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, February 22, 2017

Parasites Can Alter the Behavior of Their Hosts

These are my notes for a TED talk about parasites called "Suicidal wasps, zombie roaches and other parasite tales" by Ed Yong.



Ed Young talks about ways that parasites can alter many attributes of their hosts, including behavior, to serve the needs of the parasite rather than the host.  One example is that when a certain kind of tapeworm infects a brine shrimp, it turns the shrimp red and causes it to gather in large groups.  This allows the shrimp to be easily seen and caught by flamingos, who are the only hosts in which this tapeworm can reproduce.  There are many cases like this in which a parasite makes it's host behave in ways that are dangerous and even fatal to it but serve the needs of the parasite.  He gives an example of a kind of worm that infects a cricket, and releases chemicals to cause the cricket to jump into water and drown.  Once it's drowned the worm is free to leave and look for a mate.

Since parasites are hidden through much of their lives, it is easy to underestimate their numbers.  He mentions research in which it was found that the biomass of a particular kind of worm in a particular estuary was the same as that of all of the fish in the same estuary, and 3 to 9 times that of the birds.  Because of the sheer volume of parasites, manipulation is not unusual in the natural world- it is a "critical and common part of the world around us".

Scientists have found hundreds of examples of parasites capable of manipulation, and is now beginning to understand some of the specific means by which they accomplish this.  There is a wasp that has a specialized feeler so that it can reach into the head and locate the brain of it's victim (a roach), and it carefully injects a very specific type of neurotoxin into two very specific regions of the roach's brain.

This raises the question of whether there are parasites that are able to manipulate humans in the same way.  This question is deeply unsettling since as humans we tend to think of ourselves as in control of our own behavior, pretty much all the time.  One candidate is toxoplasma gondii, which is capable of infecting mammals in general but can only reproduce inside of a cat.  If a mouse or rat becomes infected with toxo it will not only avoid cats but will seek them out.  The cat then kills and eats it, and the parasite is able to reproduce.  They are not entirely sure how this works, but they do know that toxo makes an enzyme that makes dopamine; we also know that it targets a part of the rodent brain involved in sexual arousal.  Estimates are that 1 in 3 people around the world is infected with toxo.  For the most part, toxo is dormant in humans and it is not immediately obvious if someone is infected.  However some small signs have been found, such as a slightly increased likelihood of being in car accidents (this is hypothesized to be due to slowed reaction times).  There is also some evidence that people with schizophrenia are more likely to be infected.  Although we don't know exactly how or how many parasites such as toxo are able to influence us humans, given how widespread this phenomenon is in the world it is extremely unlikely that humans would be the one exception, the one animal not able to be influenced by parasites.  He adds that viruses and fungi can also be considered parasites, which raises a lot of questions about human behavior and infections.  These questions are difficult and we don't have a lot of answers but they do seem like very important things to consider.






Gallbladder Disease- the Connection Between MTHFR, Methylation, and Digestion

These are my notes for a post and video done by Dr Andrew Rostenberg, DC which can be found here.

While there doesn't seem to be a direct relationship between poor methylation and poor digestion, the two often occur together, which can be caused by the effects of poor methylation on the functioning of the liver and gallbladder, resulting in the gallbladder not being able to perform it's important role in proper digestion and detoxification. He says that the gallbladder is the most methylation-sensitive organ in the body. The liver needs the enzymes involved in methylation to make bile, which is made from cholesterol. If you can't make adequate bile, you can't excrete fats out of your body. There are some things that hinder the release of bile, which include "High stress lifestyles, low stomach acid, estrogen dominance, toxin and pesticide exposure can all stop the bile from being released. All these things hurt our methylation cycle, which in turn hurts the gallbladder."

Bile is critical for proper digestion of fats.  It is an emulsifier and a detergent so it breaks fat up into smaller pieces which can then be absorbed.  If there isn't enough bile, deficiencies of fat-soluble vitamins can occur.  Bile also works like soap in that it "rinses out" particles of food and bacteria from the walls of the small intestines, the same way that detergent rinses these things off of your dishes.  If this process doesn't work properly than bacteria can grow too high up in the intestines and cause SIBO.  If insufficient bile is excreted it can also lead to leaky gut.  Without adequate gallbladder function,  there are more cracks and spaces between the cells lining the gut.  The gallbladder concentrates the toxins and junk that the liver is trying to get rid of, so if it gets emptied less and less frequently and fully problems can occur.  The liver is trying to get rid of things like pesticides, flame retardants, heavy metals, food additives, and medications.  A major part of detoxification is simply producing bile when we eat.  Bile is also important for clearing excess estrogen so hormonal balance can also be affected.

Poor methylation means poor detoxification.  If methylation, sulfation, and glutathione aren't working well (oxalate can reduce sulfation even more) the body switches to an alternative pathway called UGT (glucoronidation), in which things are detoxified by being "stuck" to glucose.  Unfortunately this results in thick and sticky bile which can hinder it's function and even keep it from leaving the gallbladder.   The bile should have a relatively thin consistency, like that of dish detergent, rather than the more molasses-like thickness that it can take on when a lot of sugar is used for detox.  There is research showing that giving taurine and sulfur to mice with thick bile corrected the problem.  Estrogen must also be detoxed via the bile, so increased estrogen levels (such as pregnancy) or the taking of birth control pills and/or hormone replacement therapy can exacerbate this problem.  This also explains why gallbladder disease seems to occur more often during pregnancy.

Choline (as phosphatidyl choline) removes excess cholesterol but if the gallbladder isn't working right it may not be able to do this, so in some cases high cholesterol is simply the result of the gallbladder being unable to remove it.  Phosphatidyl choline also protects the gut lining from irritation caused by bile in the GI tract.  Without enough phosphatidyl choline fat cannot be removed from the liver which then leads to liver disease.

This is what he has to say about correcting the problem "So the way we prevent this is through optimizing methylation by increasing taurine, phosphatidylcholine, folate, B12, and TMG. Taurine is produced by the methyl cycle, and when taurine is given to rats with gallbladder sludge, their bile gets slippery again and rescues their liver from damage.5 The methylation genes PEMT and BHMT are found in the liver and they make choline phospholipids which are necessary to keep the bile flowing. Choline protects the liver and gallbladder against damage from the detergent action of bile and it promotes movement of cholesterol into the bile so it can be removed from the body. When we run out of choline, cholesterol and fat literally get stuck in our liver and muscles, leading to fatty liver disease and muscle damage."  (On an interesting and possibly related note, I recently read a theory that suggests that insulin-resistance and diabetes may be caused by bits of fat being inside the cells and "mucking up" the insulin receptors.  At the bottom of this post is a more detailed list of the supplements that Dr Rostenberg recommends.


Monday, February 20, 2017

Kitchen Help and Cooking Skills

One of the most significant barriers that I see people struggle with in order to implement a special diet is lack of general cooking and kitchen skills.  Over the last few generations many people haven't learned these skills as they would have in the past.  This is especially true for traditional cooking methods, such as fermenting foods and making broth, but is also true for more basic cooking methods as well.  Below are links that demonstrate some of this information.

A nice collection of diagrams and graphics to illustrate and teach cooking.

How to care for cast iron pans

How to sharpen a knife using a whetstone

How to use and season a mortar and pestle

Reference guide for spiralizing vegetables

How to temper chocolate

Learning to cook without recipes (teaches technique)

Cooking hints and tips from What's Cooking America

Cooking Eggs

How to make soft-cooked eggs

How to make perfectly poached eggs

How to make steamed eggs

Friday, February 17, 2017

Central Sensitization Syndrome (and chronic pain)

This is a video made by Dr Sletten of  The Comprehensive Pain Rehabilitation Center at The Mayo Clinic about a condition called Central Sensitization Syndrome which can be a cause of chronic pain and discomfort.  My notes follow the video.



In our peripheral nervous system, we have tiny sensors in every part of our body (aside from hair and fingernails).  These sensors are in our skin, gut, muscles, joints, bones, vestibular system, nerves, vascular system, vision, hearing, taste, and smell.  These sensors pass information on the the central nervous system about our safety and comfort so that we can respond appropriately (drink when we are thirsty, for example).  There can be situations that cause the sensors to be up-regulated (to send a stronger signal), and once this happens they stay upregulated, continuing to send stronger signals.  Sensory symptoms can become very problematic.  This syndrome may start after an injury, illness or disease, surgery, hereditary, or some repetitive injuries.

Once the input from the peripheral sensors becomes upregulated, it sends increasingly stronger signals to the brain.  The somatosensory cortex, which is where all of our sensory input into the brain goes to be analyzed, begins to react more strongly.  Input that may have been mild and easily handled in the past, such as discomfort from clothing, can become much more distressing.  Because the Somatosenosry Cortex is organized by body part, pain and discomfort in one part of the body can lead to other symptoms in the same area of the body.  This leads to another group of symptoms that can be worse over time including pain, fatigue, dizziness, nausea, sensitivity to temperature, touch, tastes, sounds, smells, even barometric pressure.  None of this is psychological, it is physiological. Patients don't bring this on themselves.

There are 4 reactive and maintaining factors which include physical, emotional, behavioral, and chemical.  When patients are on many meds, it can cause confusion in the brain as they interact, they call this "polypharmacy".  In this way "over-medicating" can make the problem worse.  Behavioral reactions to pain such as avoidance can worsen the situation because the muscles can become deconditioned.  The emotional distress about being sick and dealing with pain can itself also be overwhelming to the brain and can increase the overall stress on the brain.  He is careful to point out that emotions are a response, NOT a cause in this condition.

Mayo treats this with The Pain Rehabilitation Program, which is a 3-week program (40 hours a week) in which they work with patients to alter those 4 factors that can amplify the sensory signals.

Friday, November 11, 2016

Medical Dream Team

This is a list of providers who are especially knowledgeable in areas relevant to my family 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:

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.

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.

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.

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

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.

EDS/Connective Tissue Disease

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.

Other

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 finctional 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.


Friday, October 28, 2016

Many of the Diseases on the Rise Now seem to be Interconnected

In this commentary piece by Dr Stephen Genuis MD, Pandemic of idiopathic multimorbidity, he makes the argument that there is a relatively sudden increase in certain types of diseases, particularly allergic diseases.  He calls this condition "multimorbidity" which simply refers to a patient with 2 or more chronic diseases or complaints.  He argues- as many have regarding autism- that a sudden and dramatic increase in a medical condition is not well explained by claiming that the condition is genetic, as genes don't change that quickly.  A sudden and dramatic increase in a disease implies an environmental influence.  He has noticed, as many others have, that some symptoms and diseases often appear together including headache, joint pain, fatigue, brain fog, bloating, chemical intolerance, muscle aches, itchy skin, abdominal discomfort, and fibromyalgia.

Dr Genuis conforms what many of us living with these symptoms already know- that many, if not most doctors do not believe that this constellation of symptoms is caused by physiological illness, but rather is a psychiatric somatic illness requiring anti-depressants for therapy.  In his attempts to uncover a common physiological explanation, he says "A foray into the recesses of the scientific literature reveals discussion of a condition called sensitivity-related illness (SRI), with description of a credible causal mechanism to account for much of the emerging pandemic of multisystem health problems. This condition results when toxicant accrual within the human organism— typically from exposure to adverse chemicals—induces a state of immune dysregulation and hypersensitivity resulting in physiological disruption within various organ systems. The pathogenesis relates to an intriguing phenomenon called toxicant-induced loss of tolerance, a finding that represents a considerable advance in medical science pertaining to the origins and mechanisms of disease."

It seems that more and more doctors and researchers have begun paying attention to the co-morbidity of diseases and symptoms such as Mast Cell Disease (MCAD), Eosinophilic diseases (EGIDs and HES), other digestive disorders and symptoms, allergy and other forms of atopy such as eczema, migraines and other headaches, Ehlers-Danlos Syndrome (EDS) and other joint and connective tissue symptoms and disorders, psychiatric symptoms such as ADHD, OCD, panic disorders, and anxiety, neurological and neurodevelopmental disorders including autism and seizures, as well as many others.  In particular, the three disorders of EDS, MCAS, and Dysautonomia (usually POTS) occur together so often that they are sometimes referred to as "the trifecta".

Unifying Theories:

Researchers identify new spectrum disorder called ALPIM syndrome
"Panic disorder itself may be a predictor for a number of physical conditions previously considered unrelated to mental conditions, and for which there may be no or few biological markers," explains Dr. Coplan.  In the study, published in the Journal of Neuropsychiatry and Clinical Neurosciences, the researchers proposed the existence of a spectrum syndrome comprising a core anxiety disorder and four related domains, for which they have coined the term ALPIM."  These are: A = Anxiety disorder (mostly panic disorder); L = Ligamentous laxity (joint hypermobility syndrome, scoliosis, double-jointedness, mitral valve prolapse, easy bruising); P = Pain (fibromyalgia, migraine and chronic daily headache, irritable bowel syndrome, prostatitis/cystitis); I = Immune disorders (hypothyroidism, asthma, nasal allergies, chronic fatigue syndrome); and M = Mood disorders (major depression, Bipolar II and Bipolar III disorder, tachyphylaxis. Two thirds of patients in the study with mood disorder had diagnosable bipolar disorder and most of those patients had lost response to antidepressants).

A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome

Dr Meglathery, herself a patient with this combination of diagnoses, has developed a theory called The RCCX Theory that argues for an underlying genetic connection between these conditions.
Dr Diana Driscoll has developed a theory she calls The Driscoll Theory that connects POTS, MCAS and EDS, and ties in some of the other symptoms/issues as well (including cranial hypertension).  She also has a number of videos on her site that explain the connections in more detail.

The blogger over at Oh Twist describes in a post called The Chronic Constellation the list of disorders that so many of us as patients have noticed.  She also includes mitochondrial diseases, autism spectrum disorders, and many autoimmune diseases in this cluster of disorders.

Scientific Papers That Support These Connections:

Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes

Neurological manifestations of Ehlers-Danlos syndrome(s): A review

Chronic fatigue in Ehlers-Danlos syndrome-hypermobile type

Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome.

Neurodevelopmental attributes of joint hypermobility syndrome/Ehlers–Danlos syndrome, hypermobility type: Update and perspectives

Unexpected association between joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type and obsessive-compulsive personality disorder.

Joint hypermobility is more common in children with chronic fatigue syndrome than in healthy controls.

[Fibromyalgia: an unrecognized Ehlers-Danlos syndrome hypermobile type?].

High prevalence of eosinophilic esophagitis in patients with inherited connective tissue disorders

Eosinophilic gastrointestinal disorders associated with autoimmune connective tissue disease.

Involvement of mast cells in eosinophilic esophagitis.

Gastrointestinal symptoms associated with orthostatic intolerance.

Symptom overlap and comorbidity of irritable bowel syndrome with other conditions.

Characterizing Gulf War Illnesses: neurally mediated hypotension and postural tachycardia syndrome.

Neurally mediated hypotension and chronic fatigue syndrome.

Neurological Manifestations of Angioedema

Sleep research in autism and connective tissue

New Epidemics: The Possible Connection Between CFS/ME, Narcolepsy and PANS

New study shows severity of tinnitus (ringing in the ears) is related to emotional processing

Food Allergy Common in Joint Disorder

Kids with food-triggered eczema are at risk for developing life-threatening food allergy, study suggests

Psychological Functioning of Children and Adolescents With Eosinophil-Associated Gastrointestinal Disorders

Psychiatric disorders and symptoms severity in pre-school children with cow's milk allergy.

Association of atopic diseases and attention-deficit/hyperactivity disorder: A systematic review and meta-analyses.
Cow's milk protein intolerance in adolescents and young adults with chronic fatigue syndrome.

Wednesday, September 21, 2016

Products We Like for Managing Our Health Conditions

There are quite a few products that we have found that we need to help us live as best as we can with our health conditions.

MASKS:

Vogmask These face masks are more comfortable than most, partly because the straps go behind your ears instead of behind your head.  They come in several sizes and many colors and patterns.  In my experience they work pretty well but some smells, etc do make it through.  This is a good "everyday" mask.

I Can Breathe! Masks These masks, made by a family-owned business, are similar to vogmasks but can be washed and have replacement filters, whereas Vogmasks don't.  I haven't tried these yet but have heard that they are good.

Pure Non-Scents Face Masks I have found this mask to be more effective than Vogmasks at filtering out harmful exposures, but it is much less comfortable.  The one linked to here has silver in it for added protection from viruses.  Some people need to avoid silver so be aware which one you order if you get one.  They have another one that is especially good at filtering out mercury here.

PHYSICAL THERAPY

TheraCane This tool is helpful for getting bones back into place if they sublux or dislocate, which happens frequently for many of us with EDS (Ehlers-Danlos Syndrome). I use mine almost daily.  It can also be used to do trigger-point massage and myofascial release on yourself.

CranioCradle This is a soft foam device that can be used to relieve tension and pain in the neck, back, and sacrum.  It can be placed under the back of the skull to reset your craniosacral rhythm.  I also use this almost every day.

Silver Ring Splint Company Many of us with EDS have difficulty using our hands and fingers for some tasks because they are hypermobile (too flexible) or double-jointed.  These splints are expensive but are effective and are actually nice enough that they can feel like jewelry.

IntelliSkin This company makes clothing that can help keep joints in place with gentle pressure and traction which reduces the rate of subluxations and dislocations for people with EDS.

CLEAN AIR:

IQ Air makes some of the best air filters available.  They are expensive but worth it if you can afford one and need clean air.  I have one and it has allowed me to live in environments that I otherwise would not have been able to.

Activated Charcoal This company sells a variety of products made with activated charcoal (carbon) including air filters, water filters, carbon cloth that can be cut to fit specific needs (like covering vents), even capsules for internal use.

CLEAN WATER:

AquaSauna This company makes water filters that are installed at the point-of-entry for the home, so that all the water in the home is filtered and clean.  I found this to make a major difference with showers and baths which can smell of chlorine otherwise.  They also sell filters for sinks and water bottles with their filters in them.

This product (bone char) can be used to filter water and is especially good at removing heavy metals and fluoride.

FEEDING (TPN, Tube feeding, etc)

Pitch It IV Pole This is a lightweight IV pole that is collapsible and portable.  It is sturdy enough to hold a full TPN bag for an adult plus other things, but very lightweight.

Cord keeper This is a cover for the lines that go from a feeding or medical pump to a PICC or port, to help keep the line protected and from getting caught on things or wrapped around things.  It's a handmade product and come sin cute fabrics.  I haven't tried this yet but plan to get one when my port is placed.

SENSORY AND OCCUPATIONAL THERAPY PRODUCTS:

Autism Community Store has a big variety of products for sensory needs such as swings, trampolines, and weighted products.  They also have things for adaptive living, speech therapy, teaching materials, and toys.

Therapro This company sells a wide variety of specialized items for therapy and adaptive living, including products for eating, hygiene, speech and adaptive communication, fine and gross motor skills development, and more.

Fun and Function This site sells sensory products such as swings, fidget toys, weighted and compression items, items for eating, sleeping, school, communication, and more.

Privacy Pop These are bed tents that are similar to one we used with Roo when he was younger.  It seemed to help him feel safe and secure in his bed.

CLOTHING FOR SENSORY NEEDS:

Independence Day Clothing  This line of clothing was designed to allow people with several kinds of challenges to be able to dress themselves.  The clothes don't have a front or back or inside or outside so they are simple to put on.  

Hanna Andersson This clothing company makes long johns/pajamas with flat seems that are very soft and comfortable for many people with sensory needs that can make a lot of clothing uncomfortable.  Some of these products are also made with organic cotton.

SmartKnit Kids This company makes clothing such as socks and underwear without seams, tags or elastic bands that bind.  At least some of the clothing is chemically treated because it claims to be "anti microbial", so something to be aware of if this is a problem for your family.

Kozie Clothes This company makes sensory-friendly clothing, without tags or internal seams, and also makes clothes for babies and children with special medical needs (such as clothes with a hole for feeding tubes or other medical devices, and clothes that help with temperature control).  They also have weighted and compression items.

NoNetz Is a company that makes swim trunks without the mesh interior that can be so hard for some people with sensory needs to tolerate.

MISC.:

These are glowing strips that you can stick inside the toilet bowl to help with aim, especially at night.

LowBlueLights This company sells products that block blue light which can help people to fall asleep at night.  This includes blue-blocking glasses, computer monitor filters, and lights.  The idea is that this helps the body to produce enough melatonin.

A new font is available that was designed to help people with dyslexia to read more easily.