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!


Tuesday, August 15, 2017

The Book Shelf

This is a collection of books that I have found helpful.  I don't agree with everything in each one, but all of them had something very important to add to mu understanding of what was happening to our health and what I could do about it.  If reading a lot of books is daunting (due to time constraints, symptoms, etc) many of these are available as audiobooks which can be listened to while doing other tasks.

General Health:

Nutrition and Physical Degeneration 8th Edition by Weston A. Price

Cooking, Food, and Special Diet:

Know Your Fats: The Complete Primer for Understanding the Nutrition of Fats, Oils, and Cholesterol by Mary Enig, Ph.D.

The Dorito Effect by Mark Schatzker

Nourishing Hope, Nutrition Intervention for Healing our Children, by Julie Matthews

Breaking the Vicious Cycle by Elaine Gottschall

Gut and Psychology Syndrome by Natasha Campbell-McBride

GAPS Guide: Simple Steps to Heal Bowels, Body and Brain by Baden Lashkov
Special Diets for Special Kids vol. 1 and vol. 2  by Lisa Lewis, Ph.D.

Nourishing Traditions by Sally Fallon

Wild Fermentation by Sandor Katz

The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principles by Terry Wahls, MD and

Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar--Your Brain's Silent Killers
by David Perlmutter

Neurology, the Brain, and Mental Health:


Minding My Mitochondria 2nd Edition: How I overcame secondary progressive multiple sclerosis (MS) and got out of my wheelchair.  by Terry Wahls, MD

My Stroke of Insight by Jill Bolte Taylor

Waking the Tiger: Healing Trauma by Peter Levine

Why Isn't My Brain Working?
by Datis Kharrazian, DHSc, DC, MS, MNeuroSci, FAACP, DACBN, DABCN, DIBAK, CNS

Autism:

Biological Treatments for Autism and PDD - 2008 3rd Edition by William Shaw, Ph.D.

Autism:Beyond the Basics by William Shaw, Ph.D.
Children with Starving Brains by Jaquelyn McCandless

Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders    by Kenneth Bock, Cameron Stauth
Changing the Course of Autism by Bryan Jepson M.D., Jane Johnson

The Sound of Falling Snow: Stories of Recovery from Autism and Related Disorders by Annabel Stehli

The Impossible Cure by Amy Lansky

Sensory Processing:

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorderby Carol Stock Kranowitz

The Out-of-Sync Child Has Fun: Activities for Kids With Sensory Processing Disorder
by Carol Stock Kranowitz


Other Disorders:

Why Do I Still Have Thyroid Symptoms? When My Lab Tests Are Normal: A Revolutionary Breakthrough In Understanding Hashimoto's Disease and Hypothyroidism
by Datis Kharrazian

Heavy Metal Chelation:

Amalgam Illness Diagnosis and Treatment A book on how to cure mercury poisoning
by Andrew Hall Cutler, PhD, PE

Hair Test Interpretation: Finding Hidden Toxicities (companion book to Amalgam Illness)
by Andrew Hall Cutler, PhD, PE


The Medical System:

Birth as an American Rite of Passage by Robbie E. Davis-Floyd


Vaccines:

EVIDENCE OF HARM: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy
by David Kirby

Vaccine Epidemic by Louise Kuo Habakus and Mary Holland
"How Corporate Greed, Biased Science, and Coercive Government Threaten Our Human Rights, Our Health, and Our Children" (this book explores the ethics of vaccination)

Callous Disregard Autism and Vaccines: The Truth Behind a Tragedy by Andrew Wakefield

Thursday, August 3, 2017

Online Resources for Medical Research

How to Read and Understand Scientific Research is an article by Chris Kresser that introduces readers to the different kinds of medical research and studies that are done, as well as how to find them and help in understanding them.  Two good resources are Google Scholar and Pubmed.  These resources often don't provide access to the ful text of the article (they often just have the abstract, which is essentially a summary of the research and findings, but tends to leave out details that can be important).  Full text articles can sometimes be obtained through your local library or from medical libraries, or if you are affiliated with a school or organization that has an account you may be able to use that.

There is a lot of good advice in this article, but this particular issue seems to be one of the most common things that misleads people:
"Absolute risk or relative risk? Sometimes, scientists like to use relative risk to make their results sound more impressive. If a treatment reduces the risk of a disease from 2% to 1%, the absolute risk reduction is 1%. Treatment or no treatment, your absolute risk of getting the disease is pretty small. However, you could also truthfully say that the treatment reduces the risk by 50%. This sounds more impressive, but it gives a skewed impression of how valuable the treatment actually is."

Here are some additional resources that I have found helpful:





BioDigital interactive anatomy tool

Saturday, July 29, 2017

Diseases Caused by Nutrient Deficiencies

For those of us living in industrialized nations, it is assumed that we get a reasonably adequate amount of the nutrients that our bodies need.  This assumption seems based on several things, including the practice of fortification of foods such as adding vitamin D to milk, calcium to orange juice, and B vitamins to wheat flour.  It is also assumed that people living in the first world have access to a range of nutritious foods and can afford to eat a balanced diet.  While there is some truth in these assumptions, and we don't see high levels of many nutrient-deficiency driven diseases in most developed countries, These assumptions can also give a false sense of security.  One of the reasons that some foods are fortified is that much of the nutrition is lost during the processing stage and some of those nutrients are added back in (usually not in the same form that they occurred in in the unprocessed food).  White wheat flour is a good example of this.

There are still a number of reasons why a person living in an industrialized country might still develop one of these diseases, or as is probably much more common, shows some of the signs of deficiency but the deficiency is not severe enough to lead to the full presentation of the disease and is therefore not recognized.  Deficiencies can result from eating primarily processed foods that have the calories we need but very little nutrition, from eating food (even organic food) that was grown in nutrient-depleted soil or given feed that was grown that way, and by eating foods that have been engineered or bred for traits such as shelf-stability and low cost but that contain much less nutrition to begin with. Additionally, people who follow restricted diets, such as people who are vegan or vegetarian, who need to avoid foods due to allergies and sensitivities, who focus on raw and or locally-grown foods, people living in poverty or for other reasons have limited access to healthy food, or for any other reason eat a limited range of foods may need to be particularly aware of their nutrient intake.  Lastly, everyone's body is somewhat different in how it metabolizes various foods and nutrients.  Our bodies use enzymes and various biochemical pathways to transform what we eat into what we need in our bodies and some people have enzymes and pathways that function very differently.

General

Chapter 29: historical aspects of the major neurological vitamin deficiency disorders: overview and fat-soluble vitamin A.
Handb Clin Neurol. 2010;95:435-44
"The vitamine doctrine: Although diseases resulting from vitamin deficiencies have been known for millennia, such disorders were generally attributed to toxic or infectious causes until the "vitamin doctrine" was developed in the early 20th century. In the late-19th century, a physiologically complete diet was believed to require only sufficient proteins, carbohydrates, fats, inorganic salts, and water. From 1880-1912, Lunin, Pekelharing, and Hopkins found that animals fed purified mixtures of known food components failed to grow or even lost weight and died, unless the diet was supplemented with small amounts of milk, suggesting that "accessory food factors" are required in trace amounts for normal growth. By this time, Funk suggested that deficiencies of trace dietary factors, which he labeled "vitamines" on the mistaken notion that they were "vital amines," were responsible for such diseases as beriberi, scurvy, rickets, and pellagra.

Vitamin A deficiency eye disease: Night blindness was recognized by the ancient Egyptians and Greeks, and many authorities from Galen onward advocated liver as a curative. Outbreaks of night blindness were linked to nutritional causes in the 18th and 19th centuries... During World War I, Bloch conducted a controlled clinical trial of different diets among malnourished Danish children with night blindness and keratomalacia and concluded that whole milk, butter, and cod-liver oil contain a fat-soluble substance that protects against xerophthalmia... 1925 Fridericia and Holm directly linked vitamin A to night blindness in animal experiments using rats, and in 1929 Holm demonstrated the presence of vitamin A in retinal tissue. In the 1930s, Moore, Karrer, Wald, and others established the provitamin role of beta-carotene.

Although the availability of vitamin A through food fortification and medicinal supplements virtually eliminated ocular vitamin A deficiency from developed countries by the second half of the 20th century, vitamin A deficiency remains a serious problem in developing countries as indicated by global surveys beginning in the 1960s. Millions of children were shown to be vitamin A deficient, with resultant blindness, increased susceptibility to infection, and increased childhood mortality. Beginning in the 1960s, intervention trials showed that vitamin A deficiency disorders could be prevented in developing countries with periodic vitamin A dosing, and in the 1980s and 1990s, large randomized, double-blind, placebo-controlled clinical trials demonstrated the marked efficacy of vitamin A supplementation in reducing childhood mortality."


Chapter 30: historical aspects of the major neurological vitamin deficiency disorders: the water-soluble B vitamins.
Handb Clin Neurol. 2010;95:445-76.
"This historical review addresses major neurological disorders associated with deficiencies of water-soluble B vitamins: beriberi, Wernicke-Korsakoff syndrome, pellagra, neural tube defects, and subacute combined degeneration of the spinal cord.  

The prevalence of beriberi increased greatly in Asia with a change in the milling process for rice in the late 19th century. In the 1880s, Takaki demonstrated the benefits of dietary modification in sailors, and later instituted dietary reforms in the Japanese Navy, which largely eradicated beriberi from the Japanese Navy by 1887.

Wernicke-Korsakoff syndrome: In the late 1870s, Wernicke identified a clinicopathological condition with ophthalmoparesis, nystagmus, ataxia, and encephalopathy, associated with punctate hemorrhages symmetrically arranged in the grey matter around the third and fourth ventricles and the aqueduct of Sylvius. In the late 1880s, Korsakoff described a spectrum of cognitive disorders, including a confabulatory amnestic state following an agitated delirium, occurring in conjunction with peripheral polyneuropathy. Beginning around 1900, investigators recognized the close relationship between Korsakoff's psychosis, delirium tremens, and Wernicke's encephalopathy, but not until several decades later were Wernicke's encephalopathy, Korsakoff's psychosis, and beriberi all linked to the deficiency of a specific dietary factor, i.e. thiamin.

Pellagra and niacin: Pellagra was unknown prior to the introduction of maize into Europe from the New World. In the 18th century, Casàl and Frapolli described the clinical features of pellagra in Europe, and linked it with poverty and subsistence on nutritionally marginal corn-based diets. In the United States, pellagra became epidemic among poor Southerners in the early 20th century, in part because of economically-driven reliance on monotonous, nutritionally inadequate diets, combined with new manufacturing methods that removed vitamins from processed grain... (D)uring the depression, the collapse of cotton as an economically viable crop facilitated crop diversification, which contributed to an abrupt decline in pellagra mortality in the early 1930s... (V)itamin fortification of foodstuffs during World War II ultimately eradicated endemic pellagra in the United States.

Neural tube defects and folate: Folate deficiency was initially recognized clinically as a macrocytic anemia in the 1920s, and only clearly separated from pernicious anemia by the mid-20th century. When folic acid was isolated and synthesized in the 1940s, it was shown to correct the macrocytic anemia associated with pernicious anemia, while the neurological manifestations progressed. In the 1950s and 1960s,.. Beginning in the 1960s, folate deficiency was increasingly recognized as the major cause of preventable neural tube defects. In the early 1990s well-designed randomized trials established that folate supplementation could prevent neural tube defects. Trial data, collectively indicating that periconceptual folate administration reduces both the occurrence and recurrence risks of neural tube defects by at least 70%, helped establish governmental recommendations concerning folic acid intake and health policy concerning vitamin fortification of foodstuffs... Recent studies have established genetic predispositions for neural tube defects, including both infant and maternal gene polymorphisms for enzymes involved in folate-dependent homocysteine metabolism, which help explain how the genotype of the mother, the genotype of the unborn child, and environmental factors (e.g. folate intake) can all impact on the risk of neural tube defects.

Subacute combined degeneration and B(12) deficiency: Pernicious anemia was recognized clinically in the mid-19th century by Addison, but the most important neurological manifestation - subacute combined degeneration of the spinal cord - was not recognized clinically and linked with pernicious anemia until the end of the 19th century... In the 1920s, Minot and Murphy showed that large quantities of ingested liver could be used to effectively treat pernicious anemia, and specifically could improve or prevent progression of neurological manifestations, and could extend life expectancy beyond 2 years. Beginning in the late 1920s, Castle demonstrated that a substance elaborated by the gastric mucosa ("intrinsic factor") was essential for the absorption of a dietary factor ("extrinsic factor," later shown to be vitamin B(12)) needed to prevent pernicious anemia. Over two decades, from the late 1920s until the late 1940s, increasingly potent liver extracts were manufactured that could be given either intramuscularly or intravenously. In 1947, vitamin B(12) was isolated by Folkers and colleagues, and nearly simultaneously by Smith. Shortly thereafter the therapeutic efficacy of vitamin B(12) on subacute combined degeneration was demonstrated by West and Reisner and others. By 1955, Hodgkin determined the molecular structure of cyanocobalamin using computer-assisted x-ray crystallography, allowing complete chemical synthesis of vitamin B(12) in 1960 by an international consortium. Beginning in the late 1950s, the absorption and biochemistry of vitamin B(12) were elaborated, and several lines of evidence converged to support an autoimmune basis for pernicious anemia.

More on These Diseases:

Pellagra (from Medscape)
"Pellagra is defined by the systemic disease resulting from niacin deficiency, and it is characterized by diarrhea, dermatitis, dementia, and death, which usually appear in this order. GI tract symptoms always precede dermatitis, or, according to Rille, "Pellagra begins in the stomach"."

Wernicke-Korsakoff Syndrome (from Medscape)
"Thiamine appears to have a role in axonal conduction, particularly in acetylcholinergic and serotoninergic neurons. A reduction in the function of these enzymes leads to diffuse impairment in the metabolism of glucose in key regions of the brain, resulting in impaired cellular energy metabolism.

Acute thiamine deficiency leads to mitochondrial dysfunction and therefore oxidative toxicity in areas of the brain starting with areas with the highest metabolic activity. The exact mechanism of neuronal cell death remains to be elucidated.

Additional findings include increased astrocyte lactate and edema, increased extracellular glutamate concentrations, increased nitric oxide from endothelial cell dysfunction, deoxyribonucleic acid (DNA) fragmentation in neurons, free radical production and increase in cytokines, and breakdown of the blood-brain barrier.

The amnestic component is related to damage in the diencephalon, including the medial thalamus, and connections with the medial temporal lobes and amygdala. The slow and incomplete recovery of memory deficits suggests that amnesia is related to irreversible structural damage.

Mortality may be secondary to infections and hepatic failure, but some deaths are directly attributable to irreversible defects of severe and prolonged thiamine deficiency (eg, coma)."

Keshan Disease

An original discovery: selenium deficiency and Keshan disease (an endemic heart disease).

Keshan disease-an endemic cardiomyopathy in China.

Keshan disease--an endemic mitochondrial cardiomyopathy in China.


Rickets (from Mayo Clinic)
"Rickets is the softening and weakening of bones in children, usually because of an extreme and prolonged vitamin D deficiency. Vitamin D promotes the absorption of calcium and phosphorus from the gastrointestinal tract. A deficiency of vitamin D makes it difficult to maintain proper calcium and phosphorus levels in bones, which can cause rickets.

Symptoms include delayed growth, pain in the spine, pelvis, and legs; and muscle weakness. In children it can skeletal bone malformations such as bowed legs, thickened wrists and ankles, and breastbone projection."


Monday, July 17, 2017

What It's Like to Live With MCAD, EDS, POTS, EGIDs, PTSD, Lyme Disease, etc

There are so many diseases and conditions that most of us have never heard of and know nothing about.  That, and the fact that for many of the disorders that we HAVE heard of we have only heard misconceptions and outdated information.  This can make it especially confusing when we find yourselves with one of these diagnoses; it means that our context and framework for trying to make sense of this new diagnosis is either not there at all or distorted.  We may feel alone, confused, isolated, unable to relate to anyone else.  This can slow down the process of getting treatment and can cause more emotional duress than would otherwise occur.  The videos that I am posting below are often directed at raising awareness among people NOT affected by the disease, which is another important goal, but personally I found it to be extremely important to hear about the daily lives and experiences of others who share my diagnoses.  It allows me to create a sort of "new normal" and helps me adapt to my new reality.  This doesn't mean that I give up fighting, or that I accept this reality as permanent, but without a solid place to start it's hard to know where to go and whether what I'm doing is helping.

So on that note I am presenting below videos that have been posted by people with a wide variety of conditions that tell us and show us what daily life is like for them, what challenges they face, what treatment might be life, or any other details of living with that condition.  These people are allowing us to see a vulnerable side of their lives that can be very hard to share so I am deeply grateful for people willing to do this.  Being able to "meet" other people who share my issues and struggles has helped me so much in figuring out "where I am" in life and have given me ideas about where I might go.

General:

Adjusting to life after a long hospital stay and being on TPN

This is a humorous video about being on a feeding tube (NG)

Lessons learned after one year of a feeding tube

Extreme Chemical Sensitivity Makes Sufferers Allergic to Life

Mast Cell Diseases:

STRUCK BY MAST CELL ACTIVATION SYNDROME, JENNIFER CREDITS M HEALTH EXPERT WITH SAVING HER LIFE

Unmasking Mast Cell Disease: An Interview With a Fighter and Survivor

Utah Teen Discovers He's Allergic to Food: 'I Remember What it Tastes Like, That Will Have to Be Enough'

Ehlers-Danlos Syndrome (EDS):

Living with EDS: A Day In My Life


This episode of the TV show Mystery Diagnosis is about a teen with EDS and goes into more detail about the process of getting diagnosed.  It also follows her through testing, diagnosis, and treatment.


PTSD and C-PTSD (Complex PTSD):

What C-PTSD really looks like - the invisible disability

AFTER STRIKING A FIXED OBJECT



Lyme Disease:

Lyme Disease: How A Speck Changed My Life Forever (Amy Tan's story of Lyme)


ME/CFS:

To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

Wednesday, July 12, 2017

Resources for Advanced Medical Care and Travel

FINDING ADVANCED MEDICAL CARE

‘OpenTrials’ site launched as a one-stop shop for medicine trial information

The Undiagnosed Diseases Network (UDN)

How to Apply to the UDN

TRAVEL FOR MEDICAL CARE

National Patient Travel Center
"The National Patient Travel Center provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network."

Wednesday, June 28, 2017

Managing Complex PTSD (C-PTSD)

Managing Complex Post Traumatic Stress Disorder (YouTube video)

Recovery from C-PTSD is a multi-step process involving the development of certain emotional skills, processing of the trauma, and setting goals.  This process is intended to return a sense of agency to the traumatized person.  C-PTSD is caused when someone is subjected to an ongoing abusive relationship or situation in which they are (or perceive themselves to be) unable to escape.  This can include the better-known examples of child abuse (especially child sexual abuse), people fighting or trapped in war zones, but can also include many other situations including some extreme religious groups or cults, victims of human trafficking including slavery and prostitution, and even (as in my case) chronic illness in which a person must undergo painful and frightening procedures, often with cruel and/or life threatening treatment from providers.  The long-term affects of this abuse and entrapment changes the way that the victim perceives themselves and how they relate to the larger society.

According to this presentation, the symptoms of PTSD and C-PTSD differ.  The symptoms of PTSD listed are a re-experiencing of the trauma (such as flashbacks), avoidant behavior, and a feeling of threat even there is not an actual threat present.  I think there are other definitions that include more symptoms such as chronic nightmares.  The symptoms of C-PTSD include all of those already listed as well as the development of a negative self-image, emotional dysregulation, and problems with interpersonal relationships.  In C-PTSD there is also significant dissociation (which can include episodes of amnesia), extreme problems with concentration and focus, and changes in the person's ability to cope (this may include self-harm, going into rages, etc).  Some people include somatic symptoms which means physical medical problems such as pain that is thought to be caused by the mental distress.  This is a very slippery slope as it can be used to invalidate the actual medical needs of some people.

The victim may also develop an altered perception of the perpetrator (especially in cases where the perpetrator is a family member, partner, or spouse, who the victim has positive feelings for) as well.  These experiences can cause the victim to avoid relationships in general, possibly feeling that abuse is an inevitable aspect of a relationship, or because their feelings of self-worth have been destroyed and they do not feel worthy of love or positive treatment, instead their concept of self is dominated by feelings if shame and guilt.  The victim may feel that the trauma has permanently changed them in negative ways.

The International Society for Traumatic Stress Studies has developed a 3-phase approach to treatment.  It begins with helping the patient develop the emotional skills needed to become stabilized and to cope with the trauma and it's effects.  The next step is to work on processing the memories of trauma with these new skills, and then to increase the patient's involvement with the outside world.  The time it takes for a patient to move through these steps can vary tremendously, and the patient may need to revisit an earlier stage from time to time.

One of the barriers that many patients need to move past is a sense that other people can't be trusted and are out to take advantage of, or further abuse, the patient.  This means the therapist must focus on establishing a trusting and reliable relationship with the patient who is very sensitized to the perception of negativity and criticism from others, especially the therapist.  The first phase of treatment focuses on the development of emotional awareness, regulation, and ultimately flexibility.

From this point the focus shifts to learning to use these skills in relationships and to learn about setting boundaries.  Mindfulness is sometimes included in therapy at this stage, especially to address dissociation.   Exposure therapy is used as another step- meaning that the patient is helped to re-interpret the trauma (to revisit it in certain ways, with support.  Not to just "go back and relive it").  The idea is to reinterpret the trauma as something that can be consistent with a constructive narrative of the patient's life, a way of re-framing the trauma as something that is about survival and hope rather than focusing on the suffering, pain, and helplessness.  Traumatized patients often have difficulty remembering and making meaning of the traumatic events that occurred.  After this the patient is encouraged to set goals and to work towards developing new aspects of their lives, often things that they never thought were possible for them.

Many clinicians and therapists feel that C-PTSD is not a separate entity, but rather a more intense form of PTSD.  This is why in the DSM-V (the current manual for diagnosing mental disorders), the definition of PTSD was broadened rather than including C-PTSD as it's own disorder.  In the future both of these diagnoses may be included as part of a spectrum of trauma-based disorders.