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!


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  That, and the fact that for many of the disorders that we HAVE heard of we have only heard misconceptions and outdated information.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.

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 Woman Who Changed Her Brain: Barbara Arrowsmith-Young at TEDxToronto
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