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Defeat Autism Now! ~ Fall 2008 Optimal Health Initiatives, LLC Nancy O’Hara, MD and Gail Szakacs, MD 150 Danbury Road , Wilton, CT 06897 Phone: 203.834.2813 Fax: 203.834.2831 HBOT NEWS It is our pleasure to introduce Shannon Claussen as the new Hyperbaric Technician at Optimal Health Initiatives. She is looking forward to assisting you with all your hyperbaric needs. Hyperbaric Oxygen Therapy is one of the biomedical interventions used to treat various conditions present in a child with ASD. “Hands down HBOT was the single most effective treatment for our child, specifically in the areas of language and relatedness.” - Lisa, mother of Charlie What is Hyperbaric Oxygen Therapy? Hyperbaric Oxygen Therapy (HBOT) involves inhaling oxygen (up to 100% oxygen) at greater than 1 atmosphere (atm) in a pressurized chamber. The pressure “forces” oxygen into the blood and increases oxygenation to the entire body. Research has shown improvements with HBOT in children on the Autism Spectrum who have gut and brain inflammation, cognitive impairments, anaerobic bacteria overgrowth, and detoxification issues. “Numerous studies document oxidative stress and inflammation in individuals with autism; both of these conditions have demonstrated improvement with HBOT, along with enhancement of neurological function and cognitive performance.” Please see link below for the full article. http://www.biomedcentral.com/1471-2431/7/36 Additional Links: www.hbotreatment.com Please visit the HBOT section of our website at www.drohara.com where you will find graphs, charts, testimonials, and study results, including; The Results of 30,000 Hrs. of Hard and Soft Chamber HBOT-The 20 Most Common Parental Observations. Please be patient with us, as this is a new section of our website and will take some time to be completed. We apologize in advance for any inconvenience. Contact Shannon at 203-834-2813 x 18 with any questions or to request a HBOT packet. * PATIENT UPDATE FORMS* *REQUIRED BEFORE ALL CONSULTATIONS* It is a requirement before all office and phone consultations. We request that you email the form one week prior to your consult date. You can even simplify the process by saving it on your computer and making any adjustments as needed before each appointment. The process will make your consult much more productive and ultimately save you time and money. Thank you for your cooperation! Information from the fall Defeat Autism Now! Conference in San Diego MIND THE GUT Several speakers at the recent Defeat Autism Now! Conference in San Diego spoke about the guts of our kids – gut bugs, biofilms, clostridia, PANDAS and strep. We recommend continuing to treat the gut inflammation, dysbiosis and malabsorption that our kids experience. Here are some of the GUT PEARLS (as discussed by Dr. Robyn Cosford, Dr. Anju Usman, Dr. Derrick McFabe, Dr. Andy Wakefield and Dr. Sue Swedo): How can dysbiosis (too many bad germs and not enough good germs) hurt my child? (Controlled study of kids with ASD vs. controls (Robyn Cosford)) • • • • • Our kids with ASD have more strep and enterobacter and less beneficial E coli As Ecoli levels drop and enterobacter and strep increase, we see more fat and protein malabsorption, acidic pH, increase production of ammonia and deconjugation of bile acids; we also see associated cognitive dysfunction Similar patterns seen in those with Celiac Disease and Chronic Fatigue Syndrome At risk kids have recurrent infections, reflux, nocturia, family history of strep infections; when treating these gut bugs, beware of herxheimer (die-off type) reaction Management includes organic diet, phytonutrients, mucolytic enzymes, probiotics, xylitol, antimicrobials (herbals include artemesia, OOO, OLE, garlic) How can gut bugs control behavior? (research by Dr. Derrick McFabe) • • • • • • Bugs produce SCFA, like Proprionic acid (also a common preservative in wheat and dairy products and byproduct of bacterial/clostridial metabolism) Bugs produce abnormal gut inflammation and permeability Proprionic acid is increased with B12 problems and biotin deficiencies Proprionic acidemia causes carnitine depletion, mitochondrial problems, accumulation of SCFA, impaired methylation and sensitivity to metabolic stress Injecting Proprionic acid into rat brains causes reversible repetitive behavior and induces hyperactivity, ritual turning, object fixation and sterotypies Treating Clostridia with Flagyl in children with regressive ASD can cause temporary remission when we get rid of these bugs Why Do Our Kids Have Colitis (Gut Inflammation)? (Autistic Enterocolitis presented by Dr. Andy Wakefield) • • • • • • • Timing of exposure determines risk (delay DTaP by 2 months, decreased rate of asthma by 50 %) Children with ASD have lymphopenia (low white blood cell count (CD4 depletion)); this leads to the body trying to increase lymphoid tissue which then leads to lymphoid hyperplasia (swollen glands) in gut and then translocation of gut bacteria out of gut into systemic blood IL10 and TGFbeta are the aspirin of immune system; they regulate and stop other parts of immune system; IL10 and TGFbeta are very low in ASD (Ashwood) leading to autoimmunity and allergic disease So T cell expansion (lymphoid hyperplasia) not regulated by T cell regulation (IL10 and TGFbeta) and kids develop colitis Thimerosal induces apoptosis of T cells/lymphopenia (Glutathione (which is low in kids with ASD) is protective) Children who received high titer measles vaccine at 6 months of age (in Haiti, Peru, Senegal) developed long term lymphopenia; lymphopenia may follow measles infection or vaccination Earlier exposure to MMR vaccination associated with increased risk of ASD (50% increased risk); DeStefano Pediatrics 2004, 113, 259-266 Information from the fall Defeat Autism Now! Conference in San Diego What is Biofilm? (presented by Robyn Cosford and Anju Usman) • • • • • Collection of microbial communities enclosed in matrix of negatively charged polysaccharide substance held together with calcium, magnesium and iron Matrix protects against phagocytosis, antibiotics, immune modulation and antimicrobials Also outer membrane proteins of matrix not expressed on outer layer (but rather internalized into biofilm) and therefore not recognized by immune system Consider biofilm if recurrent or persistent dysbiosis, recurrent otitis, sinusitis, dental caries, initially do well with antifungals and then no response, stool and urine cultures negative but does well on antifungals or antibiotics Treatment includes probiotics and prebiotic (symbiotic = combination of probiotics and prebiotic), EDTA (enhances affect of antifungal or antibiotic), iron chelating compounds, mucous degrading enzymes o Lactoferrin retains motility in bacteria and does not allow it to form biofilm aggregates (especially pseudomonas – serratiopeptidase also helps) o Fibrinolytic enzymes help to break down staph o Chitosan (derived from shellfish) – has NAG and thins biofilm, especially strep Biofilm Treatment protocol (very long process – may be years; average 4-6 months; improvements seen in weight gain, behavior (including PANDAS, OCD and tics), and stools) Step 1 – Lysis/detachment of biofilm (on empty stomach) o Enzymes (mucostop, lumbrokinase, nattokinase, serratiopeptidase, SPS30, papaya or pineapple) o Oral DisodiumEDTA or Apple Cider Vinegar o Lactoferrin (do not do if very sensitive to dairy) o NAG (N-Acetyl Glucosamine)/Chitosan Step 2 – microbial killing (antifungals/antibiotics – give 15 minutes later and can give with other meds; often start with herbals) o Agent varies with microbiologic growth (bacteria, fungus) o Die off often occurs at Day 21 (includes irritability, aggression, hyperactivity, sleeplessness, skin rash and fever) Step 3 – clean up (like a toothbrush – a few hours after step one but can be at night) o Charcoal, fiber, modified citrus pectin, alginates, brown algae Step 4 – rebuilding and nourishing gut lining o Probiotics, prebiotics, fermented foods o Diet – SCD or at least high antioxidant (high ORAC value- Acai, noni, goji), low sugar and low AGE (advanced glycation end-products such as brown, fried or heated at high temps like French fries, cake, dark sodas, donuts) o Supporting nutrients include xylitol, aloe, EFAs, slippery elm, marshmallow, ginger, colostrum What is PANDAS? (Pediatric Autoimmune Neurologic Disorder Associated with Strep; as researched and presented by Dr. Sue Swedo) o Symptoms of PANDAS can include choreiform movements, emotional lability, personality change, fidgetiness, separation anxiety, irritability, impulsivity, enuresis, depression, cognitive and handwriting changes, compulsive rituals, aggression or self-injurious behavior o Symptoms much improved on PCN or Zithromax prophylaxis o Treatment with plasmaphoresis (decreases titers, antineural antibodies) or IVIG (internal plasmaphoresis – recognize child’s antibodies as foreign and pulls them out); treatment (1 gram over 2 days) will work in first course (decreased OCD symptoms by 45% in one month (no change in placebo group)); if not, then will not work o Criteria for PANDAS Presence of OCD and/or tic disorder Prepubertal onset Episodic course of symptom severity (relapsing and remitting) Association with neurologic abnormalities Temporal relationship between symptom exacerbations and strep infection Information from the fall Defeat Autism Now! Conference in San Diego Information for SLOW or NON-RESPONDERS (Dr. Bradstreet and Dr. Rossignol) • • Consider and evaluate potential missing links: o subclinical seizures o persistent oxidative stress o low serotonin and/or clostridia issues for stimming and/or OCD o consider other sources for chronic strep (chronic sinusitis, which may be the reason tonsillectomy does not always cure chronic strep/PANDAS) o germs may be trapped in biofilm o vitamin D deficiency o Disruptive sleep with little or no REM can affect ability to retain information o Paradoxical reactions to medications may have to do with neurotransmitter dysregulation Treatments to consider: o Galantamine (inflammation, aggression, behavioral dyscontrol, and inattention) o Transdermal Nicotine (attention). o Galantamine and Nicotine have synergistic effect on blocking microglial activation (which leads to neuroinflammation). o Intranasal Oxytocin (anxiety, self-stimulatory behaviors). o Intranasal Secretin (help with stress regulatory peptides, behavior, gut) o Minocycline (inflammation) o Spironolactone (anti-androgen and anti-inflammatory effects; one study showed it as a protective antidote against acute organic mercury poisoning in rats) o 5-HTP (self-stimulatory behaviors, OCD, sleep, mood regulation) o Curcumin (inflammation) o Phosphatidylcholine (inflammation, detoxification) o Melatonin (antioxidant, sleep) o TSO (immune regulation) o Low Dose Naltrexone = LDN (self-abusive behaviors, inflammation/immune dysregualtion) o Revisit Diet o Namenda = Memantine (language, social behavior, and self-stimulatory behaviors) o Vitamin D3 (see separate vitamin D section) o Antioxidants (decrease oxidative stress/free radical damage and promote detoxification) o Steroids in combination with certain antimicrobial therapy for CNS infections (Fitch) o HBOT (inflammation, detoxification, some gut germs, cognition, communication) o Neurofeedback (processing, anxiety, OCD and stimming type behaviors) Seizures • • Study by Sue Swedo found that up to 60% of otherwise non-responding children with ASD had abnormal overnight EEG o Recommended work-up may include prolonged EEG o SPECT Scan or functional MRI o Consider Brain Mapping Found sleep problems with decreased sleep efficiency, prolonged latency to REM and decreased total time of REM o Consider Aricept (Donepezil) to treat sleep abnormalities (often 2.5 mg; but may range from 1.25-5 mg); may also help with speech, word retrieval o Consider trial of minocycline (inhibit NF Kappa B; to treat inflammation in CSF); concern about teeth staining o Consider other anti-inflammatory agents to promote stem cell proliferation (HBOT, curcumin), antiglutamates (Namenda, Rilutec), and mitochondrial catalysts (L carnitine, acetyl L carnitine, uridine, tyrosine, EFAs, phosphatidylserine) Information from the fall Defeat Autism Now! Conference in San Diego INFLAMMATION and IMMUNE DYSREGULATION (Judy Van de Water, PhD) • Depletion of adaptive immunity affects learning behavior in mice (Anna Brynskikh) Study by Luke, Van de Water, et al – shows association between immune dysfunction and behavioral issues in Autism Ongoing study – have found specific antibodies to fetal brain proteins in the blood of a subset of mothers with autistic children (seen more frequently in regressive autism) Study in Journal of Neuroimmunology (Ashwood, Van de Water, et al) showed low TGF-beta levels (involved in repair and neurodevelopment) correlated with increased severity of behavioral changes • • • (Andrew Wakefield, MD) • • • • • • • If DTaP vaccine delayed 2 months, the risk of Asthma decreases by half White blood cells (WBCs) are low in the blood, but high in the periphery. Most of the peripheral immune system is in the gut. Serologic markers of IBD: CBir1 (target antigen Clostridiaal flagellin protein), Perinuclear ANCA (target antigen colonic bacteria), ASCA IgG and IgA (target antigen S. cerevisae) Early infectious exposures may lead to immune-mediated inflammatory response following an acquired loss of immunological tolerance to luminal antigens Patterns include abnormal immune response against own gut microbes and an age-related rise in immune response for certain microbes Autistic enterocolitis is more like Chron’s There may be a change in intestinal disease and serologic status over time. Emphasis on other aspects of IMPAIRED DETOXIFICATION (Dr. Rossignol and Dr. Bradstreet) • • Further evaluation beyond porphyrins and chelation challenges: o Urine 8-OH-G RNA o Plasma cysteine and sulphate o Other mitochondrial markers (total/free carnitine, plasma ammonia, plasma lactate, total CK) o Water analyses and other testing if ongoing toxic exposure Treatment options beyond chelation: o Prevention, prevention, prevention Diet – organic, fresh, special Avoid plastic containers Avoid acetominophin Be aware of toy recalls Evaluate all household cleaning products and cookware Review all aspects of environment o Adequate antioxidant intake – including fat-soluble ones that may be more effective o Increase glutathione levels with supplements such as glutathione, N-Acetyl Cysteine (NAC), Vitamin C, Vitamin E, Milk Thistle, TMG, Methylcobalamin, Folinic Acid, and Alpha Lipoic Acid (ALA) o Ensure adequate mineral support o Far Infrared Sauna o HBOT Information from the fall Defeat Autism Now! Conference in San Diego Information about possible role of Vitamin D in Autism (Dr. Cannell) • • • • • • • • • Increased Autism prevalence coincides with medical advice to avoid sun over past 20 years Some animal studies show vitamin D deficiency during gestation dysregulates proteins associated with brain development Calcitrol (activated vitamin D) down-regulates inflammatory cytokine production in the brain It has been reported that estrogen has a positive effect on calcitrol levels and thus may protect developing female brains Calcitrol raises seizure threshold (and thus may be protective) Ongoing research about medications that may interfere with Vitamin D Other studies that question any link between Vitamin D deficiency and Autism Diagnosis depends on Vitamin D 25-OH levels; deficiency generally defined as < 40 ng/ml, but may vary slightly according to reference ranges of different labs. Treatment: o Vitamin D3 (also known as colecalciferol). Goal level for treatment is at least 40 ng/ml year round. Since Vitamin D is a fat soluble vitamin, levels must be monitored routinely when being supplemented with Vitamin D. Amount of D3 needed varies with body weight. o Sunlight Total of 15 minutes of sunlight provides approximately 10,000 IU. Usually only one or two exposures per week are needed to maintain adequate levels. Risks for sun exposure still exist and need to be factored in NEWS FROM LORI CODA Lori Coda offers: • Neurofeedback (brain exercise in self-regulation that can address ADHD, learning disabilities, language delays, processing issues, anxiety, depression, and migraines) o We are exploring the use of brain mapping (QEEG) in our office and how it can help direct Neurofeedback Therapy in your individual child. o More info on brain mapping will be available in early 2009. • Behavioral consults • Educational consults (how to navigate your educational system) • Listening therapy programs There are a limited number of spaces available for Neurofeedback. Please contact Lori to discuss availability. Lori Coda has been in the field of Special Education for 22 years. She has an undergraduate degree in Psychology, a master’s degree in Special Education, and post-masters training/ certification in TEACCH, Social Skills, Therapeutic Listening and Neurofeedback. Please contact Lori at 203-834-2813 x 15 or by email at [email protected] to find out more information on these therapies and services. Upcoming Events Dr. O’Hara will be speaking at the following conferences: April 15-19, 2009Atlanta, GA May 15-16, 2009 Boston, MA May 20-24, 2009 Chicago, IL Defeat Autism Now! Conference Autism Conference Autism One Happy Holidays! Nancy, Gail, Vicki, Lauren, Lori, Barb, Betsy, Deidrea, Shannon, Patti and Traci Please visit our website: www.drohara.com WE HAVE A NUMBER OF INFORMATIVE BOOKS AVAILABLE IN THE OFFICE FOR PURCHASE. WE ASK FOR A $15 DONATION TO VIA, VITAL INTERVENTIONS ACCESSIBLE VIA PROVIDES RESOURCES TO FAMILIES WHO CAN NOT OTHERWISE AFFORD BIOMEDICAL INTERVENTIONS VISIT THEIR WEBSITE AT WWW.VIANOW.ORG