This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Friday, November 11, 2016

Medical Dream Team

This is a list of providers who are considered to be especially knowledgeable in areas relevant to my family's health needs and to people who may be following this blog.  I have not seen any of these doctors and am not endorsing them, I am keeping this list as a reference resource.  I will be adding to this list over time.  Some doctors are listed under more than one heading.

General

The NIH Undiagnosed Disease Network

National Jewish Health - (from website) "National Jewish Health is the only facility in the world dedicated exclusively to groundbreaking medical research and treatment of patients with respiratory, cardiac, immune and related disorders."

MAPS = Medical Academy of Pediatric Special Needs

MAPS Doctors tend to be the most educated about medical issues in people with autism and related disorders such as ADHD, Sensory Processing Disorder, etc.  This is a directory of doctors and other health care practitioners who have attended MAPS training conferences (this list is not an endorsement or recommendation, so you should check them out before working with any).

This page on the ARI (Autism Research Institute) website has suggestions for how to select a provider for your child.

Richard Frye, MD.  is a pediatric neurologist and Director of Autism Research at Arkansas Children's Hospital Research Institute.

Dan Rossignol, MD FAAFP  from his website "Dr. Rossignol has a special interest in autism spectrum disorders, PANS/PANDAS, cerebral palsy, and related neurological and developmental disorders as well as medically complex children and adults."

ME/CFS and other Neuro-Immune Disorders:

Dr. Nancy Klimas - is chair of clinical immunology at Nova Southeastern University and director of
The Institute for Neuro Immune Medicine.  This is a brief video of Dr Klimas talking about The Institute for Neuro-Immune Disorders, including the basic philosophy, types of research they are currently engaged in, and potential future research topics.

Dr. Richard Deth - is a researcher and professor of pharmacology at Nova Southern University. His research interests are focused on the role of oxidative stress and impaired methylation reactions in neurodevelopmental, neuropsychiatric and neurodegenerative disorders, including the important role of epigenetic regulation.

Nevada Center for Biomedical Research focuses on research into neuro-immune disorders including ME/CFS, autism, and fibromyalgia and the underlying immunological, inflammatory, mitochondrial
and other factors.

Stanford Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Initiative - they are leading the way in studying the role that immunological and infectious factors play in chronic diseases such as ME/CFS.

Steven Jacobson, Ph.D. - is a senior investigator at the National Institute of Neurological Disorders and Stroke with a specialty in viral immunology and neurovirology, with a focus on herpes viruses and their role in progressive neurological disease.

Paul Cheney, M.D. - is medical director of The Cheney Clinic in North Carolina and a leading doctor in the treatment of ME/CFS, in particular immune system involvement and cardiac involvement.  

Mito/Metabolic

Fran Kendall, MD. - one of the leading doctors in the US for mitochondrial and metabolic disorders.

Mark Korson, MD - is a leading metabolic and mitochondrial specialist.  More about him here.

Richard Boles, MD - "Dr. Boles practices the “bedside to bench to bedside” model of a physician-scientist, combining a very active clinical practice in metabolic and mitochondrial disorders with basic research as director of a mitochondrial genetics laboratory at the Saban Research Institute. Dr. Boles’ clinical and research focus is on polymorphisms (common genetic changes) in the maternally-inherited mitochondrial DNA, and their effects on the development of common functional disorders."

Robert K. Naviaux, MD, PhD - is an expert in mito and metabolic disorders and how they relate to the cellular danger response, and neurological disorders including CFS, autism, PTSD, Parkinson's, and more.

Michio Hirano, MD - is a neurologist who specializes in mitochondrial disease. From his bio-
"Dr. Hirano's research focuses on mitochondrial diseases and genetic myopathies. He is participating in the clinical trial of idebenone for MELAS patients. Together with Co-Principal Investigators, Drs. Salvatore DiMauro and J.L.P (Seamus) Thompson, Dr. Hirano is co-directing the North American Mitochondrial Disease Consortium (NAMDC)."

The Foundation for Mitochondrial Medicine Program at UAB - this is a new multidisciplinary center with the mission of developing new techniques for diagnosis and treatment of mito disorders.

Gastroenterology

Timothy Buie, MD - pediatric gastroenterologist with a focus on treating children with autism and other developmental disorders, as well as children with motility and allergic disorders that affect teh GI tract.

Alessio Fasano, MD - specialist in pediatric gastroenterology and nutrition with a particular expertise in celiac.  He is the director of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children.

Philip Miner, MD - G.I. doctor with an expertise in mast cell disorders and how they affect the digestive system.

Ikuo Hirano, MD - is a G.I. who specializes in EGIDs and seems well respected by his patients.

Mast Cell Disease, Eosinophilic Diseases, and Other Allergic Diseases:

J. Pablo Abonia, MD. - specialist in eosinophilic and mast cell disorders and immunodeficiency at Cincinnati Children's Hospital (sees adults too).

Lawrence Afrin, MD. - Leading doctor in US for Mast Cell Activation Syndrome.

Theo Theoharides, MD - Leading mast cell researcher and doctor with a particular specialty in the study of mast cells in the brain and their role in neurological and psychiatric disorders. 

Philip Miner, MD - G.I. doctor with an expertise in mast cell disorders and how they affect the digestive system.

Anne Maitland, M.D. - expertise in both Mast cell disease and it's connection to EDS/connective tissue disease.

Cincinnati Center for Eosinophilic Disorders - International leaders in researching and treating eosinophilic disorders including EGIDs.

Margaret H. Collins, MD. - is the leading pathologist for evaluating biopsies for eosinophils (and an expert with mast cells too) and is part of the CCED listed above.  

The Mastocytosis Center at Brigham and Women's is probably the best place to go if you have Systemic Mastocytosis.

PANDAS/PANS

Rosario R. Trifiletti, MD - pioneering specialist in identifying and treating PANDAS/PANS.


Susan Swedo, M.D. - is Chief of Pediatrics & Developmental Neuroscience Branch at the NIMH, and the researcher who led the team that first identified PANDAS.

Madeleine W Cunningham, PhD - 

M. Elizabeth Latimer, MD - practices child and adolescent neurology, is very knowledgeable about PANDAS.

Jory Goodman, MD is a psychiatrist who works with adults located in Beverly Hills - Refers to Dr. Richard Harris for immunology. From his bio on his site "A national authority in Psychiatry, Neuropsychiatry and Psychopharmacology, Dr. Goodman did the seminal research in the identification and treatment of Fibromyalgia. He is also a nationally recognized expert on A.D.H.D., Sleep Disorders and a multiplicity of Psychiatric, Neurologic and Neurosomatic disorders. His most recent research has focused on P.A.N.D.A.S."

EDS/Connective Tissue Disease/Rheumatology

Clair A Francomano, M.D.- molecular geneticist with expertise in Ehlers-Danlos Syndrome and other connective tissue disorders.

Paolo A. Bolognese, M.D. - one of only a few doctors in the US with expertise in atypical chiari presentations, cervical instability, and other neurological manifestations of EDS.

Fraser Henderson, Sr. MD. - one of the only other doctors to specialize in atypical neurological problems in patients with EDS.

The Medical Genetics division of the University of Washington Department of Medicine has several doctors who specialize in inherited connective tissue diseases.

Petra Klinge, MD, Ph.D - neurosurgeon with expertise in hydrocephalus, disorders of cerebrospinal fluid such as Spina Bifida, also with a focus on the most rare and complex disorders of the spine and nervous system.

Richard Jimenez M.D. - from his bio "Dr. Jimenez has a long history of clinical research and treatment in rheumatoid arthritis, systemic lupus erythematosus, osteoarthritis, pain management and other conditions."

Dr. Schoffeild, MD - she is apparently quite versed in EDS, as well as autoimmune disorders (rec'ed by a pharmacist at LMP hospital).  This entire clinic sounds very promising.


Other

P. Ashley Wackym MD - is an ENT/Otolaryngologist who specializes in finding and repairing tiny holes in the inner ear that can cause vestibular disorders, dysautonomia, and other problems that he can often correct with surgery.

The Stanford Center for Narcolepsy.  They are world leaders in researching, understanding, and treating narcolepsy.

Martha U Gillette, M.D. - is a neuroscientist doing pioneering research into circadian rhythms and how they are involved in various diseases.

Dr Claudia Miller, MD -  is an allergist/immunologist and a leader in understanding environmental illnesses and the role of toxic exposure and chemical sensitivity in chronic disease.

Carol Duffy, M.D. - is a professor of microbiology with a focus on herpes viruses and herpes infections (including encephalitis) in humans.

New Pediatric Dysautonomia center at UT 

Eric Lowell Singman, M.D., Ph.D. - is a professor of ophthalmology with expertise in neuro-ophthalmology, EDS, and the effects of traumatic brain injury on vision.

Alternative Modalities (non MDs)

Eve Prang Plews LNC, IFMCP has been highly recommended to me by other EGID patients.  She is trained in functional medicine, homeopathy, and nutrition.


Julie Matthews is a leading nutrition specialist for Autism Spectrum Disorders, ADHD, Sensory Processing Disorders, and related issues.

Mary Coyle, D.I. Hom. - is a homeopathic doctor specializing in homotoxicology and the treatment
of Autism Spectrum Disorders, ADHD, Sensory Processing Disorder, and related issues using homeopathy and other natural approaches.