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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
–
–
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–
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–
–
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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?
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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
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