Suicide and Heavy Metals in Vanderburgh County, Who's Responsible for the Death of DeTwain Barnett?

Last night I attended a talk at USI given by Vanderburgh County Coroner, Annie Groves. Coroner Groves has had the unenviable job over the last five years of trying to figure out why Vanderburgh County has one of the highest rates of suicide in the United States.

I have emailed Annie Groves a few times in the last couple of years, asking her to please consider testing for heavy metals in the bodies of victims of suicide. I have not heard anything in response, but I do not know for sure if she has ever received my emails. Last night I had an opportunity to speak with her face-to-face, and to express to her my concerns about the heavy metals in the environment here, and the possible connection with our high rate of suicide.

The suicides in Vanderburgh County really hit home for me a few years ago when DeTwain Barnett (age 10) hung himself. At that time, DeTwain was the youngest victim of suicide Vanderburgh County had seen. At last night's presentation, Coroner Groves informed us that 10 year-old DeTwain no longer holds that record. The youngest child to have committed suicide in Vanderburgh County is now seven - 7 Years Old.

I was outraged when DeTwain died. I am outraged now.

I am repeating my original post, written after DeTwain's death. I am doing this because it is so important, and because I hope that if enough people join me in my outrage, something will be done.

ORIGINAL POST FROM MAY 2007:

The following is in regards to the suicide of 10 year-old De-Twain Barnett, who hung himself in his mother’s apartment in Evansville, Indiana on May 12, 2007. If you are unfamiliar with the story of De-Twain, please read the article by accessing the link provided.

Note: It appears the original article published in the Courier and Press Newspaper is no longer accessible. There are a couple of follow-up pieces you may wish to read by clicking here and here

To Whom It May Concern:

I am a therapist in Evansville, working with children and adults. I have never worked at Cross Pointe, Mulberry Center, or South Western Indiana Mental Health Center. I share many of the concerns others have voiced in the online forum in response to the death of De-Twain. From the descriptions provided by those who knew him best, he sounds like an intelligent, spontaneous, creative boy who wanted to do well but had trouble complying with expectations of teachers in the classroom. The article in the Courier & Press indicated that De-Twain was frequently in trouble at school. His mother recalled he was beginning to feel that nobody liked him. After reading some of the comments written by his young friends as well as adults who knew him outside the classroom, it appears to me (as a strictly outside observer) that De-Twain’s "behavioral problems" may have been due to a number of separate issues, including depression, anxiety, post-traumatic stress disorder, learning disabilities, auditory or visual processing disorders, fine-motor problems, food allergies, or the result of his body’s response to environmental toxins. In short, there are many things we, the general public, do not know about this child. Regarding the question of whom to blame, I believe we all need to take a few deep breaths, examine our own priorities and ask ourselves if we could have done anything to prevent this from happening.

What DO we know about De-Twain? We know that he had a great smile. We know his mother believed he was smart, even though his report cards did not reflect his intelligence. We have been told that he was funny, could be silly, and loved to draw. His mother talked about how he would check out DVDs from the library and study the cartoons, honing his own artistic skills. In my experience, when a child is intelligent but unable to demonstrate success in reading, math, or writing, he or she is often quite talented musically or artistically - the intelligence finds a way to come out. Unfortunately, we have focused so heavily on test scores and "academic achievement," with budget cuts in our public schools reflecting our collective disdain for the importance of the arts in education. As a result, our creative children (who are often highly intelligent and our most sensitive & intuitive) frequently are left without an outlet for their gifts or an avenue of expression for their pain. When a child is bright and wants to succeed, but struggles due to unaddressed health problems or learning disabilities, he or she may be especially vulnerable to depression, social isolation, and suicidal ideation. These are the children who need art and music the most! If we are so focused on competition that we devalue the child who is not a “Straight A” student, then we are at least partly responsible for the ones we lose.

In the article about DeTwain’s death, his mother revealed that her son really struggled in school, to the point where she was hearing from his teachers on an almost daily basis. When a child exhibits such a high level of difficulty, something serious is going on. Children who exhibit behavior problems are not “bad children.” They are children who need help. I encourage anyone who cares about our children to learn about the many issues that can affect behavior, attention, and the ability to learn in the classroom environment. A child with allergies or asthma is likely to have increased behavior issues in spring and fall when environmental allergens and air-borne toxins increase. If a child is allergic or sensitive to casein and gluten (dairy products and grains), he or she will OFTEN exhibit behaviors that are indistinguishable from ADHD and can even look psychotic. Anyone who doubts the ability of milk to make you crazy is encouraged to rent the DVD of The Aviator - the story of Howard Hughes. The more milk he drank, the crazier he became. In addition to milk, parents should pay attention to the amount of ice cream and milkshakes their behaviorally volatile children are eating and drinking.

Stomach problems (diarrhea, constipation, acid reflux) affect school performance. Children who have had multiple ear infections, upper respiratory infections, or strep throat are especially likely to have trouble in school as a result of problems with their digestive systems. Many of our kids have had so many antibiotics that their intestinal tracts are shot from yeast overgrowth. They are constipated, gassy, have foul-smelling breath, and skin problems. They crave sugar and carbohydrates. When you have a constipated child and a gut full of yeast and sugar, that's not a child, it's a STILL! Sugar, yeast, and fermentation equals alcohol. No wonder our kids can't pay attention in class and act like they're drunk - they are! Parents of children who struggle MUST do their own research and educate themselves. Sadly, if you ask your physician about food allergies or yeast problems, you may well be told there is nothing to those rumors. This is a point where parents have a responsibility to pursue the issue further, and professionals have a responsibility to admit they may not have all the answers.

As parents, we all need to examine what our children are eating – at home and at school. Improving a child’s diet can go a long way toward improving his or her behavior and functioning. Simple steps like cutting out artificial dyes and preservatives can make a big difference in some children. Give filtered water, fresh fruits and vegetables. Do a little research on the connection between intake of fried foods in early life and breast cancer later on. If we as parents abdicate our responsibility for feeding and fueling our children because it's easier to "drive through," then we must accept part of the responsibility for their health problems, now and in the future.

Finally, we have to face the facts that in this area, we are all being poisoned by the toxins in the air. Alcoa and Sigeco are both among the top 10 polluters in the entire nation when it comes to the toxins they put into the air, including sulfur-dioxide, nitrogen-dioxide, lead, mercury, aluminum, cadmium, and arsenic. These poisons don't just cause cancer - they destroy our children's central nervous systems and contribute to increases in learning disabilities, Autism, Asperger's Syndrome, and bipolar disorder. Alcoa and Sigeco are not the only culprits. If you want to learn more about what's in our air, you can do the research yourself on the EPA website. The question is, how many people are willing to risk the monetary losses associated with doing what's right for our children and our environment? If we are not willing to give up a little in the wallet, then we must share in the blame for what is happening to our children (and to ourselves).
(Please read the accompanying article, “What’s Going On in Indiana” for more information about toxins that may be associated with the rise in suicides.)

When we lose a child like this, it is a sad thing for all of us because we as a society will never benefit from DeTwain's gifts. When I counsel clients who have lost loved ones, one thing we work toward is trying to find some meaning out of the loss. My hope is that DeTwain's death will not be completely in vain, but will serve as a wake-up call to those of us who remain. We are all responsible for OUR children. Please, let's start working together to heal their world and make it one from which they are not so desperate to escape.

Marci

IT'S MINDBODY, NOT MIND-BODY

Last week I was interviewed by Steve Higgs of The Bloomington Alternative. We met for about three hours and talked about Biomedical Interventions for Autism, and about environmental toxins. Mr. Higgs is especially interested in the role of toxins here in the state of Indiana, and how our unique environment impacts the children in this state (and those beyond our borders).

Last night I couldn't sleep. So I got up and fired off a few emails to Mr. Higgs, including copies of some PowerPoint Presentations I gave in April of this year. Among them was a presentation I put together in which I researched some of the specific toxins we have in abundance, here in Southwestern Indiana.

This morning I received an email from Mr. Higgs, with a few questions. Among them was the question of what to call those who seek out my services. Patients? Clients? and how to refer to their diagnoses: ASD?

The result of that email turned into a lengthy response, which I think makes a good blog post, so here it is:

As far as what to call those who seek my services...clients is more appropriate, I think. I wish I had given you one of my business cards. The tag I use on them (and my "letterhead") is "Family Coaching for Fragile Children." I work with kids (and adults) who have received any number of diagnoses, from chronic fatigue and fibromyalgia in adults to autism, bipolar disorder, ADHD, and Learning Disabilities in kids.

I was thinking about this a lot last night/this morning, and feeling so discouraged because there is SO MUCH to do and often feels like only me to do it.

I had another parent email and call yesterday, with questions about how to get her physician to order the labs we need. This is a 17 year-old with chronic GI pain, upper respiratory infections, strep, bronchitis, etc. (immune system dysfunction) since infancy. At 17, he now has pre-cancerous lesions in his gastroinstinal tract and the parents have been told that things will probably not ever get better for him; he'll just have to learn to live with the pain. The primary care physician has seen this kid probably 100 times in the last 12-13 years and has made numerous referrals to other specialists (GI docs, allergists, therapists, etc.). He has also collected many thousands of dollars from the family and their insurance company over that time. I saw this kid and spent more than 50 hours going over his medical records, abstracting them, putting everything in chronological order, researching and documenting everything that had happened to him since conception. I also spent about 5 hours with the family (and drove almost four hours round-trip to do so). When I wrote up the report, I did it in such a way that everything flowed and made sense. It was this kid's life story. The reason I did this was to be sure to make the case for the doctor, so he would understand the rationale behind what I was asking him to do. He had no problem with it. Said he would order the tests. However, he will not take the time to pick up the phone and call (or have his staff call) the labs to request the test kits. I even provided interactive links and telephone numbers at the end of the report, to make things as simple as possible. All it would take is five minutes and unfortunately, that's something he or his staff has to do. I can't order the kits and neither can the parents. (There are some labs - Great Plains, for example, that make this process much easier by allowing parents to order kits and take them to the doctor for his/her signature. Others are not as user-friendly, but the information provided by the labs is worth the effort, in my opinion.)

This is the most frustrating thing for me. Even when they finally begin to see why this makes sense, it's like pulling teeth to get physicians to change the way they do things. I don't think I explained this blatantly in my powerpoint about Biomedical Interventions, but this is why I talked about the two doctors (Marshall & Warren) who discovered H. pylori bacteria and its role in ulcers. They made the discovery in 1982 and it wasn't until 1995 that "Standard Medical Practice" finally changed from the mantra of "stress causes ulcers" to recognizing that if a bacterial infection was the cause, then it makes sense to treat with an antibiotic. As a result of the extremely slow awakening of the medical community, hundreds of thousands (millions?) of people suffered with ulcers that could have easily been treated. It took 13 years for them to wake up. How many children will we lose in 13 years? (This may be a good time to read the first post on my blog: AUTISM IS TREATABLE)

When we talk about biomedical interventions for autism and other "spectrum disorders" like ADHD, Learning Disabilities, Asperger's, PDD-NOS, bipolar disorder, etc., we are talking about a "whole-body" affliction. That's the major problem with why the medical community is not "on-board." This is completely the opposite of what medical schools have taught for the last few generations, at least. The medical system has moved almost exclusively to specialty care, where you see one doctor for your feet, another doctor for your gut, another doctor for your ears, another doctor for the fungus under your nails, and another doctor for your "mental" or "cognitive" difficulties. Each one sees only a part of the patient, rather than looking at the entire person. The biomedical approach to autism (and other whole-body afflictions) is a systems approach that emphasizes the fact that there is no such thing as mind-body. It's mindbody. All one child; all one word. There is nothing physicially separating the mind from the rest of the body and we need to stop treating our children as if they have been decapitated. What happens in the body affects the brain and vice-versa. This is another reason why the impact of environmental toxins is so important to consider. Lead, mercury, and other heavy metals negatively impact the entire body by damaging enzymatic processes. They cause disruption everywhere. Until we start assessing and addressing the damage caused by environmental toxins, everything else we do is just bandaids.

Marci

Preparing Your Body for Pregnancy; Preparing Your Child for Vaccination

If you have read much about biomedical interventions and recovery from autism, you may be familiar with the analogy of being hit by a bus. As Stan Kurtz writes, “You cannot be cured of being hit by a bus, but you can recover from it. You might even be able to recover enough that you do not need to park in special parking spaces when you go shopping. If you are fortunate enough you might recover well enough that you gain back so much of your functioning such that no one would know you were ever in an accident.” This is a great analogy, especially for those children who have already received a diagnosis of autism. In many cases, while we may not be able to “cure” the autism, if we address the underlying conditions through appropriated testing and treatment, we may be able to recover the child to the point where he or she no longer meets the diagnostic criteria for autism. In many cases, no one would ever guess the child had been “hit by the bus” in the first place.

But wait…

What if we could prevent your child from being hit by the bus in the first place?

Let’s think about pregnancy. When a fetus is growing in the womb, it is incubating. We have been told for some time now that pregnant women should not smoke and should not drink alcohol, because these behaviors are known to be damaging to a developing fetus. The peer-reviewed medical literature is bursting at the seams with paper after paper, documenting the research findings about the teratologic effects of tobacco and alcohol.

Teratologic: the scientific study of visible conditions caused by the interruption or alteration of normal development

Marci’s note: Teratological effects may well include effects that are not “visible” and which may not become known for a long time after the exposure that caused the damage. Examples:

• Babies who were fed soy formula. Soy is a source of estrogen. When fed as the sole source of nutrition, the amount of estrogen taken in can disrupt the balance between hormones, and may contribute to the early onset of puberty in girls, and delayed onset of puberty in boys.
  
• Terbutaline administration. Terbutaline is a medication given to women to stop preterm labor. It has been linked to later onset of learning disabilities and social deficits in children whose mothers took the drug during pregnancy.
  

By now, everyone has heard that there is an epidemic of autism in this country. There are some people who still want to deny this fact, but the evidence is overwhelming, and it is real. It’s not just because of more inclusive diagnostic criteria. It’s also not purely genetic. There is no such thing as a genetic epidemic. So what’s going on? And why can’t the researchers figure out the cause of autism?

The clue is in the previous question. As long as researchers are looking for “the cause” of autism, they are not going to find it. Why? Because multiple factors working together synergistically is the source of the epidemic. There is no single “smoking gun.” If you are not familiar with the concept of synergism, you need to understand this key concept. Here is the definition:

Synergism: the phenomenon in which the combined action of two things such as drugs or muscles is greater than the sum of their effects individually. In the case of drugs, the result may be dangerous to the patient.

Marci’s note: in the case of toxins (heavy metals, toxic chemicals, pesticides, organophosphates, food additives), the combined action of two (or more) things is greater than the sum of their effects individually. The result may be dangerous to the patient. Alternatively, the synergistic effect of a genetic predisposition and an environmental exposure (to metals, pesticides, medications, etc…) will be more damaging than the effects of either situation (genetic or environmental) alone. The result may be dangerous to the patient. (Remember that in this case, the patient is the infant in the incubator.)

Synergy is an extremely important concept when it comes to autism and other neurodevelopmental disabilities. The concept of synergy is precisely why families who have sought relief through “The Vaccine Court” have not been successful in establishing that their children’s regressive autism was caused by the combination of thimerosal (mercury) and the MMR vaccine. (Note: the basic premise of the argument is that the child’s immune system is compromised by mercury (a heavy metal, which damages multiple systems in the body, including the enzymatic processes, and detoxification pathways), predisposing the child to be more vulnerable to the effects of the MMR vaccine (a vaccination which simultaneously injects three separate viruses into the blood stream, bypassing the body’s primary immune defense mechanisms (gastrointestinal and respiratory), ultimately resulting in a situation which overwhelms the body’s defenses and leads to chronic illness (fever, vomiting, diarrhea, constipation, ear infections, respiratory infections, chronic tonsillitis, strep, bronchitis, allergies, asthma, & seizures), which later results in the behavioral and cognitive symptoms that lead to an “autism spectrum disorder” diagnosis.

Please remember that the fever, diarrhea, constipation, vomiting, seizures, etc… tend to occur prior to the behaviors that lead, ultimately, to the “autism” diagnosis. This is an important piece of information, especially since most parents I have spoken with report that the “experts” who diagnosed their children with “autism” often state (with considerable authority) that the physical symptoms (diarrhea, constipation, vomiting) the parents are reporting are “just part of autism.” The physical symptoms are therefore ignored. This is PRECISELY why professionals who do not look further than the obvious behavioral and cognitive presentations, can and do state (with considerable authority), that “Autism is a lifelong condition and there is nothing you can do about it.” From where I sit, it looks like the authorities have it backwards. The physical symptoms happen first and the behavioral and cognitive symptoms happen as a result of the physical symptoms. Therefore, the lack of eye-contact, reduced awareness of the environment, inattention, aggression, and poor social skills are “just part of the gastro-intestinal disease” and if we do something to fix the GI problems, the symptoms associated with the child’s “autism” diagnosis will improve. If this sounds like voodoo science to you, let me phrase it differently.

Consider, for a moment, symptoms that you yourself might have had. Have you ever had a migraine? Have you ever had a “stomach virus” with nausea, pain in your gut, diarrhea, constipation, achy joints, headache and ‘brain-fog?’ If you have, please try to recall at this moment what it felt like. Now, imagine you are in a room full of four year-olds – a preschool environment. Do you feel “social?” Can you concentrate? Are you likely to learn and “achieve on par with your potential?”

If you only consider “autism” – which is a behavioral and cognitive-based diagnosis – and do not look further, the professionals who tell you with so much authority, “There is nothing you can do” are probably correct. If you don’t look beyond the behaviors and the label, it is likely that you are facing a lifelong diagnosis, for which you will not see significant improvement. In other words, your child will most likely never get married or have children, will probably not be able to live independently, will most likely not be able to support himself or herself, and will require full-time support from you until the day you die – which will probably happen prematurely due to all the stress you will endure in the interim. And your marriage? Statistics indicate that the divorce rate among couples with autistic children is 85%. Is this a good time to talk about the economy and the difficulties of single parents raising a child with autism?

I realize I am being brutal. I apologize for that, but not for the need to be honest. Grab a tissue, have a good cry, and suck it up because this discussion is relevant to your life. It is especially relevant if you are considering having children in the future.

“Current Events” time!

On February 12, 2009, the National Vaccine Injury Compensation Program (Vaccine Court) Special Masters ruled against three families of autistic children, whose histories were chosen as “test cases” in the plaintiffs’ efforts to legally establish causality between thimerosal, MMR, and the children’s regression into autistic symptoms, which happened to occur shortly after receiving the vaccinations.

It was reported that one factor which helped sway the decision against the families is that they claimed their children were “developing normally” prior to the administration of the MMR vaccine. The Masters, upon review of photographs, videos, and medical records of the children in question, concluded that the parents’ claim that their children were “developing normally” was untrue. As I recall, the opinion of the special masters cited things like videos and photographs showing inconsistent eye-contact prior to the MMR administration. This concept of “normal development” hit me like a ton of bricks when I read it.

What does this statement mean, “Developing Normally?”

When I think about this question, the first thing that comes to mind is how shocked I have been and continue to be, when I ask parents the following question, “Did your child have a lot of ear infections during the first four years of life?”

The answer I frequently receive is, “Not a lot. No more than any other children.”
My response: “How many ear infections does your child typically have in a year?”
Typical response: “Three or four.”

What is important about the conversation, as reported above, is that most parents I interview report that their child is having three or four ear infections per year (which are treated with antibiotics) and the parents are also reporting that their child is no different from other children who are “developing normally.”

This is a problem.

Another area where I see a problem involves constipation. My developmental history form specifically asks about constipation and the majority of children I see have had significant problems with the frequency of bowel movements. Several have had to go to the hospital multiple times because their bowels have become impacted. Many parents have told me that they have expressed concerns to their pediatricians or family doctors, regarding their children’s infrequent bowel movements (often once a week or less), only to be told by their trusted physician, “In some children, that’s normal.”

Bowel movements are the body’s way of clearing toxins. (The body also clears toxins through urination and sweating.) Some toxins will ONLY clear the body through bowel movements. If you have toxins building up in the body and the half-life of that toxin is, let’s say 3 days, and the child in question is only having a bowel movement every 7 days, then if that toxin is taken into the body (perhaps through vaccination) and the child does not have a bowel movement for four or five days after taking the toxin it, where do you suppose the toxin goes? It gets stored in the body. Some of it goes into the soft tissues like kidneys and bone marrow. Some of it goes into the brain. Once it’s stored, it’s hard to get it out.

The gist of this is that our children are NOT developing normally if they are having chronic constipation (or diarrhea), or if they are having chronic bacterial and viral infections, upper respiratory infections, bronchitis, tonsillitis, strep, allergies, and asthma. We have an entire generation of children who are more prone to illness than children who are truly “developing normally.” The problem is, we have become so accustomed to this that we now accept this situation as “normal.” This needs to change. (Note: The generation of children who are so prone to infections and gastrointestinal problems coincides with the administration of the Hepatitis B vaccination at birth. For more on this topic, please read the post Vaccines and Autism - Your Child vs. The Greater Good.)

So, going back to the concept of teratology – things that disrupt normal development … In order to prevent more children from being “hit by the bus,” we need to pay closer attention to the things that may disrupt “normal development,” starting before conception even occurs. We need to prepare the incubator. For those children who are already here, we need to assess the status of their overall health and development BEFORE we inject them with multiple viruses simultaneously, and BEFORE we allow anyone to inject them with substances (thimerosal, aluminum, formaldehyde, etc.) that are KNOWN to have teratologic effects. Remember, the first rule of vaccinations is “do not vaccinate a sick child.” The problem is that when we view children with chronic conditions (viruses, bacterial infections, etc.) as “normal,” our perception of what constitutes “a sick child” has been skewed. Those are the children who are being “thrown in front of the bus.” My point: If we identify (accurately) those children who ARE sick, and get them healthy BEFORE administering vaccinations, we are likely to decrease the numbers of children who subsequently regress and end up receiving an autism diagnosis.

Back to the main question at hand – what do you need to do to increase your chances of having a healthy baby – one who stays healthy and does not become part of the estimated 1 in 67 American children with an autism spectrum disorder?

1. Don’t wait until you are pregnant to start preparing your body. Remember, you are the incubator. Imagine for a moment that you have just delivered a baby that was born premature, and had to be placed in the NICU (Neonatal Intensive Care Unit) of the hospital. When your precious infant is taken from your womb and placed in the incubator in the NICU, you expect that the incubator will be a healthy environment for your fragile infant. By healthy, I mean, you expect that the incubator is free from bacteria (strep, staph, clostridia), viruses (Herpes, Measles, Varicella [Chickenpox], Human Papilloma Virus, Epstein-Barr, Cytomegalovirus), yeast (candida albicans and others), and parasites. You also expect that the incubator your infant is placed in will not be contaminated with heavy metals (lead, mercury, antimony, arsenic, cadmium, aluminum [not technically a ‘heavy metal’]), and that the incubator will not be sprayed with pesticides or contaminated with organophosphates. In essence, what you expect, is that your precious baby will be placed in a pristine environment, in which he or she will be able to develop, to his or her full potential.
   

If you expect strangers to care for your baby this way, shouldn’t you do everything you can to care for your future child with the same concern?

This entire thought process should start at least one to two years before you become pregnant.
If you live in the Tri-state (Indiana, Kentucky, Illinois), you should know that you live in the coal-burning power plant capitol of the world. If you have lived here for any length of time, you have been exposed to heavy metals (from coal-burning power plants), pesticides and organophosphates (from farming). If you get annual flu shots and have not specified that you want thimerosal-free flu shots, you have had a yearly dose of mercury injected directly into your bloodstream.

If you live in an area where you are regularly exposed to heavy metals and other environmental toxins, you owe it to your future children to find out what toxins have built up in your system, before you make it an incubator for your future child. You would not want your child to be placed in a hospital incubator contaminated with bacteria, viruses, and toxins (metals, pesticides, organophosphates), so why would you allow your child to spend the most important growing stage in just such an environment. If you do not pursue primary intervention that assesses your own body stores of these toxins, that is exactly what you are doing. The incubator is contaminated.

Clean it up before you trust it with the future of your precious baby.

2. If you are the parent of a young child and you are concerned about whether or not to vaccinate him or her, you need to become informed about your options as a parent. One of those options I would encourage is to have your child evaluated first to determine if there are physical problems that should be addressed, prior to vaccination. This may be especially important if your child has gastrointestinal problems, or recurrent viral and/or bacterial infections.

To learn more about assessment for genetic vulnerability and toxic exposures before you get pregnant, or before vaccinating your child, contact Marcella Piper-Terry, M.S.; Biomedical Consultant; marcellaterry@hotmail.com

Diet and Autism, the GFCF Cult

The photos above show the corn, soybean, and wheat fields located between Marr's Elementary School and the smokestacks belonging to Vectren Energy's Brown Power Station located on the west side of Evansville, Indiana. These photos were taken in July 2008.

Today's post:

This post addresses some questions people have been asking about the Gluten-Free/Casein-Free Diet and why it is so important in recovering kids diagnosed with Autism. By the way, all of this information also applies to ADHD, ADD, Asperger's Syndrome, and other forms of Pervasive Developmental Disabilities Diagnoses.

When Jenny McArthy first came out publicly with her son’s story, she took a huge personal risk, braving all sorts of criticism from mainstream medicine and groups who believe that by improving a child’s state of wellness, we are somehow saying that we do not accept our children’s individuality. While I applaud Ms. McCarthy’s willingness to make herself a target for all kinds of backlash, one concern I have is the extreme emphasis on GFCF (Gluten-Free, Casein-Free), or for that matter SCD (Specific Carbohydrate Diet), LOD (Low Oxylate Diet), etc., as THE DOCTRINE everyone must follow. It's not that simple. If you start removing things because of sensitivities, without also focusing on improving digestion, clearing constipation, and healing the lining of the intestinal tract, eventually you end up with an even more limited list of foods because the child will keep developing new sensitivities.

DAN! has been hesitant (in my opinion) to recommend the use of digestive enzymes, which seems to be because they do not want people to use the enzymes as a "lazy" alternative to cleaning up the diet. Cleaning up the diet is a very important thing to do - by getting rid of artificial dyes, artificial preservatives, white flour and sugar, artificial sweeteners, fermented foods, yeasty foods, and basically eliminating things your child is obviously addicted to (this often means wheat and cow's milk), allergic or highly sensitive to (frequently, soy, corn, & eggs).

Personally, as a resident of the Midwest who drives by multiple corn, soy, and wheat fields, as well as coal-burning power plants on a daily basis, I have strong suspicions that the extremely frequent "food allergies" and "food sensitivities" to these five foods in particular, may have more to do with where they are grown and the environmental toxins, than with the food itself. Our food is being grown in soil that is polluted with heavy metals. The corn being grown in this region is fed to the cows and chickens from which our milk and eggs are derived.

Back to today's question and why Dietary Interventions are so important:

Many children with autism self-limit their diets to the point where the only foods they will accept are wheat and dairy-based. The problem is that with a leaky gut - caused by candida overgrowth - among other things, gluten and dairy are not broken down effectively and they are misidentified by the body as opiates. In combination with the alcohol produced by the yeast, you get a kid who is mixing drugs and alcohol and no wonder they're spaced out! And no wonder they have such high pain tolerance. Opiates are what we give to adults after back surgery!

The GFCF diet works so well because it removes the sources of opiates. This is why you may initially see an increase in negative behavior and hyperactivity when removing wheat and dairy from the diet. They are going through withdrawal - aka "cleansing." This is also why the diet is so difficult to stick to because like all addicts, when the kid is not closely supervised, he or she is going to "drug-seek." Lock your cabinets and put a chain on the freezer door!

Many children, especially those who are further to the right on the continuum between autism and ADHD, will benefit significantly from the addition of digestive enzymes, which help to break down particular offending proteins (in most cases, gluten & casein). Others, who are facing more significant challenges, will need to be completely free of dietary sources of gluten and casein. For some, even a minute amount can be problematic and the negative effects can last for several weeks after a single dietary infraction. The only way to know where a child falls on the continuum is through thorough examination of the developmental history and by gathering objective data through laboratory testing.

Many older children, and especially those who are high-functioning, make the connection between how good they feel when they abstain from problematic foods and take digestive enzymes, versus how bad they feel when they don't. As a result, they are much more likely (at least in my house) to be the ones to say, "Mom, I need an enzyme!" Does that make me lazy? Okay. It also helps to keep me - and my kids - closer to the "sane" area on the continuum.

BALANCE is the key! Not rabid adherence to any particular diet just because that's what worked for someone else's child. In most children I have seen, once yeast is eradicated and constipation and/or diarrhea are under control, you can often re-introduce foods, especially if you are supplementing with enzymes to break them down. My kids have been taking enzymes with every meal and snack for the last few years, along with probiotics, CLO, and full-spectrum vitamin/mineral/amino acid supplements. As a result, they CAN eat cake and ice cream at parties. The only time we really have problems with dietary infractions is if we run out of enzymes! Then there was the time my husband bought a package of those frozen "cherry" slushy things - even enzymes couldn't handle that one. He has learned his lesson about red dye, believe me!

Being a mom (or dad) of a sick kid makes you nuts. Accept it and roll with it. You don't have to necessarily join the GFCF or SCD cult in order to be successful at motherhood (parenthood) - even if your kid happens to have autism. The best dietary advice (in my opinion and experience) is to stick to the outer aisles of the grocery store. Shun anything in a cardboard box. You may as well feed them the box; it has more nutrition and fewer preservatives and neurotoxins. Avoid cans as much as possible. Read labels. The more ingredients something has in it, the less you want it. If you can't pronounce it your body probably can't recognize it and won't know what to do with it. When your body can't figure out what to do with it, valuable energy is wasted trying to get rid of it and it gets lumped in with all the other toxins in the heap.

When you have a child with autism, "Diet" is about controlling that which is possible for us to control. "Perfection" and "Diet" only belong in the same sentence when you're talking about anorexia and bulimia. We're all too obsessive-compulsive already. Where do you think our kids got it from?

If your child does not respond to the more general dietary interventions, then you probably need to consider formal laboratory testing for food allergies (IgG – not IgE) and enlist the help of medical professionals to eliminate problematic foods while ensuring your child receives the proper nutritional supplementation for optimal wellness.

In the meantime, give yourself a break as a parent. Congratulate yourself for being proactive regarding your child’s healthcare! To celebrate, have a piece of fruit - just be sure to peel it if it's not organic.

Marci Terry

IT'S IN THE AIR IN SOUTHWESTERN INDIANA

The emissions of heavy metals and other toxins from coal-burning power plants in Southwestern Indiana have increased exponentially since Mitch Daniels took office as governor. Things are not getting better, they are getting worse, and people are dying as a result.

I'm reposting this because it is so important. Please help me to bring attention to this issue.
God bless you.

Original post:

Today is August 14, 2008. The air today is unhealthy for sensitive individuals to breathe due to high levels of particulate matter. The forecast indicates we will have another PPM alert tomorrow, too. Unlike forecasting the weather, predicting the air quality here is no challenge. If it’s hot enough, don’t go outside if you are “sensitive.” This includes children, the elderly, and anyone who has asthma, allergies, or cardiopulmonary problems.

A major component of our particulate matter is sulfur-dioxide. It has been my belief for the last few years, that the high level of SO2 plays a major part in the incidence of learning disabilities, ADHD, and Autism in the children of the tri-state. In April 2007 I attended my second DAN! (Defeat Autism Now!) conference, which was held in Washington D.C. One of the questions I asked was if anyone is doing research to determine if SO2 is a contributing factor in the increase of autism and other developmental disabilities. Dr. John Pangborn, who is a brilliant man and has contributed SO much in the way of research, especially regarding the role of mercury in autism, responded to my question by stating, "Sulfur-dioxide is a noxious, toxic, poison. You can see it in the air, you can smell it, and you can taste it... If you believe sulfur-dioxide is contributing to your child's problems, my suggestion to you is MOVE!"

I was so taken aback by Dr. Pangborn's response that I spent most of that night writing a letter to him. That letter is the bulk of today's post.

Having had time to reflect on this situation, I must now thank Dr. Pangborn for his candor. The message we must internalize is this:

There is no cavalry coming to save us. We, the citizens of Indiana, have to do this ourselves.

LETTER TO DR. JOHN PANGBORN
FROM: MARCELLA PIPER-TERRY, M.S.
DATE: APRIL 23, 2007

Dear Dr. Pangborn:

My heart sank when you advised me to move. Then I got angry. Then I felt sick to my stomach and the tears came.

I know sulfur-dioxide is part of why there are so many sick children (and adults) in Indiana. My daughter is not the only one. Your statement, “…I suggest you move,” cut me to my soul. It’s the very same thing I have been fighting the urge to do since realizing, three years ago, that if I didn’t, I would be continuing to put my daughter’s health in peril – as well as my own – and that of my grand-daughter/adopted daughter.

My husband spent 24 years in the United States’ Air Force and now works managing the prototype Doppler Radar – which he has worked to build – from the ground-up, in a cornfield in rural Gibson County, Indiana. In November 2005, our community of Evansville lost 23 of our neighbors when a tornado hit at 2:00 a.m. We are still recovering and counting our blessings that thanks to the Doppler Radar, many thousands were able to prepare because we were informed and could take action against the threat. If not for the data provided by the radar, many more lives may well have been lost.

Before our move to Indiana my husband and our family lived here in Washington, D.C. Steve was the “Senior Non-Commissioned Officer In-Charge” of the “Ground Radar Maintenance Shop” at Andrews Air Force Base, and traveled worldwide to maintain the Air Force Radar Systems. I stayed at home, raising our daughter and working 3 days-a- week doing neuropsychological evaluations of children with ADHD, LD, ASD, and PDD.

In 2000, I was preparing to enter the doctoral program in Social/Health Psychology at George Washington University, where I had been offered full funding and a teaching assistantship. My studies and assistantship duties were set to begin in September 2000. In May 2000, I learned that the five month-old daughter of my 18 year-old bipolar/ADHD and (I now know) severely gluten/casein allergic son had been exposed to multiple toxins in utero through her 20 year-old mother’s drug and alcohol abuse. My grand-daughter was in an environment of ongoing and worsening neglect, which I could not ignore. She was floppy, exhibited tremors, screamed suddenly and for no reason, and had very poor eye-contact. Her mother was involved in an abusive relationship and her drug use was ongoing. (My son was also using drugs heavily and had been out of the picture since before the birth.)

When information came to light about the baby’s current situation, I could not sit by. I went to the Prince George’s County Courthouse (sans attorney), filed an ex-parte (had no idea what it was) and somehow was able to obtain emergency custody of my granddaughter. One week later the ex-parte was extended for one year. At that point it dawned on me that I needed a clone because there was no way I would be able to raise this baby and do full-time doctoral psychology load and teach and raise my five year-old.

With my husband’s retirement zooming at us in two years’ time and no job lined up for him, he agreed to embark on this commitment with me (after an initial, “You DID WHAT???!!!!”). I think I forgot to mention that he was TDY (Temporary Duty assignment) to Germany and Italy for 30 days when I got the emergency custody order. Anyway, I promised Steve that if he would do this with me, I would go wherever he needed to go, and do whatever I had to do, but I could not turn my back on Leah. The Ph.D. could wait. She couldn’t. It wasn’t even hard to walk into the psych department at George Washington University and tell Dr. Paul Poppen that I was not going to be working with him after-all. It would have been much more difficult if I had not had Rachel by the hand and Leah in my arms, but I knew without a doubt, that I was doing the right thing and I have never regretted it.

We got permanent custody of Leah in August 2001 after her mother deserted her and moved to Utah with the abusive boyfriend. We haven’t heard from her since and formally adopted Leah in May 2005.

On September 11, 2001 I took Rachel to school at Francis T. Evans Elementary, just outside the the gate and then dropped Leah off at the babysitter’s at 9:00 a.m. I heard about the first plane hitting the World Trade Center when I got back in my car and turned on NPR. When I pulled into the gas station on Andrews’, I heard about the second plane. As I was leaving the base, thinking, “This is NOT good…We’re next…” I saw the military guards with M-16s running toward the gate, beginning to close off the base – as I was driving through – leaving my children and getting onto the beltway to drive to Silver Springs, where I worked. Within minutes, I could see smoke downtown, and my brain just kept playing, over and over, “This is not good…This Is NOT Good…This is NOT GOOD…”

I am thankful to God and all the guardian angels in the cosmos that NPR did not announce, “The Pentagon has been hit” until I had pulled to the curb in front of my office – 45 minutes from Andrews Air Force Base. I don’t know how long I sat – holding my breath – with my hands covering my mouth – trying to keep the first giant sob from coming out. I think it must have been at least 30 minutes before I finally was able to turn off the car and stumble to the door. I don’t remember walking – only falling to my knees as soon as I got inside. Then the shaking started – and the real tears – as it hit me that I didn’t know if Steve was on Base that Tuesday – or if he was at the Pentagon. – My Girls – Leah is on base --- Rachel is at school just outside the gate – and BUSH’s Plane – THE TARGET – is on its way back to Andrews’…

It was four hours before I knew if my husband was alive, and it was 7:30 that night before I could get home because the beltway was gridlocked and people were panicking and running over each other. We were told, “If you’re safe, stay put!”

When I finally got back to the base, it took nearly 3 hours to drive and get through security – every car had to be searched. There were dogs to detect explosives and after that, I drove through what seemed like an endless gauntlet of soldiers lining both sides of the single-lane path, each with his or her M-16 at the shoulder.

Sadly, we got used to the searches and guns every time we took our daughter to school or brought her home – or left the base and returned for other reasons.

Shortly after 9/11, Rachel developed tic behaviors. She was always spacey and “zoned out” but things got a lot worse. Ultimately, she was diagnosed with ADHD and OCD, after ruling out seizures and Central Auditory Processing Disorder at Johns’ Hopkins – I don’t mess around – I insisted Rachel be seen by John Freeman at Johns’ Hopkins Neurology and by Dana Boatman at JHU Cognitive Neurology for Central Auditory Processing testing. Then I took her to Walter Reed where she was evaluated by Stacey Williams, Chief of Behavioral Psychology. Rachel saw Dr. Lowry Shropshire, Head of Developmental Pediatrics at Bethesda – and after he put her on Dexedrine we saw a little improvement in attention – but worsening of tics and emotionality --- and so it goes.

Meanwhile, Leah continues to grow and with daily interventions (e.g., music, reading, pictures, touch, smell, etc…) her Developmental Quotients went from 100 (receptive) and 80 (expressive) at 11 months to 132 (expressive) and 134 (receptive) at 17 months – what can be done with neuronal plasticity!!! Behavior and fears were still issues, but she was (and is) doing great!
In October of 2002, we were preparing for our move to Indiana. I was still working in Silver Springs 3 days/week and was on my way to work on October 3rd – the first day of the Sniper Shootings. For the next 3 weeks I, along with everyone else in this area, lived in a CONSTANT state of Autonomic Nervous System (ANS) Hyper-arousal as we waited to see who was going to be killed next and where it would happen.

My family and I finally left for Indiana on October 25, 2002 – the day after “John Allen Muhammed” and “Lee Boyd Malvo” were arrested. Since moving to Indiana we have had a lot of adjustments, but life has definitely been quieter – in some respects. I have built a practice through networking and word of mouth. I am now attending my second Defeat Autism Now! conference, with plans to further educate and collaborate with physicians and families in our region so we can help our children heal. I live in Evansville and the closest Defeat Autism Now! practitioner that I know of is four hours away.

The incidence of Autism, ADHD, and PDD in our area is staggering – just as it is in Texas, or California, or New Jersey. My child is not the only one. Rachel has definitely gotten worse with each successive assault on her immune system – Trauma, Viral Infections, and Toxic Overload are hurting MY CHILD – and thousands of other children in the mid-west. (Note: At last night’s wonderful dinner and tribute to Bernie Rimland, whom I was fortunate enough to hear speak in Long Beach, the Mid-West Contingent consisted of ONE TABLE. My friend and I – traveling together – were the only two people from Indiana – and neither of us is an M. D.)

There have been MANY times in the last three years when I have told myself – and my husband, “We HAVE TO MOVE away from Indiana! This place is a toxic pit! It’s a cancer cell and the kids here are being poisoned! We are ALL being poisoned!”

My question to you is WHERE SHOULD WE GO?

I spent the first 12 years of my life in Orange, California, where the playground of my elementary school was located on a hill directly adjacent to the 55 freeway – before gasoline was unleaded and before catalytic converters. This was the source of a significant body burden of lead which no doubt contributed to my son’s extreme ADHD and bipolar diagnosis.

In 1972, my parents moved us to Mississippi, where they bought a big white house with pillars, azaleas, a veranda, and a one-acre pecan orchard. The “Big-House” was built in 1875 and my mother absolutely LOVED it. After it was nearly destroyed by fire several years later, my well-meaning but very uninformed sisters and brothers-in-law tried to save my mother some money by doing much of the repairs and renovations themselves. The paint-sanding went on for months, intermittently. None of them wore masks. My mother, who was still living in the house, got sicker and sicker and nobody knew why. She finally got over the “blow-out diarrhea” and constant “stomach virus that just won’t go away,” but she almost never felt well enough to get out of bed for more than a couple of hours at a time.

My mother was a classical pianist. At age 64 she obtained her Master’s Degree in Piano Performance. She was hoping to get her doctorate and conduct. Six months after she got her masters’ degree, she fell and broke her hand when she put it out to catch herself. After several months of rehabilitation therapy, she was finally able to move her fingers well enough to start playing again. That’s when she discovered she could no longer sight-read – something she had been doing since she was five years-old. I will never forget the pain in her voice when I stopped by to see her one afternoon and found her sitting at the piano, fingers on the keyboard, just sitting there – staring at the music. I asked what was wrong and she looked at me and said, “I can’t make my hands do what my eyes see.” (This was the first observable manifestation of the lead that flooded her body once again when she broke her hand, releasing it from bone marrow where it had been stored since shortly after the initial exposure.)

Less than a year later my mother’s thyroid disease was progressing so rapidly she was told she had to drink radio-active iodine. (Lead destroys the thyroid.) The next year, her heart stopped during a cardiac catheterization and she was taken by ambulance to University of Alabama at Birmingham where she underwent emergency open-heart surgery. After they cracked and spread her ribs, the neurological deterioration was very rapid. She could no longer speak and look at me simultaneously because what she saw interfered with her ability to formulate expressive language. When she spoke, it didn’t make sense.

The worst thing was, she was still able to realize that she wasn’t making sense. The last complete sentence my mother ever said to me was excruciatingly difficult for her to get out – and for me to hear. I can still see her face – eyes squeezed shut tightly, forehead and brows furrowed and wrinkled, and her teeth clenched so hard I thought they would break… “I wish…I could…finish…one…thought.”

There was no doubt in my mind that my mother was disintegrating because of lead poisoning. NOBODY would listen. They said her cognitive decline was due to the effects of oxygen deprivation during her surgery, and would get better with time. It wasn't, and it didn't.

“The Big House” is still standing and another family lives there now. Many houses in the Mississippi Gulf Coast town where my husband and I bought after our daughter was born did not survive hurricane Katrina. To our knowledge, no one we knew personally was killed in the storm or as a result of the aftermath. I have not been able to bring myself to visit the Gulf Coast yet. It still feels too raw…like my history has been erased.

My mother died three years ago, at the age of seventy-one. She got her Masters’ Degree at 64. She broke her hand at 65. She had her ribs cracked and spread for 2 open-heart surgeries at 66 and 67. The last word she ever spoke to me was “Dignity” – which she was finally able to say after several minutes of struggling to get it out. I knew what she was asking but I couldn’t help her. She was pleading with me to help her die. That was seven months before she finally stopped suffering.

I begged for someone to please listen to me. No one ever did.

My mother had arranged years prior to donate her body to the University of Mississippi Medical Center, in hopes that from the study of her system, others would benefit. I asked the doctors, when the final arrangements were made, if they would PLEASE test her lead levels and let me know the results. Even that request was denied. We are still waiting for her ashes to be returned to us.

My question about sulfur-dioxide is based on clinical observation and objective data. Over the last four years I have evaluated more than 60 children in Indiana. Between 1999 and 2002 I assisted Dr. Susan Van Ost in evaluating hundreds of children here in the D.C. area. The children are different.

The incidence of visual processing disorders is MUCH higher in Indiana. I believe the Sulfur-dioxide in the air is at least partly to blame and I believe it is also interfering with the sulfation pathway and contributing to the presentation of autism in OUR children. We can’t just move. We have to figure out how to fix it. If we ignore it and run away, who is going to help all the other children? And even if I COULD “just move” – Where do you suggest I GO?

PLEASE LISTEN.

Marcella Piper-Terry, M.S.

Final note: There is no real "safe place." In order to survive, we must assess the situation, do what we can to improve our ability to survive, and work together to begin addressing the things we cannot immediately control. Our children with autism and other biologically based “developmental disabilities” are the canaries in the coalmines. If we don’t learn from them, we will all pay the price.

P.S.: Dear Mom:
Today, August 14, 2008 is the five-year anniversary of your death. I miss you terribly but I feel you with me. I love you always.
Marci