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About Autism and Mito
Information and support for families seeking information about the connection between ASD and mitochondrial dysfunction
MitoAction is pleased to offer the following support services for families seeking information regarding the link between autistic spectrum disorders and mitochondrial disease.
Moving forward, we will have quarterly call topics relevant to ASD and Mito. This call will be an hour and a half long and there will be an opportunity to ask questions at the end.
These calls generally will take place the second Tuesdays of January, April, July and October at 12:30 p.m. EST.
To participate in this resource-share by telephone, please call 1-866-414-2828 and enter code 017921# at the prompt.
The next call is:
Jan. 17, 2017
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections; PANS is short for Pediatric Acute-onset Neuropsychiatric Syndrome.
According to the National Institute for Mental Health’s website:
“A child may be diagnosed with PANDAS when:
- Obsessive compulsive disorder (OCD) and/or tic disorders suddenly appear following a strep infection (such as strep throat or scarlet fever); or
- The symptoms of OCD or tic symptoms suddenly become worse following a strep infection.
The symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones.”
The term PANDAS first appeared in the medical literature in 1996 and 1997 through case studies and government funded research done at the National Institute of Mental Health by Dr. Susan Swedo and others.
- Case study: acute basal ganglia enlargement and obsessive-compulsive symptoms in an adolescent boy.
- Identification of children with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections by a marker associated with rheumatic fever.
The term PANS was coined in 2012, also by Dr. Swedo, in her paper: “From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to diagnose PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).”
One of the most recent publications (February 2016) is this chapter, which provides a great overview of both PANDAS and PANS.
This video is from the 2016 Autism One conference that discusses the link between PANDAS and mitochondrial dysfunction: https://youtu.be/CCODAUpFsN0
YOUR ROADMAP TO THE SITE
STEP 1: Educate Yourself.
- Check out these 6 webinars to learn more about metabolic, neurological, medical and gastrointestinal comorbidities in Autism Spectrum Disorder.
- Read about the connection between autism and Mito.
- Read about three families' journeys from ASD to a mitochondrial disease diagnosis; their children's symptoms, testing, treatments and responses to a mitochondrial cocktail.
- Join our quarterly call. (See below for details.)
- Listen to this 2009 recording of a lecture presented by Dr. Fran Kendall about the link between autism and mitochondrial disease.
STEP 2: Educate Your Doctor About Screening for Mitochondrial Diseases.
- Have your doctor listen to these 6 webinars to learn more about metabolic, neurological, medical and gastrointestinal cormidities in Autism Spectrum Disorder as well as earn CME (Continuing Medical Education) credits.
- Have your doctor read the pediatric screening guide for an outline of symptoms.
- Download Dr. Fran Kendall's brochure explaining the connection between ASD and mitochondrial disease and share it with your doctor to begin a dialog.
- Visit Dr. Fran Kendall's website to print the article "Bridging the Gap Between ASD and Mitochondrial Disease" and bring it with you to your next appointment.
- Direct your doctor to visit Dr. Fran Kendall's website for an overview of the connection between mitochondrial disease and autism, symptoms, and Tier 1 and Tier 2 testing available.
- Suggest your doctor check out the table of contents for MitoAction's Clinician's Guide.
STEP 3: Learn About Treatment.
- Review the article, Update on Mitochondrial Disease Treatment Approaches.
- Click the link to Treatment in our categories.
- Click the link to Testing in our categories.
Does Your Child With Autism or ASD Have An Underlying Mitochondrial Disorder?
Do you have a child with autism, PDD, PDD-NOS, or Asperger's Syndrome who has other unexplained medical conditions? Many parents and physicians are investigating the association between atypical autism and mitochondrial disease.
You may have heard other parents or physicians talking about mitochondrial dysfunction; however, you may have no idea if mitochondrial disease is relevant to your child. Research looking at the connection between autism and mitochondrial disease in 2005 and 2007 first estimated that the cohort of children with ASD and overlapping mitochondrial disease could be as low as 4.1 to 7%.
Current research suggests that the link between these two diagnoses may be greater than previously suspected. As a result, the paradigm for evaluation of children with autistic symptoms is changing. Mitochondrial experts have stated that some mitochondrial diseases are potentially both genetic and environmental in origin. And some believe there is a genetic predisposition with an environmental "trigger" (such as fever or illness) in some cases.
Appropriate identification of children with mitochondrial disease and autism may improve their overall outcome. Currently, clinicial treatment approaches for children with ASD and Mito focus on improving metabolic support and mitochondrial function through use of vitamins and supplements called the "Mito cocktail." Energy management conservation and other supportive care are equally important.
It is our hope that this section will serve as a tool for education, support, and a starting point for discussion with your doctor. We hope you will use the autism categories on the left and join our monthly calls to learn more.
Alyssa Davi, Parent Advocate
We would like to make families aware of an important study currently recruiting patients at Arkansas Children’s Hospital Research Institute.
Defining subgroups of mitochondrial disease and dysfunction in autism spectrum disorder
Researchers at Arkansas Children’s Hospital Research Institute are conducting a study examining mitochondrial function in children with Autism Spectrum Disorder. The study will address how mitochondrial dysfunction is related to abnormalities in oxidative stress and how it is related to development and behavior. The study will assess mitochondrial function in several groups of children ages 3-14 years of age, including those with autism spectrum disorder, mitochondrial disease, developmental delays as well as those that are typically developing. The study consists of collection of a blood sample and an evaluation of behavior, development and language (unless your child is typically developing).
We are recruiting children between the ages of 3-14 years who fall into one of the following groups:
1. Typically developing
2. Diagnosed with Autism Spectrum Disorder using gold-standard criteria
3. Diagnosed with Mitochondrial Disease
4. Diagnosed with both Autism Spectrum Disorder and Mitochondrial Disease
5. Diagnosed with Developmental Delay without Autism or Mitochondrial Disease.
Contact Name and Number:
Please contact the study coordinator,
John Slattery, at 501-364-3556
Bryan (left) and Will (above) have ASD/Mito but it doesn't define them.