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!


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.

Wednesday, May 31, 2017

Meditation, Mindfulness, and Breath Work

There has been more and more awareness of the damage that chronic stress can do to our bodies, even having epigenetic effects.  Chronic stress in childhood is especially toxic but the chronic stress that the parents of many special needs kids, especially children with autism and/or serious health conditions experience, is also very harmful.  Then on top of all of that there is the added stress of dealing with medical insurance companies, doctor's offices, the intense financial demands that chronic health issues place on a family, and the school system if you choose to send your child to school.  Having as many tools as possible to help us calm our anxiety, sleep better, stay more focused and present, and to minimize the effects of an intrinsically stressful life, becomes a necessity.  Since I am homebound, what works for me the best are guided visualizations and meditations.  There are so many different approaches and styles, so I am including a few of the shorter ones here as a sort-of sample pack so that you can try some different approaches.  I have also found that some of these guided meditations are truly wonderful in helping me fall asleep.

Adorable Animated Mice Explain Meditation in 2 Minutes

Why Mindfulness Is a Superpower: An Animation

Mindfulness Guided Meditation - 5 Minutes


How to Meditate - 5 Minute Meditation Escape (this video demonstrates a particular method)




WORKING WITH CHAKRAS

Before Sleep | Beginners Spoken Guided Meditation | Chakra Alignment |How to Chakra Balance




Activating the hand chakras



The Science Of Yogic Breathing | Sundar Balasubramanian


The speaker found that after practicing yogic breathing regularly, he began to produce more saliva.  Not only would this be helpful for people with chronic dry mouth, but also saliva has many different contents in addition to being a digestive fluid.  It also has hormones, proteins, growth factors, including nerve growth factor.  Nerve Growth Factor not only helps nerve cells to grow but it is protective of nerve cells and helps them live longer.  Levels of nerve growth factor are significantly reduced in people with Alzheimer's.  Nerve Growth Factor is given therapeutically to patients with Alzheimer's so he did a clinical trial which showed that yogic breathing does raise levels of nerve growth factor.  They also found other proteins and hormones that are involved in coping with stress and pain, cancer, immune function, and other things.  There is a saying when talking about meditation that the mind is a monkey- but not just a normal, a drunken monkey who has been stung by a scorpion.  Because of this trying to control the mind is very hard.  Instead, we can focus on controlling our breath, which then helps to tame the money.

Breath -- five minutes can change your life | Stacey Schuerman




Sunday, May 21, 2017

Physical and Manual Therapies

We've found, as many biomed families have, that physical and touch-based therapies are an essential part of healing and can make a profound difference in the day-to-day quality of life of a person.  The better known therapies and techniques include physical therapy, occupational therapy, chiropractic, and yoga.  Each is somewhat different and better suited to some people more than others.  There are so many different methods and with some research and trial-and-error it seems that many people find at least one method that helps significantly.  I am including links below to the various therapies that I'm familiar with, but first a little inspiration and reminder about possibilities:

This beautiful and flexible dance is performed by a woman who fell 40 feet while mountain climbing and was told that she would never walk again, let alone dance.  I don't know what she did as far as treatment (but I will try to find out!) because her healing and abilities now are absolutely amazing.



Real Bodywork
This is a site that has a lot of resources for many different treatment modalities including how-to videos, posters, articles, apps, etc.

Myofascial Release
"Myofascial Release is a safe and very effective hands-on technique that involves applying gentle sustained pressure into the Myofascial connective tissue restrictions to eliminate pain and restore motion. This essential “time element” has to do with the viscous flow and the piezoelectric phenomenon: a low load (gentle pressure) applied slowly will allow a viscoelastic medium (fascia) to elongate.  Trauma, inflammatory responses, and/or surgical procedures create Myofascial restrictions that can produce tensile pressures of approximately 2,000 pounds per square inch on pain sensitive structures that do not show up in many of the standard tests (x-rays, myelograms, CAT scans, lectromyography, etc.)"

CranioSacral Therapy
"CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord. Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system."

Lymphatic Drainage
"Lymphatic drainage massage is a profound technique to help increase lymph flow. With an increase of lymph flow immune function is increased. Harmful substances are removed from the tissues and neutralized in the nodes. It has also been shown that an increase in lymph flow stimulates an increased production of lymphocytes- enhancing immune function."
     Lymph Drainage for Detoxification
     How to do Self-Lymphatic Drainage to help manage lymphedema

Strain/Counterstrain (also called Positional Release)

Bendable Body

MELT

Feldenkreis
     “She will dance at her wedding”: Healing the girl born without part of her brain

Kinesthetic Storytelling (and the healing power of light touch)
     This is a TED talk called "The Curative Touch of a Magic Rainbow Hug"

Qi Gong and Qi Gong Massage

Mayan Abdominal Massage
"The Arvigo® techniques were developed by Dr. Rosita Arvigo, DN. based on her apprenticeship with the Maya healer Don Elijio Panti and her own education, training, and research as a naprapathic physician. Rosita's lifework, THE ARVIGO TECHNIQUES OF MAYA ABDOMINAL THERAPY®, help to restore the body to its natural balance by correcting the position of organs that have shifted and restrict the flow of blood, lymph, nerve and chi energy. Today the Arvigo® techniques are employed by Arvigo® Practitioners across the globe bringing the benefits of natural healing to their clients."

Dystonia. Rewiring the brain through movement and dance | Federico Bitti | TEDxNapoli
I don't know if this type of therapy has a name, but it is a movement-based approach to treat the spastic movements, pain, cramping, tremors, and frozen muscles that are the hallmark of various movement disorders such as Dystonia. In the case of the speaker at least, it gave him control of his body back and freedom from pain.  This is the presentation given by the man who developed this approach: How your movements can heal your brain | Joaquin Farias | TEDxNapoli

Brain Therapy This is supposedly a further use and development of lymphatic drainage similar to CranioSacral Therapy; however it claims to actually work on the membranes inside the head (such as the Dura mater and Pia Mater) as well as the brain itself.  Honestly, I have no idea how this would work, but it is a very intriguing.

Friday, May 19, 2017

Living With And Overcoming Brain and Neurological Injury

My Beautiful Broken Brain
This video documentary was made by a young woman who suffered a massive stroke, and chronicles her experiences, therapies, and progress in trying to recover as much as she can.  It also provides a powerful window into what life is like for her after the stroke and how it has affected how she sees the world and how she functions in it.

The Real Sleeping Beauty (Medical Miracle Documentary) - Real Stories
This is the story of a woman who came out of a coma after 20 years and began to speak again.  This is almost unheard of and it's not clear why she was able to do it, but it does offer hope that there are more possibilities for healing from brain injury than had previously been thought.

Empowering the Mind to Heal the Brain for Stroke | Dr. Eric C. Leuthardt 
This man gives a talk describing a therapeutic device that he created to help people who have lost some motor function due to a stroke.  It helps the brain learn a new way to control motor movement that has been lost.  This is a new technology that has not been thoroughly studied yet, but so far the results are impressive and people using the device have regained abilities that doctors have considered not possible.

Dystonia. Rewiring the brain through movement and dance | Federico Bitti
This man tells us what developing Dystonia, a neurological movement disorder, felt like and how life limiting it was.  He tried several of the conventional treatments but the disorder continued to worsen.  He did not want to undergo the very invasive brain surgery that was his only option, according to his specialist.  Instead he found someone who was developing a treatment modality based in neuroplasticity- retraining the brain with a customized program of exercises and movements that gave Mr. Bitti back much of the control over his body so that he regained many of the abilities that he had lost.  He then accidentally stumbled onto another way to overcome the remaining symptoms; he discovered that dancing was for him a very powerful way to work with his body and continue to heal.  What it also gave him back was a way to enjoy being in his body again.  For people who lose basic motor function, the experience of physicality- of being in your body- can become so unpleasant, it can feel like fighting a losing battle, and it cannot be emphasized enough how much this affects quality of life.  Finding ways to work with your body and to enjoy movement again can make a profound difference.  As Mr. Bitti says, it can be a way to find your bit of paradise inside of the hell of the movement disorder.


Saturday, March 18, 2017

D.I.Y. Home Remedies

Making our own versions of commercial products such as personal care products, cleaning products, and OTC medications and treatments is one way to significantly lower our exposure to the harmful ingredients that are commonly in the commercial versions of these products.  Homemade products are often less expensive and may also provide more options for addressing our health needs.

GENERAL SOURCES



REPLACEMENTS FOR PERSONAL CARE PRODUCTS

Baking soda and vinegar can be used as shampoo and conditioner.

How to make your own lipstick

How to make bug repellent

How to make rose oil (or other flower oil)

How to make your own deodorant

How to make sunscreen

This is a recipe to make herbal lip balm

How to make your own hairspray

REPLACEMENTS FOR HOUSEHOLD AND CLEANING PRODUCTS

A piece of aluminum foil can replace a dryer sheet for stopping static cling.

REPLACEMENTS FOR OTC HEALTH AND MEDICAL PRODUCTS

Recipe for homemade electrolyte drink

How to make calcium supplements from eggshells

How to make your own Vick's-style vapor rub
(For more on the harmful effects of Vick's VapoRub and why you would want to make your own, read this article)

IMMUNE SYSTEM SUPPORT

Using honey and mead to treat infections

Probiotics can be used to fight a sinus infection

This post describes how one person used ACV (apple cider vinegar) to remove a mole

This tonic made from garlic, raw honey and ACV is a general immune booster



NATURAL TREATMENTS

How to use ear candles

Vaginal steaming to support the female reproductive system

CLEAN AIR

This post has a link that shows you how to make a HEPA air filter out of inexpensive parts available at the hardware store.

NASA guide to plants that clean the air

15 House Plants You Can Use As Air Purifiers

Smudging eliminates harmful bacteria from indoor spaces

Thursday, March 9, 2017

The Movie Shelf

This is a collection of documentary movies and films (that are available online) and relevant to the topics discussed in this blog.

FOOD, NUTRITION, AND THE FOOD SUPPLY:

King Corn

Supersize Me

Food, Inc

AUTISM

Autism Yesterday is a short film about kids recovering from autism with biomed treatments.

Autism - Made in the U S A by Gary Null

Wretches and Jabberers

Temple Grandin

PANDAS/PANS

My Kid is Not Crazy (this is a film being made about PANDAS/PANS)

Unstuck- An OCD Kids' Movie

THE MEDICAL AND PHARMACEUTICAL INDUSTRY

Making Rounds: Medical Education Film.  This is an excellent presentation of what it looks like when very skilled and compassionate doctors go on rounds- how they ask questions to quickly discover relevant medical history, and how they use keen observation of the patients to find clues as to what might be the problem.

Off Label

Undoctored

VACCINES

VAXXED: From Cover Up to Catastrophe

The Greater Good

Shots In The Dark: Silence on Vaccines

The Hidden Truth (Australian movie)

Direct Order (about soldiers forced to take the Anthrax vaccine and were injured by it)

Vaccine Nation

Silent Epidemic; The Untold Story of Vaccines

CHEMICALS AND OTHER TOXINS

Chemerical

The Human Experiment

The Poisoner's Bible is an episode of the PBS show American Experience.  From the site:
"In the early 20th century, the average American medicine cabinet was a would-be poisoner's treasure chest, with radioactive radium, thallium, and morphine in everyday products. The pace of industrial innovation increased, but the scientific knowledge to detect and prevent crimes committed with these materials lagged behind until 1918. New York City's first scientifically trained medical examiner, Charles Norris, and his chief toxicologist, Alexander Gettler, turned forensic chemistry into a formidable science and set the standards for the rest of the country."
This show is very relevant to anyone interested in toxic exposures and the health effects that can result, as well as some of the history of government involvement (or lack of involvement) in regulating toxins and our exposure to them.

The Disappearing Male “The Disappearing Male is about one of the most important, and least publicized, issues facing the human species: the toxic threat to the male reproductive system. The last few decades have seen steady and dramatic increases in the incidence of boys and young men suffering from genital deformities, low sperm count, sperm abnormalities and testicular cancer. At the same time, boys are now far more at risk of suffering from ADHD, autism, Tourette's syndrome, cerebral palsy, and dyslexia.

The Disappearing Male takes a close and disturbing look at what many doctors and researchers now suspect are responsible for many of these problems: a class of common chemicals that are ubiquitous in our world. Found in everything from shampoo, sunglasses, meat and dairy products, carpet, cosmetics and baby bottles, they are called "hormone mimicking" or "endocrine disrupting" chemicals and they may be starting to damage the most basic building blocks of human development.“


SPECIFIC DISEASES AND CONDITIONS

My Beautiful Broken Brain is a film about a young woman working to recover from a severe stroke. It is currently available on Netflix.

Issues With My Tissues is about a woman with Vascular EDS as she works to reach her goal of walking the entire London Marathon.  It's a good window into daily life with EDS.

TREATMENTS AND THERAPIES

Dying to Have Known (film about Gerson Therapy)

The Beautiful Truth (also about Gerson Therapy)

EDUCATION

Class Dismissed is a film about homeschooling.

The War on Kids

FICTION

Awakenings

Cake


Psychedelics as Mental Health Treatment

Mental health is an area of western medicine where there still aren't many treatment options, and many people are helped only somewhat or not at all by what's available.  Recently research into the use of psychedelic drugs for legitimate therapeutic purposes has started up again after being more or less abandoned during the 60s and 70s.  Below is a TED talk about the use of LSD and psilocybin to treat Treatment-Resistant Depression and PTSD.  So far both drugs are showing promise which is  exciting because in the cases of both PTSD and Depression, many patients don't



From the article "Could a Club Drug Be the Secret to Curing PTSD?" that has just appeared in the March issue of Elle magazine:

"Ever since Richard Nixon signed the Controlled Substances Act in 1970, prohibiting the use of almost all psychedelics for any purpose, most scientists have regarded consciousness-altering drugs warily, if they thought about them at all. But as the war on drugs wanes and failures of U.S. drug policy become increasingly clear (witness the opioid epidemic), scientists are revisiting research on psychedelics. There are the studies of MDMA for PTSD, and scientists have also begun exploring the drug's potential to treat addiction, depression, and severe anxiety in adults with autism. Other psychedelics are also yielding promising lab results, including psilocybin (the active ingredient in so-called magic mushrooms), which teams of researchers from Johns Hopkins and New York University found can reduce anxiety and depression in cancer patients."

"Before Ecstasy became famous in the 1990s as the street drug of choice among ravers and curious college kids, a loosely knit network of psychiatrists and psychologists experimented with giving patients medical-grade MDMA, a synthetic compound originally developed by a Merck chemist in the early 1900s, to treat anxiety and depression."

"So far, 77 percent of the participants who have received MDMA in the Boulder pilot no longer meet the diagnostic criteria for PTSD, according to Marcela Ot'alora, the study's lead investigator. After another clinical trial in Charleston, South Carolina, a similar effect was seen in 83 percent of the group that received MDMA treatment (compared to just 25 percent of the group who received talk therapy alone). Perhaps most encouragingly, three and a half years after the Charleston study was completed, the benefits largely held: Three-quarters of the MDMA-treated patients who'd been deemed clinically free of PTSD remained free of it,"