This is the story of how my son has recovered from an autism spectrum disorder and how I am managing and working to recover from a neuro-immune disease called Myalgic Encephalomyelitis. I discuss the ups and downs of our lives as well as much of the information that led to my son's recovery and my own progress- autism and M.E. are both manifestations of the same underlying disease processes.
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!
Some of the people who live with the constellation of symptoms and diagnoses that I discuss on this blog are so sick that we require an intensive level of medical intervention that necessitates using, storing, and transporting large amounts of medical supplies. This can include supplies needed for tube feeding and TPN (IV feeding), central line care, infusions of medicine such as IVIG therapy, oxygen therapy, braces for joint support, and more. The sheer amount of supplies can quickly become overwhelming but for these supplies to help we need to know what we have so we can avoid running out and also be able to find what we need quickly. Below are ideas and videos by people with a variety of medical needs showing the systems and tricks that they have found work for them.
Storing and organizing supplies:
Room Tour (from Cheyanne Perry’s blog Hospital Princess)
Holidays can be a challenging time for many people, but for people dealing with chronic health problems- especially ones that involve food and eating- they can be especially difficult. Below are some resources that can help us to cope with these challenges.
Other fruit optional such as blackberries, cranberries, rhubarb, etc.
3 to 4 T port or red wine
1 tsp oil or fat
Bring berries to a boil in a small pan. Mix arrowroot powder (or alternate thickener) with water in small bowl, then mix dissolved thickener and sweetener into berries. After simmering for 5 or more minutes remove from heat and mix in the oil, vanilla, and port (or red wine). Once it cools down you may want to put it through a strainer to remove the seeds.
PB and J apple "sandwiches" Thinly slice apples into rounds about 1/4 inch thick. Remove the core from the middle of the slices with a small cookie cutter. Spread with jam and nut or seed butter and put together to make small sandwiches. Other fillings could include cream cheese (dairy or not), aged cheeses if tolerated, caramel, chocolate, or a chocolate and nut (or seed) spread like Nutella. Juice served in a watermelon keg A watermelon can be hollowed out much like a pumpkin at Halloween and then used to serve fruit juice made with the watermelon pulp (or almost any other drink). For instructions on how to do this, including actually adding a keg faucet, go here. If you prefer something simpler the watermelon shell can be cut to be like a punch bowl.
This is a list of links to resources and other things of interest to families with gifted individuals. Many people with disabilities are also gifted, for which the term is 2E for "twice exceptional". Finding appropriate educational placements is often already difficult for a child with Autism or any number of other "learning disabilities" but when you add in giftedness it can become almost impossible to find placements that are appropriate and work well. Families often find that they need to be creative in putting together the pieces of their child's educational plan. GENERAL:
"Since 1979, the Gifted Development Center (GDC) has served as a global leader in the assessment and development of gifted individuals of all ages. We support giftedness throughout the lifespan. Through our work, we have changed the lives of over 6,000 children and their families worldwide. We also build awareness and understanding of giftedness, through research, advocacy and development of national policy.
Our philosophy is child-centered: we put your child first. We focus on understanding your child’s inner world (overexcitabilities, emotions, perceptions, relationships, personality, etc.), rather than on his or her potential for success. We see giftedness as a pervasive way of being in the world, not as being "gifted in...."
I love to cook and bake and enjoy the challenge of adapting recipes and techniques into ones that work for various special diets and eating preferences. Most of these recipes and techniques use ingredients such as artificial colors and corn syrup that many people avoid eating as well as common allergens such as dairy, gluten, and corn. Below are links to videos and resources that demonstrate techniques, methods, and ideas that I'd like to use in adapting recipes. They are NOT included for the recipes themselves. I hope you have as much fun as I do playing with your food!
I'm not going to give much background on this topic, since so many people understand it so much better than I do. I am going to say that from what I understand, quality (and purity) vary a lot between brands so it's worth doing some research into the different brands available to you (and avoiding MLM/pyramid scheme brands including Young Living and DoTERRA. See this article for links to testing which show fraud on the part of both companies). The advice that I've gotten from "people in the know" is that with essential oils (EOs) you generally get what you pay for so it may be worth paying a bit more than you otherwise would. Also, while much of the information available calls for internal use but again the higher quality information sources say to avoid internal use except in certain situations (in which case you should be working with a trained professional), and to always dilute the EO with a carrier oil when using directly on the skin. Many people trained to use EOs tend to favor using the oils as aromatherapy (inhaled from a diffuser) rather than directly on the body.
Contrary to popular opinion, there actually is some research showing the effectiveness of many EOs as well as how or why they work. The smell receptors in our noses are the only sensory input organ that sends signals directly into the brain rather than filtering them first, and this is thought to be at least part of why they work. Essential Oils can be very problematic for people with mast cell disease or other allergic diseases (probably eosinophilic diseases as well), so if you have or suspect you have MCAS please be careful. Because EOs tend to be very high in salicylates people who do not tolerate them should probably also be cautious. The following is research that may help us to choose the appropriate oils.
This page from The Mayo Clinic provides a basic introduction to essential oils. "Essential oils used in aromatherapy are typically extracted from various parts of plants and then distilled. The highly concentrated oils may be inhaled directly or indirectly or applied to the skin through massage, lotions or bath salts. Aromatherapy is thought to work by stimulating smell receptors in the nose, which then send messages through the nervous system to the limbic system — the part of the brain that controls emotions."
Many fans of essential oils claim that one of their benefits is that they do not and can not cause side effects. I have never seen anyone try to support this argument, it just seems self-evident to some people. I don't know how many of the adverse events in this paper were actually caused by essential oils, but I do know that people with MCAS can be very sensitive/allergic to them and that they can bring on many symptoms including life-threatening anaphylactic episodes in some people.
This is another post that urges caution about the internal use of EOs, while also discussing some times in which it is appropriate to do so.
Some EOs have been shown to cause or worsen seizures in some people, and should be avoided by people at risk for seizures. This post lists out which oils these are, and explains why they can be problematic. If you scroll to the bottom of the post, it also has information about which EOs might help with seizures.
ANTIMICROBIAL EFFECTS (emphasis added in quotes below)
Essential oils from aromatic herbs as antimicrobial agents. "Bacterial resistance to multiple antibiotics is a health problem. Essential oils (EOs) possess antibacterial properties and have been screened as potential sources of novel antimicrobial compounds. Terpenes and terpenoids are components derived from EOs. Some of these EOs show inhibitory activity against Staphylococcus aureus. Carvacrol has specific effects on S. aureus and Staphylococcus epidermidis. Perilla oil suppresses expression of α-toxin, Staphylococcus enterotoxin A and B and toxic shock syndrome toxin. Geraniol shows good activity in modulating drug resistance in several gram-negative species. EOs could act as biopreservatives, reducing or eliminating pathogenic bacteria and increasing the overall quality of animal and vegetable food products. Although clinical studies are scarce, the uses of EOs for topical administration and as penetration enhancers for antiseptics are promising. Little information exists for oral administration." Antibacterial and antifungal properties of essential oils.
"Factors influencing the in vitro antimicrobial activity of essential oils and the mechanisms of essential oils action on microorganisms are reported. This paper gives an overview on the susceptibility of human and food-borne bacteria and fungi towards different essential oils and their constituents. Essential oils of spices and herbs (thyme, origanum, mint, cinnamon, salvia and clove) were found to possess the strongest antimicrobial properties among many tested."
"The essential oils of Origanum vulgare, Satureja montana, Mentha piperita, Cinnamomum verum, Cymbopogon flexuosus showed maximum inhibitory activity (MIC = 500 ppm) after 7 days. According to the results of the examination of pure constituents, beta-phellandrene proved to be the most interesting component among cyclic monoterpenic hydrocarbons as it showed a strong activity (MIC = 50 ppm). The most active of phenols was carvacrol (MIC 100 ppm). The open-chain alcohol 1-decanol was the most active of alcohols at 50 ppm. Finally, among aldehydes, a strong activity was shown by trans-cynnamaldehyde (MIC 50 ppm)."
Vapor-phase activities of cinnamon, thyme, and oregano essential oils and key constituents against foodborne microorganisms. "The aim of the study presented here was to gain knowledge about the vapor-phase antimicrobial activity of selected essential oils and their major putatively active constituents against a range of foodborne bacterial and fungal strains. In a first step, the vapor-phase antimicrobial activities of three commercially available essential oils (EOs)-cinnamon (Cinnamomum zeylanicum), thyme (Thymus vulgaris), and oregano (Origanum vulgare)-were evaluated against a wide range of microorganisms, including Gram-negative bacteria (Escherichia coli, Yersinia enterocolitica, Pseudomonas aeruginosa, and Salmonella choleraesuis), Gram-positive bacteria (Listeria monocytogenes, Staphylococcus aureus, Bacillus cereus, and Enterococcus faecalis), molds (Penicillium islandicum and Aspergillus flavus), and a yeast (Candida albicans)". The results of the study are complex and hard to summarize so please follow the link for more information.
"The antifungal indices of these two leaf oils at 100 ppm against five strains of white rot fungi and four strains of brown rot fungi were all 100%. Cinnamaldehyde, the major compound in C. osmophloeum leaf essential oils, possessed the strongest antifungal activities compared with the other components. Its antifungal indices against both Coriolus versicolor and Laetiporus sulphureus were 100%. The MIC (minimum inhibitory concentration) of cinnamaldehyde against C. versicolor and L. sulphureus was 50 and 75 ppm, respectively. In addition, comparisons of the antifungal indices of cinnamaldehyde's congeners proved that cinnamaldehyde exhibited the strongest antifungal activities."
"The aim of this study was to evaluate the effect of oregano essential oil, carvacrol and thymol on biofilm-grown Staphylococcus aureus and Staphylococcus epidermidis strains, as well as the effects of the oils on biofilm formation. For most of the S. aureus (n=6) and S. epidermidis (n=6) strains tested, the biofilm inhibitory concentration (0.125-0.500 %, v/v, for oregano, and 0.031-0.125 %, v/v, for carvacrol and thymol) and biofilm eradication concentration (0.25-1.0 %, v/v, for oregano and 0.125-0.500 %, v/v, for carvacrol and thymol) values were twofold or fourfold greater than the concentration required to inhibit planktonic growth. Subinhibitory concentrations of the oils attenuated biofilm formation of S. aureus and S. epidermidis strains on polystyrene microtitre plates."
"Oregano essential oils obtained from the genera Origanum, Thymus, Coridothymus, Thymbra, Satureja and Lippia are rich in carvacrol, a monoterpenic phenol isomeric with thymol... Carvacrol is responsible for the biological activities of oregano. Many diverse activities of carvacrol such as antimicrobial, antitumor, antimutagenic, antigenotoxic, analgesic, antispasmodic, antiinflammatory, angiogenic, antiparasitic, antiplatelet, ACE inhibitory, antielastase, insecticidal, antihepatotoxic and hepatoprotective activities and uses such as feed additive, in honeybee breeding and in gastrointestinal ailments have been shown. This paper highlights these activities and attempts to explain the possible in vivo mechanism of action of carvacrol."
ANTIOXIDANT, PROTECTION, AND DETOXIFICATION PROPERTIES
"both lavender and rosemary stimulations decreased cortisol levels. A significant inverse correlation was observed between the FRSA values and the cortisol levels with each concentration of rosemary stimulation. No significant changes were noted in sIgA or alpha-amylase. These findings clarify that lavender and rosemary enhance FRSA and decrease the stress hormone, cortisol, which protects the body from oxidative stress."
"The lemongrass essential oil (LEO) possessed various pharmacological activities, especially the anti-oxidative stress and cancer prevention... However, these effects were suppressed when the cells were also treated with LEO, leading to enhanced levels of SOD and CAT activities (2.9- and 2-fold, respectively, compared with BaP treatment only) and reduced the level of MDA in the cells (43% reduction in malondialdehyde level). At the same time, LEO also reduced the level of DNA damage, as shown by a reduced level of 8-hydroxy-deoxyguanosine (8-OHdG). Taken together, the results showed that LEO offered protection against BaP-induced OS and DNA damage, suggesting that LEO could be a promising agent for lung cancer chemoprevention."
Homeopathy is used along with biomedical treatments quite often. In my personal experience, and in watching and hearing about the experiences of others, it seems to be quite successful for some people and not helpful at all for others. Also, despite claims that homeopathy can never have side effects or do harm, I do know of at least 2 cases in which homeopathic treatment to clear viruses caused a significant and long term worsening of mitochondrial disease and possibly other conditions. My own family gave it a good try early on in Roo's medical journey and while we had some successes the gains were not reliable enough to justify the ongoing cost and effort at the time (we were paying some of his travel expenses in addition to the fees for the appointments). We have recently been trying again with certain remedies and are getting very good results for some things and reasonable gains with others. The homeopath that we were seeing when Roo was younger was John Melnychuk who is amazing and one of the more knowledgeable homeopaths in treating autism and the many other symptoms and conditions which commonly occur in people with ASD and their families. I do highly recommend him. Although we are once again dabbling in homeopathy I am not very knowledgeable about it so am only posting some basic information.
For some more general info about homeopathy I have this post.
Apis Mellifica (bee sting) - allergy symptoms including anaphylaxis (not to be substituted for epinephrine in anaphylactic shock, but may help while waiting for ambulance), such as redness, swelling, burning, stinging. Restless, clumsy, light sensitivity. General inflammation.
Argentum Nitricum - anxiety, OCD (compulsions and "harming thoughts"), gassiness and distended belly, conjunctivitis, hoarseness, and exhaustion.
Arnica Montana - pain and soft tissue injury, concussion, healing from surgery or dental work.
Belladonna - sudden onset fever, migraine, sensitivity to light, motion, or pressure; dizziness, sunstroke, insomnia (even though sleepy), swollen glands, high blood pressure.
Chamomilla - oversensitivity to pain, irritability and anger, teething pain or toothache, colic in infants.
Coffea Cruda (coffee) - insomnia, PTSD, feeling jittery and restless.
Gelsemium- anxiety, weakness and trembling, fatigue and exhaustion, headache, dizziness.
Histaminem (histamine) - allergy symptoms from hay fever, food allergies, insect stings/bites, etc.
Ignatia - PTSD (with frustration and hopelessness), depression with recent onset.
Magnesium Phoshphorica - menstrual pain and cramps
Nux Vomica (poison nut tree, contains strychnine) - symptoms from over-indulgence (food, alcohol, coffee, etc.), digestive and emotional symptoms, hernia, migraine, asthma, nausea, fatigue/exhaustion, influenza, urinary tract infections (with frequent need to pee), constipation, kidney stones, gallbladder inflammation, hepatitis, hay fever, and sensitive to light, sound, and odors.
Phosphorous - asthma, bronchitis, pneumonia, tightness in chest, dry lingering coughs, deep coughs, general fatigue, weakness, irritability. Helps clotting post-surgery and with nosebleeds, bleeding gums, heavy menstrual flow
Pulsatilla Nigricans - (meadow anemone aka windflower) - tends to be for women, changeable and unpredictable but also dogmatic, paradoxical in many ways, bottles up emotions, weepy, tends towards anxiety and depression, fearful. Kindness and sympathy help but also bring on tearfulness.
Rhus Tox - back pain (esp. with stiffness), arthritis, joint pain, Cervical Spondylosis (degeneration of vertebra in the neck), hernia (from weight lifting), hives (from exposure to cold)
Sepia Succus (ink from cuttlefish) - menstrual pain and symptoms, sensitivity to cold, hives (triggered by cold exposure), miscarriage, endometriosis, long term depression with indifference.
Sol - sunburn
Sulfur - hives (triggered by heat),
So far these notes are all in regard to classical homeopathy. There are several other forms of homeopathic treatment, one of which is the use of homeopathic nosodes. Nosodes are remedies made from diseased tissue itself or from the pathogen directly and are used when the symptoms being treated began during or following a specific illness such as influenza or Epstein-Barr Virus.
Homeopathics for anxiety (list includes Aconite Napellus, Argentum Nitricum, Arsenicum Album, Calcarea Carbonica, Gelsemium Sempervirens, Kali Arsenicosum, Kali Phosphoricum, Lycopodium Clavatum, Phosphorous)
Also - Phosphorous (heavy menstrual flow), Sepia (menstrual problems, irregular cycles, dysmenorrhea, morning sickness, uterus prolapsed, not well since menopause)
Remedies for hernia (list includes nux vomica, calcarea carbonica, lycopodium clavatum, rhus tox, silicea)
Remedies for post-surgery - Arnica (helps bruised and damaged tissue heal), Hypericum (reduces pain, speeds healing, and prevents infections), and Opium (this addresses the side effects of the anesthesia used)
Migraine - Cyclamen (beginning with visual disturbances/aura), Glonoinum (with head congestion), Iris Versicolor (with intense vomiting, nausea, or heartburn), Kali Phosphoricum (from stress), Natrum Carbonicum (from sun exposure), Natrum Muriaticum (occuring during menstruation), Bryonia (pain begins over left eye, constipation), Belladonna (pain worsens with movement, light, and pressure, rapid onset),