Posts Tagged ‘autism’

Mourning Three Exceptional Doctors who Gave their Lives for their Beliefs

June 26, 2015

eisenstein Bradstreet Moulden

The old adage tells us that things happen in threes.  As I write this piece, the autism world is still reeling with disbelief a week after learning about the death of Dr. Jeff Bradstreet at age 61.  Only six months ago, we lost Mayer Eisenstein, another extraordinary doctor, who also held a law degree. He was exactly my age: 69. Dr. Andrew Moulden died “unexpectedly” in November, 2013 at age 49.

Personal attributes that these courageous physicians had in common were extraordinary intelligence, a passion for healing, the ability to think outside the box, empathy for their patients, and deep religious convictions.  Moulden was a Muslim, Eisenstein an Orthodox Jew, and Bradstreet, a devout Christian, who prayed with their patients, and trusted their God in all aspects of their lives.

The third commonality these three healers shared was the conviction that vaccines played a role in their patients’ illnesses.  Dr. Moulden, who also earned a doctorate in Clinical Psychology and Neuropsychology, went one step further, stating that every vaccine produces damage. He demonstrated that each dose causes tiny strokes in the brain and in other organs of the body, bringing about a wide range of unexpected health conditions.

Now they share another bizarre connection: the circumstances surrounding their deaths are suspicious. Moulden and Eisenstein had heart attacks. Did they, or were their deaths suicides? Or foul play? Bradstreet was found lying in a river with a gun-shot wound to his chest, a day after the FDA raided his clinic.  His death was immediately called a suicide.  Possible, but unlikely.

Moulden quit a lucrative medical career in Canada in 2007 to travel around North America to conduct and present research into vaccine safety. He demonstrated that many cases of Shaken Baby Syndrome were actually vaccine-related damage. His testimony freed many parents from false accusations that they had abused their infants.  In October, 2013, Dr. Moulden told trusted colleagues that he was ready to release information refuting the germ theory of disease and the vaccine model of disease management. Two weeks later, he was dead.

Eisenstein, a Chicago area pediatrician, who for four decades treated over 75,000 patients, was an out-spoken advocate against vaccination.  He proudly paraded his thousands of healthy, unvaccinated children as proof of the body’s innate ability to take care of itself. He had just welcomed a new grandchild and lost over 100 pounds.  In a wink, he was gone.

Dr. Jeff, a brilliant and beloved physician who healed patients from all over the world, never met a kid, a problem, a symptom, an issue, a disease, upon which he gave up.  Just last month he made presentations at the annual Autism One Conference in Chicago, where he announced that we “would be seeing him for years to come.” The possibility that he gave up on himself and committed suicide is incomprehensible.

Andrew Moulden’s legacy has been preserved by Health Impact News.  Click here to listen to what he wanted to share with the world.

Mayer Eisenstein’s Home First Health Care is still online.  Listen to him speak about vaccines.

The extended Bradstreet family, headed by his “baby brother” Thom, has pledged to get to the bottom of the circumstances of Jeff’s death.  They have established a fund to underwrite a full investigation at Go Fund Me .

If you are concerned about possible vaccine damage or have questions about vaccines, here are some resources:

The Vaccine Epidemic  by Louise Kuo Habakus and Mary Holland

Vaccinations: A Thoughtful Parents’ Guide by Aviva Romm

Dissolving Illusions by Suzanne Humphries and Roman Bystrianyk

For the most complete and up-to-date information on vaccination, go to the National Vaccine Information Center website.

If you are in the Mid-Atlantic region, consider coming to Pittsburgh, PA on September 19th for the second Vaccination: A Conversation conference.  We will be talking openly about all aspects of vaccination research, policy, exemptions and more.  Stay tuned for more information.

In the meantime, please honor the work of these amazing pioneers and brave doctors.  Say prayers for their souls, send healing energy to their families, and beg that if evil forces entered into any of their deaths that justice will be done.

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Preventing Autism

November 28, 2014

Researchers have learned SO much in the past 10 years about risk factors for autism and other developmental delays that I included the word “prevention” in the title, and devoted a chapter to this subject in Outsmarting Autism. I was thus thrilled when a friend introduced me to a mother who runs a parent support group for families with members on the spectrum. She thought the group a good match as a host for me on my year-long book tour.

What a surprise when I received the following response: “Thank you so much for reaching out to me. To me, autism is not something that needs to be healed or prevented. I truly believe with all my heart that it is just as much a part of my boy as him having brown hair and hazel eyes, and I want folks to accept my boy and his neurology the way it is. I respect the fact that you have dedicated your life to what you believe in. But as you can see, I may not be the best person to help you reach your readers. Respectfully yours,”

At least she was civil; the next “push back” was not. The Executive Director of an autism support group cancelled an already scheduled and promoted book signing and talk, because I use the word “prevention” in the title.  She accused me of attempting to eliminate individuals with autism. Those who have followed my 40-plus-year career of counseling families of children with disabilities know that my goal is neither annihilation nor elimination, but rather rehabilitation.

Clearly, as British homeopath Alan Freestone points out, there are two very divided camps on autism:  Those who believe we can only increase autism awareness, but not function, and those whose goal is healing.  I belong to the second contingent. Parents know that their children with autism are medically sick, not just quirky.  Any parent whose autistic child has chronic diarrhea, sleep issues or unremitting epilepsy wants more than awareness.  Haven’t the awareness folks read the desperate Facebook posts from moms who have been up every two hours bathing a child covered in feces or are sitting a vigil at a hospital where doctors are trying to stop a young boy from constant grand mal seizures?  Maybe not. Well, I believe in prevention.  My beliefs in prevention are not the same as believing in the Easter Bunny, Santa Claus or the Tooth Fairy.  They are based in science and I will continue to educate couples who are interested.  I do not need the naysayers in my ear. And here is what I tell them:

PRECONCEPTION

A year before conception, couples should start thinking about cleaning up their environments, changing their lifestyles, and getting rid of their body burdens. A full year out? Yes, because that’s how long it takes to replace the bad stuff, to   learn about the good stuff, and for the body to detoxify safely. The steps I recommend not only improve fertility, discourage complications of pregnancy, miscarriage, and problems during delivery, but also improve the chances of having a healthy baby. Run Laboratory Tests I love tests. For over 30 years I administered diagnostic tests to help parents understand and make informed decisions about their children’s education, health and functioning. Tests only give you information; what makes information powerful is your freedom to decide what to do with it. Here are some tests to consider BEFORE becoming pregnant.  None are routine; in most cases, you must discuss them with your doctor. If your doctor refuses to order them, you can also work with Life Extension Foundation, a membership organization.  This is a wonderful Florida-based company sells both lab tests and high quality supplements.  You have the blood work done at a local lab and one of their doctors interprets the results.  They make money by selling supplements, but their prices are good, and a bonus is a periodic magazine of research that is worth the price of membership.

  • Identify toxic elements – The earlier in gestation toxic exposures occur, the more detrimental they can be to development. Every woman should know what toxins her body is holding before she gets pregnant, and detox appropriately, to assure that her baby isn’t exposed in those early weeks before a positive pregnancy test.

Doctor’s Data Lab offers a hair analysis of over 30 potentially toxic elements, including lead, mercury, arsenic, aluminum, copper, antimony and cadmium to which we are all exposed.  According to Phillipe Granjean MD, internationally recognized environmental health expert, and author of the extraordinary book Only One Chance:  How Environmental Pollution Impairs Brain Development- and How to Protect the Brains of the Next Generation, this inexpensive test is very predictive of the toxic load a pregnant woman dumps into her unborn baby.  Shouldn’t EVERY woman have this test?

  • Screen thyroid function – Low levels of T4 or marginally elevated levels of thyroid-stimulating hormone (TSH) can affect the unborn baby.  Environmental toxins are endocrine disrupters. Insufficient levels or even a mild drop of thyroid hormone in the mother at critical stages of brain development can affect cognitive function in the fetus. Have complete thyroid testing done. Once you know your levels, take natural measures, such as adding iodine to normalize thyroid function.
  • Measure vitamin D levelsEvery day we are learning about the importance of Vitamin D in health.  In 2009 researchers concluded that vitamin D deficiencies in pregnant women should be considered a risk factor for neuro-developmental disorders such as autism. Vitamin D regulates thousands of genes in the human genome. The importance of prenatal, neonatal, and postnatal vitamin D supplementation cannot be underestimated. Vitamin D during gestation and early infancy is essential for normal brain functioning.

Insufficient vitamin D is a universal problem. You want your number to be over 30, even though 25 is considered “normal.”  40 is even better!  If your level is low, start taking supplements at 2000-5000 units of D3 per day, preferably in more absorbable liposomal drops available from Biotics.  Recheck in 3 months. High doses are sometimes necessary for a short time to elevate levels. To learn more about vitamin D, check out the Vitamin D Council.

  • Run an ELISA IgG test for food sensitivities – Your doctor can order this from a local lab. Look for gluten, casein, soy, egg, garlic, and other intolerances.  Rotate mildly problematic foods and eliminate those with moderate to severe reactions. 
  • Know your genetic profile Go to 23andME and do a quick gene screening to pinpoint possible difficulties with detoxification. Work with a health-care professional to identify supplements that can remediate glitches called single-nucleotide polymorphisms or SNPs . 
  • Run antibody titers Find out which diseases you are already immune to by running blood titers.  Make sure that you are not a hepatitis carrier.  Put that in writing to prevent your baby from getting the Hep B shot at birth.
  • Remove any mercury-containing amalgams – Even one or two “silver” fillings off-gas into the mouth with brushing, chewing and drinking hot liquids. Mother’s mercury load crosses the placenta, landing in the liver and kidneys of the fetus. Infants’ levels correlate with the number of amalgams in the mother. Later, mercury shows up in the breast milk, which may provide better absorption of mercury in the nursing infant.  Be certain to have amalgams removed safely by a biological dentist.
  • Detoxify the bodyMothers dump a good part of their body burden into their unborn babies. Consider a homeopathic detox program that clears out chemicals, metals, parasites, bacteria, viruses and radiation. The lower your toxic load, the lower the baby’s.
  • Check for retained reflexesThe Spinal Galant and Asymmetric Tonic Neck Reflex (ATNR) assist the baby in maneuvering through the birth canal.  Mothers who retain either of both of these reflexes may have difficulty giving birth naturally. The baby may not “drop,” be breech, or require a Cesarean section. Simple reflex integration activities for a month prior to birth can help the birth be smoother.

While Pregnant increase input in several areas:

  • FoodThe old saying that goes, “Eating for two,” is correct.  Make nutrient rich, not high caloric choices. Say “yes” to 75-100 grams of protein, organic fruits, vegetables, beans, lentils, asparagus, spinach, nuts and free-range, antibiotic-free animals. Say “no” to sugar and its substitutes, wheat, dairy and hydrogenated fats.  Say “once-in-a-while” to small, cold water fish and soy products.  Take the time to sit down and eat slowly, chewing well.
  • Supplements While the right, good quality foods can provide much needed nutrition, eating adequate amounts of some nutrients is simply impossible. Contraceptives and other medications can deplete minerals. Calcium, mercury-free fish oils, iron, folate and B vitamins are essential for growing babies.  Work with a health care professional to determine the right amount for you.
  • Drinks At least eight cups of good quality water. No alcohol, sodas (especially diet), caffeinated tea or coffee.
  • Relaxation & SleepLearn meditation. Take a yoga class for expectant mothers. Practice daily, breathing deeply. Oxygenation of cells enhances their function. Releasing stress allows the body to put its energy into growing a healthy baby. Turn in before 10:00 pm and sleep at least nine hours.
  • ExerciseStretch to increase flexibility. Walk or attend a class two or three times a week.

How many sonograms do you need? It is really exciting to see a baby in utero, know whether it is a boy or girl, and then call it by name. But, no one knows the long-term effect of sonograms on the unborn baby. A sonogram is sound…sound as loud as a plane’s engines revving up in a baby’s ears. One study showed, the more sonograms, the more likely the baby is to have ear infections.  Another showed that babies later diagnosed with autism had endured three or more sonograms.  Consider limiting them unless medically necessary, and not do them just out of curiosity.

TAKE HOME POINTS

Know the risk factors for autism.  Limit exposures to toxins, while maximizing nutrition and health during preconception and pregnancy. Understand how your lifestyle choices support a baby’s health!  Every child deserves to be healthy, have the opportunities to develop language, have friends and learn! Autism is preventable! Let’s start now!  

Outsmarting Autism

July 6, 2014

Front Cover

With great excitement and pride I announce the release today of my second book, Outsmarting Autism: The Ultimate Guide to Management, Healing and Prevention.  It is available on Amazon in both an e-book and a paperback, as well as from the publisher.  As I watched the magnificent spray of fireworks brighten the skies over the Allegheny River in Pittsburgh last night, I secretly thought they were celebrating not just Independence Day, but also this momentous milestone of mine.

In 2008, I downloaded 40 years of experience and knowledge from my brain into EnVISIONing a Bright Future, my first book. It contains all that was known then about possible causes, treatments and management of autism spectrum disorders. I never dreamed that just as much NEW information would emerge in the next six years: genomic testing that explains in part why some kids become autistic, and iPads with amazing apps, are just a couple of additions.  So…I just HAD to write another book!

Outsmarting Autism, like EnVISIONing in 2008, is the most comprehensive book available on what is now called Autism Spectrum Disorders (ASDs). Whether you are new to the world of autism, are familiar with treatment options, or are a veteran who has “been there, done that,” this book is for you! Discoveries about possible etiologies and promising therapies are emerging so quickly that you are sure to learn something new.

Outsmarting Autism guides you step-by-step with practical information from a variety of fields that families, specialists, and educators can put to use immediately.

Step 1: Take Away the Bad Stuff, and Add Back the Good Stuff

♦ Clean up the environment ♦ Eat, sleep, and drink smarter ♦ Boost the immune system ♦ Balance hormones ♦ Detoxify

Step 2: Correct Foundational Issues

♦ Remove structural impediments ♦ Integrate reflexes

Step 3: Address Sensory Problems

♦ Improve sensory processing ♦ Develop vision

Step 4: Focus on Communicating, Interacting, and Learning

♦ Build language ♦ Concentrate on social-emotional skills ♦ Learn to read, write, and calculate ♦ Use technology

Step 5: Plan for the Future

♦Transition to independence ♦ Prevent autism from conception

Don’t let the book’s mammoth size scare you. Even though it is over 500 pages, I have made it extremely easy to understand, and Cindy Coan’s amazing index allows you to find anything you are looking for quickly and easily.

I hope you will read Outsmarting in sequence.  If you decide not to, at least read Chapters 2 and 3 on Total Load Theory and how today’s lifestyle has contributed to the autism epidemic, before jumping ahead. Autism did not just show up overnight. We now know the many risk factors, and how to be proactive and prevent more children from becoming affected. Individuals with autism are physically sick, and making healthy lifestyle changes, no matter how overwhelming they seem, can be the difference between management and healing.

This book could not have happened without the help and support of so many people.  To the owner and staff at Word Association, my awesome editor, Kendra Williamson, and all of my colleagues and friends who contributed material, proofed and edited, and stood by me while I worked every day for the past two years, my deepest gratitude.

Outsmarting Autism is meant to challenge some of your beliefs. If you have questions, I have answers. “Like” the book on Facebook, and write me a comment.  Go to Amazon and review it. Check out my website at www.OutsmartingAutism.com and see where I am speaking next.  I will be launching the book in Denver and Boulder on July 29th.  From 3- 5pm I will be at Proactive Wellness and at 7:30 pm at the Boulder Bookstore. In September, I am finalizing dates for New York City, Westchester and New Jersey.  Want me to include your town on my year-long book tour?  Let me know.

Now it’s time to get started. We can outsmart autism together.

 

Kuwait Revisited: Offering Help to Those with Severe Disabilities

January 3, 2013

Kuwait Dubai Jordan and Erika's wedding etc 441Kuwait Dubai Jordan and Erika's wedding etc 241artists

Right before Christmas, I returned from my second mission to Kuwait. Now that the holidays are over, I want to share my impressions. I made my first trip there in May, when I was invited to assist with the launch of Center 21, whose motto is “putting the able in disabled.” This enormous undertaking is the brainchild of devoted parents who want their son and others to continue to learn and grow despite the fact that they are no longer eligible for educational services. Center 21 will provide therapeutic and recreational services for the thousands of young adults with disabilities in that tiny country squished precariously between Iran, Iraq, and Saudia Arabia.
The Hosts
Lamia and Nabil and their children Abadi, Saud and Nadia, opened their home and hearts to us. Abadi, the inspiration for Center 21 remembered me, and followed the adult strangers around like a puppy dog, high fiving us over and over again. He was clearly communicating his welcome! His younger siblings, one in college, the other a high school senior, soaked up our knowledge, learning from us at every opportunity. One of Center 21’s volunteers, Fawzi, was our driver, tour guide, technology consultant, and caterer, anticipating and taking care of our every need from sightseeing to late dinner. My team of experts instantly fell in love with our hosts’ warmth and generosity. They made this venture so comfortable and enjoyable that it hardly seemed like work!
The Team
This trip had one repeat member, my long-time friend and colleague, Aubrey Carton Lande, occupational therapist, award winning musician and horsewoman. Accompanying Aubrey and me on our excursion was Mary Rentschler, a specialist in Masgutova Neurosensorimotor Reflex Integration (MNRI®). Completing this international team were Scandinavian neuro-developmental optometrists Thorkild and Lena Rasmussen, whose unfathomable job it was to evaluate and prescribe treatment for the undiagnosed vision issues rampant in the special needs population. As team leader, my prodigious responsibility was as case manager, educator and priority-setter. What a humbling challenge for us all!
The Mission
Whereas in May our emphasis was on visiting schools, government agencies and private organizations, this trip focused on providing individual assessments and services that could improve the quality of the lives of those with special needs. We set up serial evaluations with each expert, followed by group explanations of the role of each area in remediation, and the importance of continuity, support and follow-up by the families. In addition, similar to our previous trip, we delivered an evening conference in a magnificent ballroom, followed the next night by small group discussions on prioritizing therapies, sensory diets and reflex integration.

The Culture
Whoever would have thought that a nice Jewish girl from Pittsburgh would come out of retirement to hang out, joke with, and consult to Muslims in Kuwait? We bonded as humans with common goals and philosophies that instantly overrode our religious, educational, language, fashion and cultural differences. When speaking with parents, sometimes with a translator, my brain quickly disregarded the traditional dress worn by some, seeing only the love in their eyes, and the fear in their hearts. Kuwaiti parents are no different than my clients in the States.
The Disabilities
After working for over 40 years with families of those with special needs, I thought I had seen it all. But nothing prepared me for the complexity of the issues facing these Kuwaiti families. While the country is oil rich, it is resource poor. When a young child receives a diagnosis, little remediation is offered. “Take your child with a disability home and love him,” most families were advised.

We met many individuals age four through the mid-twenties with Down syndrome, cerebral palsy, autism, and global developmental delays. Because Center 21 is planning to have an outpatient facility providing occupational and speech therapy services to all ages, younger kids were included in our case load. Many parents had not one or even two children with diagnoses; several had three of eight or so children with serious disabilities under one roof. Only the loving care of live-in nannies from countries such as the Philippines and Nepal helped them cope.
Just like their American counterparts, families in Kuwait are grateful for and blessed by all of their children, regardless of ability. However, because prenatal testing is not performed in Kuwait at the drop of a hat as it is in the US, children with genetic syndromes are common, especially in families where marriage of cousins is not uncommon.
In the United States an estimated 92% of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston. In the absence of prenatal testing, the United States would have experienced a 34 percent increase in the number of Down syndrome births between 1989 and 2005, Skotko estimates. Instead, 15 percent fewer such babies were born during that time, representing a 49 percentage point difference between expected and observed rates, according to Skotko’s research review. Add to that other screenings, such as those for over 200 other known genetic syndromes, such as Tay-Sachs, that occur in specific populations, and the number of genetically different births is reduced even further.

The Children
Each expert spent more than an hour with about 20 children, a few of whom I introduced you to in my previous blog. For the repeats, we had the opportunity to delve more deeply, and to carve out a prioritized plan. Here are some of the complex cases we saw:

  • Dallal is the 16-year-old non-verbal young lady I introduced you to in my previous blog, who frequently rips off and breaks her glasses. In May, I had suggested a less strong Rx, blatantly practicing optometry without a license. Because she continued to reject even the weaker prescription, this summer her father decided to abandon the glasses altogether.
    The examining optometrist determined that Dallal’s eyes turned out, a condition called exotropia, and that even the lower Rx stressed her brain to keep her vision binocular. Dr. Lena thus recommended no lenses at all, and replaced her glasses with some motor activities designed to strengthen her neck and adjacent muscles, thus allowing her eyes to work together more efficiently. In addition, Aubrey worked with Dallal’s parents to design a sensory room that provided her with deep proprioceptive input and calming activities to lessen her frequent agitation.
  • Abdullah, also 16 and non-verbal, has journeyed outside of Kuwait with his devoted parents in efforts to improve function and skills. His calm demeanor and healthy appearance are unusual for a male with an autism diagnosis. His mother shared that he benefitted greatly from a gluten- and casein-free diet, and had undergone a detoxification program. Yet, he experienced both extreme tactile and auditory defensiveness that prevented him from relating to strangers.
    Addressing the tendon guard and Babinski foot reflexes calmed his extreme tactile defensiveness. Mary is hopeful that with continuous work, he will become available for other reflex repatterning techniques and eventually be ready to engage positively and communicate with others.
  • Mohammed is a teen with Down syndrome who looks more like nine than his 15 years. He has a winning smile that makes those around him melt. Totally loved and over-indulged by his family, he is courteous and compliant. He can tie his shoes, speak in sentences, and even read and write a little.
    His glasses prescription for extreme myopia was also found to exacerbate his visual skill development, and was reduced. Work on his large motor skills quickly improved his grasp of a writing implement and his speech. Discussion about the importance of immune system boosting foods and supplements and a referral to Nutri-Chem and the book Down Syndrome and Vitamin Therapy by Nutri-Chem’s pharmacist founder, Kent MacLeod, rounded out his program.
  • Achmed is one of three boys with autism in a family of eight. His exhausted mother shared matter-of-factly that in addition to coping with her sons, she is the only daughter of a mother on daily dialysis, and is having some health problems of her own. Referencing the work of one of my heroes, Dietrich Klinghardt, MD, the alarm went off in my head for mercury poisoning. Klinghardt implicates mercury whenever a family has multiple children with autism diagnoses. I asked Achmed’s mother about her dental status, and she began to weep, showing me a mouth full of silver amalgams mixed with gold crowns: a veritable petri dish for disease. We discussed the importance of working with an expert in detoxification who knew how to remove mercury safely. Without biomedical intervention, this family cannot get well.
  • Yasmeen is a four-year-old whirling dervish with a single eyebrow that crosses her forehead. In an hour’s time she never stopped moving or emitting a high pitched scream. She eats corn flakes with milk for breakfast, spaghetti for lunch, and pizza for dinner, snacks on crackers and cookies all day, and washes everything down with milk. She has a brother nine months old who is covered in eczema. Her young parents, who are biologically related, were told that their daughter is autistic, and that nothing can be done for her. Last year her teacher suggested casting her arms and putting mitts on her hands to prevent her from self-abusing and touching others. Now that these torture devices have been removed, her hands are so weak, that she cannot use them functionally.
    Yasmeen, like Achmed, is physically sick. I have no doubt that she is gluten and casein sensitive, and is ravaged with a combination of toxins, gut bugs, viruses, parasites and metals. All the sensory therapies and external interventions in my tool chest are impotent in trying to improve her function. We must start with nutrigenomic testing such as offered by Dr. Amy Yasko, to see what type of genetic abnormality this family is carrying, and offer supplements to correct the faults. Somehow, some way, we must improve her diet and get some nutrition into her. This case is urgent; the younger brother is another statistic waiting to happen.
  • Hussein is a young adult with severe cerebral palsy. He has little use of any of his limbs, and very poor head and eye muscle control. One of his legs is permanently perched in his lap, with the knee bent. He does not speak, but appears to understand what others are communicating, according to his sister, who is his advocate. He wears diapers, and is totally dependent upon caregivers for eating and moving from place to place.
    Reflex work on Hussein’s feet left his muscles uncontracted for the first time in his life. He was able to release his leg to an almost normal position. He smiled broadly. His sister started to cry, and promised to continue the prescribed therapy daily.

The Causes
Why so many severe cases with such complex needs? Maybe it started with exposure to the chemical soup from the Gulf War oil fires, compounded by unknown viruses and bacteria, and exposure to heavy metals, mercury and who knows what else, that tweaked their genes in a unique way. Add an extremely aggressive vaccination schedule, the ubiquitous presence of American fast-food restaurants, and stressors such as a well-meaning early intervention program that gets kids walking before their bodies are ready, and you have the “total load.”

The Healing
In the short time we had, we introduced that concept that the body’s top priority is staying well, and that speaking, relating and learning had to take a back seat to digestion, respiration and detoxification. We spoke of the success many families we knew in the U.S. experienced when they combined biomedical intervention with sensory therapies to heal their children with autism, and to improve behavior in those with genetic syndromes and global delays.
When anyone seeks medical help at a hospital, the first step after hydrating and stabilizing the body is running tests to determine what is wrong. We urged our Kuwaiti families to follow this model. We distributed test kits from the Great Plains Laboratory to measure the basics: gut function, the presence of dangerous metals, bacteria, viruses, and parasites, vitamin and mineral deficiencies, immune system markers and more. Hopefully, parents will take the time to collect the necessary hair, stool, urine and blood to open the door to healing.
The Future
As soon as possible, we plan to set up an online network so that parents can communicate with and support each other. Furthermore, we must also appoint case managers to provide continuous education and training. Without support and frequent check-ins families can easily become discouraged and drop out.
Nabil has suggested that we return in February to follow up and continue our work. Whenever we go back, careful monitoring is essential. We need to enlarge our team to include more vision specialists, as well as experts in assistive technology, psychology and counseling.
I would also love to host representatives of Center 21 to visit the United States and see model day, residential, vocational, biomedical, sensory, vision and other programs that they can emulate in Kuwait. If you know of a program I should include in the itinerary, please let me know.
The Payoff
I can think of no more rewarding work than what I have been blessed to do this year. Stay tuned for a continuation of this journey. Lamia, Nabil and their children, Fawzi and his beautiful family, Achmed, Mohammed, Dalal, Abdullah, Yasmeen, Hussein, and the others we saw are my new extended family. I wish them and you a healthy and happy 2013.

Wonder

October 9, 2012

“I know I’m not an ordinary ten-year-old kid….I know ordinary kids don’t make other ordinary kids run away screaming in playgrounds.  I know ordinary kids don’t get stared at wherever they go… It’s like people you see sometimes, and you can’t imagine what it would be like to be that person, whether it’s somebody in a wheelchair or somebody who can’t talk.  Only, I know that I’m that person to other people… To me, though, I’m just me.  An ordinary kid.”

These are the thoughts of August (Auggie, to friends and family) Pullman, a fictitious boy who has endured 27 surgeries to correct extreme congenital facial anomalies of unknown origin.  Wonder is the remarkable first novel by R. J. Palacio that takes us with him to a private middle school, Beecher Prep, where he enters fifth grade after home-schooling for his elementary years.

The school is named for Henry Ward Beecher, a nineteenth century abolitionist defender of human rights. (How appropriate!) Beecher wrote that “greatness lies not in being strong, but in the right using of strength.”  “He is the greatest, whose strength carries up the most hearts by the attraction of his own.”

After Auggie’s parents make the difficult decision to send him off to Beecher Prep “like a lamb to the slaughter,” we learn about his heart and strengths through other, including his parents, sister, Olivia (Via, to friends and family), his principal, Mr. Tushman (yes, a little contrived), teachers and classmates.  Is it painful? Maudlin? A little. And, it is heartening and inspiring.

I have met thousands of families with kids like Auggie.  To them, their child with autism, cerebral palsy, or Down syndrome, is anything but ordinary.  Like Auggie’s parents, they see each and every child as a “wonder.”

This is beautiful story with many “talking points.”  It is book for all ages: one to be read to older elementary school kids, by middle and high school students, and by adults interested in human nature.  I recommend it strongly.

My Kuwait Adventure

June 7, 2012

It all started with an innocent email on April 12th.  “Hi Patricia. We are Lamia and Nabil from Kuwait. We have an autistic son. We met you in 1996 in Washington, DC. Do you remember us?  Our son was 5 at that time; he is 21 now. Awaiting your kind reply.”

Did I remember them?  Are they kidding? How could I forget this wonderful couple and their adorable non-verbal son and toddler daughter.  I fired back an instant reply:  “Of course I remember you!”

Minutes later, another email:  “Wow, nice hearing from you. Hope you are fine. We and a group of parents who are working to establish a center for special needs kids age 21 and above. The center was approved by the government a week ago.  It’s a big project. Therefore, we are requesting that you and other consultants whom you recommend, visit us by end of May to discuss the preliminary stages of development. We want to contact you on Skype for further details.”  I was trembling with excitement!

On Skype, we got down to business after laughing about what 15 years had done to our hair and figures.  I was given a carte blanche to put together a team.  Less than a month later, we hopped onto a United airbus, and in the middle of one of those famous desert sandstorms, landed in Kuwait.

Catching Up

Since Lamia, Nabil and I had had NO contact since 1996, they were unaware that I had run a non-profit organization for the past 15 years, written a book, or that exciting new therapeutic options existed for their son and others. They confessed that they had thought about trying to find me in the past, but only now did they ask their 17-year-old son to “Google” me.  They described their pleasure when my photo appeared on the computer monitor; their delight could hardly have equaled mine.

When I decided to wind down DDR several years ago, many asked, “Patty, what will you do now?’  I responded, “I don’t know; something will come up!” Was Kuwait where my boundless energy was headed?  To a country the size of New Jersey, over 6000 miles away, where over 3000 children born in 1991 were affected by the devastating oil fires?  All I could think of was what horrendous damage breathing all those toxic fumes did to pregnant mothers and their babies.

My Team

I asked for a week to choose my team. After making many contacts, I was really fortunate to be accompanied by two amazing women: my long-time friend, occupational therapist Aubrey Lande, and a new acquaintance, special education teacher and art therapist, Becky Rutherford. Aubrey is a Boulder-based sensory processing expert, award winning composer and musician, expert horsewoman and Watsu (a combination of aquatic bodywork, massage, joint compression, shiatsu, muscle stretching and dance) instructor. Becky, a sixth grade teacher at Beaver Run Special School in Kimberton, PA, is an expert in Curative Education and the Camphill movement, both aimed at nurturing individuals with special needs toward leading full lives. She and I met at the Camphill Symposium a year ago.  She still carried my business card in her purse, even though she was sure she would never see me again!

Our Assignment

Our mission was multi-faceted.  We were to advise Kuwaiti professionals, officials and parents on all aspects of the proposed center, including curriculum, architecture and engineering, meet and consult with a dozen families, put on a conference, and visit every government agency and non-profit organization having anything to do with autism, cerebral palsy, Down syndrome, genetic disorders and other developmental disabilities.  In a week, in 110 degree heat, with a mandatory siesta each afternoon! We hit the scorching pavement running!

Our gracious hosts accompanied us to about a half dozen schools and centers, including ones for early intervention.  In Kuwait, children are separated by disability, and the approaches are ones that go way back to the seventies. We observed toddlers sitting in hard, unforgiving chairs trying to match colors and shapes and teachers intent upon extinguishing unacceptable behaviors.

It’s a Small World After All

One of Kuwait’s top SLPs joined us and served as our unofficial interpreter.  “Dr. Lulu” trained at the University of Cincinnati, where she shared that she lived with a Jewish family.  “What was their name?” I asked, taking a stab.  Would you believe they were good friends of my family?

One family shared a file folder of reports on their daughter, including a summary from a consultant in Baltimore who had met with them in 1994 when the parents sought medical advice at Johns Hopkins.  The consultant had not seen the child, but took a history and wrote out her recommendations: 1) Begin a gluten-free, casein-free (GF/CF) diet. 2) Use supplements, including omega 3 and probiotics, 3) Have the child evaluated by  an occupational therapist with background in sensory issues, 4) Get an evaluation by a developmental optometrist, and 5) Contact Patricia Lemer and join Developmental Delay Resources!  I nearly feel off my chair!  Although the report was dated May, 1994, it could easily have been written today.  The same recommendations were appropriate!

Vision

Almost every individual with a disability we met had an untreated vision problem. Many had a strabismus, some a nystagmus.   Almost none wore lenses, and those who did were over-prescribed (Yes, I’m practicing optometry without a license again!).  One father told us that the eye doctor anesthetized his 15-year-old, non-verbal daughter with autism to determine her Rx.  At least once a week she rips her glasses off her face and breaks them.  He buys frames by the dozen and every weekend, combines usable components to make new pairs until he runs out of spare parts and has to buy another dozen.  I muscle-tested different strengths of plus lenses on her and recommended one that was half strength.  I’m waiting to hear the results!

Oil Rich, Resource Poor

Many think of Kuwait as a place where the streets are paved with gold and everyone wears Rolex watches; that’s a myth.  Yes, the COUNTRY is rich and takes excellent care of its citizens, but the PEOPLE are just like us.  While they do not have to pay taxes or worry about the cost of gasoline, they work hard to make a living.  They are lawyers, accountants, computer specialists, investment bankers, and business owners. If they decide to go out of the country to seek help for their children with disabilities, it’s on their own nickel.

Occupational therapy (OT) and speech-language pathology (SLP) are both emerging fields, with new master’s degrees just becoming available at Kuwait University.  Until the first classes graduate this year, like almost all other commodities, including food, cars and clothing, therapists are imported.

Multiple Disabilities

Few families have a single child with issues.  Because they live with large, loving, extended families, many homes have several children with delays, including autism, Down’s and some rare genetic syndromes I never heard of.  Obviously the chemical soup from the Gulf Wars, unknown viruses and bacteria, and combinations of heavy metals including depleted uranium, mercury and who knows what else, tweaked their genes in a unique way. I could not help but wonder if the deer tick that carries Lyme disease has a cousin who lives in date palms. Add an incomprehensible vaccination schedule that starts with tetanus shots for the pregnant mother at the fifth and seventh month, a hepatitis B shot at birth for the baby, and monthly boosters containing up to ten pathogens, and you have an immunological nightmare!

And the pattern of birth order defies everything we thought we knew about “toxic load.”  The first couple of children may be neuro-typical, then one or more with autism, and then a couple more without delays.  We also saw many females with disabilities.  What’s that all about? Are estrogen levels low?

Parents Everywhere Have the Same Concerns

Our conference attracted over 100 parents and professionals who carefully wrote out questions and waited over an hour to query us in person. “Will my child ever lead a ‘normal’ life?”  “How can I calm my two non-verbal adult sons with autism sufficiently so they can fly out of the country?”  “How can I stop my son from masturbating?”  “Two of my five children have autism and my wife is pregnant.  How can I prevent my new baby from becoming autistic?” I really struggled to find solutions that were compatible with Kuwaiti culture, religious beliefs and family values.

Center 21

Lamia and Nabil and their friends are extremely concerned about what their son will do all day now that he has no school, no program, nothing to get up for in the morning.  So they took the bull by the horns and petitioned the government for help. After a year of hard work, Center 21 was born. Kuwait is no different than the rest of the world, where those babies born at the beginning of the autism epidemic are turning 21 this year. The need is prodigious.

Center 21 will launch this summer with a small camp of a dozen or so individuals who have autism, cerebral palsy and variety of other special needs. It will gradually grow to 30 or so, and in the fall be housed in a villa. By 2013, hopefully it will expand to accommodate 100, and relocate to a renovated school building.  Hiring will begin soon for bilingual Arabic-English speaking special educators, occupational therapists, speech-language pathologists and recreational therapists.

While no statistics exist on numbers who are aging out of schools, the plan is to serve 1000 young adults with special needs by 2015 on a lively mall-like campus that includes villas, shops, cafes, a medical center, therapy rooms, art studios, a sports complex and more.  A huge undertaking?  You bet!  And if anyone can accomplish this enormous feat it is these dedicated, determined parents!

For now my team’s job is to help the Kuwaitis understand the relationships between health, sensory processing and behavior.  I think if we can accomplish that, our work will be rewarded by seeing these beautiful young adults become more functional.

Next Steps

I cannot wait to set up a testing program to evaluate, identify and prescribe treatments for the underlying biomedical issues. Thyroid problems, vitamin D, essential fat and other nutritional deficiencies are clearly rampant.  We have already started working with Great Plains Laboratory and New Beginnings Nutritionals in this regard.  A Kuwaiti pharmacy is prepared to import whatever supplements are necessary to treat underlying problems.

I hope to return to Kuwait in the fall, as the Kuwaiti’s say often, “In sha Allah.” Lamia, Nabil and their extended families were such generous hosts. We parted in tears with promises to stay in touch.  Putting together a team of developmental vision experts is my next goal.  Some lenses, prisms and simple visual therapy activities can make a HUGE difference for these young adults.  I believe we can “buy” 10-15 IQ points with these measures that take stress off the nervous system and free up energy for other functions.   Is it too late?  Never!

I am heartened by one touching “thank you” I received from a father, who told us that all he wanted was for his 21-year-old daughter to be happy.   “You taught me so much, and believe me, if I had the chance, I would be your house boy to learn from you. Friends come into our lives and go out of our sight, but they are always in our hearts.  You will be always with us here in Kuwait. You are a second family and country, and if you are in this part of the world again, please come and see us.”

It doesn’t get much better than that!

Peanut Allergy Epidemic: What Everyone Needs to Know

October 10, 2011

Last week, I observed a friend frantically chasing her toddler grandson who had slipped out of her grip, run to a buffet table and grabbed a cookie. “Does it have nuts in it?” she yelled in abject fear to no one in particular.

Today, more than 1% of American children, like this little guy, and approximately .5% of adults in the United States are allergic to peanuts. That is an estimated one million kids and three million individuals, who could die by simply breathing the air in a room where someone ate a peanut butter sandwich.

When and how did this epidemic develop, and why is it continuing? Most important, what is its cause, and what can we do to stop it?

The frightening answers to these questions are in The Peanut Allergy Epidemic: What’s causing it and How to Stop it by Heather Fraser, a Canadian mom whose child had an anaphylactic reaction to peanut butter at 13 months of age. I could hardly put it down! You and everyone you know who, especially your pediatrician, should read it.

The “perfect storm” that spawned the peanut allergy epidemic around 1990, (not surprisingly paralleling the autism epidemic) occurs, like autism, in more boys than girls. “Victims” are the same: picky eater kids with lessened ability to detoxify, consuming less nutritious food and receiving an ever-increasing number of vaccinations, growing up in an increasingly toxic environment. My friend, Dr. Ken Bock wrote about them in his book Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders.

Bock knows from his busy practice that many children with autism have severe allergies, including life-threatening reactions to peanuts. Likewise, many children with peanut allergies are diagnosed with autism spectrum disorders, including attention deficits, pervasive developmental disorders, Asperger syndrome and full-blown autism. The commonality, he and others agree: an overburdened immune system. How did that happen? Let’s start by understanding allergy and the ONLY means by which mass allergy has ever been created: by injection.

What is Allergy?
Early twentieth century American researchers, Rachel Carson and Theron Randolph, and a contemporary, MacArthur “genius award” winning biologist, Margie Profet believe that allergy is an evolved, and often risky, protective response: the body’s natural defense against toxins linked to benign substances. An “allergic” reaction occurs when the body is exposed to proteins of unfamiliar foods, triggering immunoglobulin epsilon (IgE) antibodies, the soldiers whose job it to protect the body’s mucous membranes from invaders. When they detect trouble, they deploy a biochemical cascade, characterized by coughing, shortness of breath, itchy skin hives, leaking of blood vessels causing swelling and potential asphyxia, vomiting and diarrhea. Scratching, vomiting, diarrhea and sneezing are a body’s desperate attempts at ejecting a toxin as fast as it can. In severe reactions, blood pressure drops, draining vital organs and causing the heart to stop.

The term “allergy” was coined in 1906, only one hundred years ago, by an Austrian pediatrician, trying to reconcile an unexpected reaction to vaccination in some of his patients. The modern concept of allergy grew out of the occurrence of “serum sickness,” a man-made malady. Keep reading.

The Hypodermic Needle
Documented life-threatening mass allergic reactions were rare prior to the late nineteenth century, and first emerged as an “unintended consequence” of a new invention, precipitated by the unprecedented need for pharmaceuticals near the end of the Civil War: the hypodermic syringe. Louis Pasteur was the first doctor to use a hypodermic needle to inject a vaccine: anthrax for livestock, and later rabies to a boy bitten by a dog. Hypodermic needles were quickly adopted as a hygienic improvement over the messy, often dirty, transdermal lances previously used to puncture or scratch the skin to insert pathogens.

As demand increased, costs became more reasonable, and production soared. Upjohn and Parke-Davis (both now owned by Pfizer) and Eli Lilly (the developer of thimerosal) were born out of demand for hypodermically delivered vaccines. Their 1890’s marketing methods closely resembled today’s, minus television and computers. Sales reps visited physicians’ offices, leaving promotional literature and samples in lively packaging. And, don’t forget the annual medical almanacs! By the turn of the 20th century, vaccine manufacturing was big business.

The Need for Preservatives
With an increased demand for vaccines for dreaded smallpox, tuberculosis, diphtheria and cholera, and the realization that a single vaccination did not confer lifelong immunity, the need arose for vaccines that could travel safely and be administered efficiently. Pus and scabs from sick animals decomposed quickly; sick animals were difficult to transport. The answer: preservatives suspended in an antibacterial carrier gel made of vegetable glycerin that extended shelf life and could be delivered by injection.

Early twentieth century ingredients included mercury-based antifungals and various oils. Exact ingredients were fiercely guarded proprietary formulas, protecting the scientists, their companies and shareholders by law.

Serum Sickness
A common outcome of the first mass preserved, hypodermically delivered injections of sera for scarlet fever, tetanus and diphtheria was a poorly understood and potentially fatal condition. It was first called “serum sickness,” later termed “anaphylaxis” by French Nobel laureate and immunologist Charles Richet – from the Greek ana (against) and phylaxis (protection) – the opposite outcome from what was expected from vaccination. Symptoms included fevers, rashes, diarrhea, decreased blood pressure, lymph node swelling, joint pain, an enlarged spleen, kidney failure, breathing difficulties, and shock, lasting for days, weeks or a lifetime, and, occasionally, proving fatal.

What was causing so many people to get sick instead of stay well? Richet experimented with dogs to find the answer. He injected his subjects with raw meat proteins, and then fed them raw meat. The result was anaphylaxis! Two other researchers did the same, except by injecting egg and milk, showing that without exception, all proteins, toxic or non-toxic outside the body could produce anaphylaxis by injection. Richet discovered that this phenomenon is universal for all animals.

Austrian pediatrician Clemens von Piquet and his Hungarian colleague, Bela Schick, studied serum sickness in thousands of children, noting a paradoxical relationship between the two outcomes of vaccination: attaining immunity and acquiring serum sickness. In both outcomes, an incubation period occurs between the initial inoculation and appearance of symptoms. Subsequent injections (just like secondary exposure to infections) are accompanied by an accelerated and exaggerated response resulting from “a collision of antigen and antibody.” This conjecture was confirmed by the fact that in 90% of von Piquet’s patients, immediate adverse reactions occurred following the “booster” injection 10-30 days after the first.

In 1934, up to 50% of children experienced post-vaccinal serum sickness. Families were forced to weigh their fears of fatal diseases such as smallpox against the risk of being injured or killed by a vaccine, and choose the lesser of two evils. The only difference from today is that few of these dreaded diseases kill many people any longer in developed countries because of antibiotics.

Anaphylaxis
As Richet continued to experiment with cats, rabbits, horses and frogs, he deduced that “digestive juices” were required to break down the protein, and if this did not happen, the body would mount an immune response. Experimental alimentary anaphylaxis is almost impossible to demonstrate in the presence of healthy digestion. The first injection of undigested protein into the blood stream sensitizes and weakens an animal, making it susceptible to a second, smaller dose which then could cause a serious, even fatal reaction in persons with inadequate digestion. Conclusion: healthy digestive juices actively transform potentially toxic proteins, rendering them innocuous, or restated, inadequate digestion is a common sense prerequisite for food allergy.

The “ingestion” theory of anaphylaxis has persisted to explain the vast majority of food reactions. Some of these reactions, however, are not life-threatening, but more subtle and hard to pinpoint, such as migraines, skin conditions, fatigue, anxiety, irritability and behavioral problems. Egg was a case in point; why did a young boy suffer from “egg poisoning” in 1908 when nobody had ever injected egg into him? Hmm…Unfortunately, his doctor did not know that for many years prior, emulsified egg lecithin was used extensively in vaccines, and vaccine manufacturers had introduced fertile hen’s egg as medium for growing viruses. What was the link? The answer came in the 1940’s with the discovery of penicillin.

Penicillin Allergy
When we first examined the peanut allergy epidemic, we recognized the attributes of the perfect storm for the “victims.” With the discovery of penicillin in 1928 by Scottish biologist Alexander Fleming all the pieces of the “perfect storm” for the “weapon of mass destruction were in place: a pathogen suspended in an injected or encapsulated undigested protein from oil.

Both oral and injected forms of penicillin contained a new ingredient, cottonseed oil, a product whose proteins are considered potent allergens. A gelatin capsule sealed the drug, which was not released until it reached the small intestines, bypassing the modifying effects of digestive enzymes. I’m sure by now you can guess what happened!

From the 1930’s through 1950, sensitivity to cottonseed oil grew, as did penicillin allergies. Scientists sought a cheap, plentiful replacement. You guessed right again. After World War II, the all-American peanut replaced cottonseed as the oil of choice in the manufacturing of penicillin and in almost all vaccines! It was plentiful, inexpensive, stable in heat, and during the war, patriotic.

By 1953, Pfizer and others produced six hundred tons of penicillin, laden with peanut oill mixed with beeswax (POB for penicillin in oil beeswax) to coat the penicillin particles in a concoction known as the Romansky formula. As the body metabolized the wax and oil, the drug was released into the system. By the mid 1950’s, an estimated 2.5% of all children had developed an allergy to injected penicillin. Scientists reduced the amount of beeswax and oil in an attempt to reduce and eliminate undesirable reactions, such as fatal anaphylaxis, antibiotic resistance, fungal overgrowth and dysbiosis.

Then came a new formula mixing penicillin with aluminum monostearate (PAM), also suspended in peanut oil. PAM was the delivery of choice from the mid-fifties through the 1980’s. More frequent and more severe allergic reactivity, including anaphylaxis emerged during what was dubbed “the PAM era.” Penicillin had created an unparalleled outbreak of allergies and anaphylaxis.

Peanut Allergy
During the late 1940’s and throughout the fifties, peanut oil in penicillin was not suspect. It was used not only in this wonder drug, but in streptomycin, broad-spectrum antibiotics, injected epinephrine for asthma, in anesthetics and vaccines. Unknown to consumers, peanut oil was a popular ingredient in vitamins, skin cream and even infant formulas!

Prior to 1941, the literature shows no report of peanut allergies in adults or children. A survey of people showed self-reported peanut allergies in .3% of those born 1944-47, .4% of those born 1948-57, and .6% between 1959-67. In 2008, over 1% of people born 1944-67, reported allergies to nuts, including peanuts.

Articles published in the late 1950’s and early 1960’s show a growing awareness of peanut allergy, but the first formal study of peanut allergy in children was not launched until 1973, and then on only 114 kids. Doctors watched the mysterious rise in peanut allergies, but few asked “why?” By the early 1990’s tens of thousands of peanut allergic kindergartners entered school, not only in the U.S., but in Canada, the United Kingdom and in Australia. This allergy accelleration was concurrent with an unprecedented push of political, social, legal and economic reforms to alter and accelerate the vaccination schedule in these countries.

The Vaccine Connection
In 1964, pharmaceutical giant Merck announced a new vaccine ingredient promising to extend immunity: Adjuvant 65-4, containing up to 65% peanut oil as well as aluminum stearate. An adjuvant (from the Latin “adjuvare,” to enhance) is a vaccine additive that stimulates the immune system, upping the body’s production of antibodies to a pathogen. Adjuvants reduce production costs as the vaccine maker needs less of the expensvie antigen; they also increase a vaccine’s efficacy. The can also be dangerous; the more effective a vaccine, the greater the risk of allergies and other adverse effects.

The inventor of Adjuvant 65-4, Maurice Hilleman and his colleagues at Merck knew that allergic sensitization to the peanut oil in the adjuvant was a distinct possibility, but considered toxicity and allergenicity inevitable outcomes of vaccination. It was simply difficult to balance potency and safety.

The public clearly did not know what was being injected into their children, called by immunologist Charles Janeway, “the immunologist’s dirty little secret.” The peanut allergy epidemic in children was precipitated by vaccines. Lawsuits ensued, especially related to the DPT vaccine. By 1985, over 200 lawsuits were pending against four vaccine manufacturers. This litigious environment caused many pharmaceutical companies to abandon the lucrative vaccine market, causing a vaccine shortage. A solution: combination or conjugate vaccines.

Vaccines were combined for convenience. With speed and efficiency the U.S. Pediatric vaccination schedule took off, helped by President Clinton’s Childhood Immunization Initiative in the mid-nineties. By 1998, childhood vaccination rates were at an all time high. So was the incidence of peanut allergy in children. Between 1997 and 2002, the peanut-allergic pediatric population in the U.S. grew by and average of 58,000 children a year, and doubled between 2002 and 2008. By 2008, more than one million children under 18 and another two million adults were allergic to peanuts in the United States alone.

According to Heather Fraser, “vaccination was the elephant in the middle of the room. Researchers glanced at it, knew it was there, but were reluctant to get too close.” The possibility that hundreds of thousands of children have been sensitized to peanuts by ingredients in one or more routine pediatic vaccinations is just too much to conceive. But it is too obvious to deny. The real clue is the sudden rise in peanut allergy following the escalation of the pediatric vaccine schedule.

Cross Reactivity and Vitamin K1
Most peanut-allergic patients have IgE antibodies against other legume proteins, including soybeans and other oil seed proteins, such as castor. At the same time that the vaccination schedules were accelerating in the mid-1980’s, doctors in the U.S. and many Western countries added a prophylactic injection for newborns. The purpose of this shot was to prevent hemorrhagic disease in newborns (HDN) or vitamin K-deficiency bleeding (VKDB). The two available brands contained castor seed oil, as well as aluminum, a well-known IgE stimulating adjuvant, 4% of which remains in the body indefinitely.

These ingredients remain in the body for an extended period of time, and are still being released as a baby receives its first Hib, DpaT, and Hep b shot at one or two months of age. IgE to castor could cross-sensitize a child to peanuts.

Detoxification
Why don’t ALL children react to peanuts? Ken Bock and other doctors treating children with autism spectrum disorders believe allergenicity is inversely related to an individual’s ability to detoxify. Children with peanut and other allergies have compromised immune systems and are poor detoxifiers. Most have gut problems, including fungal and other infections. Most are male.

Prevention and Rationalization
Screening children before each vaccination could help, but is antithetical to the goals of mass vaccination. Obviously, the “one size fits all approach to vaccination is simply not right. We have sizes of shoes, different ages of walking, teeth eruption, speaking and reading. We need to look individually at appropriate vaccine schedules.

But why should the burden be on the consumer and a family’s health-care providers? Clearly, vaccine manufacturers must take some responsibility. Right now they are basically financially exempt from ANY damage. Why? Because vaccines are BIG business tied to the military and school admission.

Furthermore, from an economic standpoint “food allergy” is BIG business. Think of all the enterprising companies producing peanut-, gluten-, casein-, soy-, and egg-free foods. Do we want to put them out of business? Hardly.

The biggest problem though is that it is virtually impossible to prove a causal link between vaccination and a later life-threatening allergy, even though the medical literature demonstrates that the ONLY means by which immediate and mass allergy has ever been created is by injection. Starting with combining the hypodermic needle and vaccines at the end of the 19th century, mass anaphylaxis exploded into the Western world.

We MUST have a formal study of vaccinated vs. unvaccinated populations. For starters, peanut allergy is virtually unknown in Amish communities, which discourage vaccination. Now that parents of children with autism are selecting not to vaccinate subsequent children, perhaps a target group is emerging. The National Vaccine Information Center (NVIC) has promised to pursue this research. Let’s hope it comes soon!

So for today, parents of peanut-allergic children are coping. Some have discovered ways to lessen their kids’ reactivity with energy medicine, acupuncture, NAET, and other alternative medicine techniques. But coping with an outcome that was forced upon them is unfair and insufficient. These parents must combine their forces as has the autism community and say “Enough!” Only then can we stop this runaway train.

Camphill Communities: Special Places for Special People

June 1, 2011

What if there were places for adults with disabilities to live, grow and eat delicious food?  Places where they are treated with respect, participate fully in meaningful work, and live in nurturing and supportive multi-generational family-type atmospheres?  Well there are more than 100 such “life-sharing” communities in over 20 countries in Europe, North America, Africa and India. They are called Camphill Communities.

Last month I attended the Camphill Symposium “Being Human in the Twenty-First Century: Toward New Thinking,” celebrating 50 years of Camphill in North America.  My goal was to explore Camphill communities as alternatives for the multitude of young adults with special needs graduating this year from our high schools, and for others in their twenties and thirties whose parents are aging and who languish at home without a social network or life skills.

The symposium brought together almost 100 folks from a variety of disciplines.  I met social thinkers, environmentalists, scientists and members of a dozen life-sharing communities who spoke passionately about their desires for collaboration and cross polination.

The Camphill community model is based on the teachings of the philosopher Rudolf Steiner (1861-1925).  Steiner’s philosophy melds body, mind and spirit to apply “spiritual science” to all aspects of life. The legacy of this true Renaissance man is an amazing array of accomplishments, including a worldwide network of Waldorf Schools, a farming system now known as Biodynamic agriculture, holistic medicine encompassing a broad range of complementary treatments, as well as art, architecture, and even ethical banking!  His writing, including about 30 books, was so prolific that no one even knows how many lectures he authored, but it is estimated to be well over 6000!  Today, his teachings are known as “Anthroposophy” and practiced around the world.

The Camphill movement was founded in the 1940s by an Austrian pediatrician and follower of Steiner, named Karl Konig.  Anthroposophists believe that every human being possesses a healthy inner personality that is independent of physical, developmental, cognitive or emotional disability.

The symposium took place at Camphill Village Kimberton Hills, PA, near Valley Forge, a vibrant farming and handcrafting community of about 100, including both neurotypical  individuals of all ages and 40 adults with developmental disabilities. At Kimberton Hills, Copake Camphill Village in New York, Heartbeet in Vermont, and Camphill Village Minnesota, as well as in Camphill communities worldwide, villagers live in small homes, learn vocations, eat what they grow, move, paint and live anthroposophy 24/7. Neurotypical adults and their families, including young children, support and care for each other, the land and the environment around them, following organic and biodynamic principles whenever possible.

Each day of the symposium had a theme.  Invited speakers presented to the group as a whole, and then intimate focus groups of mixed ages, abilities and disciplines fleshed out the subjects further. The conversational sessions were enhanced by an artistic activity of our choosing.  Offerings included pastel painting, poetry, clowning, eurhythmy (a form of therapeutic movement) or singing.  We dined together for lunch and supper in the newly renovated café on delicious locally prepared cuisine. I listened to and shared insights with some astounding people during these opportunities.

Shelley Burtt, the Executive Director of the Camphill Foundation, spoke of “robust inclusion.”  She believes that society needs to be more open and expand its thinking about what is “normal.”  This process includes finding a new vocabulary that does not pathologize, but rather is accepting of people with differences in abilities and knowledge.

Judith Snow, who despite being paralyzed from the neck down, concurred with Shelley, urging us to support inclusive, not exclusive communities. Judith, who has a master’s degree, fully participated in all symposium activities in her wheelchair, which she propels by blowing into a tube.  With the help of a personal assistant, she spoke passionately about the assets individuals like herself bring to communities.  As a life-long advocacy for the disabled, she calls herself a “social inventor,” in addition to being a sought after motivational speaker and visual artist.

Coleman Lyles, President of the Camphill Communities of California expertly and equitably facilitated the morning focus group in which I participated.  His lifetime experiences with and love of the Camphill model is palpable.  He understands the history of the movement and its roots, yet has a vision for its future, as well.  The session he monitored on “nature, nurture and technology” was memorable in that he helped the group see how these forces can live compatibly in today’s society.

Eugene Schwartz, a veteran consultant and expert on both Waldorf education and Camphill communities, was a member of my focus group.  He has labored for over 30 years to make Steiner’s work available to the public through his extensive website and teachings.  He believes in the power of Camphill to spin off new communities to meet the needs of today’s populations of adults with special needs.

Tom Stearns, President and founder of High Mowing Organic Seeds in Vermont, turned a seed-collecting hobby into one of the leading organic seed companies in the United States.  Tom agreed with Eugene, and spoke to Steiner’s sense of urgency, which frequently fueled his inspirations into action.  He described the Camphill communities as the seeds for future organic-based farms for the disabled.

Barton Kirk, a fellow Pittsburgher, with whom I traveled to Kimberton Hills, and shared my artistic experience painting with pastels, is an ecological engineer who plants other types of seeds.  His seeds are ideas that germinate into innovative solutions for water and waste problems.  Barton grew up with community supported agriculture (CSA) and interned at Camphill Kimberton Hills. Today he is focusing on interdependence instead of independence in his work.

Hannah Schwartz, (no relation to Eugene), the vibrant co-founder of the newest American Camphill community, Hearbeet, is a true breath of fresh air. She grew up at Kimberton Hills. The late Judith Bluestone, founder  of HANDLE, a sensory-motor program she developed, would be ecstatic to learn that Hannah has introduced the HANDLE method to several Camphill communities.  Accompanying Hannah to the symposium were several of her villagers, including an extremely appealing couple, both with Down syndrome.  Hannah recounted that each had lost over 100 pounds since moving to Heartbeet.  Both participated fully in the symposium, making relevant comments, reading poetry and socializing with others.  Their warmth, ingenuous curiosity and passion brought tears to my eyes. Hannah plans to expand Heartbeet to include young adults with autism in the near future. I hope to visit her this summer in my travels to New England.

Peter Bruckner, my extraordinary pastel instructor, is a multi-faceted artist who heightened my enjoyment of the symposium. While I signed up for “painting,” I did so with fear and trepidation. Peter made it so much fun that I went out and bought some pastels to share my new-found skills with my daughter and grand-daughter. Over Mother’s Day weekend, we spent a full afternoon painting.  In addition to teaching art at Camphill communities, Peter makes one-of-a-kind jewelry, writes poetry, paints, and is the founder of a touring marionette theatre. Peter’s huge heart extended to everyone at the symposium as he sprinkled his talents and humor among us.

Several non-profits are now focusing their attention on developing programs for adults with autism and related disorders.  The Autism Research Institute (ARI) has publishes a bulletin on the subject, and  The Autism Trust from the UK, has launched a United States initiative to establish franchised “Centers for Excellence”  in all 50 states and many other countries, a creating worldwide virtual campus adult community. DDR too is looking at alternatives. I strongly believe that restrictive, non-inclusive communities are counter to what I experienced  at Camphill.  I urge all of those involved in planning for adults to take a look at the Camphill model.  I think that once you see the love, respect and interdependent support in each unique community, you too will choke up with emotion.  For over 50 years Camphill’s success has spoken for itself all over the world. Why reinvent the wheel?

 

A Family’s Quest to Hear and Be Heard

November 30, 2010

 

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“Severe deafness.”  “Profound hearing loss.”  These were the words heard by Jennifer and Bill Rosner within hours of each of their daughters’ births.  Imagine knowing that your children could possibly live in a world without music, voice, laughter and words, when yours was filled with violins, singing, humor and talking?  Unthinkable. 

I learned of this family’s odyssey through an Evite a few months ago:  an electronic invitation to a reading and book signing of If a Tree Falls, hosted by Jennifer’s sister in a Washington, DC suburb.  Since I travel there frequently, she included me in the guest list. Unfortunately, I was not able to attend, but I quickly ordered the book.  The holiday weekend gave me the time to devour it.

As a mental health professional working with parents of children with disabilities for over 40 years, I have listened to and read countless stories. Few have touched me as profoundly as Rosner’s. She takes us on a roller coaster ride into the land of the hard-of-hearing, a fractured battleground where those committed to signing are pitted against those sold on inclusion in the verbal world.

My first thoughts compared the Rosners’ experience to those of parents whose children are diagnosed with autism. Unlike autism, hearing impairment is now routinely diagnosed immediately. Infants are whisked off for hearing tests, and the die is cast.  Confirmation comes two weeks later, with a clearer picture of the seriousness of the problem. With autism, many months of worry, fear, denial and angst usually precede confirmation. Which would you prefer:  knowing immediately that your child faces challenges, or having a year to bond before the diagnosis?   Tough question!

There the contrast ends with a fork in the road.  In autism, those espousing behavioral plans debate those who evangelically preach diet and nutrition. Faced with severe and profound hearing loss, the Rosners immersed themselves into the worlds of signing versus speaking aloud. How to choose?  

After much debate, Jennifer and Bill decided that they were “talkers.” “We were constantly debating, questioning, arguing, doubting, agreeing, wondering aloud. And we were hearers, in the hearing world. A soundless, wordless world was unimaginable.”  They made the difficult decision to bring their daughters into their world.  

Baby Sophia was fitted for hearing aids, and baby Juliet received a cochlear implant on her first birthday.  Then they waited.  Would each girl hear and eventually talk? 

Living this emotional soap opera was insufficient for Rosner. Armed with information from geneticists, family trees, immigration records, and her fertile imagination, she takes the reader back over 150 years to the origin of her children’s deafness.   A chromosomal abnormality, asterisks marking those who could not hear, and a missing name all combined for her to conceive how sisters, brothers and parents were torn apart.  We travel in our minds’ eye to an Eastern European shtetl, where not only being Jewish, but the double whammy of being deaf, isolated ancesters.

All families hide secrets, but this one was in plain view: a mother with hearing aids and a poor ability to listen, was an experience I could identify with only too well. How many readers struggle with the burden of not being heard, and are shushed as I was, because talking about the elephant in the middle of the room was not “nice.”

Thank you Jennifer for opening Pandora’s Box for YOUR girls, and hopefully for others who want to know what was previously “unknown.” Simple, yet profound, this memoir shows how one family answered the question, “After the diagnosis, then what?” I hope that this book will be read widely in the disability community, as it offers hope, love and tenacity when the future looks bleak.

Picking Beans at Round Hill Park

September 19, 2010

 

 

I’d passed the sign hundreds of times:  “Round Hill Park.”  Some day I’ll check it out, I’d promised myself.  That day was last Tuesday.  I spent a gorgeous late summer morning and early afternoon picking organic beans.  Thousands of beans.  Fistfuls of beans.  Green, yellow and purple beans. 

Joining me were Bryan Ritti, farmer, and COO of FarmsCorps, Inc., a social enterprise created to support aging farmers, local food banks, and regional agriculture organizations.  This summer he and Chelsea Attwood have co-managed the farm operation at Allegheny County, PA’s Round Hill Park, an oasis south of Pittsburgh, just off of Route 51, near Elizabeth.  Bryan spent two years in a monastery, so the solitary life of a farmer is natural to him.  Like many of today’s new breed of young farmers, he is smart, dedicated and passionate about living  off the grid  and off the land.  For lunch he devoured raw kale on homemade almond bread and chased it with a just-off-the-vine super ripe tomato. 

Also picking was Lauren, an educator from the Outdoor Classroom. She is also a gleaner for the Greater Pittsburgh Community Food Bank, one of the lucky recipients of the bounty produced at Round Hill’s cultivated acre of fruits and vegetables. Organic kale, okra and string beans are a far cry from the rotten apples I saw the last time I volunteered at a local soup kitchen.  Thanks go to the Pennsylvania Association for Sustainable Agriculture (PASA) for this outcome.  PASA, one of the largest state organizations supporting farmers and a sustainable  lifestyle is remarkable also.  They provide mentors for young farmers like Bryan who have chosen farming as a vocation.

So why am I  spending a day picking beans?  First, it is a delightful way to soak up, instead of supplement, my deficient Vitamin D. Second,  Bryan and his contemporaries interest me because, I believe they hold the health of the next generation in their hands. 

Today’s new farmers live and breathe the mantra of “Eat fresh and local.”  My car sports a bumper sticker with that message.  In season food that has traveled only a short distance tastes better.  Food that comes from your neighbors supports your local economy.

Bryan and other twenty- and thirty-somethings are the parents of the next generation .  It is THEIR health that will determine the health of their children.  If they are toxic from pesticides, PCBs, phthalates, mercury, lead and aluminum, they will dump their personal toxic loads into their unborn children.  If they are health conscious, eating organic vegetables, using natural personal care products and cleaners, avoiding fish and other products with heavy metals and watching their electro-magnetic fields, their offspring will be healthy.  It’s that simple!

Bryan and his buddies have big plans. FarmCorps, a not-for-profit modeled on the Peace Corps and Americorps.  It collaboratively provides the critical labor needed for farmers to increase scale and diversity of production.  As a social enterprise project of New Sun Rising, FarmCorps serves local farmers while providing experiential learning and training opportunities in sustainable agriculture – from agri-tourism like the exhibit at Round Hill Park to farm succession. Crops produced in specialized FarmCorps programs are donated for public benefit as a part of FarmCorps’ aim to serve southwestern Pennsylvania through strengthening the local food system.

Inherent in FarmCorps’ mission is providing training and vounteer people power for the aging farmer families. Hopefully fewer will not have to yield to pressure of real estate developers to sell their family farms and succomb to suburban sprawl. With the lofty goal of providing services in all 50 states, FarmCorps is just getting organized.  When I suggested to Bryan that his farms would be viable potential homes for workers with autism, he lit up like a Christmas tree.  “Putting marginalized populations to work is one of our goals,” he said. 

In the next year, DDR is going to be exploring connecting with organizations  like FarmCorps to delve into opportunities for inclusion of adults with disabilities.  In addition, we will be meeting with trend analysts to determine how to connect with tomorrow’s parents to investigate avenues for educating them about having healthy babies. 

In the meantime, shop locally, eat seasonally, and enjoy the gorgeous fall weather.