Transcript Creating Parent – Physician Partnerships for

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?
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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
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It is 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
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Urine
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8-OHG
Isoprostane
Blood;
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Transferrin, Ceruloplasmin,
Ammonia and Lactate
Reduced Glutathione or GSSG - if available.
Methylation and Transsulfation
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Urine
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Plasma
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Methylmalonic acid – B12 indicator
Fasting Cysteine
Methionine
Taurine
Sulfate
B12 and Folate levels
Immune Factors
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Urinary: Neopterin and Biopterin
Blood:
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Special: intestinal permeability to lactulose and mannitol.
Fecal
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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)
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
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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
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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)
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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
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Blood:
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Packed Erythrocyte Minerals and Toxic Metals
Lymphocyte metallothionein pre/post induction
Urinary:
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Fractionated Porphyrins
If porphyrins elevated or history strongly
suggestive, get post-chelation challenge 6 hour
urine toxic metal assay
Case Presentation
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Female, DOB: 9/24/1998
Fetal Distress During Hospitalization for preeclampsia > 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
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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
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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
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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
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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
IVIG
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11/2003 = 77 Borderline Deficient
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
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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
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Register with CARD or ABA group – Get on
their waiting list.
Speech Therapist
Occupational Therapist
Certified Behavior Analyst/Tech
Social Skills Group
Autism
In my experience people tend to look at Autism
as a behavioral disorder not a biological one
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treating professionals EDUCATE THEM to
Breakdown their Fears
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Upon Diagnosis “At Home”
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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!
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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
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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
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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
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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.)
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Extended School Year Services
Assistance of staff from the Center of Autism and Related Disabilities
Assign Peer Pal/Buddy
Video Segment 2
Keep Records
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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
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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).
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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
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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
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Autism: Effective Biomedical Treatments, by Jon B. Pangborn, Ph.D.and Sidney
M. Baker, M.D
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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
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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
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Readwritegold
BrainTrain
Earobics 1& 2
Kidspiration
Teach 2 talk
Kidacess
Webkinz
Autism Coach
www.readwritegold.com
www.braintrain.com
www.earobics.com
www.kidspiration.com
www.teach2talk.com
www.kidacess.com
www.webkinz.com
www.autismcoach.com
Adriana Video