Archive for the ‘Reflexes’ Category

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!  

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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.

Treat the Child Not the Diagnosis

August 16, 2010

 

The first photos arrived. The baby didn’t look “quite right.”  But all newborns are “funny-looking,” I told myself.  Don’t be an alarmist.  Keep your mouth shut, Patty!

A long career diagnosing kids’ issues; this one was really hard.  I have known the parents and grandparents of this infant for many years.  Nope, just be quiet.

He’s now three months old; the family is coming for a visit.  Wow, I’ll have an opportunity to get a closer look. I take a deep breath and enter the house. He’s very cute in an unusual way.  A little agitated; maybe he just woke up.  His parents try to calm him; not an easy job.  Bouncing seems to help.  

Can I hold him?  Sure.  I look into his pale blue eyes.  They appear to be wiggling back and forth.  A nystagmus?  Maybe.  Not a good sign.  I try hard to get eye contact. I make goofy faces, crazy sounds, dangle my keys in front of his face.  No response.  I hand him back to his daddy. 

Back home, I wonder, “What’s going on here?”  Vision is something I know more than a little bit about.  Why are his eyes wiggling?  I should be able to engage a three-month- old easily.

Maybe Goggle can help.  I type in a few key words.  There it is, in a nano-second: a diagnosis of a rare congenital anomaly.  All the symptoms are present.

Do they know?  The father and both paternal grandparents are physicians.  Of course they must know suspect something.  Or do they?

Now I have an ethical dilemma. I recognize the need to move quickly, know the importance of early intervention. If therapies start NOW, this little guy has a chance to maximize his vision and other abilities. 

With whom do I share my concerns? Maybe a loving great aunt, who supports my work. Perfect! She relates my perhaps premature diagnosis to her brother, the other grandfather   Now the dilemma is his.  He calls the doctor grandfather. No, he has not heard of this particular pathology, but he will ask his friend the ophthalmologist.  

A call back.  No, the diagnosis is faulty, because the baby has no nystagmus. What was it I saw, then?  Maybe it was intermittent, occurring only when he was tired.

Sit tight.  Baby boy goes for his four-month check-up.  The pediatrician has some serious concerns. He sees a nystagmus, makes grave conjectures about its source: a brain tumor?

Off to a pediatric ophthalmologist.  In another nano-second, my Google diagnosis is confirmed.  Prognosis unknown.  What to do now?  Wait and see!  Return in three to six months.  WHAT?  Waste valuable time.  Not acceptable!

The calls and emails begin.  First the grandfathers. How many cases of this rare condition have I seen?  NONE!  How did I diagnose it then? 

Google!  Then the grandmothers.  How did I know? I saw a baby with symptoms that I didn’t like. Are there any experts nearby who can help? Yes, I know two special people in the same town where they live!

Treat the child, not the diagnosis!  For over 40 years, that has been my mantra.

First stop, a developmental optometrist. Both eyesight and vision can be elicited with lights and other novel instruments.  Visual stimulation jump-starts some movements. She offers a positive prognosis, and a home program of visual, motor, and other sensory stimulation. Within a short time, he is responding with laughter and relatedness.  Great signs!

Next stop, a reflex expert.  Another home program. Keep stimulating his reflexes passively. Give him lots of “tummy time.” Within  a few days he can almost turn over. 

More calls.  The parents relate their gratitude and grief.  Instead of “wait and see” they now have hope and an action plan. They’re “on the case.” Not the scenario they planned, but one they can handle. In addition to the private experts, they have connected with a multi-disciplinary early intervention center and their local school system.  Perfect!  I encourage lots of “tummy time” and movement.

Still many questions. How well does he see?  Would some lenses, prisms or highly controversial surgery help him? What about further testing? A genetic work-up? Nutrition?  He is still on only breast milk. Should it be supplemented?  Will he be okay cognitively?  These are all unknowns for now.    

Bottom line. The baby’s diagnosis is just a label. No matter what the name for his condition, I would have sent this young couple to the same two experts. No matter where they lived, I could refer them to top professionals.  All of us have the same goal:  treat possible causes, not symptoms.  Use a developmental, not pathological approach. Stay positive. Work with strengths to enhance weak areas. 

As they recover from the initial shock, they will most likely need some psychological support. They have a child with a diagnosis, a possibly devastating reality for high achievers. They don’t know as I do that this outcome is an opportunity for them and their family to learn and grow.  They are unaware of the miracles that can occur. I am grateful that they have the love, time, money and other resources to do everything possible. And to start at only four months.  What a luxury!

The Medicated Child

November 15, 2009

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PBS stations nationwide ran a documentary last week on FRONTLINE entitled The Medicated Child. Marcela Gaviria produced this piece in an effort to respond to the dramatic increase in the number of children with serious psychiatric diagnoses, including bipolar disorder. The program also was to focus on the one-size-fits-all treatment with untested pharmaceutical medications that doctors are prescribing for these children. 

According to child psychiatrist Dr. Patrick Bacon, trying medications on young children is really an experiment…a gamble… we do not know what’s going to work. I tuned in with great anticipation, hoping at last to see some expert reporting on alternatives to drugs, whcih can cause serious short-term reactions and unknown long-term effects.  What I saw instead were many sick kids with black circles under their eyes, obvious vision problems and nutritional deficiencies that no one was talking about!

The trailer promised that the producer would “confront psychiatrists, researchers and government regulators about the risks and benefits of prescription drugs for troubled children.”  Yet this film and its doctor experts offered few alternatives.   

The Parents’ Guide written by Harvard Medical School child psychiatrist Joshua Sparrow to accompany the documentary “provides background on the issues associated with treating a child with psychiatric medications.”  Unfortunately, it too falls short of giving parents and teachers any practical alternatives. 

In the section entitled Observing, Describing and Understanding Your Child’s “Out-of-Control” Behavior, Sparrow offers several bullet points.  I reproduce them here with my edition of the type of information I wish he had provided.

  • Warning signs – Early risk factors for behavioral and learning issues include:
    • Missed developmental steps, such as no crawling  
    • Repeated infections, such as strep, ear infections
    • Skin problems, such as eczema and serious diaper rash
    • Chronic diigestive problems, such as reflux, diarrhea or constipation
    • An eye turn, called a strabismus
    • Hyper- or hypo-reactivity to sensory stimulation such as lights, sounds and touch
  • Triggers – All behaviors are reactions to something in the environment. Common triggers are:
    • Foods. Some kids’ digestive systems react to popular foods, such as dairy products, gluten (the protein in wheat and other grains), eggs, chocolate and soy.  In babies who have any of the above digestive warning signs, food is suspect.  The reaction may not be immediate.  I watched one child gradually dissolve an hour after a lunch of pizza and milk. 
    • Food additives. Artificial colors, flavors and preservatives, such as BHT cause behavioral issues in susceptible kids.  The Feingold Association has known this for years and is available to help.  Excitotoxins, such as fluoride, MSG and aspartame can all cause behavioral and psychiatric problems.
    • Pesticides and cleaners.  Many kids react to products used to exterminate bugs and eliminate bacteria.  Behavioral issues are more common on Mondays than any other day, due to schools being cleaned on Friday and closed up all weekend.
    • Chemicals from carpets, paints and other building materials.  Any building with new construction or renovation is suspect.  Formaldehyde from new cabinetry, fabrics and carpets can set off many kids.  The fumes from new paint are also toxic. 
    • Perfumes and air fresheners.  Some people become literally psychotic from breathing the artificial smells from these products. 
    • Contexts, settings – The cafeteria and playground are common “meltdown” arenas.  Why?  Because of the noise levels, bright lights in the former and possible mold, sprays and pollen in the latter.  I know one boy who acted out every time he went to the “reading room” where the teacher had placed a lovely, toxic, area rug.  Everyone thought he hated reading.  What he hated was the rug, and when it was removed, he was fine!
  • Symptoms – Symptoms are very individual and sometimes subtle. Doris Rapp, MD has been an expert on this for many years.  Some kids go into meltdowns.  Others may get spacey, talk too loudly, put their hands over their ears, stomp their feet, run in circles, scream, cry, kick, self-stimulate, throw things.  Some may be seeing double, become unfocused, stare out the window, look “depressed,” get sleepy, blink, look out of the corner of their eyes, fiddle with their clothes, masturbate, mouth objects. Any and all of these symptoms must be looked at diagnostically, rather than as behaviors to extinguish. 
  • Aftermath – Timing, frequency and recovery periods are crucial to evaluate. Keeping good records will help in the Sherlock Holmes process of pinpointing and eliminating triggers. 
  • Effect on overall functioning – Environmental reactions can interfere with a child’s learning, social relationships, sports performance and consume a family’s emotional and financial resources. Make changes for all family members and the whole class rather than just for the behaviorally reactive child.   

Consider non-pharmaceutical alternatives

If only FRONTLINE had included these interventions:

  • Change the diet – Consider eliminating colors, flavors, preservatives, excitotoxins.  Learn about Feingold, the Body Ecology Diet, the gluten-free dairy-free (GFCF) diet
  • Up the nutrition with foods and supplements – Add essential Omega 3 fats such as cod liver oil and flaxStudies show conclusively that good quality fats are efficacious alternatives to drugs
  • See an occupational therapist (OT) – Have the child evaluated for sensory integration problems by a private therapist who can pinpoint underlying reflex integration issues, tactile defensiveness, vestibular dysfunction or auditory processing problems.  Sensory-based OT can program the nervous system to respond in a more balanced way.
  • See a developmental optometrist (OD) – Make sure the two eyes are working together as a team and that the brain is giving proper meaning to what it sees.  With an eye turn, depth perception is impossible. Sometimes eye turns occur only intermittently and must be diagnosed by an expert.  Therapeutic lenses and vision therapy that includes activities to help the eyes and brain work better together can alleviate behavioral and learning issues.

Congratulations to FRONTLINE for recognizing the serious risks medications for bipolar and other disorders pose. We heartily  agree with them that research and insurance coverage for non-medication treatments are under-funded, and recommend that treatments such as these deserve further investigation.    

We can also concur that the forty-fold increase in the number of children and adolescents diagnosed with bipolar disorder over the past 10 years might be due to preventable causes. The simultaneous increase in environmental toxins, reliance on technology such as computers and television, and changes in food nutrient contents and genetic engineering are just a couple of obvious areas to    consider.

Thank you to the parents who took the time to tell their own stories of drug horrors and success with the Feingold program, naturopathy and other “natural’ solutions.  Add yours!  Maybe one day PBS will give us a useful commentary on how to prevent and help kids without drugs.  I sure hope so!  In the meantime, you can find out about more therapies that work in my book EnVISIONing a Bright Future

 

 

 

 

 

 

Radio Interviews – Listen in!

July 31, 2008

I have just completed three radio interviews about my new book EnVISIONing a Bright Future. What fun it is being on the “other side” of the table after a year as interviewer on Autism One Radio.  It’s amazing how much you can fit into a half hour with a good show host.  I was fortunate to be interviewed by the BEST!

First was on May 28th, with DC area nutritionist, Dana Laake, a long time DDR supporter and friend.  Dana’s show, “Essentials of Healthy Living™” is broadcast live Wednesday nights 5-6 pm on 1260 AM in the Washington, DC area.  If you are not in range, you can listen online at www.progressivetalk1260.com . This show is sponsored by The Village Green Apothecary in Bethesda, MD, another long time friend of DDR. Look in your new 2008 DDR Directory, which you should receive next week, for a discount coupon for nutritional supplements from the Village Green.  They also have copies of my book for sale. To listen to my interview, click on http://ehlradio.com/ArchivedShows/Index.htm

On July 9th, I was jointly interviewed by Chiropractor Larry Bronstein and Special Educator, Deborah Alecson, of CHILD Treatment and Consulting Services, on WBCR, 97.7 FM in Great Barrington, MA for their program, “Food For Thought: Children, Nutrition and Learning.”  We had a lively hour-long discussion of the various treatment options described in my book.  Since the station does not archive shows, I have the program on a CD.  As soon as I figure out how to upload it, I will put the link here.

For the above two interviews I simply dialed a phone number, and was magically broadcast live on the airways.  For my third interview, on July 23rd, I drove to Pittsburgh’s South Side to the studios of the Radio Information Service, a radio reading service for people with visual and physical disabilities.  There I was greeted warmly by Marilyn Egan, the host of ‘Towntalk,” who fitted me with a microphone and showed me how to use the “cough box,” should I feel the urge.

I had met one of the show’s co-producers, Joyce Driben, at a Disabilities Awareness Fair at PNC Park one beautiful evening in June, when the Pittsburgh Pirates honored individuals with all types of disabilities. Sight-impaired, Joyce had used a special machine to write down my phone number in Braille, and had her co-producer Jeanne Kaufman call me to set the date for my interview.  Radio Information Service (RIS) has been reading all types of print materials from newspapers to magazines, advertisements, books, death notices, and even TV listings to people with eyesight loss due to many causes for over 30 years. Qualified listeners can tune in for a small fee.  To listen to Joyce’s targeted interview of me, go to www.readingservice.org Click on “Listeners” and log in with the User Name: volunteer, and the Password: guest05.  Then click on Towntalk to hear the archived show.

I thank all those who have made these interviews possible and would be happy to do any others.  Please let me know if you have access to other opportunities.