CANADA AUTISM ONE 2009 Sonja Hintz RN BSN

CANADA AUTISM ONE 2009 Sonja Hintz, RN, BSN True Health Medical Center Naperville, Illinois

Understanding Laboratory Testing from a Parent’s Perspective This presentation will review current labs ordered and how they can offer treatment options which will improve your child’s wellbeing.

Autism ICD 9 Code VS DSM 4 R VS IFP/IEP Autism’s presentation of external behaviors are the result of internal physiology. Our presentation will focus on how the behaviors correlate with physical issues. Attempt to see all behaviors your child has as a means of communication of his/her physical self.

Traditional Theories Refrigerator Mothers, poor parenting Purely a genetic disorder Hardwired malfunction of the brain Life long condition with no cure Diagnosis based on symptoms Treatment - one size fits all Medical treatment involves psychotropic drugs, with potential serious side effects “Treating autism with psychotropic meds is like treating a brain tumor with Motrin”

Epidemic of Autism, Lots of Questions Latest US statistics 1 in 150 children Genetic Epidemic? What is causing the Rise in Autism? Is Autism really that difficult to diagnose? Where all the autistic adults? Why are so many kids sick? What is happening to our environment that is triggering this epidemic? What does the future hold for our patients, families, communities? What will happen if we do not acknowledge this epidemic? What is the impact of every child that doesn’t recover? WE NEED SOLUTIONS NOW!!! WE NEED TO ACT NOW!!!

Mainstream Views on Autism http: //www. ninds. nih. gov/disorders/autism/detail_autism. htm#133913082 How is autism treated? There is no cure for autism. Therapies and behavioral interventions are designed to Educational/behavioral interventions: Therapists use highly structured and Medications: Doctors often prescribe an antidepressant medication to handle symptoms of Otherapies: There a number of controversial therapies or interventions available remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests. Most professionals agree that the earlier the intervention, the better. intensive skill-oriented training sessions to help children develop social and language skills. Family counseling for the parents and siblings of children with autism often helps families cope with the particular challenges of living with an autistic child. anxiety, depression, or obsessive-compulsive disorder. Anti-psychotic medications are used to treat severe behavioral problems. Seizures can be treated with one or more of the anticonvulsant drugs. Stimulant drugs, such as those used for children with attention deficit disorder (ADD), are sometimes used effectively to help decrease impulsivity and hyperactivity. for autistic children, but few, if any, are supported by scientific studies. Parents should use caution before adopting any of these treatments.

Autism Spectrum Disorders Traditional Approach Biomedical Model Diagnosis/Disease Based Individual/Patient Based Subjective DSM IV-R criteria Lack of objective findings Lack of unifying framework Current research focuses on improving diagnosis and classification Research impaired Classification provides management strategies Mental Disorder Genetic Not covered by medical insurance ICD 9 299. 0 Symptoms and Objective physical and chemical findings Biochemical, Metabolic, Immunologic, and Gastrointestinal Abnormalities Unifying framework Research based on treatment options Treatment is individualized Medical Illness Genetics and Environment define disorder (epigenetics) Not covered by medical insurance Numerous Diagnositic Codes

Autism can be treated! 1 of 150 kids have autism. Children that have recovered, actually had a diagnosis of Autism. It is unethical to withhold medical treatment, for a medical condition. Keeping autism solely as a behavioral disorder allows medical treatment to be denied and overlooked.

The Pediatrician’s Paradigm 299. 00 = Current ICD 9 diagnosis code for Autism (not reimbursable by insurance as a medical code because autism is a behavioral disorder and is not a medical condition) http: //www. talkaboutcuringautism. org/healthinsurance/health_ins_reimbursement_tips. htm Look at your child as having physical issues that impact their behavior, relay this to others. i. e. Make a list of these physical conditions

Alexander’s Puzzle Pieces Lost weight Slow growth as seen on his growth chart Declining well being Thinning hair Loss of speech Sweaty head Constipated Hand posturing Pale complexion Poor sleep Sour breath Frequent night waking Picky eating Poor fine motor control Poor muscle coordination Above list of symptoms Diagnosis= Autism? I disagree, my son is not Autistic he is SICK.

• Dr Bernie Rimland • • Founder : Autism Research Institute (ASI) Autism Society of America (ASA) Scientific Basis of the Biomedical Approach • Studies of High Dosage Vitamin B 6 and Magnesium in Autistic Children and Adults, 1965 - 2005 • www. autismwebsite. com/ARI/treatment/b 6 studies. htm • Twenty-one of twenty-two studies yielded positive results, including 13 double-blind placebo-controlled trials; even minor adverse effects rarely were seen

• The DAN (Defeat Autism Now) Approach • Founders of DAN- Dr. Baker and Dr. Pangborn • Combined effort of Parents, Physicians, and Researchers • Autism: Effective Biomedical Treatments, • Jon Pangborn, Ph. D. and Sidney M. Baker, M. D. , • • • Oct. 2005, this manual revolutionized the biomedical approach in the treatment of autism, PDD and related disorders. Defeat Autism Now! Consensus Report Defeat Autism Now! Think Tank Defeat Autism Now! Conference Recovered Kids – thousands of cases documented • Compilation of Studies Supporting the Biomedical Approach www. autismwebsite. com/ARI/dan/scientificfoundations. htm

Paradigm Shift: This is one picture with two animals represented at the same time. Autism is both physical and behavioral.

Autism defined as a physical illness Implies Treatment is Necessary You are the Coach, assemble your team players. Sometimes the team players need to be traded. Educate the professional team players about your child’s physical condition, writing down specifics.

Examine your Child Write down a concern/observation Ask yourself specific questions: When does this behavior happen? What occurs before I see this behavior? What did he/she eat today? Are there any signs of pain? What happens after you intervene?

True Health Medical Center Our practice currently treats over 1500 children world wide. Our patients have physical issues that impact their physical well being. Assessment and treatment of their physical well being brings around a positive change in that child's life.

• Causation Theories and • the Web of Interactions • Biologic and • Immunological • Triggers • Genetics • Timing • Autism • Environmental Toxicity • And Heavy Metal Burden • Heavy Metal Overload • Oxidative Stress • Mitochondrial Dysfunction • Gut Abnormalities • Immune Dysregulation • Chronic Inflammation

Basic Biomedical Strategy History and Physical Examination Laboratory Testing Clean Up Environmental Controls Dietary Interventions Address Gastrointestinal Health Foundational Nutrients Support underlying Immune Issues and Inflammation Support Methylation/Glutathione Pathways Heavy Metal Detoxification Hyperbaric Oxygen Therapy

• Intensity of Symptoms = Intensity of Treatment Educational and Behavioral Therapies Environmental Controls Dietary Interventions Nutrient Therapies Gastrointestinal Health Immune Issues and Inflammation Promotion of Natural Methylation and Glutathione Production Pharmaceutical Chelation and other Drug therapy Hyperbaric Oxygen Therapy

General Labs Basic Labs CBC with differential Comprehensive Metabolic Panel Iron and Ferritin Level Thyroid panel Blood Lead level Plasma Zinc Vitamin D 25 OH Blood Ammonia Serum Copper Reasons to run labs Weight loss Frequent infections Pica Poor attention Hyperactivity Picky eater Maldigestion Malabsorption Poor Growth

Laboratory Testing Options CBC Comprehensive Metabolic Panel Serum Copper Plasma Zinc Hair Analysis Thyroid profile Blood Lead Ammonia Intracellular Minerals and Metals Urine Essential Minerals Essential Fatty Acids Plasma or Urine Amino Acids Plasma cysteine, sulfate, r. GSH Urine Organic Acids Stool Microbiology Stool Mycology Stool Parasitology Celiac Panel Ig. G, Ig. E Allergy Panels Immune Markers Immunoglobulin Levels (Ig. G, Ig. A, Ig. M) T lymphocyte Panel (CD 4, CD 8) Natural Killer Cell Activity PANDA’s Profile Anti MBP Ab Anti NAFP Ab Ig. G Food Ab Panel Vaccine Titers Viral Titers Urinary Peptides Hormone Studies Neurotransmitter Levels Genomics – SNPs Urine/ Fecal Toxic Metals Urinary Porphryins Urinary Neopterin Urinary 8 -OH Guanosine, Isoprostane Organophosphate Levels Mitochondrial Markers Ammonia, Pyruvate, Lactic Acid, Carnitine Panel 21

Immune Dysregulation Th 1 and Th 2 skewing Abnormal cell-mediated immunity (Molloy, 2006) Abnormal T-cell subsets, decreased NK cells, abnormal cytokines, Th 2 skewing (Zimmerman, 1998; Gupta, 1996) Decreased secretory Ig. A Pro-inflammatory cytokines, TNF alpha, IL-6 (Jyonuchi, 2001; Maes, 2001) Mercury, Lead, and Aluminum cause Th 1/Th 2 skewed immune system Pro-inflammatory Cytokines in the Brain MCP-1, TGF beta-1 (Vargas, Pardo, Laurence, 2005) Abnormal EEG, Seizure activity Microglial Activation (Vargas, Pardo 2005) Increased Autoimmunity Autoantibodies to neural antigens (Connolly, 1999) Mylein basic protein and Neuronal Axonal Filament Protein Antibodies (Gupta, 1996 /Singh, 1997)

Behavioral presentation and labs used to assess the physical well being • CBC • Porphyrin • Anemia • Iron/Ferritin/TIBC • Excessive Chewing (Pica) • Lead Poisoning • Blood Lead level

Lead (Pb) Burden Children absorb Pb more readily than adults Fluoride increases Pb absorption. Lead burden cause learning disability, ADD, hyperactivity, deliquency, . . . Synergy with Mercury increases toxicity exponentially. Safe threshold changed from 60 ug/dl to 10 ug/dl Children with blood levels of 10 mcg/dl, the upper limit of the “safe range”, have IQs 7. 5 points below those of kids whose blood Pb levels are 0 -1 mcg/dl

Evaluation of Heavy Metal Toxicity Provocative Testing is often unconvincing in ASD due to impaired detoxification. Urine Toxics, Fecal Toxics, and Hair Analysis show excretion of toxic metals. We have no way to determine total body burden. RBC Blood testing is a poor measure of chronic heavy metal burden. However, blood may show acute exposure. There are no standards for diagnosing chronic toxicity. There are no tests to determine body burden of metals. Lead is a bone seeker and can only be measured in blood 12 hrs after exposure, therefore blood Pb is not an adequate indicator of low level chronic toxicity. Mercury has an affinity for fatty tissue and a developing brain, and is very rarely seen in blood. Urinary porphyrin testing

OCD Behaviors Stimmy behavior: Verbal, Perseverative, Scripting, Rewinding Videos Obsesses on placement of objects • ASO titer • Strep/PANDAS • Anti. Dnase B for Strep • Obsessive Compulsive Behaviors • Viruses • Quantitative Viral Titers

Strep Physical Presentation Poor eating Clearing the throat Swollen lymph glands Obsessive thoughts/behavior Seizures Motor tics Someone else in the family has strep Verbal stimming Treatments Biofilm treatment esp if strep is found in the stool Antibiotics: Zithromax and others. Probiotics and Prebiotics Immune supportive agents: IVIG Enzymes for biofilm Berberine Golden Seal Oregon grape root

Mitochondria Dysfunction is a common finding in Autism Mitochondria are the energy power house of our body Physical Presentation in Autism Headaches/Headbanging Low muscle tone/hypotonia Poor coordination Fatigue with activity Failure to gain weight Intolerance to fasting Seizures GERD

Mitochondrial Dysfunction Developmental regression and mitochondrial dysfunction in a child with autism. J Child Neurol. 2006 Feb; 21(2): 170 -2. Poling JS Aspartate aminotransferase was elevated in 38% of patients with autism compared with 15% of controls (P <. 0001). The serum creatine kinase level also was abnormally elevated in 22 (47%) of 47 patients with autism. These data suggest that further metabolic evaluation is indicated in autistic patients and that defects of oxidative phosphorylation might be prevalent. Mitochondrial dysfunction in autism spectrum disorders: a populationbased study. Dev Med Child Neurol. 2005 Mar; 47(3): 185 -9 Oliveira G Plasma lactate levels were measured in 69 patients, and in 14 we found hyperlactacidemia. Five of 11 patients studied were classified with definite mitochondrial respiratory chain disorder, suggesting that this might be one of the most common disorders associated with autism (5 of 69; 7. 2%) and warranting further investigation. Relative carnitine deficiency in autism. J Autism Dev Disord. 2004 Dec; 34(6): 615 -23 Filipek PA Values of free and total carnitine (p < 0. 001), and pyruvate (p = 0. 006) were significantly reduced while ammonia and alanine levels were considerably elevated (p < 0. 001) in our autistic subjects. The relative carnitine deficiency in these patients, accompanied by slight elevations in lactate and significant elevations in alanine and ammonia levels, is suggestive of mild mitochondrial dysfunction.

Mitochondria Testing Screening from the pediatrician: Ammonia plasma level Lactic Acid (blood) Carnitine level (blood) Pyruvic Acid (blood) Urinary Methylmalonic Acid Our Practice: Organic acid test Metabolic Analysis Profile These test look at the Kreb cycle metabolites

Mitochondrial Support and ATP Production The various enzyme assemblies require vitamins B 1, B 2, B 3 (NADH), B 5, biotin, and alpha-lipoic acid as coenzymes. Magnesium is also required by most of the glycolytic and Krebs' cycle enzymes as a mineral co-factor. The electron transport chain especially relies on NADH and CO Q 10 to generate the bulk of the cell's ATP. Idebenone is a synthetic variant of Co Q 10 that may work better than Co. Q 10, especially in low oxygen conditions, to keep ATP production going in the electron transport chain. Acetyl l-carnitine may regenerate aging mitochondria that are suffering from a lifetime of accumulated free radical damage. Potential Krebs Cycle Support Malic Acid Fumaric Acid Succinic Acid Alpha Keto. Glutarate (careful)

Immunizations Traditional medical practice is one size fits all Titer Levels can be checked to assess for immunity after a vaccination is given When checking immunity Ig. G QUANTITATIVE titer needs to be done this gives you a level of immunity with a number i. e. Measles Ig. G quantitative titer

Puzzle Pieces related to the GI Tract Stomach Problems can present with: Food refusals Arching of the back Toe walking Bloated stomach Daily BMs, yet stools are large or scanty Laying over objects to put pressure on the stomach Head Banging Sour Breath Frequent night waking History of colic Excessive chewing or biting of the arm

Gastrointestinal Treatment GI doctors need to be team players. Present a detailed account of the observed behaviors and how you see this relates to his physical well being and/or pain. When my child has a BM he cries, he refuses to use the toilet. When my child eats, I see him arch his back, and he burps a lot. My child is able to defecate a stool the size of the Sears (Willis) Tower, and I keep a plunger on hand at all times. Because he has a hard time going he is using his finger to empty the stool out himself.

Clean up the Child’s Gut Daily bowel movements are a goal. Add digestive enzymes with meals. Start high potency probiotics (acidophilus and bifidus). Start treatment for dysbiosis depending on symptoms and lab findings. If persistent symptoms: Eliminate disaccharides from diet for 3 -6 months Specific Carbohydrate Diet Consider referral to knowledgeable GI specialist Consider trial of IV Secretin Add natural anti-inflammatory agents. Keep close eye on gut during any detox regimen. 35

Dietary Options • Casein/Gluten Free Diet Persistent Gut Issues Hyperactivity/Stimming Specific Carbohydrate Diet Avoid Excitotoxins Body Ecology Diet Low Phenolic/Feingold Diet Low Oxalate Diet Low Copper Diet Elimination/Rotation Diet 36

GI Testing Behaviors you might see: Picking or scratching at the rectum Frequent night waking Smelly stools Refusal to be toilet trained due to pain with stooling. Stool Test Upper Endoscopy Lower Endoscopy Contact other parents to find MD in your area.

How to be noticed at your next GI appointment A picture is worth a thousand words. Take a picture of your child’s stool if you find it to be abnormal Video tape a concerning behavior that shows your child’s distress. Keep a chart of the types of stool using the Bristol Stool Chart

Microbial Flora Bacteria are a major component of colonic material Hundreds of species/strains exist in the intestines Metabolic activity affects the host Digestion, Energy Production, Metabolism Modulation of the immune system Destruction of toxins and mutagens Repression of pathogenic microbial growth Preventing allergy Preventing inflammatory bowel disease and inflammation The Colon has an obligate need for bacterial fermentation products (SCFA, short chain fatty acids) “the species composition and biochemical activities of the microbial flora are determined primarily by diet and are strongly influenced by carbohydrate availability” “Composition and Metabolic Activities of Bacterial Biofilms Colonizing Food Residues in the Human Gut” (Macfarlane Sept 2006)

Gastrointestinal Abnormalities Maldigestion Malabsorption Fat Soluble Vitamin Deficiencies Essential Fatty Acid Deficiencies, Omega 3 Deficiencies Essential Amino Acid Deficiencies Dysbiosis Decreased activity of digestive enzymes (Horvath, 1999. Buie, 2004) High levels of opioid peptides found in urine of autistics. (Reichelt, 1997) Ig. G Food Sensitivities Dysbiosis or altered bowel flora (Rossenau, 2004) Clostridial overgrowth (Sandler, 2002, Mc. Fabe 2007) Persistent measles virus (Wakefield, Krigsman) Gut Inflammation Autistic Enterocolitis, Lymphoid Hyperplasia (Wakefield, 1998) Increased intestinal permeability leading to food sensitivities and autoimmunity (Vodjani, 2002) Increased pro-inflammatory cytokines – LP, TNF alpha, IFN gamma (Ashwood, 2004; Jyonuchi 2005) Proinflammatory response to dietary proteins (Jyonuchi, 2004) Proinflammation similar to Autistics found in immunized Monkeys (Hewitson, 2008)

GI Health Markers Stool testing CDSA CPP x 3 Microbiology Urine organic acid test (OAT) Great Plains lab- OAT Metabolic Analysis Profile (MAP) Genova diagnostics

Yeast symptoms Giggly, inappropriate laughing Foggy, spacey Change in bowel movements (foul/yeasty smelling stools), gas, and bloated belly Yeasty rash/diaper rash, white coating on tongue, red ring around the anus, ringworm, cradle cap Bedwetting or accidents Sleep disturbance or Night waking Hyperactivity, hand flapping, toe walking Sugar craving

More Treatment options… Antifungals Drugs Herbals Nystatin, Ampho B Fluconazole Itraconazole Ketoconazole Berberine Grapefruit Seed Extract Oil of Oregano, Pau d’Arco Garlic, Samento Homeopathy

Parasites What may keep you and your child up at night

Signs and Symptoms of Parasites Discomfort and bloating of stomach Itchy buttocks, night waking, fecal smearing Diarrhea and constipation Teeth grinding Mal absorption of nutrients, pica, insatiable appetite Allergies Behavior changes and/or aggression, worse at full moon Picking Biting Restlessness

Treatment for Parasites Probiotics Herbs Wormwood Black walnut Pumpkin seeds Clove Coconut oil Homeopathy Antiparasitic medications Metronidazole Paromomycin

They don’t go down without a fight!!

Potential reactions when eliminating these pathogens Symptoms Irritability, aggression, behavioral issues Increased stimming, hyperactivity, sleeplessness Skin rash, diaper rash, fever Possible Causes Side effect of supplement or allergy to drug Yeast or Bacterial Flare-up (Balancing act) Detox Reaction = Too rapid of an effect leading to vitamin or mineral deficiency, oxidative stress, liver or kidney stress Die off = Rapid death of gut bugs, leading to excess release of toxins and subsequent liver or kidney stress

Treatment Approach Rate severity, if severe stop supplement, notify physician Treat with Activated charcoal/Bentonite clay and/or Alka Seltzer Gold, homeopathic remedy, if helpful probably die off Rule out dysbiosis, treat accordingly Check ammonia level Add Liver Support Milk thistle, artichoke extract, dandelion root Give at bedtime

IMPORTANT to continue to monitor symptoms. Labs can only help point us in the right direction.

Find the puzzle pieces Identify the color and shape of your puzzle piece Assemble professionals that can help build your puzzle

Resources http: //www. autism. com - Autism Research Institute Pub Medline is an online medical journal web site: http: //www. ncbi. nlm. nih. gov/sites/entrez Book: Dorland’s Illustrated Medical Dictionary Book: Prescription for Nutritional Health and Healing by Balch and Balch Keep all your reports in a binder Join parent support groups in your area Join yahoo groups Attend conferences

Additional Sources of Information Autism: Effective Biomedical Treatments, Pangborn and Baker “Autism, A Novel Form of Mercury Poisoning”, Bernard, et al. , 2000 (www. safeminds. org and autism. org) Changing the Face of Autism, Bryan Jepson, MD, Jane Johnson Healing the New Childhood Epidemics, Ken Bock, MD Children with Starving Brains, Jaquelyn Mc. Candless MD Special Diets for Special Kids, Lisa Lewis Evidence of Harm, David Kirby

We need: More research into biomedical interventions Safer vaccines ( to “green our vaccines” ) Access for patients to obtain treatment options Insurances companies to recognize that autism is a medical not psychiatric condition More doctors to become educated To develop new standard of care strategies

Patients of True Health Medical Center who have Recovered or are Close to Losing a diagnosis of Autism!!! David London Alex Terry Michael Ethan Aravind Meddha Alec Brian Hendrew Alexis Ryan Zach Jack Nicholas Axel Michael John Kaden Zach Alex Joey Aidan Nicholas Murad Parker Hanna Ben Charles Michael Ty Tyler Nathaniel Dylan Jeremy Mason Sebastian Eric Spencer. Ethan Tom Alex Henry Zach Rachel Bailey Anna Zane Luke Matthew Alex Richard Trevor Eric Alex Joseph Daniel Clay. . . Joseph Rachel August Cameron Michael Kirby Max Ian Eve Andrew