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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 DSM4R VS IFP/IEPAutism'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..
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1. CANADA AUTISM ONE 2009 Sonja Hintz, RN, BSN
True Health Medical Center
Naperville, Illinois
2. 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.
3. 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.
4. 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”
5. 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 are 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!!!
6. 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.
7. Autism Spectrum Disorders Traditional Approach
Diagnosis/Disease 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
Biomedical Model
Individual/Patient Based
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
8. 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.
9. 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/health-insurance/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
10. 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.
13. Paradigm Shift: This is one picture with two animals represented at the same time. Autism is both physical and behavioral.
14. Autism defined as a physical illnessImplies 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.
15. 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?
16. 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.
18. 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
20. 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
21. 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, rGSH
Urine Organic Acids
Stool Microbiology
Stool Mycology
Stool Parasitology
Celiac Panel
IgG, IgE Allergy Panels Immune Markers
Immunoglobulin Levels (IgG, IgA, IgM)
T lymphocyte Panel (CD4, CD8)
Natural Killer Cell Activity
PANDA’s Profile
Anti MBP Ab
Anti NAFP Ab
IgG 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
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22. Immune Dysregulation Th1 and Th2 skewing
Abnormal cell-mediated immunity (Molloy, 2006)
Abnormal T-cell subsets, decreased NK cells, abnormal cytokines, Th2 skewing (Zimmerman, 1998; Gupta, 1996)
Decreased secretory IgA
Pro-inflammatory cytokines,TNF alpha, IL-6 (Jyonuchi, 2001; Maes, 2001)
Mercury, Lead, and Aluminum cause Th1/Th2 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)
23. Behavioral presentation and labs used to assess the physical well being
24. Lead (Pb) Burden Children absorb Pb more readily than adults
Fluoride increases Pb absorption.
Lead burden can cause learning disability, ADD, hyperactivity, deliquency,...
Synergy with Mercury increases toxicity exponentially.
Safe threshold changed from 60ug/dl to 10ug/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 0-1mcg/dl
25. 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
26. OCD Behaviors Stimmy behavior: Verbal, Perseverative, Scripting, Rewinding Videos
Obsesses on placement of objects
27. 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
28. 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
29. 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 population-based study.Dev Med Child Neurol. 2005 Mar;47(3):185-9Oliveira 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):615-23Filipek 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.
30. 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
31. Mitochondrial Support and ATP Production The various enzyme assemblies require vitamins B1, B2, B3 (NADH), B5, 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 Q10 to generate the bulk of the cell's ATP.
Idebenone is a synthetic variant of Co Q10 that may work better than CoQ10, 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 KetoGlutarate (careful)
32. 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
33. 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
34. 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.
35. 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.
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36. 36
37. GI Testing Stool Test
Upper Endoscopy
Lower Endoscopy
Contact other parents to find MD in your area. 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.
38. 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
39. 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)
40. 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)
41. GI Health Markers Stool testing
CDSA
CPP x3
Microbiology
Urine organic acid test (OAT)
Great Plains lab- OAT
Metabolic Analysis Profile (MAP) Genova diagnostics
42. 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
43. More Treatment options… Antifungals
Drugs
Nystatin, Ampho B
Fluconazole
Itraconazole
Ketoconazole
Herbals
Berberine
Grapefruit Seed Extract
Oil of Oregano, Pau d’Arco
Garlic, Samento
Homeopathy
44. Parasites What may keep you and your child up at night
45. 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
46. Treatment for Parasites Probiotics
Herbs
Wormwood
Black walnut
Pumpkin seeds
Clove
Coconut oil
Homeopathy
Antiparasitic medications
Metronidazole
Paromomycin
47. They don’t go down without a fight!!
48. 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
49. 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
50. IMPORTANT to continue to monitor symptoms.
Labs can only help point us in the right direction.
51. Find the puzzle pieces
Identify the color and shape of your puzzle piece
Assemble professionals that can help build your puzzle
52. 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
53. 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 McCandless MD
Special Diets for Special Kids, Lisa Lewis
Evidence of Harm, David Kirby
54. 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
55. Patients of True Health Medical Center who have Recovered or are Close to Losing a diagnosis of Autism!!! David London Alex Charles Michael
Terry Michael Ty Tyler Joseph
Michael Ethan Nathaniel Dylan Rachel
Aravind Meddha Jeremy Mason August
Alec Brian Sebastian Eric Cameron
Hendrew Alexis Spencer Ethan Tom
Ryan Zach Alex Henry Michael
Jack Nicholas Zach Rachel Kirby
Axel Michael Bailey Anna Max
John Kaden Zane Luke Ian
Zach Alex Matthew Alex Eve
Joey Aidan Richard Trevor Eric
Nicholas Murad Alex Joseph Andrew
Parker Hanna Ben Daniel Clay ...