Archive for the ‘Nutritional Deficiency’ Category

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!

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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

 

 

 

 

 

 

A Thanksgiving Lesson in Diet and Nutrition

December 16, 2008

Owner wrote:

A Thanksgiving Lesson in Diet and Nutrition 

Thanksgiving with my family was a glut of gluten, dairy and sugar.  “Patty, you bring the vegetables, because you’re the only one who will eat them anyway,” my cousin said.  So I cooked up some organic Brussels Sprouts and green beans.    Llouise, our wonderful DDR newsletter designer provided me with a new quick and delicious recipe for the mini-cabbages.  I cut them thinly and sautéed them in a bit of oil with lots of garlic until they were bright green, added some organic chicken broth and let them simmer for about 5 minutes.  A little lemon juice, and voila:  delicious!  The green beans went into the steamer and were topped with toasted almonds. 

You can guess the rest of the dinner:  a golden brown Butterball turkey complete with pop-up button, mashed potatoes, gravy, sweet potatoes with marshmallows, and stuffing.  I cringed at the origins of each, which were confirmed by the jars, cans and wrappers on the kitchen counter. 

The next day, a visiting relative complained about her chronic arthritis for which she had received several cortisone shots, and was taking a strong prescription pain killer.  I asked if she would consider some dietary changes that could possibly relieve her pain. I reminded her that several years ago when she was experiencing digestive problems that a wheat-free diet had not only fixed her tummy issues, but had resulted in considerable weight loss.  She had stopped it “because it was too hard!”  Now that she was in pain, she was willing to try again. 

I took a more complete history this time.  Knowing that she ate a daily salad for lunch I asked her what was in it, and if she ate it EVERY single day.  Yes, she did, and it included tomatoes, green, yellow and red peppers, topped with green olives stuffed with pimentos, and accompanied by potato chips. I related that these ingredients are all members of the nightshade family, and cousins to belladonna or the deadly nightshade, a plant whose leaves, berries and roots contain atropine, a poison that can kill those who consume it.  Also interesting is that tobacco is another member of the nightshade family, and the relative in my case study smoked for many years.  Did one addiction lead to another?

If nightshades don’t kill you, they can make you hurt. How? By causing inflammation. Some other known side effects are vision problems, confusion, and yes…sore joints. According to the Arthritis Nightshades Research Foundation (www.noarthritis.com) both scientific research and anecdotal evidence support nightshade avoidance. 

My relative is now nightshade- and wheat-free for two weeks.  Her results are extremely encouraging. On a scale of 0-10, she rated her pain without medication a 9 during Thanksgiving.  She now estimates her pain at a 1, and is medication-free, hurting only slightly in one hip when descending stairs.  A bonus is that she has lost 10 pounds!  She is also taking some vitamin supplements and natural anti-inflammatories. 

Bottom line: Approaches we have found helpful in autism and related disorders also work for other health issues.  Before reaching for prescription medications:

  1. Investigate possible causes and eliminate exposures
  2. Reduce inflammation with natural anti-inflammatories

Will keep you posted.    

 

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.