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

Creating Parent – Physician Partnerships for Successful Recovery

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

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

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)

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

Toxic thresholdfor child

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 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.

IVIG

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

In my 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 NeuropsychologistBENCHMARK!

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