This is a marathon, not to win, but to catch up to where my son should have been. As I look through the picture albums of his days prior to his regression, I think of how would be today. This whole marathon is to get to that point.

As our focus is on steadily getting him back to health, I wrote about Cocktail Treatments in this article: http://www.ageofautism.com/2008/01/cocktail-treatm.html

Where I left off was at my account of IVIG treatments. The benefits of IVIG seemed to saturate, at some point. The treatments still continue but we looked at other areas. We performed a detailed look at his GastroIntestinal System through a pill cam. The pill cam is an amazing device that is swallowed and it transmits pictures of the entire GI pathway. The results didnt look good. The small intestine qualified for the diagnosis of inflammatory bowel disease.

We started a trial of Pentasa and Singulair. The Pentasa seems to aggravate symptoms of salicylates. However at a lower dose, the drugs do seem to help, he is making some progress.

Another trial right now is Namenda, the alzhiemer's drug. It seems to be helping with memory, recall etc. He seems to recall events from his classes, what he ate for lunch etc. better.

His current list of supplements in the morning is: an AM compound of vitamins and minerals from Pfeiffer Treatment center, 5HTP, Candex on an empty stomach, his antifungal rotation (one of Oregon Grape Root Extract, Kyolic, Biocidin, ...), homeopathic Aconitum Napellus, Calm Child drops and Seriphos.

Midday he takes the cultured juice/kefir rotation, and E3Live.

At the evening, he takes the PM compound from Pfeiffer, Phosphotidylserine, Black Currant oil, fish oil, cod liver oil, DMAE, Vit D3, Vit K2, Liver Life, CoQ10, Taurine and Coromega.

At bedtime he gets an Epsom Salt Bath. His diet is a combination of Raw Food diet and Body Ecology Diet. He does not seem to tolerate any infraction.

How is he doing now?

Now I am able to take him to classes in the community. Art, ceramics, gym. He is able to work alongside typical peers. He is quiet, does not disrupt, and he does his work. Which is great, because it widens his opportunities. He also feels very competent when he does good work. He does not interact with the kids, and does not follow detailed instructions from the teacher, and I have to be with him to keep him on task. But with minimal support he functions quite well.

I dont know where we are on this marathon, but I have a feeling that the next lap is going to take us outside the country! 

Nothing blog-worthy ever happens to me! Which is why I mostly write about treatments, hoping that someone will find it useful. I am a mom who succumbed to "autism induced unemployment" this year, my life is filled with researching, being my son's secretary scheduling his appointments, his full time cook making diet meals etc.

Until last week when my husband said that he "suddenly realized" that he had to go to LA for a meeting just the day before our plan to drive down for his IVIG infusion. So my son and myself had to fly alone. "Just a short flight: an hour and a half, no biggie!"

The day arrived and I had called the shuttle to the airport. I was ready, my son was ready, there was a final batch of Body Ecology Diet (you know the one with cultured foods, and smelly stuff?) muffins baking in the oven and everything looked great. Through my peripheral vision, I caught my son running from the backyard to the bedroom, "Bathroom!". Behind him was a watery stream of autism poop. (OK, I didnt warn you, this is a poop story. If you are just about to start eating, you should come back to this later.)

There are two laws of autism poop. It happens, and only happens, at the most inconvenient moment. And second, diarrhoea and constipation come back to back like an equal and opposite reaction.

Anyway, the phone rang and the shuttle was here. "Maam, I am ready an hour early, so we can start as soon as you are ready". Wait! I have to clean poop. So I went and helped him clean up and wiped the floor in a quick swoop. "OK, now, this is the only pair of pants left that doesnt require a belt. And you know how the belt beeps in security check and so I prefer you wear a pant that doesnt need a belt. So, no more poop until we get there!". I am not sure he understood that logic.

I came back to quickly eat something left over from my son. Pudding of yellow squash, celery, coconut oil, stevia... this should taste good!

Oh, got to pack the cultured veggies. Does cultured veggies count as liquid or gel? How much water can it have before it is considered gel? Anyway I decided it would go in the suitcase. If the glass jar broke, my clothes would all smell of S. Boulardii or L. Rhamnosus GG. That is fine. But I cannot risk losing a jar, should security decide that its gel, or explosive, and toss it.

Supplements! I opened up a dozen capsules and dropped into a spoon of fish oil. Last, I squish the hard Krill Oil. It splashed right on my shirt and my fingers, all ten, were stained blood red and smelled of Krill, a fish. To top it off, I wiped my fingers on my shirt, hoping to remember to change my shirt before I left to the airport.

Suddenly I saw my son running again. I stopped him and turned him around. He had managed to sit squat on a poop puddle somewhere in the backyard and his back was stained of poop! "I told you that I dont have another pair of pants left. When I said 'no more poop' I meant no more poop stains!". I am sure he didnt understand that either.

I decided to fix this. I removed the pant, hand washed it with detergent and heated up my steam iron and ironed it dry!

"OK, this is it! We are heading out!"

By now the muffins were browning, almost black. I packed them, picked up the luggage and took the shuttle to the airport.

At the airport, my bag certainly deserves a detailed security check. "Maam! I need to open your bag!"....

"What is this?"

"Muffins!". He gave me that look, so I had to explain, "Its made of quinoa flour, and has carrot, radish, zucchini and some sea vegetables!". In short, it is not sharp, not an explosive, not liquid or gel. Just then, my son let out his famous loud yeasty giggle! I think, this time, he understood!

The security guard dropped the muffins back in without argument. I was all set. I smelt like I had been with fish all day, and my shirt was stained like blood. But my son walked to the gate pretty handsome, with steam ironed long crease on his pants.

Dr Jon Pangborn
Some historical perspectives on the molecular bases of autism

Dr Lejeune reported: deficient 5 tetrafolate etc, deficient homocysteine etc.

Dr Deth pointed that methylation happens in neuronal dopamine receptors.
Attention getting receptors on the neuron.
We are concerned about the phospholipid adjacent to the dopamine D4 receptors in the
plasma membrane of neurons, and SAM is the CH3 donor.
SAM + Me receptor -> SAH + Me product.

Methylation and methionine metabolism problems were recognised two decades ago.
Persistant measels and mumps can cause methylation of phospholipids to not function.

Dr Jeff Bradstreet
Biomarker: measure effects of an intrinsic or externally induced
molecule. Glucose for
diabetes is a classic biomarkers. Can be later measurements related to
clinical outcomes.
Have I corrected the underlying disease?
Effects of HBOT on behavior. Behavior has potential as a biomarker.
Intestinal Permeability test is a good biomarker.
Neuroglial activation and neuroinflammation in the brain of patients:
Vargas paper.
Brain autoantibodies: Univ of Washington paper.
PECAM-1: a key player in neuroinflammation: a good biomarker of
inflammation.
Elevation of TNF alpha in CSF of autistic children.
Inflammation in CSF is higher than meningitis!
Spironolactone is a possibility.
Neopterin is produced by WBC when they are activated. 3 times increase
in autistic population.
Biopterin is an adaption, is 10 times higher.
Real time PCR Quantification of clostridia in feaces of autistic children.
Therapy and epidemiology of autism-clostridium spores... Sidney
Finegold.
Fecal assays in Inflammatory Bowel disease.
Noninvasive markers in IBD: paper: Lactoferrin is a sensitive marker.
Rectal Nitric Oxide and fecal calprotectin in IBD.
Measurements of eosinophil activation before and after food challenges
in adults with  food hypersensitivity. by van Odijk et al.
Assessement of Crohns disease using PET scan.
Inadequate pancreatic enzymes: present with IBD.
Magnestic resonance spectroscopy and environmental toxicity exposure.

Dr Cindy Shneider
Genetic Vulnerability to Environmental Toxins.

Environmental insults: pesticides, drugs, alcohol, plastics etc.
Toxic metals: Hg, Pb, Al, As, Cd.
Viral: Measels, Herpes, etc.
20% of kids have macroencephaly. White matter increase.
Ann Connolly: described antibodies to brain antibodies.
Epidenetics: environmental effects on genes.
35% of identical twins have different genetic expression due to
differences in lifestyle.
Methylation affects epigenetics.
Methionine Synthase: links two pathways: how we use folic acid, methionine cycle.
It also affects dopamine receptor. Change brain waves, increase attention.
Very sensitive to thimerosal. Females have higher methionine synthase activity.
DPP4 is shut down by organophosphate exposure.
ADA alleles (adenosine deaminase): one normal and one weak gene:
somewhat immune deficient. its codominant.
PON1 (PAraoxinase) breaks down organo phosphates. Protects lipids from
oxidation.
Homocysteine can make HCY thiolactone, this change may induce antibody
production. antibodies to folate receptors impair the brain's ability to utilize
folate.
Thyroid, Kidneys have folic acid receptors. Myelin is rich in lysine.
could damage to HCY thiolactone induce auto-antibodies to myelin.
in 20 new born kids the first stool had organophosphates.
PON1 is associated with macroencephaly.
Females have increased CBS activity, testosterone decreases CBS
activity.
Activated by B6.
MTHFR gene: C677T allele: activity is 10-50% of normal. associated with
increased risk of heart disease.
Facilitates the conversion of BH2 to BH4. BH4 is needed to make seratonin.
COMT: breaking down norepinephrine and dopamine. associated with OCD.
Reelin expressed throughout life plays a role in brian plasticity and learning.
Viral infections reduces reelin levels.
Met receptor tyrosine kinase.
Hepatocyte growth factor.: intenstinal integrity. Plays a role in GABA.
A genetic variant that disrupts MET transcription is assoc with autism, by Campbell et al.
Loss of GABA increases excitotoxicity and siezures.

Dr Woods
Do altered porphyrin excretion patterns indicate increased
susceptibility to mercury in autistic children?

Pre and post chelation porphyrin levels showed decreased levels.
Validatation studies that indicate that porphyrins are an indicator.
Occupational exposure of mercury.
Some people are genetically different in their response of porphyrin
effects.
COPX gene showed polymorphism, had porphyrin excretion.
UROD is inhibited when Hg is present, excess precoproporphyrin is
formed.
CPOX4 gene and Hg toxicity have common neurobehavioral characteristics.
CPOX4-> impaired heme synthesis, deficient neuro transmitters. Effects
of same level of
Hg exposure could be more profound.
Large study is being planned.
By age, uropor levels remain constant.
Precopro and copro are highly age dependent.
Kids in the same age group need to be compared. Genotyping is also in
progress.
Distribution CPOX: 23% have heterozygous, 2% homozygous, full mutation.
Porphyrins as indicators of autism? No.
Indicators of mercury exposure? Yes, perhaps residual body burden.
Porphyrins as indicators of susceptibility to Hg toxicity due to
genotype? Yes that is confirmed.

Dr Aristo Vojdani
Dysregulation of activation-induced cytidine deaminase and abnormal
mucosal immune function in autism

Activation induced cytidine deaminase is involved in IgA class
switching.
Mucosal immunology. IgA is mostly concentrated in milk. Plasma cellls
make antibody.
Germ: macrophages, dendritic cells, etc break down. Then natural killer
cells Type 1 cytokines and take care of parasites. Sometimes type 2 creates plasma cells and
then antibodies. Plasma cells migrate to lymph sites, class switching happens due to
enzyme and makes antibodies. Due to lack of enzymes we get IgM and no class switch to
IgA and IgG.

"Critical Roles of Activation Induced Cytidine Deaminase in the
homeostasis of gut flora.
AID deficiency, gut flora may be dysregulated in the absense of IgA
switching and or somatic hypermutation.
Measels virus Nprotein in autistic enterocolitis.
Over-expressive AID, increased B cells.
Introducing monoclonic antibodies, resulted in reduction in
autoimmunity.
H pilori infection triggers AID abherrant activation. Make
pro-inflammatory cytokine.
H pilori induced cancer due to hyperacivity of AID.
"Gut lymphocyte migration: we are halfway home" Mc Ghee et al.
Epithelial cells trigger frontline immunoglobulin class switching
though the pathways.
"Autism and clostridium tetani" by Bolte et al. anearobic bacteria
releasing toxins.
Possibly abnormal immunological synapses.
"Aerobic throat and gut flora in children with regressive autism"
Rosseneu S.
They make multireactive antibodies.
Borellia, will change their antigen structure when introduced in the
body from external, to avoid detection.
Some group in saliva antibodies makes high levels of all kinds of
antibodies. May be over expression of AID.
Healthy individual only have IgA antibodies against pathogens in normal
kids, but in kids with autism there are both high levels, indicating class switching
or AID enzyme abnormality.
Vit A, retinoic acid communicates and regulates dendritic, T and B
cells.  Summary there is possible abnormal activity of AID. There are
multireactive auto-antibodies that are reactive against a variety of tissue, enzymes,
neurotransmission etc. It may start in the gut and cause systemic mucosal immune
dysregulation.

Dr Dan Rossignol
HBOT

1.3 atm, increases oxygen in the plasma.
Did not see any safety issues at 1.3 atm.
Seizures (0.01 - 0.03) %
Surgery is sometimes done inside HBOT chambers.
Cerebral palsy, fetal alcohol syndrome.
1994 first report of treatment for autism.
oxidative stress. free radicals are caused: lose electron in
mitochondria during energy production.
antioxidants have extra electrons to neutralize the free radicals.
below 2.0 atm HBOT increase SOD, catalase etc and hence reduce oxidative stress.
About 2.0 atm it may increase oxidative stress.
oxygen toxicity: About 3 atm and 100% oxygen child has fever.
1.5 atm measured reduced glutathione, either neutral or slightly
improved.
about 30% of kids showed significant improvement in ATEC scores.
Mitochondrial dysfunction: new paper about to be published.
First 10-15 treatments, there was some increase in hyperactivity, went
away later.
Yeast must have been an issue.
For most children we do 1.3 atm, 40 sessions, evaluate, then continue
to 80 sessions.
















   

 

Here are my notes, not edited, or checked, just to help you decide which talks to look for once the talks are
up on the Defeat Autism Now website.


Introductory Workshops:

Basic information for parents who are new to biomedical treatment.

Dr Lauren UnderUnderwood explains basic biomedical concepts.
Basics of biochemistry, immunology, and what can go wrong with these
systems. The basis of the gluten free and casein free diet, leaky gut and
concept of oxidative stress. The methylation and sulphation cycles and resources for parents.

Dr Brian Jepson presented a historical perspective on autism diagnosis and treatment starting
with the work of Kanner. He summarised the abnormalities of autism: neurological, toxicological
problems, immune problems. He explained some of the treatment approaches including
nutritional remedies, diets, supplementation and other advanced
treatments. He talked about the change in paradigm in autism treatment.

Dan 2007 Friday
Dr Jon Pangborn

Introduction to ARI and Defeat Autism Now.
Why is your child/patient autistic?
Various reasons for the rise of autism listed.
For most, pre-existing weakness in detoxification and or antioxidant capability. In some cases there is an immune dysregulation.
Toxic stressors come along at age months, to 30 mins. Biochemistry adapts to chronic inflammation and becomes deficient in
aspects needed for integrative thought and speech.
Preexisting weaknesses:
Folate and B12 chemistry. It how they are used, not their levels in the blood.
Methylation, processing adenosine or homocysteine, glutathione
metabolism, detoxification cells.
Stressors: toxic elements: mercury, arsenic, antimony and lead,
organophosphate and chlorine pesticides,
measels virus, mumps, streptokinase, other xenobiotic pollutants.
Persistent measles in the brain can shut off methylation.
Remove stressors, reset metabolic priorities.
Can autistics be helped? Look at ARI Publications on Parent Responses.
ARI data exists that 1100 children recovered with documentation.
50% success with ABA or other relational therapies.
Does it always work? Several inborn errors of metabolism: not
correctable yet: Rett, Fragile X etc.
Most of todays autistic children can recover or can be signoficantly
improved, because the environmental component
is significant.
We treat the underlying disease.
Methionine metabolism (amino acid from protein from diet)-> methyl and
sulphur chemistry->energy transport, neuronal
synchrony, antioxidant duty, and detoxification.
Most of our kids have defects in the first step, as a result in the
subsequent steps.
CH4 (methane). CH3 - methyl group transfer changes the character of a
melocule.
Melatonin which helps us sleep requires methylation. Creatine and
choline are methylated molecules too, so are silenced genes.
With persistent inflammation, genes switch to promote cysteine
formation instead of methylation and creatine formation.
Some genes become expressed as a result of environmental stressors.
Methylated fatty acids are fatty acids maintain neuron flexibility for
dopamine D4 receptor (attention getting receptor)
to work in synchrony. Doesnt happen very well in persistant inflammation.
Methionine to cysteine is upregulated by inflammation.
Emphasis is switched from methylation to cysteine formation, energy
transport is decreased.
Deadlocked in a vicious cycle.
Break the gridlock -> remove dietary environmental stressors,
bolstering nutrition, relieving inflammation, improving broken
biochemistry.
Suggested order: clean up diet, digestive aids, basic supplements,
trial diets (casein free, gluten free, soy free, SCD etc), treat dysbiosis,
immune supports, metabolic
manupulation, detoxification.
Each child is treated individually. Take one step at a time.

Dr Patrick Hannaway
Mind the Gut

Mind the Gut: the GI tract, Neuroimmunolgy and autism.
The sources of inflammation that lead to oxidative stress and detox impairments.
Mind the Gap: increased intestinal permeability in autism. Heal the gut
and the mind will follow.
Devlopment of immune system: dynamic learning, physiological
inflammation.
GI tract: the role of intestinal flora, leaky gut, the gut-brain
connection.
Healing the source.
Metabolism: a simple approach: Immune function, endocrine function
(communication), detoxification and elimination.
"You are what you dont excrete!"
DDT has the half life of 59 years.
Colonization of the small intestine begins with breast milk. 100
trillion bacteria.
Colonization is in first few days of life. begins with bifidobacteria.
later, overwhelming majority of our cells are non-human.
Functions of bacteria: mucous production, fatty acids, healing, vit
absorption, detoxification, breakdown of oligosaccharides.
Immunoregulation: increase IL-10, TGF beta, reduce T cell
prolifieration, sIgA, NFKB.
Reference: "Microbes, immunoregulation and the gut", by GAW Rook and
Brunet.
Villi and microvilli: one in three epithelial cells is an immune cell!
Dentritic cells below the epithelial cell, contacts the antigen.
Does friend or foe differentiation.
Lymphoid nodular hyperplasia. Dr Krigsman's endoscopy pictures.
The gut is on fire! constant state of inflammation. calprotectin and
lactoferrin in stool are inflammatory biomarkers.
Host microbe cross talk: innocuous food antigens vs normal flora vs
invasive pathogens.
Cell mediated immunity(Th1mediated) and antibody mediated (Th2
mediated) immunity. Intestinal Th1 is minimal, dysbiosis.
Its the seed of inflammation. Increases in allergies and asthma,
autism, inflammatory mucosal disorder.
Dendritic cells sample the cell. Friend or foe? Friend: IL10: accepting. Invasive: IL12 response.
Healthy gut flora: maturation of the immune system.
Dysbiosis: imbalance of bacteria and fungi.
"Gastrointestinal Microflora studies in late onset autism" by Dr
Finegold et al.
Flora cultivated over first two years educate the immune system.
Animation: healthy villi, good absorption. Inflammation: opening of gap
junctions: proteins are introduced to the immune system.
Food allergy, malnutrition, etc cause inflammation.
New area: repair of biofilm.
Comparitive study of the intestinal mucous barrier in normal and
inflammed colon, by "Alexander Swidsinski et al".
Eliminate offending foods: casein, gluten etc.
Book: The Second Brain: Michael Gershon, MD. - more neurotransmitters
in the gut than the brain!
Probiotics: discourage pathogens., chronic inflammation, prebiotics:
Fructooligosacchrides: food sources for bacteria, and inulin.
Inflammation leads to leaky gut.
Immunoglobulin production: S boulardii.
L glutamine also feeds candida, so not recommended with candida
overgrowth.
Heal the gut, and the mind will follow.

Dr Jon Pangborn
Dietary options, and Digestive Aids.
Specific food allergies: IgE mediated.
Delayed type response: IgG mediated.
Metabolic problems: Casomorphine peptides bind to CD26 (DPP4), inhibit
adenosine processing which inhibits methylation
by SAM. undigested fat ties up calcium, increases oxalates. DPP4 is
attacked by lead, mercury, organophosphates etc.
Undigested fat combines with calcium and we lose the calcium, and
interferes with oxalate excretion.
Sugars in the diet are complex sugars, feed the gut bugs.
Remember to supplement calcium and phosporous in supplements when dairy
is excluded.
DPP4 enzymes help digestion of gluten and casein. It doesnt help with
CD26 interaction, doesnt bind to adenosine
deaminase, but still of some help. DPP4 is impaired by streptokinase
(from the strep infection).
Disaccharidases are enzymes for digesting complex sugars. Sucrase,
maltase, lactase, isomaltase etc.
Horvath and Perman published on lacking activity of disacchidase
enzymes.
Kushak, et al, "GI symptoms and intestinal disaccharidase activities in
children with autism".
Dr Bradstreet study on fat malabsorption in about half the children with autism.
Enzymes are not a substitute for exclusionary diet. Take enzymes at the beginning of every meal.

Dr Elizabeth Mumper

Case History: MMR before one year. Amalgams during pregnancy, molar
implant, fish intake and Hep B, tetanus and flu vaccines. diarrhea, foul smelling stools.
Metabolic Analysis Profile, Great Smokies Lab. Clostridia and high arabinose.
Proprionic acid associated with OCD, autistic behaviors.
High lactate: mitochondrial dysfunction.
High Krebs cycle markers. High MMA (need for methylcobalamin), normal
Figlu. Add B vitams and magnesium.
Remove junk foods, toxins etc
Replenish probiotics etc
Repair: HBOT, immunoglobulins, thyroid.

Food restrictions: GF, CF, corn, soy, peanuts, eggs.
Foods that cause red cheeks, red eyes etc.
Insensitive to pain: likely to respond to GFCF.
Gut healing nutrients: vitamins, probiotics,
Probiotics: 5-10 billion organisms a day. S Boulardii, stimulates IgA
production.
Prescriptions: Nystatin, Diflucan, Nizoral, Sporonox, Amphoteracin B.
Nystatin may not be so helpful.
Rash on leg. skin is dry. Sporonox: nail fungal infection.
Sporonox for giggling, screaming etc. Do CDSA: found Clostridium:
Flagyl and vancomycin:
Cyproheptadine to help appetite on low dose (anti-histamine).
Cytokine profile in the duodenal LPL: TNF-alpha strong marker for
pro-inflammatory cytokines : chronic inflammation.
Look for parasites.
HBOT sometimes helps normalize stools. Aloe Vera + Magnesium is a good
treatment for constipation.
Water obsession is often PANDAS.
IM Rosephin good strategy for ear infection.
Olive oil: good to gain weight.
Urinary Porphyrin profile for heavy metal toxicity.

Dr Nancy Ohara
Biomedical Interventions A to Zinc
Patterns: Genetic Predisposition, neurological problems, immune system
dysregulation
Methylation cycle, generates glutathione. We need more reduced
glutathione.
Diet: fresh, unprocessed, unrefined, organic, whole foods, varied and
rotated.
Juicing, raw foods, fermented foods (kefir), good fats.
Do CF for atleast 3 months. SCD trial for atleast few months.
Peeling skin is a sign of strep.
Xylitol is good against strep
Antimicrobial herbs, oral immunoglobulin etc are immune supporting.
Clostridium is associated with aggression, foul stools etc.
Treatment for antibiotics: sacchromyces B, may be antibiotic, herbals.
Parasites: insatiable appetite, mebandazole.
Natural remedies (pumpkin seeds).
Fungi: refined carbohydrates feed yeast.
Naturals: Garlic, Caprylic yeast, Oregano oil, grapefruit seed extract,
S Boulardii.
Charcoal acts to mop up the die off reaction.
Viral: visual issues, cold sores,
High dose Vit A, olive leaf extract, monolaurin.
Supporting the immune system.

Dr Anju Usman
Detoxification strategies and individualizing chelation protocols

Total toxic burden: mother's burden, environmental, vaccines etc.
Methylation cycle.
Dopamine keeps motor movement smooth, helps you focus.
Seratonin keeps you happy. Homocysteine goes on to make glutathione to
help with oxidative stress,
and helps with detoxification.
Mother's toxic burden is passed on to the child.
Child's history: immunization, GI issues etc.
Mercury symtoms parallel autism symptoms, glutathione is the primary
mechanism for excretion is low in autism.
Autistics have higher urinary porphyrins, than controls.
Recovery is possible with mercury detox.
Lead toxicity: deficiency of protein, Ca, Zn, Se, Fe., Immunotoxic,
Th1/Th2 skewing.
Reduces GABA, increases excitotoxicity.
Learning delay is due to lead.
Aluminium toxicity: poor short term memory, speech problems, numbness,
impaired fine motor
coordination.
Persistant organic pollutants.
Biological burden due to viruses and bacteria.
Detoxification: phase I: Fat soluble toxin to something more toxic: for
a very short time.
Methionine makes cyteine, and it makes glutathione, metallotheinine,
ALA, sulphate etc.
Clean up the environment: organic detergents, floride-free toothpaste,
aluminium free.
Limit intake of phenolics: apples, grapes, strawberries.
Pharmaceutical chelators: CaEDTA, DMPS, DMSA.
CaEDTA known to increase IQ.
Negative reactions: increase stimming, yeast flare up, mineral
depletion,
activated charcoal, Alka Seltzer Gold,  plastics, food packaging.

Dr Jeff Bradstreet

Biomarkers: Oxidative stress: urine 80HG. Blood: transferrin,
Ceruloplasmin.
Methylation and transsulfuration: plasma fasting cysteine and
methionine
Immunological: urinary biopterin and neopterin.
Blood: antibodies to blood vessels in the brain, strep, IgG subtypes,
cytokines, etc.
Permeability studies.
Toxicity: environmental from blood test, DMPS is not proving to be
effective because of
a possible pharmacological problem.
Urinary porphyrins: still consider helpful.
PCR test for clostridium still under development.

Diet Modifications: go organic, multifactorial reasons.
Nutritional support: Inadequate nutrient intake.
Dysbiosis (Gut Pathogens) Biofilm therapy.
Probiotics and cultured foods, vancomycin, flagyl and antifungals.
Antioxidants: glutathione etc.
Immune modifying: IVIG, IBD Rx, Allergy type Meds, steroids, novel
anti-inflammatories
secretin and oxytocin.
metal detox: various methodologies.
Mild HBOT.
Methods of treatment: based on deficiencies or biomarkers.
Omega 3 fatty acid supplementation in children: double blind placebo
controlled study:
Paul Amminger et al.

Zeolites: are volcanic ash and are rarely pure. Doesnt bind heavy
metals at al. It looks
like a big filter. Zeolites stimulate immune system by traumatizing the GI tract.
They have potential to bind heavy metals, not along with nutritionals.
Can keep mercury from getting absorbed from food, like fish. They are large
macromolecules, can. They bind bilary excretion of metals. They have
potential to prevent further bioaccumulation as well as toxins from the gut. May traumatize
gut.

RNA.
Interference RNA. Great potential for measels. Liposome protected RNAs
to be given
intravenously. Watanabe et al have publications. Administration into
the vein determines
where it goes. 5 mg/kg of IV. Cost is astronomical. Enzymes in the gut
degrade it rapidly.
RNAses are extremely common, resulting in very short lifespans.
Oral therapy has no published literature, as yet.

Is there a homeopathic effect of RNAi?
"Impossible Cure" by Amy Lanski.
Nothing published at this time.
Classical homeopathy, lack of side effects.
May be interefered with allopathic medications.
can be complicated and skilled practitioners are in short supply.
Nasal Oxytocin and Secretin.
Intriguing neuropeptides. Not likely

"Secretin's role in the cerebellum: A larger biological context and
implications for
developmental disorder", Martha G Welch, Robert J Ludwig et al.

"Administration of secretin for autism alters dopamine metabolism in
the CNS", by Yoshihiro
Toda et al,
"Oxytocin Infusion Reduces Repetitive Behaviors in Adults with Autistic
and Aspergers
Disorders"

Helps with anxiety using nasal administration.
"Oxytocin modulates Neural Circuitry for social cognition and fear in
humans" by Venkata
Mattay et al.
DMSA study by James Adams et al.
Dr Woods study on porphyrins, a unique biomarker for mercury.
Study initiated on porphyrins.
Natafs lab and Dr Woods laboratory results are consistent.
We dont see two fold increase in porphyrin levels in autism. Needs
further study.
Oxidative stress is generally correlated with mercury toxicity.

D- Penicillamine supplement copper and zinc.
The toxicity pattern of D-Penicillamine therapy. A guide to its use in
rheumatoid arthritis.
Kean et al.

"Evidence of Mitochondiral Dysfunction in Autism and Implications for
Treatment
D Rossignol and J Bradstreet.

Oxidative stress: Acai 1-2 scoops of the freeze dried products.

Biofilm: Book: Biofilms: Process analysis and applications, "James
Bryers et al"
BioFilm sinus and gut strep
Kids who do poorly on B6 and thiols are likely colonized from biofilm.
Charcoal, pectin, zeolites may help.
Oral sodium EDTA may be a future treatment for disrupting the biofilm.

Actos: there is a published study but no safety studies.
"Elevated TNF alpha in CSF of autistic children". shows number higher
than meningitis
and other forms of CNF infections.
Minocin : Minocycline Antibiotic. too early. Its a major antibiotic.
Rilutek : anti-glutamate drug. some have helped in OCD.
Gastrocrom: antihistamine, not immune suppressent.

Stem cells:
Stem cell therapy for autism:
Frank Morales.
Cord blood + mesenchymal stem cells. Still too early. Better to wait.
HBOT study:
Individual Responses Vary.

Continued notes from Autism One, Part 3.

Disclaimer: These are just notes from a conference, not medical advice, and all errors are mine.

Day 3 began with very interesting speakers. I had to choose between Susan Owens' talk on Oxalates and lo-oxalate diet, and Dr Neubrander's talk entitled: "Lights, cameras, action - methyl B12 returns to the spotlight for treating ASD!" That is so characteristic of Dr Neubrander's style! I guess the Lo-oxalate talk would have been more filled with new information, but I needed to wake up and get energized, so I went for Dr Neubrander's talk! He introduced Methyl-B12 as a power player for executive function, speech and language, socialization and emotion. In his treatment time clock, Methyl B12 comes first, followed by diet and supplements. He described the balanced state of methylation and trans-sulfuration and the effect of oxidative stress. Inflammation causes oxidative stress and shifts HCY towards glutathione synthesis. He has evaluated over 1/2 million doses of Methyl B12, during which time he has found about 20% show significant response, another 20% show moderate response. Majority of children lose gains within weeks to six months, should they stop methyl B12. Optimum route for administration is subcutaneous injection, followed by nasal inhalation. Regarding the best test to perform to assess Methyl B12 need, he mentioned that he has found no correlation between markers like MMA etc and actual improvement upon Methyl B12 treatment. It is extremely safe, there is no report of toxicity.

After this talk I attended Dr Krigsman's lecture which was a significant presentation of characterization of GI abnormalities. I commented on this in the beginning of the first day's notes as one of the areas where we have made significant progress as a result of the PillCam technology.

Dr Denise Tarasuk had a presentation on Thuja Occidentalis: The Tree of Life. This was a talk on a homeopathic remedy that I have done a trial of, with not much change, so I decided to go for the presentation on pathogens. Tracy Zieman and Sonja Hintz had a presentation on "A Battle within our children: the impact of bacteria, viruses and parasites". They are from Dr Usman's practice in IL, and had a complete talk focussing on pathogens: yeast, bacterial, viruses and parasites. The described an arsenal using medication, herbs, nutrients and homeopathic remedies. Pathogens have evolved to survive and negative reactions are because of their drive to resist our treatment. Some natural anti-inflammatories mentioned were curcumin, boswellia, green tea nettles, slippery elm, cat's claw, aloe. Pharmaceuticals mentioned were antihistamines, montelukast, sulfasalazine, spironolactone, actos, steroids etc. Nutrients are Vit K, D, EFAs etc. Yeasty symptoms (all so familiar!) were listed: giggly, spacey, night time wakings, hyperactivity, sugar craving etc. Can be detected in stool mycology and urinary Organic Acid Tests. Common antifungal drugs and herbal remedies were mentioned. Strep symptoms like OCD, repetitiveness, were listed. Natural anti-bacterials were golden seal, oregon grape root and neem. Natural immunomodulators are colostrum, transfer factor, oral immunoglobulins, etc. Treatments for PANDAS are IVIG, plasma exchange etc. where studies are inconclusive on efficacy. Clostridium is associated with aggressive behaviors, tantrums etc. Treatments are probiotics, antibiotics, HBOT etc. Viral symptoms are visual processing, and cognitive processing difficulties etc. Treatments are IR sauna, anti-virals etc. Treatments for parasites are probiotics, pumpkin seeds, coconut oil, anti-parasitics etc.

Dr David Quig spoke on the basic pharmacology of common chelating agents: DMPS, CaEDTA etc. He described the basic principles of toxicology, acute vs chronic. A good measure of retention of Lead is provoked urinary excretion measurement of Lead. These agents are primarily extracellular. Do not appreciably cross the BBB, but exert a "pull" effect and create a concentration gradient, thus causing a push from intracellular space. DMPS is not FDA approved, needs informed consent, DMSA is FDA approved for lead poisoning. Never push Na2EDTA, slow drip CaNa2EDTA. DMSA does not cross BBB or increase brain Pb or Hg levels.DMSA, EDTA and DMPS have some antioxidant effect. Rectal DMSA and CaEDTA seem to be effective, IV is effective in general.

Dr Seth Pearl gave a presentation on craniosacral and acupuncture. He described how alignment methods work to relieve symptoms using craniosacral methodology, and showed an impressive demonstration on how cranio sacral work is performed using a light pressure to facilitate free movement of cerebro-spinal fluids.

This by no means covers all the talks since there were parallel tracks, but this is my snapshot.

Hope it was useful!

Notes from the second day of the Autism One 2007 conference:

Disclaimer: these are my notes, not medical advice, and any mistakes are my own.

The second main day of the conference started bright and early at 7 am with a keynote address by Dr Martha Herbert. She had an impressive presentation "Next steps with the new autism paradigm: science, infrastructure and horizon". She had a good presentation on the changing perception of autism as new evidence emerges. The old model of an untreatable condition due to genetically determined brain developmental errors to one that supports a gene-environment interaction, chronic, one where recovery is possible, etc She had slides on the differentially enlarged white matter in autism and more on inflammation. She suggested a couple of books: "Selling Sickness" and "The truth about the drug companies". Another resource she listed was http://www.functionalmedicine.org She defined the principles of functional medicine: She also talked about collaboration and infrastructure to support new research. Her website is http://www.marthaherbert.com

Dr Nataf, the one who brought the porphyrin tests to our community, gave a presentation that focussed more on the neopterin/biopterin test and oxidatives stress markers. Neopterins increase when cytokines increase. He observed that there is some linear relationship between biopterin/neopterin ratio and 8OHG. As a measure of oxidative stress he mentioned that the 80HG values were about twice as that of controls, and 8OhdG values were again twice those of controls. He talked about how to interpret the porphyrin ratios on the test results to determine signs of mercury and/or lead toxicity.

Dr Andrew Wakefield's talk was titled "The emerging pathogenesis of autism". His opening line stated: Autism starts, in a susceptible individual, as an aberration in innate immune programming, leading to immune dysfunction, intestinal immunopathology, etc. He mentioned that Kanner talked about GI issues in 7 of his first 11 patients. He characterized and showed pictures of various types of intestinal conditions. He mentioned that 70-80% of autistic children have GI problems, and that of those with GI problems anywhere from 88-100% have intestinal inflammation. Cytokines from systemic inflammation can cause time-critical changes in neuronal function and development. He mentioned the correlation to early exposure to MMR.

Dr Dan Rossignol gave a presentation on the evidence of metal toxicity in autism.

This was followed by a talk by Dr Susan Swedo on NIH funded research on autism. This was very interesting. This is "mainstream medicine" funded research on autism. She talked about research to characterize the regressive phenotype of autism, the immune response and markers for at-risk individuals. She drew parallels to the streptococcal infection in OCD patients and the PANDAS work. She talked about trials of use of Minocycline for regressive autism and Riluzole for OCD as examples of NIH studies.

Dr Rossignol had another presentation on hyperbaric oxygen studies. He talked about its benefits in hypoperfusion areas of the brain. He mentioned that HBOT perhaps increases antioxidant enzyme SOD, glutathione peroxidase etc. He explained the issue of oxidative stress and that at the pressures used: 1.3 atm and 1.5 atm there is perhaps no concern about worsening oxidative stress. He talked about improvements from HBOT, specially in motivation, etc.

Dr James Adams' talk was eagerly awaited, since he presented the results of his third DMSA chelation study. The purpose was to study the benefit of DMSA/glutathione treatment. The first phase was 9 doses of DMSA over 3 days, and glutathione, and measured toxic metal excretion. If there is significant metal excretion go to next phase. Out of 80 enrolled, 48 proceeded to phase 2. Essential minerals were found to be reduced, which was soon replenished, so there were no permanent effects of the treatment. It was found that DMSA generally normalized glutathione whether baseline was high or low. Some patients stopped excreting heavy metals and treatment was discontinued after few rounds, and for others treatment was continued till the end, 7 rounds. It was found that the difference in outcome (on parent rating scales) did not differ much between the single round of DMSA and 7 rounds. He hypothesized that perhaps glutathione was normalized by the first round and that determined the benefits seen. Children with lower baseline glutathione showed the best improvements. Preliminary results were that DMSA did not significantly impact liver enzymes, kidney function or complete blood count.

Dr Richard Deth's talk was very detailed and interesting, as always. He talked about how genes and environment conspire to cause the problems in autism. He went through the various biochemical phenomena and outlined the specific genes involved in each process. He outlined the role of sulphur metabolism, how it maintains cellular redox function, provides for detox and helps maintain cellular methylation status. He described the role of methionine synthase, and how it is inhibited from its role in methylation, in the presence of oxidative stress. He explained the 5 domains of methionine synthase and how alternate splicing (which is age dependent) could produce a missing domain, thus diverting more HCY to glutathione synthesis to combat the oxidative stress. There are lower amounts of mRNA for methionine synthase in the cortex of autistic subjects, and perhaps lower levels of enzyme. Lower expression levels may reflect an adaptive response to oxidative stress. This may imply impaired methylation.

Mark and David Geier presented on the connection between mercury, glutathione and testosterone in autism. They talked about the dose of about 275 ug of mercury that was possibly injected in the first 24 months of life. Besides, rho immune globulin shots containing mercury at about 40 ug of mercury. They talked about the similarities between autism and mercury toxicity. They outlined prior work by Dr Bradstreet et al on increased body burden of mercury in autistic children, and the more recent work by Dr Nataf et al, using porphyrins as a measure for body burden. They described the effect of elevated testosterone in autistic individuals, and its correlation with severity of autistic symptoms. They described their combined Lupron/chelation protocol and its benefits in autism.


Michael Uszler talked about brain function imaging through SPECT scans, and their difference with respect to other imaging methods. He reiterated that autism is a condition requiring medical treatment apart from behavioral and educational therapies. SPECT scan can directly help us look at brain function as opposed to only structural details. The information can be used to document brain function before and after a therapy to assess the efficacy of the treatment. Both hypoperfusion and hyperfusion areas can be visualized through SPECT scans. HBOT generally is thought to cause visible changes in brain function through SPECT scans. To choose a SPECT scan provider, it is better to consider places that do pediatric brain SPECT scans and have experience with sedation of autistic patients.

At the end of the day was a screening of the film "Finding the Words", a film about autism, treatment and recovery, by a wonderful filmmaker Elizabeth Horn.

More in the next part on the concluding day of the conference.

This was my first Autism One conference at Chicago. There are two aspects of this conference that appeal to me. In this conference speakers get to present more "Hot off the press" topics. Which is good for parents like us who have tried all the standard fare and still looking for more. Secondly, this conference has four simultaneous tracks, covering biomedical, therapies (language, teaching, RDI, etc), alternative treatments (homeopathy, cranio-sacral etc), and legal issues. So there is a good mix of everything that we are looking into these days.

It was a great (and exhausting) conference! Of course deep down I wish my son is at a point where I dont have to go to these meetings, but he is not there yet, so I need to keep learning, thinking, wondering what to do to help him.

I attended most of the talks in the biomedical track, but I did attend a few in the alternative treatments as well.

Disclaimer: any errors are mine. This is just notes, not medical advice.

One of the highlights of the conference for me was Dr Krigman's characterization of bowel disorders in our children (that he named autistic enterocolitis). Starting from the mouth region, through the eosophagus, stomach, small intestine and large intestine, in each region he characterized the types of bowel disorders seen in our children. He also mentioned which cases were also prevalant in typical kids, but more frequent in ASD kids. His knowledge comes from looking though the PillCam: a pill-sized device that moves through the digestive tract and transmits snapshots to the outside world as it travels the entire path. These snapshots from all the ASD kids he has scoped gives a unique perspective to the bowel issues our children suffer from: inflammation, polyps, LNH, candida, virus and various immunological reactions.
And he reminded us of all the "behaviors" our kids probably exhibit, to cope with pain: tantrums, pressing their abdomen against a hard surface, banging chest, banging head etc.

Notes on the first day

Dr Bradstreet gave a talk on new bio-markers and advanced treatments. The highlights were the use of biomarkers for oxidative stress: 80HG (from the french lab http://www.labbio.net), methylation: plasma cysteine and methionine, immunological markers: neopterins and biopterin from the same french lab, and heavy metal tests using porphyrins (the same french lab, although it appears that couple of other labs have started performing the same tests.) He touched upon IVIG as an immunological treatment and an anti-inflammatory. He also highlighted the gut dysbiosis issue as being key, and re-kindled interest in cultured veggies and coconut kefir. The brand he mentioned is Cocobiotic. (My note: yes, its available pre-made! This has renewed my own inclination to start the Body Ecology Diet again. It is a lot of work, but curing gut dysbiosis is key to reducing those regression episodes and chemical sensitivities etc. I cant believe that any medications or probiotic supplements alone can do the job. Atleast they haven't, for my son.)

Dr Boyd Haley's talk was one of the most depressing. The topic was "Mercury Toxicity and Neurological Diseases". He mentioned alzhiemers in lab animals could be caused by injecting mercury. He described an experiment he performed to measure mercury from dental amalgam fillings. He reported the mercury content recorded by a mercury analyzer. Drugs used to treat autism/ADHD have increased 365% and the US spends more on ADHD drugs than antibiotics and asthma drugs. Another striking point was that the amount of mercury injected in new born babies would be EPA safe if the children weighed 275 lbs. Mercury inhibits many enzymes and could inhibit mitotic spindle formation of immune cells, interfering with their cell division. He talked about epidemiological studies by IOM on the mercury issue. He endorsed the urinary porphyrin test for mercury toxicity. (This is a relief for those us who have already spent hundreds of dollars on this testing). He talked about chelators for mercury.

Dr Elizabeth Mumper gave an eloquent talk on "Vicious cycles in ASD". She talked about vicious cycles in the gut, detox mechanism, methylation, and immunology. She had a few slides on zinc supplementation and its benefits in gut healing. She spoke about documented improvements in ASD behaviors with gut healing and calprotectin as a marker for gut inflammation. She referred to the Vargas et al, paper and the examination of CSF. There were inflammatory cytokines in the CSF but not in the brain tissue, which suggests an external origin. She talked about the various benefits of glutathione. She also described laboratory tests for heavy metals and summarized an overall biomedical approach to treatment.

Next I attended a talk by Dr. Woody McGinnis, more on oxidative stress (oxidation is loss of electrons). He mentioned that toxins are higher in ASD individuals, which is oxidative. He highlighted P5P as anti-oxidant and also supporting mitochondrial function. He also highlighted zinc deficiency in autism and showed a picture of the white flakes on the finger nails, as indicative of zinc deficiency. Magnesium blocks glutamate receptors and prevents oxidative brain injury. Brain is very sensitive because it is a large consumer of oxygen, so is the gut. The key points are to optimize nutrition, address allergies, eliminate toxins and reduce stress.

Next I switched tracks to attend the talk on the Lyme-Autism connection by Nicola McFedzeen. I have heard about this connection, but never investigated, so this was a good talk to learn something about it. Lyme disease is due to a bacterium. It is carried by ticks, mosquitoes etc and causes a multisystem inflammatory disease that could affect the nervous system. Acute Lyme infection is treated by short term antibiotic. But many cases of acute Lyme infection are not diagnosed and progress to chronic disease. She mentioned that perhaps 95% of ASD persons may be Lyme positive! Pregnant women can pass lyme to their offspring. She mentioned the symptoms of Lyme disease and the lab that specializes in testing: Igenex. Western Blot testing is more sensitive than ELISA antibody testing. She mentioned some natural treatments: Cowden protocol (uses Samento), Zhang protocol etc. The website is http://www.lymeinducedautism.com and some books are "Lyme Disease and modern Chinese medicine" by Zhang and "Healing Lyme" by Buhner.

Stan Kurtz had an interesting talk and wonderful videos of his child's recovery using the anti-viral Valtrex. He spoke about the viral-metals detox theory. It is so heart-warming to listen to a father on how his child recovered. (Our kid has viral issues as well, so I can relate to this).

Next I stayed on the alternative treatments course to hear a talk on Sequential Homeopathy. This is the houston place that does homeopathic reversal of the assaults that might have resulted in the problems in ASD. The speakers were Cindy Griffin and Lindyl Lanham. (my note: I have not had much success with homeopathy so far but this is the closest one has come to being involved with all the research by the DAN group and attempted to treat homeopathically. I know others who are seeing some success, so this is something to keep in mind). Their approach is to use multiple remedies (that they believe works for chronic illness) and peel away in layers, the various conditions, including detoxification, addressing microbial issues etc. using energy medicine. They mentioned metal excretion in test results. Thier website is http://www.homeopathyhouston.com

I missed Dr Rashid Buttar's talk which was titled "Beyond Mercury and Chelation: The Buttar Brain Recovery protocol". I will add if I get some information.

More in the next post.

Here is Siddhu, the brave boy!

Since our dear son Siddhu's treatment has taken a different focus, it is time to ponder this angle. As you all know our son is fully vaccinated, actually he got multiple shots on the same day several times. After his booster shots he developed the full range of autism symptoms: hand-flapping, learning disability etc. There is about a period of one year after that regression, that he was completely unaware, and he has no recollection of that period today.

He developed constipation that got worse after every vaccine. He was too "healthy" - he never fell sick and the only reason we went to the pediatrician was to get vaccines. After he completely regressed, he had food intolerances to about 100 foods. He would scream, shout and act hyperactive if he had any trace of gluten, MSG or "food coloring".

His detoxification was impaired and his reactive intestine made it difficult to treat him for anything. He developed chronic candidiasis, herpes type I (oral), and occasional coxsackie viral eruptions.

Today, we consult with a well known immunologist. Siddhu is receiving IVIG infusions to rebalance his immune system. Each infusion is a 5 hour slow drip. (Remember my son is eight years old). We pay out of pocket $2500 for each infusion. This is an attempt to restore his immune health. Our goal is to observe his progress for 7 infusions and discontinue if we see no marked change. Else we continue to 17 infusions.

First infusion: magically his bowel movements are normalized. No more aloe/prune/flax-seed/oxy-powder/.... There is no relationship between constipation and immunology, right?

Second infusion: bowel movement still normal, viral eruptions still occuring but seem less in intensity. For example, the oral lesions are only in the nose bridge, not in the entire lip area. He is reading Dick and Jane books with a little help. I can see some evidence of "learning". i.e, you teach one word once, and the next time he encounters it, he recalls it correctly. He is trying to add one digit numbers by rote. At home I have not seen a single episode of hyperactivity in the past couple of weeks. He has not been banging his head against the leather couch. He is able to tolerate a slight diet infraction.

After the third infusion, his therapist says: "Whatever you are doing, just continue. He is doing so much better. More focus. Progress in reading, he can sit still and learn", etc. He has only one episode of oral herpes (cold sores) this time. He is still on Diflucan, his yeast comes back with a vengence if I stop. He had a serious regression due to exposure to new paint. His gut dysbiosis is probably worse, and his OCD behaviors (cars etc) have returned. So I have to go back on my word (about not making any changes to report on the effect of IVIG) and do something about the gut healing. We are doing the cultured veggies, body ecology diet (once again, we have tried this before with some success. I gave up because of the work involved!). So I will report next month.

In the meantime, we have a neopterin/biopterin test result from France (http://www.labbio.net). His prior results (prior to IVIG) were Neopterin: 778, Biopterin: 334. Bio/Neo ratio: 0.4 (Reference Range > 1.5) Remark: decreased ratio, increased cellular immunity activation. (Neopterin too high, Biopterin low).

His current results are: Neopterin: 274, Biopterin: 493. Bio/Neo ratio: 1.8 (Reference range > 1.5) Remark: favorable ratio!

After the fourth infusion, we are definitely seeing more awareness and expressive speech. I dont know if this gain will remain, or whether its a teaser. For example, the other day, I was about to go to bed in my jeans and he goes: "Ammi (which is what he calls me), change your clothes!". It freaks me out if he displays this sudden awareness and interest in things other than cars!

At this point, he had a regression due to narcotic painkillers and antibiotics. His hand got jammed in an airport door by a hurried airport employee and he endured a laceration in his middle finger. He underwent surgery to attach the finger, and ended up with antibiotics and a painkiller. Hope the finger comes back.

After fifth infusion, continuing with the Body Ecology Diet (http://www.bodyecologydiet.com) and adding in grain rotation and coconut kefir thrice daily, Siddhu continues to make progress. He went to art camp for the first time. I was his aide, he needed assistance to do his work, and all the projects had to be adapted for him. But he did sit with the kids and do some tasks independently. He was regulated all the while, and adjusted to the changing demands on him.

Yesterday he came up to me and said "Lets play game!" and brought me a board game for the first time. This morning, he took a painted picture of our old home, he placed a blue object on it and said "This is old house. This is swimming pool!" Then he looked at me and said, "This is NOT swimming pool. This is NOT old house. This is PRETEND old house. This is PRETEND swimming pool!"

I think I will continue making the smelly cultured foods for the rest of my life!

Obviously I had to rush and update this blog!

Now, we have completed seven infusions of IVIG. We also did one infusion of Vit C, NAC, glutathione, CaEDTA, DMPS and secretin (all in one infusion) this month. His pretend play has really blossommed.  He also attended an art based summer camp for a week, where I assisted him as an aide. He did pretty ok, he was able to sit next to the kids and do his work, although he could not interact or follow group instructions. After that his ability to play creatively with the objects in the home, has blossomed even more.

Recently he has started going to a class, that is a non-categorical special day class. Which means that his class is not a 1:1 ABA class tailored for autism. There is considerable group activity and the class ratio is large enough that he gets less support. He has had some rough days, but he is settling in. He could not have attempted this a year ago with all the hyperactivity and emotional outbirsts. I still do not know if this will work out, but I am happy with his progress so far.

My husband tends to make work related phone calls late into the night. This obviously annoys Siddhu since he needs perfect silence to go to sleep, and needs us to be around him while he goes to sleep. So he said, "Appa, no more phone call, go to sleep!" To which my husband said, "Can I make one more call please?" and he said, "No more calls, put the phone in your pocket, go to sleep!"

So one thing we have noticed is that we dont see much echolalia anymore and an increase in expressive speech.

We are continuing the Body Ecology Diet and added sea vegetables to his diet recently. In some testing we see hypothyroid issues and H.pylori. So the sea vegetables might help with the iodine intake. The H.pylori is a bit scary, since I am prone to H.pylori, ulcers etc myself. I will report on his GI workup next month.

I will continue to update here (every month) whatever observations we see. Whichever way this goes. If he develops significant expressive speech or if he makes significant cognitive improvement, we would call the treatment effective.

IVIG is an immunological treatment of last resort. Given the cost and inconvenience, not all kids with autism are treated this way. So far to me it seems like it is worth a trial!

The christmas season is upon us, and for those of us with an autistic child, its a mixed bag. On one hand we are faced with holidays, no schedules, shopping, unstructured routines and unexpected visits, which are all challenging for our kids with autism, but on the other hand we have opportunities to expose our children to fun and relaxing christmas festivals and lights, music, gifts and sharing. Above all our kids have more opportunities for sharing experiences, creating memories and interacting.

Christmas is the season of giving, and my thought goes to volunteering and how much it could mean to parents and individuals with autism. Throughout the year parents with autistic kids train themselves in every technique known: ABA, RDI, PRT, Floortime etc and eventually become good at interacting with our (autistic) kids. However, most parents long for respite. In most cases you cannot take an autistic child to a park, let him run around with other kids, sit on the bench and relax. You cannot take him with you for a family gathering and sit down to have a peaceful chat. You cannot drop him off at a friend's place with typical kids and run an errand for a couple of hours. You cannot leave him with any random baby-sitter and go have dinner with your spouse. Some parents cannot even take a shower break and leave their autistic child alone in the living room.

With around 1 in 100 children diagnosed autistic, we really need to, as a society, learn to interact with, respect and give company to autistic children and adults. My desire is to create a simple guide to help someone volunteer to spend quality time with an autistic individual. Parents of autistic kids spend night and day worrying about whether their kids can learn to live in the society, and some people really wish they knew how to help a parent with an autistic child, or just enjoy the company of a child with autism. There are many books written about autism, but unless one works with autism everyday, one is not possibly reading every published book. So I wish to make a very concise set of guidelines to help anyone train oneself to interact and bring joy to kids (or adults) with autism. I am summarizing techniques derived from several approaches, and from my observation of people around me who have instinctively figured out how to interact with my child.

Please give your feedback to make this a useful set of guidelines, and suggest your techniques, and I will promise to edit this guide.

This is a guideline to help one develop the skills to interact and spend quality time with a child with autism. This is for volunteers, extended family, friends, teachers and anyone who knows someone with autism.
This is not about remediating autism. That is a whole different topic.

What you need to know about autistic individuals
- Most autistic individuals have some degree of language difficulty, both expressive and receptive.
- They have some degree of social difficulty, hence making interaction with unfamiliar adults and/or peers difficult
- Some have sensory difficulties, hence making it hard for them to deal with certain lights, sounds, textures, etc
- Most have processing delays, hence need more than customary time to react to any verbal inputs, commands, etc
- It is common to have difficulties integrating multiple inputs at once: for example, two persons talking or background noise
- Many have food sensitivities, which might affect immediate behavior, causing mood changes, hyperactivity etc
- Some have anxiety issues, mood swings, and unpredictable rages, tantrums etc
- Most have deficits in flexible thinking, and do better in fairly known and structured environments
- Many have chemical sensitivities, and one has to be sensitive to exposing the person to toxic chemicals: sprays, pesticides, cleaning materials etc.

What you need to do to prepare
- For your first experience with an autistic individual pick a short duration, like 1/2 hr and increase subsequently.
- Maintain a calm and collected composure, under any circumstance. Understand that many of the behaviors of an autistic individual are beyond his control and sometimes, his attempt at regulating himself, calming down or shutting out too much input.
- Keep the environment calm, free from loud sounds, bright lights etc.
- Prepare to give the child 100% of your attention. You cannot have a conversation with someone else, speak on the phone, take care of something on the stove, fold the laundry etc.
- Prepare to engage the child, keep him calm, and stay calm yourself. Most kids cannot engage themselves independently (including watching TV)
- Do not assume he can play age-appropriate games, even if he can with his parents, he may not be able to, with you.
- Do not introduce new peers etc and make sure you dont have a crowd, or unexpected visitors

Assess the child
- If he speaks, assess his language ability. You can start to use the same level of language.
- Sometimes the child's receptive language is more advanced. Slowly try to increase your vocabulary and speak more naturally. If he does not follow, you need to simplify your language further.
- Assess his play skills. If he can pick out and play with toys and objects, you can start playing at the same level. He may not be capable of elaborate pretend scenarios.
- Assess his processing delays. Talk very sparingly and use more gestures and demonstrations. And always wait for a few seconds to allow the child the time to process your input. If he starts stimming (flapping hands, stiffening, shaking etc, it may a sign that he is overloaded, and you need to reduce your inputs).
- Assess his ability to interact. He needs to make eye contact and engage with you and enjoy the process. If this is only possible in a tickling or "catch ball" game, that is where you start. Do not expect complex back and forth communication, or he may just walk or run away.
- Assess his motor processing. If he can follow one step directions, attempt two steps etc. Most kids have difficulty sequencing and following multiple step procedures
- Assess his learning style: does he imitate well, (copy your actions), does he learn by listening, needs hands-on demonstration etc.
- Assess his attention span: does he need to take frequent breaks, what is his focus level?
- Assess whether he is an over-reactive kid, in which case you slow down, calm down and help him regulate. If he is under-reactive, you have to be more animated, charged and expressive.
- Assess his comprehension: stories, social themes etc.
- Assess his ability to do collaborative work. Can he do a craft project with you as partner?
- Assess his ability to understand consequences. Can he understand simple "if-then" statements?

By now you have a good idea of how you can start to interact with this child.

Engage
Try one or more of these techniques
- If he has a variety of interests and initiates play, follow his lead. As he is interacting and is comfortable, continue to challenge and vary your interactions to keep him interested.
- If he is not necessarily interested in you or anything in particular, try to engage him by using very basic baby-play: ticking/chasing/rolling ball etc... basic back and forth interactions. And then advance to more complex themes like building with blocks, puzzles etc.
- If he is strongly motivated by something that possibly appeals to him (sensory/repetitive/perseverative etc) use it as a reward and get him to do something with you and reward him later.
- Start off by doing something that is not difficult for him. He may willingly join you in your activity.

Tips
- Consistency is key. If you make a comment or say something, make sure to follow through. Casual strings of comments usually confuse and frustrate the autistic kids. If you are not ready to follow through, do not say.
- Use few words and speak clearly and slowly. Wait for a response. And keep an exaggerated expression to show you are waiting. And always wait for a response.
- Kids stay with you as long as they think they are competent in what they are doing, and they are having fun. Once you put difficult demands, they may walk away or start expressing behaviors to shut down.
- Only one person should  interact with him at a time. If there is more than one person he might find it hard to tune in.
- When starting to communicate something to him, make sure you have his attention first and then start. Do not start communicating when he is not attending.
- If he needs frequent breaks, try to anticipate and help him take the breaks. If he gets over-stimulated it could become harder to regulate.
- If he has certain fixations or rigidities, try to anticipate and give him the words to ask for or express himself. If they are very strong, they could be used as rewards. These could be the cause of tantrums, so it might be worth anticipating and dealing with them.
- Do not say "No!" and launch into a complicated explanation of cleanliness/discipline/manners etc. He probably does not understand what you are saying and is getting overloaded by your words. If he does something you do not like, next time around, anticipate and avoid or redirect him before it happens, or prompt or help him appropriately.

If you are trying to teach or engage the child in some activity like art, piano, craft projects etc, it may be better to learn to interact with the child in an unstructured setting (as above) first, before plunging into the activity. This helps build some relationship with the child based on trust and confidence before diving into a more challenging situation. In every case it is useful to start at the level where the child is competent, regardless of age, and then slowly inch upwards with challenges. Although autistic kids appear to lack motivation, when they feel competent, they do feel motivated to continue an activity. Like any child.

These guidelines should help one spend quality time with a person with autism, which should be an enriching experience for both the child, and the care-giver. This is a parent's dream: to know that his or her autistic child is spending quality time with someone else.