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How to Get Your Mainstream Physician To See Beyond Autism Autism ONE Conference May 2009 Sonja Hintz, RN, BSN Sym Rankin, CRNA, APN True Health Medical Center Naperville, Illlinois Autism • ICD 9 Code VS DSM4R 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. • We will review use of Anesthesia, as well as discuss the use of various pharmaceuticals. 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 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. • Educational/behavioral interventions: Therapists use highly structured and 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. • Medications: Doctors often prescribe an antidepressant medication to handle symptoms of 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. • Other therapies: There are a number of controversial therapies or interventions available for autistic children, but few, if any, are supported by scientific studies. Parents should use caution before adopting any of these treatments. 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 as a behavioral disorder allows medical treatment to be denied. The Pediatrician’s Paradigm 299.00 = Current ICD9 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 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. 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 Behavioral Observations Head Banging ASO titer Strep/PANDAS AntiDnase B for Strep Obsessive Compulsive Behaviors Viruses Provides counter pressure GI/Sensory Quantitative Titers Assess for Pain 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 OCD Behaviors • Stimmy behavior: Verbal, Perseverative, Scripting, Rewinding Videos • Obsesses on placement of objects ASO titer Strep/PANDAS AntiDnase B for Strep Obsessive Compulsive Behaviors Viruses Quantitative Viral Titers Mitochondria • 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 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 Dysfunction Research Developmental regression and mitochondrial dysfunction in a child with autism. 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 population-based 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 Disorder. 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. 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 IgG QUANTITATIVE titer needs to be done – this gives you a level of immunity with a number – i.e. Measles IgG quantitative titer Puzzle Pieces related to the GI Tract • Constipation/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 Abnormalities • Maldigestion – Decreased activity of digestive enzymes (Horvath,1999. Buie, 2004) – High levels of opioid peptides found in urine of autistics. (Reichelt, 1997) – IgG Food Sensitivities • Malabsorption – Fat Soluble Vitamin Deficiencies – Essential Fatty Acid Deficiencies, Omega 3 Deficiencies – Essential Amino Acid Deficiencies • Dysbiosis – Dysbiosis or altered bowel flora (Rossenau, 2004) – Clostridial overgrowth (Sandler, 2002, McFabe 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) 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. 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 Comprehensive Stool Microbiology 4/10/08 8/15/08 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 Part 2: Anesthesia Surgical Anesthesia and Autism http://www.autism.com/families/life/kirz.htm Dental Anesthesia for the Autistic Child • http://www.autism.com/families/life/dental.htm • “There are no data that any anesthetic drug(s) cause or worsen autism, nor are there any published data on preferred drugs for anesthetizing autistic children.” The American Academy of Pediatrics Treatment Plan for Autism “Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians” http://www.aap.org/healthtopics/Autism.cfm Professional Resources Identification and Evaluation of Children with Autism Spectrum Disorders (Clinical Report) Management of Children with Autism Spectrum Disorders (Clinical Report) What Your Anesthesiologist Does Not Know • That your child has a medical disease not a mental disease. • Our children have gastrointestinal dysfunction, immune system dysregulation, inflammation, mitochondrial dysfunction, heavy metal poisoning, oxidative stress, chronic inflammation. • May not be able to metabolize drugs efficiently; impaired detoxification. Awareness Cerebral Palsy vs Autism ANESTHESIA • Amnesia (sleep, forget) • Analgesia (pain relief) • Muscle Relaxation (immobilization) Induction of Anesthesia • Intravenous • Inhalation Versad Midazolam • A benzodiazepine that is used for sedation, amnesia, anti-anxiety. • Short acting; used in surgery settings; given as pre-op medication. • Oral, nasal, IM or IV. • May be combined with ketamine and atropine in oral or IM. Diprivan Propofol • A short-acting intravenous agent used for induction and maintenance of general anesthesia; also used for sedation. It is not an analgesic (pain relief). • Caution with allergy to soy or egg. Contains soybean oil and egg phospholipid. Sevoflourane Ultane • Used as an anesthetic gas for inhalation induction in children and for maintenance of anesthesia. • Only 2-5 % of the drug is metabolized in the body. Fentanyl Sublimaze • Potent short acting narcotic for pain. • Used in a hospital setting. Ketamine • Dissociative anesthetic. • Does not depress respirations. • Used as injection for sedation to start an IV and for short surgical procedures. • Given orally, IM or IV. • May be given with Versad. • Typical side effects include open eyes, nystagmus, increased salivation and emergence delirium. Nitrous Oxide • • • • • Used as an anesthetic gas for sedation. Used as a carrier gas with sevoflourane for induction. Not used as frequently now due to side effects. Depletes B12/ folate system. Deactivates methionine synthase; restoration takes several days; dependent on genetics; MTHFR (C677T). • Increases homocysteine; promotes increased oxidative stress; may activate NMDA glutamate receptors. • Can cause hematologic problems, neuropathy and neurotoxic effects. Adverse Effect of Nitrous Oxide in a Child with 5,10-Methylenetetrahydrofolate Reductase Deficiency • Rebecca R. Selzer, Ph.D., David S. Rosenblatt, M.D., Renata Laxova, M.D., and Kirk Hogan, M.D., J.D. The New England Journal of Medicine, Volume 349:45-50 July 3, 2003, Number 1 • http://content.nejm.org/cgi/content/full/349/1/45 When Nitrous Oxide is No Laughing Matter • Victor C. Baum, M.D., Departments of Anesthesiology and Pediatrics, University of Virginia, Charlottesville, VA, USA • Pediatric Anesthesia Volume 17 Issue 9 Pages 824 - 830 • http://www.pedsanesthesia.org/meetings/2007 winter/pdfs/BaumFriday3-9-07-1050am.pdf Nitrous Oxide Induced Elevation Of Plasma Homocysteine And Methylmalonic Acid Levels And Their Clinical Implications The Internet Journal of Anesthesiology 2004 : Volume 8 Number 2 Pramood C. Kalikiri M.D., PH.D. Dept of Physiology Louisiana State University Medical Center New Orleans LA USA Reena Sachan Gajraj Singh Sachan M.D. Madras Medical College Chennai India Early Exposure to Anesthesia and Learning Disabilities in a Population-based Birth Cohort • Wilder, Robert T. M.D., Ph.D.; Flick, Randall P. M.D., M.P.H.; Sprung, Juraj M.D. et al • Anesthesiology The Journal of the American Society of Anesthesiologist, Inc April 2009 What is the Toxic Tipping Point? • • • • • • • • • • Nutritional status Genetics Infection Chemicals Antibiotic Use Environmental exposure Vaccines Liver detoxification status Drug exposure Timing Discuss with Your Anesthesiologist • Ask not to use nitrous oxide. Most of our kids have a B12 deficiency. • Discuss medical/metabolic problems of your child. • Consider placement of IV without sedation. • Inform anesthesiologist of all medications, supplements, and IgE allergies. • Make sure it is understood that your child has difficulty detoxifying drugs. • Keep the anesthetic as simple as possible. • Discuss any other drugs that might also be given, ex. Acetominophen, steroids, antiemetics… After the Anesthetic Liver Detoxification Protocols • • • • • • • • Activated Charcoal DMG, TMG, methyl B12, methylfolate Epsom Salt Baths Silymarin (milk thistle) Bentonite Clay Antioxidants - Vitamin A, C , E Magnesium Reduced Glutathione Other Drug Considerations: Augmentin (Amoxicillin Clavulanate) • Amoxicillin and Clavulanate Acid. • Clavulanate acid fermentation produces large amounts of urea and ammonia. • http://www.ncbi.nlm.nih.gov/pubmed/15607562 Tylenol Acetaminophen • Reduces glutathione production • Phenolic compound • Rosemary Waring study — correlation between low sulfate levels and ASD – activity of phenylsulfotransferase (PST), the enzyme catalyzing the sulfation of acetaminophen, was abnormally low in autistic children Other Options to Treat Fever • Fever – a natural response to infection • Tepid baths • Cool damp cotton socks with dry wool socks on top • Peppermint essential oil in carrier oil on bottom of feet • Ibuprofen (dye free) References • Eger E, Hogan K: Current Status of Nitrous Oxide. March 2007 • Schure A: Difficult Pediatric Patients: Anesthetic Considerations for Children with Behavioral Problems. Current Reviews for Nurse Anesthetist. Lesson 21 Volume 31 2/26/2009 • Van Der Walt JH et al: An audit of perioperative management of autistic children. Paediatric Anaesth 2001: 11:401-408 • Baum V: When nitrous oxide is no laughing matter. Pediatric Anesthesia 2007: 17 ,824-830 Thank You and Good Luck on Your Journey 51