Tuesday, July 29, 2008





I think the major difference between the more traditional medical point of view and those of us who employ biomedical treatments for children with autism is hope, coupled with our acceptance of the belief that we do not know if a child can be helped until we learn more about that particular child.

There are clues in every developmental and family history that guide the most important decision for your child, and that is, “Where do we start?” Once we know where to start, the process is one of growth and learning. We learn what the next step is, based on your child’s response to diagnostic trials and results of laboratory tests. In the case of regressive autism, because the diagnosis does not usually happen overnight, it is unrealistic to expect that the child you recognized previously will magically reappear as a result of a single intervention. It often takes considerable time and numerous steps to reverse the process that has resulted in the child who is presented to us at the initial appointment.

“Follow those who seek the truth but flee from those who have found it.” This quote from Vaclav Havel was shared with the room full of clinicians at the DAN! Physician’s Intensive Training I attended in April of 2007. I think this quote resonated with me personally for many reasons, not the least of which is my own stubborn resistance to accepting the status quo just because someone tells me to. (If my mother were still living she would readily attest to this aspect of my personality, which has been part of my makeup since early childhood.)

With regard to the diagnosis of autism, what this statement means to me is that if an “expert” tells you there is nothing that can be done for your child, before anything is even tried, you need to question where the “expert” came up with this information. In my opinion and experience, just because something has always been accepted as true does not necessarily mean it is true. Certain previously accepted “truths” come to mind, including those who “knew” the world was flat.

Within the world of medicine, for most of the 20th century it was “known” that ulcers were caused by stress and a hectic executive lifestyle. The medical mantra was, “No acid, No Ulcer.” In 1982, Australian gastroenterologist Barry Marshall, M.D., and pathologist Robin Warren, M.D., refuted the accepted “truth” when they showed that gastritis and ulcers were the result of a bacterial infection (Helicobacter pylori). The idea that a bacterial infection could be responsible for ulcers was heretical!

“Truth” changes very slowly; in the case of ulcers, it took 13 years before antibiotic treatment was accepted by the medical community as standard treatment for H. Pylori induced ulcers, something that was finally accomplished in 1995. (Drs. Marshall and Warren were awarded the Nobel Prize in 2005 for their discovery). I wonder how many people suffered needlessly from the pain caused by bacterial infection and inflammation during those 13 years while waiting for mainstream medicine to catch up to the science.

The “truth” about autism, according to mainstream medicine has been “There is no treatment.” I cannot tell you how many times I have seen the pain on the faces of parents as they relate their memories of how they received their child’s diagnosis. I have witnessed the tears falling down parents’ faces as they recall being told in the same breath, “Your child has autism. There is no treatment. I suggest you start thinking about institutionalizing him.” This “truth” is most often spoken by “experts” who have evaluated the child using standardized psychometric tests and questionnaires that were developed to measure intelligence, educational achievement, behavior, social skills, and developmental motor and speech milestones. All of these observations and impressions are important and they tell us a lot about how the child is functioning (or not) in his or her current environment and in response to particular situations. They do NOT, however, tell us ANYTHING about WHY the child is behaving in a particular way, or WHY the child is not growing properly, or WHY the child is not learning on par with his or her same-aged peers.

Dr. Sidney McDonald Baker has developed what he calls “The First Tacks Law,” which states, “If you are sitting on a tack it takes a lot of Risperdal to make it feel good. The appropriate treatment for tack sitting is tack removal.” Translation: If a child is in pain (due to bacterial infection, gastro-intestinal inflammation, or other systemic physical problems caused by exposure to toxins or from food allergies), the child may show a response to medication prescribed to decrease the behaviors, but that medication is not going to address the underlying issues, which will continue to get worse and require more and more medication to suppress the resulting symptomatic behaviors. Going back to the history of ulcers, stress, and H. Pylori bacteria, an analogous statement might be, “If you have an active bacterial infection in your gut, it takes a lot of antacids and pain medication to make it feel good.” It seems to me that a more appropriate way of addressing the pain is to do the laboratory tests that are most likely to determine WHY you have pain in your gut so we can figure out if there IS something that can be done about it. In the case of the ulcer, H. Pylori is the tack and antibiotic treatment is what is necessary to remove it.

Dr. Sid Baker has also developed what he calls “The Second Tacks Law,” which states, “If you are sitting on two tacks, removing one does not produce a fifty-percent improvement. Chronic illness is, or becomes, multi-factorial.”

Let’s talk again about our hypothetical adult with the ulcer. Let’s imagine that prior to developing his ulcer he was a successful entrepreneur and philanthropist whose life’s work was devoted to discovering a cure for cancer (or autism, or figuring out how to solve global warming, etc.) During the 13 years he was waiting for mainstream medicine to change the “standard of care” for his bacteria-related stomach inflammation, he was being “treated” with pain medications and antacids. He became addicted to opiates and developed chronic constipation and memory problems. As his overall health continued to deteriorate he decreased his social contacts and became basically house-bound; a shell of his former self. The antacids, which are high in aluminum, further contributed to his social and cognitive difficulties (he had trouble thinking straight) and his family members have now become concerned that he may have early-onset Alzheimer’s disease. An additional complication is that because his stomach hurts so much of the time, he has severely limited his diet and is only eating a small number of foods, which are poorly absorbed, resulting in significant nutritional deficiencies and a weakened immune system. He feels so bad most of the time that he lashes out verbally (and at times physically) at his wife and children, who have become convinced that he is suffering from not only Alzheimer’s disease, but depression and possibly a host of other psychiatric problems. When he is finally seen by a psychiatrist or psychologist, he is evaluated on the basis of his behavior and current cognitive functioning, and guess what? He may need to be institutionalized. What are the chances that anyone who “treats” this gentleman will understand the role his ulcer played in the process that led to his ultimate regression into the childlike state of dementia and accompanying social withdrawal and problematic behaviors?

The hypothetical story of the adult whose entire life course was changed as a result of his untreated ulcer is presented to give an idea of how we look at the treatment of autism from a biomedical perspective. If the gentleman in the story had received the appropriate treatment for his bacterial infection in the first place, the ensuing “train wreck” may have been avoided. Think about what could have been different for this man and his family. Think about how his life may have made a difference in his community and beyond. Now think about the fact that according to CDC reports (2007), 1 in 150 children in the United States meets the diagnostic criteria for autism. The cost of raising one child with autism is estimated to be in the range of $3 million over the lifespan. Much of the burden is borne by families with additional costs to society in general. Given what’s at stake, I cannot simply accept the “standard medical truth” that there is nothing that can be done. We owe it to our children and to our nation to do our very best to uncover the biological bases for the outward manifestations that lead to the diagnosis of autism. The only way to do that is on an individual basis, learning from one child at a time. Each child is different and there is no one-size-fits-all treatment for “Autism.” When we think about where to start, we have to learn as much as possible about the child in question: Your child.

Before I see your child for the first time, I will ask you to answer a LOT of questions. I want to know about the pregnancy. I want to know about your previous pregnancies and miscarriages. I want to know your blood type and if you have the Rh-factor. I want to know if you had the flu or took antibiotics during the pregnancy. Did you have dental work done? Did you crave particular foods, or crushed ice? Were you nauseous in the first three months, or did you throw-up every day from conception to delivery? I want to know about your family, particularly with regard to family medical history and previous history of exposures to environmental toxins. Did you grow up on a farm? Did your father own a gas station? Did you have recurrent bouts of strep or bronchitis as a child? Is there a high prevalence of thyroid disease, bipolar disorder, anxiety, or diabetes in your family? All of these questions are my way of fishing for clues about where to start when looking for the underlying issues that may need to be addressed with YOUR PARTICULAR CHILD.

I will ask you to tell me about your child – not just his or her current behavior and functioning, but EVERYTHING you can tell me about your child. I want to know if your child had reactions to vaccinations, and if so, what kind of reactions and to which vaccines. (NOTE: thimerosal (ethyl-mercury) is not the only issue with vaccines, and vaccines are not the only issue in autism. The information about vaccinations is important as ONE component of a VERY thorough investigation of your child’s lifetime experiences and medical history.)

I want to know if you notice behavior changes or if your child tends to get sick at certain times of the year. I will ask you to tell me about your child’s diet and what foods he or she tends to crave. Did he or she have problems with milk as an infant? Was soy formula used? Did he or she have trouble with constipation and/or diarrhea? Are those problems ongoing? I’ll also ask about things that you may think are totally unrelated – things like your child’s fingernails, number of cowlicks, and if he or she has little white bumps on the upper arms and legs. Again, these are all clues about where to look for further information through targeted laboratory tests for nutritional deficiencies and imbalances, which are often an essential component of biomedical treatment for Autism, Asperger’s Syndrome, ADHD, and Pervasive Developmental Delay (PDD).
With regard to the environment, I will ask where you live now and where you lived prior to the conception of the child. The age and composition of your home is important information as certain types of homes are more likely to be sources of toxin exposure than others. For example, a child who lives in an older home may need to be checked for lead exposure and a child who lives in a home with a basement that floods may be exposed to toxins from mold. Children who spend a lot of time in wooded areas may need to be checked for Lyme Disease or other tick-borne diseases. Other sensitivities to environmental toxins include exposures from parental occupations (uniforms being washed with children’s clothing, residue tracked in onto carpets, etc.), or geographic proximity to certain businesses and industrial sources of pollution (power plants, plastics, and by-products from manufacturing).

As you can probably tell, I like to be thorough. My greatest concern is not whether you will tire of answering questions; it’s whether I will miss something important because I failed to ask.

It may seem that there are so many possible factors involved here that we will never be able to determine a particular treatment for your child. Remember, the most important first question is, “Where do we start?”

While the overall number of possible factors to consider is vast, there are several issues that tend to be common among children with autism, regardless of the particular triggers involved. Among these commonalities, Gut Dysfunction (gastrointestinal problems or problems related to eating and pooping) are probably the most significant. The great majority of children diagnosed with an Autism Spectrum Disorder have significant histories of diarrhea, constipation, or other “poop-related” anomalies such as grainy stools, undigested food in stools, extremely stinky stools, floaters, or a combination of some or all of the above.

Another common finding in the histories of children with ASDs is previous administration of multiple rounds of antibiotics (and steroids), which are prescribed to treat their frequent bacterial infections (ears, strep, bronchitis, tonsillitis, pneumonia, etc.). In children with a history of antibiotic treatment we frequently find clues suggesting we should check for Yeast Overgrowth (candidiasis) that may need to be addressed with antifungal medications. Some indications that yeast may be an issue include: frequent rashes, peeling feet, ridged, discolored nails, inflamed cheeks, red ring around the anus, and history of thrush, ringworm, and cradle cap.

Children with Autism Spectrum Disorders frequently exhibit physical symptoms indicating Immune System Dysregulation, including eczema, allergic rhinitis, asthma, warts, viral skin infections, herpes, chicken pox, (and as noted previously) strep, bronchitis, tonsillitis, and recurrent ear infections. However, the opposite may also be true, where the child with autism seems to “never get sick.” Researchers are finding that in some cases, the child does not respond to viral or bacterial invaders appropriately because of underlying immune system dysfunction. Parental response to questions about the child’s health and medical history provides us with clues as to which laboratory tests may provide further information about what’s going on inside the child’s body.

In addition to common findings in the child’s medical history, there are a number of common Nutritional Deficiencies that are often present in children with ASDs. Among the most common are deficiencies in zinc, magnesium, essential fatty acids, and B-vitamins. It is important to note that when you think about treating a child (or adult) with chronic medical conditions, you need to be careful about vitamin therapy. This is why we use specific laboratory tests to gather the hard data before recommending high doses of a handful of supplements. Each vitamin, nutrient, mineral, amino acid, enzyme, and co-factor has a particular set of purposes it serves within the body and they are all inter-related. If one is not careful with supplementation, it is easy to induce a deficiency where one may not have previously existed. Given the complexity of issues involved in these children, it is my opinion that supplementation should be based on clinical impressions and in many cases, based on the results of laboratory analysis of the individual child. This is one example of the rationale behind the statement that There is no single Biomedical or DAN! Protocol for the treatment of autism (or any other neurodevelopmental disorder). The treatment is guided by the child and the information the practitioner learns from the child, the parents, and the data from labs.

The kinds of Laboratory Tests we order will depend on the information gathered from investigation into the child’s history and from the family history. That said, there are some labs that are almost always warranted, and these include urinalysis, CBC, liver and kidney function tests, tests to measure thyroid function, and assessment of minerals (iron, zinc, copper, and magnesium). We will also often want to check levels of B-12 and Vitamin A (retinol) and to assess viral titers and look for markers of autoimmunity and inflammation.

Some of the most common findings from laboratory analysis include mineral imbalances (high copper, low zinc, magnesium, calcium, and iron), deficiencies of Vitamins A and B-12, and increased markers for inflammation.

In addition to the more traditional labs, we will frequently order laboratory tests that are less commonly employed by “mainstream medicine” but which are very helpful in determining what’s going on inside the body, from a cellular perspective. These “Functional Medicine” tests include Urine Metabolic Analysis/Organic Acids, Comprehensive Digestive Stool Analysis, IgG Food Antibodies including antigliadin antibodies, Neopterin (Urine Immune Marker), and Porphyrin (Urine physiologic burden of metals).

Additional laboratory analysis very often includes tests to evaluate for Heavy Metal Exposure (urine, hair, & fecal tests), elemental nutrient analysis, plasma amino acids and fatty acids, and genetic testing.

With all of this information, the next important question involves Treatment and “Where do we begin?” The basis of the treatment plan is the foundation. In building the foundation we talk about “The Three R’s”Remove, Replenish, & Repair.

Remove what?
Think back to Dr. Baker’s “First Tacks Law,” which can be restated with the following question, “Is there something within this child or to which this child is being exposed, that if removed, would result in improvement in functioning?”

When you have a child with chronic illness and ongoing environmental exposure to multiple toxins from air, water, preservatives, dyes, and other sources, it is important to get rid of as many sources of exposure as possible. I ask parents to consider, “What is it that you have control of?”

Dietary Changes are often one of the most important first steps to improving a child’s overall physical status. We begin by “cleaning up the diet” – removing sugars, junk foods, preservatives and dyes. By the way, there is no such thing as “junk food” – it’s either junk or it’s food. When I talk to parents about cleaning up the diet, I ask them to remember a couple of basic things. First, when you go to the grocery store, stick to the outer aisles. Stay away from things in cans and boxes. Second, read labels: The fewer ingredients something has, the easier it is for the body to break down and utilize (generally). Third, if you can’t pronounce it, don’t put it in your body (or in your child’s body).

While we are removing things, we want to think about environmental exposures and ongoing sources of toxic exposure. If you are investing all this time, money, effort, and emotional resources, you want to simultaneously eliminate toxins from the environment wherever possible. This might mean installing water and air filters, or it might mean tearing up carpet and ripping out moldy building materials in the basement. Again, the steps you take will be based on your own situation and information about your child.

In addition to these measures we often must remove specific foods from the child’s diet, in order to address food allergies, and in many cases to help promote healing of the gastrointestinal tract (regardless of allergy status). That does not always mean that the child has to be on such a strict diet forever! However, there are particular proteins that tend to be most problematic for children on the spectrum and these will need to be avoided, at least during the initial phase of treatment.

The second of the Three R’s is “Replenish.” This issue can be assessed by asking the question, “Is there something this child is missing, that if provided, would result in an improvement in function?” The answer to this question often comes from the results of laboratory testing. The most frequent recommendations involve supplementation with probiotics (to replace the “good” bacteria in the GI tract), digestive enzymes (to help break down certain foods and assist in supplying essential nutrients), supplemental nutrients (vitamins and minerals) and essential fatty acids.

The last of the Three R’s is “Repair.” This aspect of treatment is also based largely on the results of laboratory testing. Depending on the data gathered for a particular child, the reparation process may involve the administration of antimicrobials, antifungals, antivirals, antibacterials, Immunotherapy, and detoxification (naturally or with prescription medications).

As you can probably see, there are many different questions to be addressed in the Biomedical Treatment of Autism Spectrum Disorders and other neurodevelopmental disorders. I hope this information is helpful to you as you determine the appropriate course of action for your individual child. If nothing else, my fervent prayer is that after reading this article, you will at the very least begin to question the wisdom of accepting the standard medical “truth” about Autism. Don’t believe it. Autism IS TREATABLE. Recovery is POSSIBLE and it is happening every day. The most important first step for you is to choose whether or not to find out if it is possible for YOUR CHILD. I hope this article assists you in making that decision.

Marcella Piper-Terry, M.S.

Friday, July 18, 2008

Environmental Toxins and Autism in Indiana

Here we go again. Today is the third day in a row that the Evansville and Southwestern Indiana are are under Ozone and Particulate Matter alerts. Our air is unsafe for sensitive populations including children, senior citizens, those with asthma, and other health conditions.

I just finished responding to an article in today's Courier & Press Newspaper, regarding the surplus in Indiana's budget as a result of Governor Mitch Daniel's fiscal policies. http://tinyurl.com/5l6r4j

Another article in today's paper indicates that Governor Daniels has slated that a considerable amount of money from the surplus will be available to the educational system for their "rainy day fund." http://tinyurl.com/5swvwz

As far as autism is concerned, it's raining.

Governor Daniels, in his push to move Indiana's bank account to the black, has accomplished many things, including pushing for the establishment of more coal-burning power plants and more industry to exploit our natural coal reserves, comparing Indiana to the Middle East and its oil fields.

Unfortunately, the increase in pollution resulting from these actions is likely to not only negate any positive financial gains, but has to potential to impact the entire United States (and beyond) as Indiana's crops (wheat, corn, soy, milk, and eggs) are polluted with environmental toxins as a result of increased mercury, lead, antimony, cadmium, and bismuth from the power-plants.

This is nothing new. What follows is the text of a post from last year, on this same blog:

To Whom it may concern:

I moved to Indiana four years ago from Washington D.C. I have worked for ten years as an educational consultant and advocate and conduct neuropsychological evaluations of adults and children - something I did in D.C. for three years prior to moving here. The children in Indiana are different from the children in D.C. or those I evaluated in Mississippi and Alabama years ago. When there are differences among peer-groups from one geographic location to another, we need to look at environmental influences as a contributing factor.

I was born in California. I have lived in Los Angeles, San Francisco, Atlanta, and Washington D.C. I looked forward to moving to Indiana, especially after living through 9/11 and the Sniper incidents. I expected the midwest to be clean and quiet. It is quiet, but it is not clean. The air here is the worst I have ever seen at the surface level (the air be breathe). The incidence of asthma, emphysema, allergies, and cancer is staggering. During the first several months following my relocation, I worked as a school psychologist for the EVSC - Evansville-Vanderburgh School Corporation - doing evaluations of children with developmental disabilities. I was heart-sick at the number and severity of problems in the children here. These are the sickest children I have ever seen.

With the recent increase in suicides, everyone is scratching their heads and asking themselves, "How can this be happening?" "What's going on in the mental and emotional lives of these people?"This is not a "mental health" problem, it is a HEALTH problem! What is the common factor? We all breathe the same poisoned air.

Indiana's state government entices big business to locate here so the economy can "boom" and people will have more money in their pockets when they die. The counties of southwestern Indiana (Vanderburgh, Warrick, Spencer, Pike, and Posey) are targets for big business and big polluters. In 2004, Alcoa and Sigeco (both in counties neighboring Vanderburgh) were listed in the top five nation-wide for the amount of toxins (sulfur-dioxide, nitrogen-dioxide, lead, mercury, tin, aluminum, cadmium, and arsenic, etc.) spewed into the air. Things have not changed for the better since 2004.

I recently spent the day visiting the EPA website and looking at the data from the latest Toxic Release Information (TRI, 2005). Looking at the information for Warrick County (Alcoa, Sigeco, and VIGO Coal), one can see that the amount of toxins going into our air is rising, not declining. Of particular concern are levels of barium, lead, manganese, mercury, and vanadium.

The following information is from: EPA TRI Explorer Report (COFA)

Releases: Facility Report

BARIUM COMPOUNDS 374,487 (pounds)

BARIUM COMPOUNDS 241,245 (pounds)

BARIUM COMPOUNDS 329,005 (pounds)

There are many other toxins of concern, including high levels of copper, nickel, bismuth, and cadmium. However, for the question regarding the increase in suicides, I believe these are especially relevant. I have provided information regarding the physiological effects of these compounds, as well as symptoms of toxicity.

The following information is taken from the Toxic and Nutrient Elements Chart (Genova Diagnostics):

Barium 944,737 pounds released into air, water, soil, by Alcoa, Sigeco, & Vigo Coal in 2005: Displaces potassium and increases stress hormone (catecholamines). High levels may trigger ventricular fibrillation, broncho-constriction, and brain swelling.

Symptoms of toxicity: Difficulties in breathing, increased blood pressure, changes in heart rhythm, stomach irritation, brain swelling, muscle tingling/weakness. May damage heart, liver, kidneys and spleen.

Lead 195,665 pounds released into air, water, ground by Alcoa, Sigeco, & Vigo in 2005: Lead binds to hemoglobin, deposits in bone, aorta, kidney tubules, brain, adrenal, thyroid, liver. Inhibits heme synthesis, may depress mitochondrial respiratory chain. ATP-ases also affected.

Symptoms of toxicity: Microcytic anemia, glycosuria, cognitive dysfunction, anorexia, metallic taste, insomnia, reticulocytosis. Target organs include the brain, bone, blood, kidneys, and thyroid gland.

Mercury 1072 pounds released into air, water, soil by Alcoa, Sigeco, & Vigo in 2005: The organic form is readily absorbed in the gastrointestinal tract (90-100%); lesser but still significant amounts of inorganic mercury are absorbed in the gastrointestinal tract (7-15%). Organic mercury has a half-life of 2 months & binds to enzymes, proteins, and glutathione. MAO, catalase, P-450, and mitochondrial functions are affected. Accumulates also in the liver and kidneys.

Symptoms of toxicity: Headache, fine tremor, increased salivation, excitability, hypertension, skin rash, poor mental concentration, metallic taste. Target organs are the brain and kidneys.

Manganese 484,943 pounds released into air, water, soil by Alcoa, Sigeco, & Vigo Coal in 2005: Key in mitochondrial superoxide dismutase. cAMP and intracellular calcium levels are modified with manganese. Deficiency results in abnormal arginase and Krebs cycle conversion of pyruvate to oxaloacetate. Also crucial for bone and connective tissue.

Symptoms of toxicity: (Rare), by inhalation or mining activities. Poor bone/connective tissue growth. Impaired glucose tolerance and lipid metabolism, skin dryness, hair changes, allergies, behavioral problems.

Vanadium 1,067,259 pounds released into air, water, & soil by Alcoa, Sigeco, & Vigo Coal in 2005: Quite active in physiologic systems, with three main types of actions. Competes with phosphate and other metals for binding sites on proteins. Shows insulin-like effects and increases cAMP formation thus accounting for its enhancement of cellular phosphorylation. Studies show high levels associated with bipolar disorder in some cases.

Symptoms of toxicity: Toxicity at high levels is reported and can occur via inhaled vapors as products of combustion. Symptoms can include; arthritis, aching bones, jaw, teeth, tonsils, ears, weakened immune system, chronic colds, gastrointestinal problems, trabecular bone loss, green tongue coloration.

Obviously there are multiple factors involved in the breakdown of our health system (mental and physical). The shortage of inpatient psychiatric beds has received a lot of press recently. I agree, there is a pressing need for more psychiatrists and more facilities, both inpatient and outpatient. However, unless we start looking at the causes of the increase in mental and physical illness, we are likely to find ourselves in an endless cycle of adding more facilities and more beds with the outcome being the same: It will never be enough.