims of Munchausen Syndrome by Proxy or Medical Child Abuse.
"How to Get the Most Out of that Appointment with a Specialist You've been Waiting for for Months to Years"
How to Organize for Your Particular Appointment
How to Organize and Keep Track of Your Personal Records
“Advocating for Children When Faced With the Unknown” - Abstract pending.