A Journey So Far A Parent s Perspective

A Journey So Far…. . A Parent’s Perspective A detailed parent’s journey of Autism, biomedical & traditional therapies By Lisa Ackerman – Jeff’s mom Autism One 2006

Agenda • • • Why I am here Jeff’s History – year by year Interventions used & details Lessons Learned How to get started Where to go for help Best resources More Video of Jeff Close

Why I am here • It’s simple really

Disclaimer • • Just a mom – not a doctor – this presentation should not be used as medical advice Always use a doctor before pursuing any intervention Always remember, what works for one child does not work for every child with autism spectrum disorders We have little support, little knowledge, little data on what works – we are the leaders forging the path to tomorrows answers

Jeff History • • • At 1. 5 years – before autism At 2 years – after autism Treatment Review: 1 year in Treatment Review: 2 years in Treatment Review: 3 years in Treatment Review: 4 years in Treatment Review: 5 years in Treatment Review: 6 years in Where we are going

BEFORE: At 1. 5 years • • • Typical child Healthy, typical gestation & birth All milestones met and starting to talk No concerns / no issues Then…

AFTER: At 2 years • • Lost all words Started to regress in all skills. Assessments at 2. 5 yrs showed he was at 3 -6 month level Frequent diarrhea Selective eating – from a typical 2 year old’s palate to selecting down to six foods Irregular dilating eye pupils Sleep cycles changed (i. e. , no sleep) Rash city all over the body Into his world and away from ours

At 2 years continued: ü Note: We introduced milk at 2 ü All evaluation reports demonstrated Jeff was operating at 3 -6 months skill sets – no speech ü Pediatrician misstep & delays in diagnosis ü First three doctors provided no hope, no answers, a possible look at Jeff’s future (seen 14 doctors total since). ü Diagnosed: September 30, 1999 with autism, and January 15, 2000 with apraxia (both severe) – follow up diagnosis December 2003 – Auditory processing disorder

At 2 years continued – ATEC & Medical • • • ATEC Score (http: //autism. com/atec/) 106 Medical tests done – none (doctors did not think about medical) All testing done was: behaviorbased, psychological, OT, and speech.

At 3 Years • Interventions started (after 2 -4 months on waiting lists) ü Behavioral: ü ABA – in home 15 hours a week (worked up to 25) ü Speech – in center then in home – 5 hours a week ü Biomedical: ü Supplements: started with the basics: C, A, EFA’s, B’s, Calcium, & Zinc ü Medical tests and more medical tests ü Hypothesis created, questions identified ü Search for a doctor who would listen ü Started Gluten free / Casein free (GFCF) diet and allergy elimination

At 3 years continued – ATEC & Medical • • ATEC Score (http: //autism. com/atec/) 75 Medical tests done: üIg. G, Ig. A, Ig. E Profile üComplete Blood profile (RBC, WBC), Urinary Peptides, Organic Acid, Amino Acid Panel, Yeast Culture, Hair Toxic elements, comprehensive stool analysis, and Coagulation study

At 4 years • Interventions started ü Behavioral: ü ABA – in home 30 hours a week ü Speech - 5 hours a week ü OT - 1 hour a week ü Started afternoons 2 x’s a week preschool w/ an aide ü Biomedical ü Supplements: continued with basics – add transdermal products like glutathione ü Medical tests and more medical tests Hypothesis continually tested – more questions being answered – key doctor identified ü Identified key allergens: soy, corn, eggs, dyes, yeast

At 4 years continued – ATEC & Medical • • ATEC Score (http: //autism. com/atec/) 55 Did augmentative communication (AC) evaluation and obtained a Dynamyte (www. dynavoxsys. com) ü Important note: Jeff started talking at 4. 5 years (8 months after using the AC device) • Medical tests done ü Comprehensive stool test, essential fatty acids, RBC and toxic metals

At 5 Years • Behavioral: ü ABA in home 40 hours a week (when not in school) ü Speech in home 5 hours ü OT 2 hours a week ü Started Speech delay Kindergarten w/ aide 25 hours a week • Biomedical: ü Supplements: switched to mostly liquid supplements (absorption) ü Medical: tried transdermal – went to IV Glutathione, transdermal chelator TTFD, Diflucan & Ketakonazole to treat yeast, and Tomatis first round in December 2002

At 5 years continued – ATEC & Medical • • ATEC Score (http: //autism. com/atec/) 35 Medical tests done: üCysteine plasma & sulfur (both low), comprehensive metabolic, RBC/WBC, CBC & Auto differential, Zinc serum • Note: huge gross motor skill jump with scooter, bars, bike & T-ball

At 5 -6 years • Behavioral: ü ABA in home 15 hours a week ü Repeated typical Kindergarten w/ Aide ü Speech 4 hours/OT 2 hours a week • Biomedical: ü Supplements: did supp vacations & profile to make sure formulation worked ü Medical: continue IV glutathione every 6 weeks, more Ketakonazole (3 treatments), EDTA oral chelator, two more follow-up rounds of Tomatis, and tried IV Secretin (Secreflow)

At 5 -6 years – ATEC & Medical • • ATEC Score (http: //autism. com/atec/) 25 Medical tests done: üEssential Fatty Acids & Metabolic RBC/WBC, Vitamin Profile, CBC & Auto differential, Comprehensive Metabolic, RBC & Toxic metals – most important finding: metabolic results are normalizing • Note: school a great experience!

At 6 -7 years • Behavioral: ü ABA in home 15 hours a week ü In typical First grade w/ Aide ü Speech 4 hours/OT 2 hours a week • Biomedical: ü Supplements: did supp vacations & profile to make sure formulation worked ü Medical: continue IV glutathione every 6 weeks, more Ketakonazole (3 treatments), more chelation TD-DMPS, and added MB-12 shots

At 6 -7 years • • ATEC Score (http: //autism. com/atec/) 10 (still – more work to be done!) Medical tests done: ü Vitamin Profile, Comprehensive Metabolic, RBC/WBC, Vitamin & Toxic metals – most important finding: metabolic results are normalizing – also Geonomics testing • Added intervention: Auditory trainer at school ü More info on auditory trainers http: //www. telex. com/education/products. nsf/pages/Product Type=Auditory+Trainer+Systems ü Device used was an FM Auditory trainer by Phonak. It is the Micro Ear Auditory trainer & X 2 T transmitter from www. phonak. com • • Fast Forword for reading, language & processing helped a great deal www. fastforword. com Also did Interactive Metranome – www. interactivemetranome. com

At 7 -8 Years • Behavioral: üABA in home 15 hours a week üNow in typical 2 nd grade w/ Aide üSpeech 3 hours/OT 1 hours a week • Biomedical: üSupplements: nebulized & oral glutathione, up’d MB-12 prescription, added HBOT

At 7 -8 years • • ATEC Score (http: //autism. com/atec/) 10 (still – more work to be done!) Medical tests done: üVitamin Profile, Comprehensive Metabolic, RBC/WBC, Vitamin & Toxic metals – new allergy panel – new viral panel

Next steps • Biomedical: Look for answers in existing diseases & medical conditions that help: ü Stroke ü Inflammation • Traditional therapies: Continue what we are doing in: ü Aide in school – in phase 4 (of 5) ü Speech – as much as possible in everything we do ü 13 -15 hours of home / mostly theory of mind, advanced / abstract concepts & curriculum pre loading ü Social skills focus

Treatment Review - DETAILS • Behavioral • Biomedical • Social • Family • Research

Interventions – Behavioral • ANYTHING ONE-ON-ONE!! ü ABA, VBA, RDI, PRT (alphabet soup) ü Important life skills and age appropriate skills must be evaluated during therapy life! ü Behaviorally based ü Drills move forward / no rut zone ü What works for one does not work for all • Others to consider: Floortime, TEACCH, Sonrise, social skills, play therapies, RDI – it’s all about a good team (a supervisor and therapists!)

Interventions - Biomedical • • Supplementation with an eye to test results (with minimal annual testing) Secretin (IV and transdermal) Chelation: DMSA, TTFD, EDTA, DMPS (have done oral, topical variations only) Sulphation: IV & Transdermal Glutathione Tomatis (four rounds) Yeast treatments: Diflucan, Ketakonazole (Year 2 -3 provided between 3 -6 a year now on maintenance w/ probiotics & Lauricidin) HBOT – 40 “dives” 1. 3 to 1. 5 ATA’s with 100% oxygen – in patient

Interventions – Dietary Do not discount this treatment!! ü GF CF Diet ü Clean/organic diet ü Eliminate all dyes, additives, preservatives ü Good rule: remove anything with more than three syllables & especially unpronounceable words! ü Phenol removal (Feingold diet) ü Common GFCF diet allergy removal: Soy, corn, eggs, yeast & dyes - especially “natural flavors” ü Rotation diet: to prevent future allergies • Remember the following: ü Food is not love ü Be ready to lose a food for three weeks ANYTIME

Interventions – Picture Exchange Communication System – (PECS) • • www. pecs. com To create communication To help organize schedules and eliminate frustration Consider augmentative communication device evaluation www. dynavoxsys. com

Interventions - Social Skills • • • ASD kids need to learn social skills differently than typical kidlets Frequent play dates with the ultimate friend Facilitated with an Experienced aide! Build on the activities they love Make it fun!

Family • Your family: ü A diagnosis affects each family member ü Discuss the issues as a team to problem solve and share in the healing process ü Share with other families like yours (outings & gatherings) • YOU: ü Grieve then move forward – times a wasting! ü Remember - there are other people in your life ü Spouse, children, siblings, parents, friends ü Stay healthy / stay positive / do little things for yourself ü If you are healthy, you can help – if you are unhealthy, you NEED help!

Research • Always be reading – alternating: ü Education ü Brain & autism research ü Biomedical treatments • Organize the materials relevant to your child’s area of need ü Involve the experts working with you son – get recommendations & share information • Learn from other families what works for them ü Share the load – assign tasks & meet to disseminate information

Lessons Learned – part I • • • Hire an attorney or advocate early in the process (who knows your district/early start program and has a track record) Start the in home program / or one-on-one intervention immediately – you can always change direction ü Step one: Get on all waiting lists ü Step two: Call references provided ü Step three: talk to as many parents as possible Find a doctor that is a long-term partner ü Get on waiting lists • Do the GF CF Diet! Trial 6 -12 months ü Compounding pharmacy for meds, organic / clean diet • Independent outside evaluations on: ü Behavior, child psychologist / neuropsych, speech, OT/PT, and other specialists ü Do testing annually

Lessons learned – part II • Pace yourself for your child’s sake – these are fragile children ü Go slow, follow doctors orders ü Document each step! ü Have a plan when and why to try each intervention AND WHEN TO STOP!! • • Surround yourself with forward-thinking, positive people ASK questions – understand the premise – beginning, middle and end - of every treatment plan Become a quasi expert on: medical, diet, behaviors, speech, OT, research, documentation, or find someone in each group If a provider does not exist in your area – GET CREATIVE! ü Go to conferences & meet them there ü Travel where they are and stay with family/friends (make a vacation) ü Grow them! • Set goals: Visualize and plan the future

Where to go for help • • • California people – go to TACA meetings, and there are more details on each slide topic at: www. tacanow. com ARI – www. autism. com/ari Yahoo Groups – online support (be wary of online advice – always check with a doctor!) • Find a doctor – resources used: ü www. autism. com/ari CLICK ON DAN!

Best web resources • • There are over 19, 000 web sites – (key word Autism on www. google. com) I have cataloged over 500 by category Here are my favorites: (of course www. tacanow. org !) ü Dietary: www. gfcfdiet. com ü Supplements: www. kirkmanlabs. com ü Finding a doctor: DAN! www. autism. com/ari ü Generic news on autism: http: //autism. about. com/health/autism ü Mercury & Autism: www. generationrescue. org ü Special Education law: http: //www. wrightslaw. com (lots here!) ü Speech issues: www. apraxia-kids. com Best email newsletter: Shafer Autism report – to subscribe: subscribe@doitnow. com Use YAHOO GROUPS for specific topics (Like Autism Southern California for general questions, HBOTfor. Autism for HBOT, GFCFKids for the diet, etc. ) http: //groups. yahoo. com/

How to get started • • • Autism is a marathon, not a sprint! Although there is urgency in the desire to save a child – know that any accomplishments take time Never give up hope

Getting started – part II • Be, stay, live organized or die by paperwork üBinders are your friends üTwo “to do” lists üShort – 2 -3 items accomplishable in 1 -2 weeks üLong – the list you pull from when the short list is done üWhat is important? What is not?

Where we are going • • Achieve Jeff’s true potential – final destination unknown He is not a diagnosis – he is a child with a promising future AND We will never give up Always looking for new resources to add to the puzzle picture Goal: recovery – if not, Back pocket goal: independence

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Close • Questions & Answers