TCAPP Think Tank
TCAPP’s Pediatric Think Tank annually brings together esteemed pediatric and adult medical experts from across the country to share ideas and strategize how to offer better treatment.
These Think Tanks get everyone together in one room for the discovery of common ground. Dr Chopra, a member of the TCAPP Medical Advisory Board states “We need to educate each other from our different perspectives and training so we can find our what works and what doesn’t, what we know and what we need to know.”
Our goal is to generate a consensus statement to guide treatment of kids around the country and to guide forces to conduct multi-center clinical trials to test new therapies and treatments.
This important TCAPP initiative can’t happen without your support. Please consider donating to the TCAPP Think Tank fund.
2013 TCAPP Think Tank Video Lectures
Title: Ehlers-Danlos Syndrome: A Multi-dimensional Disorder
Author: Clair A. Francomano, M.D.
Harvey Institute for Human Genetics
Greater Baltimore Medical Center
This lecture, given by one of the world-renowned geneticists of Ehlers-Danlos, discusses the various types of Ehlers-Danlos Syndrome and the systems that can be affected. These include disorders of the musculoskeletal, dermatological, neurological, cardiovascular, gastrointestinal and immunological systems. It also goes into the secondary pain conditions that can occur due to Ehlers-Danlos Syndrome which include various types and genres of headaches, muscle pain, and neuropathic pain.
Title: Conversion Disorder & Somatization Disorder
Author: Richard Barnum, M.D.
Private Practice of Psychiatry and Previously Forensic Psychiatrist for the State of Massachusetts.
This lecture addresses the true definitions of Conversion Disorder and Somatization Disorder in the past DSM and the current DSM and how kids with Ehlers-Danlos are commonly misdiagnosed with these psychiatric disorders. It further explores the actual psychological support needed by patients with Ehlers-Danlos Syndrome and how that help can be impeded with misdiagnosis.
Title: Pediatric Pain 2013 …. Connecting the Dots
Author: Pradeep Chopra, M.D.
Assistant Clinical Professor at Brown Medical School and Director of Pain Management Center of Rhode Island
This lecture addresses the common pain syndromes seen with Ehlers-Danlos Syndrome, mitochondrial disorders and the overlapping of RSD/CRPS. It discusses the various effects to the body (such as dystonia, muscle spasms, gastrointestinal issues, etc.) and the different medical options out there both off-label and known.
Title: Neurosurgical Problems with Ehlers-Danlos Syndrome
Fraser Cummings Henderson, Sr. M.D.
The Metropolitan Neurosurgery Group
This lecture addresses the various mechanical stressors brought on by Ehlers-Danlos Syndrome and possible neurosurgical interventions that may alleviate some of these stressors. It discusses the mechanical abnormalities such as Cranio-vertebral instability, Chiari, Atlanto-axial instability, Vertebral Instability, Occult Tethered Cord, Jugular venous occlusion, and much more. It then goes into the details of possible surgical solutions to the complicated mechanical stressors.
Title: How Ehlers-Danlos Syndrome Affects Digestion, Nutrition, Bowel Function, and Gut-Related Immune Function
Author: Heidi A. Collins, M.D.
Heidi A. Collins is a Physiatrist with a Special Interest in Ehlers-Danlos Syndrome as both she and her children are affected by it
This lecture addresses the fact that the entire gastrointestinal system is affected by Ehlers-Danlos Syndrome. It discusses how the connective tissue abnormalities can make the gastrointestinal tract sluggish, painful, leaky, and inflamed. How the autonomic dysfunction seen with Ehlers-Danlos can cause motility disorders and how structural abnormalities can affect absorption, trigger the immune system and cause a cascade of events of inflammation and allergies.
Title: Ehlers Danlos Syndrome and Dysautonomia
Author: Jean Teasley, M.D.
Neurologist and Palliative Care Specialist at Virginia Commonwealth Hospital
This lecture addresses the dysautonomia conditions seen very commonly with Ehlers-Danlos Syndrome such as gastroparesis, orthostatic intolerance (OI), IBS, headaches, and many more. It also discusses the various treatments for each disorder and why they might help. Finally, the possible link and overlapping signs of dysautonomia and Ehlers-Danlos Syndrome and mitochondrial disorders is discussed.