Creating Parent – Physician Partnerships for Successful Recovery

1. 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

2. 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.

3. 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.

4. Oxidative Stress • Urine • 8-OHG • Isoprostane • Blood; • Transferrin, Ceruloplasmin, • Ammonia and Lactate • Reduced Glutathione or GSSG - if available.

5. Methylation and Transsulfation • Urine • Methylmalonic acid – B12 indicator • Plasma • Fasting Cysteine • Methionine • Taurine • Sulfate • B12 and Folate levels

6. 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

7. 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.

8. 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.

9. 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

10. 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

11. Video SEGMENT 1

12. (Journal of Pediatrics 2000;136;679-81) Toxic threshold for child 1 nmolar Thimerosal inactivates methionine synthase, (Waly et al Molec Psych 2004)

13. 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.

14. 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

15. 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

16. Neuroscience Letters 241 (1998) 17–20

17. “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

18. Neopterin prior to Spironolactone, but on monthly IVIG

19. Neopterin after Spironolactone and Prolonged use of IVIG

20. 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

26. 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

29. Parental Strategies Top 10 Jacquie Mancini

30. 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.

31. 2 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

32. 3 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

33. 4 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

34. 5 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

35. 6 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

37. 7 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)

38. 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

40. Video Segment 2

41. 8 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

42. 9 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.

43. ResourcesMust Read Books 10 • 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 …”

44. ResourcesWebsites • 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

45. ResourcesPrograms • 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

46. Adriana Video