Creating Parent – Physician

Partnerships for Successful Recovery

Starring
Jacquie Mancini as the Mom
Adriana as the Kid
& a large supporting cast including:
James Jeffrey Bradstreet MD, MD(H) FAAFP
Director, ICDRC
321-259-7111
www.icdrc.org
Grounds for Biomedical Intervention?

 Objective Biomarker indicating serious condition – diabetic

model with glucose and insulin.
 Apply this to oxidative stress, autoimmunity, heavy metals,
dysbiosis, nutritional deficiencies and etc…
 Serious, dangerous and life-changing medical conditions
justify treatment based on reasoned approach even if proof
of cure is not available.
 Risk benefit estimates of any intervention become more
critical where objective safety and efficacy are lacking.
 Cost analysis of intervention should include time stress
and money.
Biomarkers and Benchmarks

 Itis critical to know the unique features of

your child/patient.
 Must define current status and measure
progress so the success of each intervention
can be assessed.
 Benchmark neuropsychological testing
critical to documentation of progress.
 Allows objectivity in determining the course
of biological, behavioral and educational
interventions.
Oxidative Stress

 Urine
– 8-OHG
– Isoprostane
 Blood;
– Transferrin, Ceruloplasmin,
– Ammonia and Lactate
– Reduced Glutathione or GSSG - if available.
Methylation and Transsulfation

 Urine
– Methylmalonic acid – B12 indicator
 Plasma
– Fasting Cysteine
– Methionine
– Taurine
– Sulfate
 B12 and Folate levels
Immune Factors

 Urinary: Neopterin and Biopterin

 Blood:
– Anti-endothelial Antibodies at WUSTL,
– ASO and Anti-DNase B,
– IgG subclasses, IgM, IgA and IgE,
– CRP, Cytokines, TNF alpha, Complete Blood Count,
– Immune cell counts (CD and NK cell specifics)
 Special: intestinal permeability to lactulose and mannitol.
 Fecal
– IgA Gluten, Casein, Egg, Soy etc.
– Pathogens: Yeast, Bacteria (both Probiotic and Pathogens)
– Calprotectin, Eosinophil Protein X
 Antibody and PCR testing for HHV6, EBV, CMV, Chlamydia and
Mycoplasma
Clostridia, Aerobes and Yeast
 Urine: Organic Acid test for markers of
anaerobic bacterial metabolism: Propionic
acid derivatives (HPHPA and others) and
yeast metabolites. Arabinose by itself is not
reliable.
 Feces
– Culture is difficult and not generally reliable
– PCR also challenging but will over time gain
enough reliability to be gold standard – currently a
research tool in my opinion.
Cerebral Spinal Fluid (CSF)
 Special Investigations and Research
 If Blood is positive for pathogens by PCR (DNA or
RNA) then comparative CSF PCR data is important if
treatment is going to be prescribed. Examples:
HHV6, EBV, CMV, Mycoplasma and Chlamydia
 Measles Virus testing will eventually become
clinically relevant again. No commercially reliable
testing available at this time.
 Immune Markers: TNF alpha, cytokines, neopterin,
autoantibodies.
Heavy Metals

 Blood:
– Packed Erythrocyte Minerals and Toxic Metals
– Lymphocyte metallothionein pre/post induction
 Urinary:
– Fractionated Porphyrins
– If porphyrins elevated or history strongly
suggestive, get post-chelation challenge 6 hour
urine toxic metal assay
Case Presentation
 Female, DOB: 9/24/1998
 Fetal Distress During Hospitalization for pre-
eclampsia > Emergency C Section
 Born 6 weeks premature C-Section good APGARS
 Sepsis in NICU – first antibiotics
 Hepatitis B vaccine on 10/3/98: age less than 36
weeks compared to IUG wt ~ 2 Kg
 Readmitted at 6 weeks with bloody diarrhea and
changed to hypoallergenic formula.
 Mercury from Thimerosal = 237.5 mcg
Video SEGMENT 1
 (Journal of Pediatrics 2000;136;679-81)

Toxic threshold
for child

1 nmolar Thimerosal inactivates methionine synthase, (Waly et al Molec Psych 2004)

Multiple URIs and Ear Infections

 Chronic use of antibiotics

 Poor early sleep patterns
 Food intolerances
 Hyperlexia
 Dyspraxia
 Obsessions and restricted interests
 Irritability
 Toe walking
 Huge Bowel Movements
 Poor transitions and little eye contact
 Delay suspected by first birthday.
Biomarker Summary

 Positive Antibodies to Myelin Basic Protein

 No Lactobacillus on Stool Culture
 Moderately Hi levels Hg on PRBC
 Borderline Zn deficiency
 Immune Cell Abnormalities
 Multiple Food Allergies: Esp Milk
 Elevated Coagulant Markers
 No Endovasculature Antibodies w/ WUSTL (favorable)
 Low Cysteine and Sulfate
Biomarker Summary continued

 Elevated Neopterin (marker of cell mediated

inflammation and autoimmunity)
 HHV6 NEG
 EBV POS by age 7
 CMV NEG
 MBP auto-antibodies cleared with IVIG
 Main theory of disease in this child: Immune
Dysregulation & Autoimmunity to Brain
Neuroscience Letters 241 (1998) 17–20
“The observed increase in urinary
native neopterin in autism agrees
with our previous observations and
indicates activation of cellular
immunity in these children thus
supporting the possible involvement of
autoimmunity in the pathogenesis* of
autism.”

Messahel et al, Neuroscience Letters 241 (1998) 17–20

*Pathogenesis = the cause of disease

Neopterin prior to Spironolactone, but
on monthly IVIG
Neopterin after Spironolactone and
Prolonged use of IVIG
Main Biomedical Interventions

 Diet: GFCF and Eliminated Major Allergens

 IV Secretin
 IVIG (Human Immunoglobulin = Antibodies) 2004
 Probiotics
 Antifungals and Antibiotics
 Valacyclovir for EBV (mononucleosis virus)
 Zinc and B6
 Intravenous N-Acetyl Cysteine
 IV DMPS Chelation
 WISC IQ Testing pre/post IVIG & ABA

 11/2003 = 77 Borderline Deficient

IVIG
 11/2004 = 89 Low Average
 12/2006 = 99 Average
 09/2007 = 113 High Average
 Total gain = +36 pt
 Percent Change = +47% gain in less than

4 years with combined Biomed and Combo

ABA and other therapies.
Parental Strategies

Jacquie Mancini
 Find a DAN Doctor

 All milestones were way behind.

 Adriana was prescribed antibiotics 18 times by age 2 ½ .
 Went to 5 Pediatricians no answers.
 A Pediatrician finally listened to us.
 We were told our baby had developmental delay.
 In 2001, went to a conference and heard Drs.Wakefield and
Bradstreet speak. They described all her symptoms. I became
physically ill realizing our baby had autism.
 Dr. Bradstreet was the one we were most comfortable with.
 That was the beginning of our long journey.
 Start To Create Your Team

 Register with CARD or ABA group – Get on

their waiting list.
 Speech Therapist
 Occupational Therapist
 Certified Behavior Analyst/Tech
 Social Skills Group
 Autism

 Inmy experience people tend to look at Autism

as a behavioral disorder not a biological one
 Whether it is family, friends, teachers, staff, or
treating professionals EDUCATE THEM to
Breakdown their Fears
 Upon Diagnosis “At Home”
 Develop a structured environment and daily routine
 Be consistent, predictable and supportive
 Use the same visuals/hands on cues as teachers
 www.dotolearn.com is a great website that has free schedules
and amazing visuals to print out and use
 Make sure family members understand GF/CF diet (no
cheating)
 Give positive direction
 Avoid negative reinforcement
 Find a Pediatric Neuropsychologist
BENCHMARK!

 Get a comprehensive neuropsychological evaluation

 Establish an IQ/Baseline: THEN DON’T FREAK
OUT
 This will assist you in identifying cognitive strengths
and weaknesses
 Treatments and interventions may vary depending
on overall patterns of behavior

 http://theaacn.org/diplomates/database/view.php
Educate Yourself on Your Child’s Rights
 Be an advocate for your child’s needs in the school and community
 Choose a school that can provide accommodations (i.e., through
individual education plans)
 Education regarding federal law mandates (IDEA) and school
accommodations available is paramount
 Check out the classrooms (we toured the school twice before we
decided to enroll)
 Meet with the Principal

www.wrightslaw.com
I.E.P. Meeting

 Bring letter from DAN doctor explaining your child’s biological issues
 Educate the staff on your child’s issues
 Bring a picture of your child and a detailed list of strengths/special
skills
 List your concerns ( i.e. wandering, being bullied)
 Always bring a snack (i.e. cookies)
 This meeting is for your child- Do not be defensive--ADVOCATE
 Bring letters from therapists working with your child stating current
status
 Be involved when developing interventions and coping strategies
within the classroom setting
 Schedule a transition meeting for next year (i.e. meet the teacher)
 Examples of What I Asked For
 Placement in an inclusion classroom with 1:1 aide (for medical needs
too)
 Anti-Bullying intervention for class/school
 Second set of books, preferential seating, shortened assignments
 Daily progress notes
 Behavioral Intervention Plan
 Adriana’s program be reviewed every 9 weeks to determine if IEP
needs to be changed
 Weekly communication with teachers to coordinate material
coverage and progress
 Adult intervention to assist Adriana in making transitions (advance
warning of fire drills, tornado drills, etc.)
 Extended School Year Services
 Assistance of staff from the Center of Autism and Related Disabilities
 Assign Peer Pal/Buddy
Video Segment 2
 Keep Records

 Have a binder for medical records

 Start a journal when beginning new
treatments to document behaviors/reactions
 Separate binder for school correspondence
 Print out the emails with the school/teachers
 Treatment Choices
 Internet is great resource! (7 years ago not much out there, be careful
sometimes too much info can be stressful and a lot of wrong or bad info in chat
rooms).
 All of our kids are unique and respond differently to diet,
supplements, and treatments, plus it takes time to sort out
effect.
 Always ask (and listen) to at least 3 people if you are not sure
about a treatment or just need advice
 Ask your DAN doctor before changing a protocol.
 Inform the school when implementing a new treatment
 Never experiment on your own.
 Be patient, have faith and stay strong.
 Resources

Must Read Books

 Evidence of Harm; David Kirby

 What Your Doctor May Not Tell You About Children’s Vaccinations;
Stephanie Cave, M.D.,F.A.A.F.P., Deborah Mitchell
 Autism: Effective Biomedical Treatments, by Jon B. Pangborn, Ph.D.and Sidney
M. Baker, M.D
 Thinking About You, Think About Me; Michelle Winner
 How to be a Para Pro; Diane Twathtman-Cullen
 Non-Verbal Learning Disabilities at School; Pamela B. Tanguay
 Freaks, Geeks and Asperger Syndrome; Luke Jackson
 Healing the New Childhood Epidemics; Kenneth Bock, M.D., and Cameron Stauth
 Facing Autism; Lynn Hamilton
 Out of Sync Child; Carol Kranowitz
 Consider buying books and lending to those working with your child “I read a great
book …”
 Resources

Websites
 www.icdrc.org
 www.talkaboutcuringautism.org
 www.safeminds.com
 www.generationrescue.org
 www.autism.com
 www.nationalautismassociation.org
 www.sarnet.org
 www.autism-society.org
 www.unlockingautism.org
 www.socialthinking.com
 Resources

Programs

 Readwritegold www.readwritegold.com
 BrainTrain www.braintrain.com
 Earobics 1& 2 www.earobics.com
 Kidspiration www.kidspiration.com
 Teach 2 talk www.teach2talk.com
 Kidacess www.kidacess.com
 Webkinz www.webkinz.com
 Autism Coach www.autismcoach.com
Adriana Video