Posts Tagged ‘autism’

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I have shadows that dance around,
In the walls of my brain.

They whisper about moments I
Sometimes allow to stir.

Conversations with doctors
Advising me before that final shot.

So many coincidences and uncertainties.
That last one changed our whole world.

No fear that he was too weak.
None realized he was allergic to ingredients.
Contraindications be damned –
Hospitalizations following vax coincidental.
The dots did not connect.

He was so sick, so weak and I thought I was protecting him.
Our duty for the greater good.

I don’t reminisce there often.
Those dark shadows still sting, too much.

#MINE – NO to #SB277 – #B1LESS

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It’s been far too long since I’ve posted an update on our NAET journey. Life has been full of twists and turns, as it often is, and time has been difficult to find for updates. For those that have been curious, we are now two years deep into NAET treatments for our son. We’ve had some financial struggles over the past year and a half, so treatments have not been as frequent as I’d like. However, we continue to eIMG_0315xperience vast benefits from each treatment, so we will continue along this path.

Today, my son is thriving. He’s mainstreaming in a general ed classroom full time and has an aid to help him. We are hopeful that his aid will successfully be phased out over the next year of school. Mr. W. has exceeded all academic expectations, made real friends, and gained improved social skills from his peers. It’s been a wonderful year and we’re very proud of all of his accomplishments.

W still struggles with gross motor coordination and fine motor strength. We will continue to work on this, we’re still trying to master riding a bicycle. However, the Big Wheel that his Gran just bought him is a really great start. It simplifies the process just enough that he can relax and simply have fun with it. Slowly, he’s building up the muscle memory that he will need to be better at riding his bicycle. He’s finally getting the hang of the concept that you have to steer and pedal simultaneously. (It’s those simultaneous gross motor tasks that become truly overwhelming.)

I’m grateful that we discovered NAET treatments and will continue to take my son to Dr. Chernoff for future care. With every step we take, we get to understand more underlying puzzles that conventional doctors could never resolve.

All my best,

Muckraking Maven

I’ve been thinking about Disney’s elimination of the GAC and its accompanying accommodations for weeks since the first rumors of such a change leaked.  In the beginning, I worried that my anger and frustration stemmed from my typical resistance to change.  I made several calls to Disney HQ, but did not get very far.  There was little insight to glean from those calls as everything was initially denied, then noted as confidential.  Their representative did try to head off my anxiety with reassurance that their executive management team was listening to the Autism community and putting thoughtful consideration into the development of an alternate program.  Well, today is October 9th – the day of GAC death and DAS birth.  Disneyland’s newly posted services web page makes it very clear where to root of my sadness on this issue resides.  The new services page demonstrates the total lack of understanding or compassion to the cognitive differences our children cope with everyday.  In essence, this new policy reads with the same awful lenses so many of us spectrum parents have become accustomed to in our everyday lives.  Read it and tell me if you don’t get the tone of, “Buck up and do a better job parenting your cognitively disabled child so that your children can enjoy our park with the same expected behaviors of neurotypical families.”

The, “How to Prepare,” segment of this page was especially insulting – especially considering how so many of us already make good use of the standard communication tools.  From PECS to visual schedules, watching videos, and studying maps, I can assure the executive staff at Disney that most of us Autism parents were introduced to such basic concepts back in the days of early intervention.  Yes, these are effective tools, but most of us already employ these measures and more to prepare our children for any necessary scenario.  I’m a pro at  writing social stories for my son – I’ve even made the occasional video – and yes there were days that we relied heavily on a visual schedule.  However, none of these tools can adequately prepare a child with cognitive disabilities, including sensory dysfunction, for the disruption to routine planning that is inherent with visiting an amusement park.  Furthermore, the mere suggestion that we practice waiting in line is absurd.  Most of us are already doing this in an attempt to push our child’s tolerance to a more acceptable level – and yet our children still have severe limits with waiting.  There are no local venues with the same level of sensory overload and hostility as one might find inside the gates of Disneyland.  I’ve also got to say that if Disney really thinks that simply bringing a sensory toy, “like a stress ball or other calming item,” will prevent a child from experiencing sensory overload, then perhaps the managers that crafted such trite advice should spend 100+ hours with a licensed occupational therapist so that they can truly understand the real world impact of sensory dysfunction.

I am sad that Disney’s position appears to be that our children can handle the new DAS without accommodations that enable our children to wait for their turn at an uncrowded alternate entrance to attractions.  I am sad that they believe that our children can cope with a loud and boisterous crowd, while waiting in line, if we only pacify our child with electronic devices.  Devices that many smart parents would worry about breaking or losing during such a visit.  I don’t have money to replace my son’s iPad; I’m knee deep in out of pocket medical costs, $100 fish oil and other learning aids/therapies.  I do not understand why Disney would not make some compromises to the new program – including the ability to schedule multiple attractions at their guest services kiosks.    Not every child with mobility and strength issues is in a wheel chair.  Children with metabolic disorders and mitochondrial dysfunction also cope with strength and endurance.  There is an entire range of biomedical and physiological conditions that co-morbidly affect children with cognitive disabilities.  The need to return to service kiosks for every attraction is debilitating and draining.  Surely it would be possible to schedule 3-4 attractions at one time.  This would make such a procedure more amicable for children with cognitive disabilities.

I am hopeful that the peaceful protest arranged by McClain Special Needs Advocacy gets the media attention needed to turn this change into a public relations nightmare for Disney Parks.  I am praying that their executives will actually listen to our community and offer some compromise that doesn’t read like the biased-inadequate-parenting-garbage that so many of us must encounter in our daily routines.  Is Disneyland the happiest place on Earth?  No longer, if you possess a cognitive disability.  What I have gathered from Disney Parks latest action is that they no longer care to pretend they accept or understand the differences and challenges of cognitive disabilities, like my son’s Autism.  Game over. The final bell of magical happiness for my child’s future vacations at Disneyland has tolled.

Information on the New Disney Parks Disability Access Service Card

Services for Guests with Cognitive Disabilities

I know I’m a bit belated in posting updates about my son’s NAET journey.  I suppose that’s because our life gets so chaotic and crazy sometimes.  It’s just par for the course really with my spectrum kiddo mainstreaming kindergarten and an eighteen year old beginning his college journey.  Oh, and we can’t forget about our fifteen year old beginning his sophomore year of high school either.  We’ve had back to school fun, the subsequent illnesses that always seem to follow returning to public classes, and an extremely hectic workload for the past few months.  I’ve got a running list of social stories to write (needed as of yesterday) as well as many issues to vent about in our world.  Today, I wanted to focus on happy, so this update seemed most fitting.

We are now 6 treatments deep into NAET with my W and are still overjoyed with the progress these homeopathic treatments are providing.  I’ll use the same format as before and list the most significant and notable improvements:

  • Greater understanding of family relationships:  Understands that he has cousins and that these are the children of his Aunts & Uncles.
  • Continued improvements with communication.  Better able to spontaneously communicate his wants and needs – including sharing specific details about illnesses. (Able to tell me that he has a headache, tummy ache, etc.)
  • Improved conversation and less wary of people he doesn’t know.  Even striking up conversations with strangers in stores and restaurants now.
  • Increased curiosity and ability to ask questions regarding the meaning of various words and things.  Now, he fires off questions like a machine gun firing.  “What’s direction mean, what is combust, what is a gymnasium, what is a conjunction, what’s the biggest word in the dictionary…”
  • No longer screaming in protest if I join him in a song or dance.  In fact, we recently sang a song together for the first time after his third treatment.
  • Keratosis pilaris rash on upper arms is nearly gone.  Bump under right eyelid is much smaller as well.
  • Increased joint attention and interest.
  • Improved patience, flexibility, and waiting.  Better able to understand verbal explanations without visual aids.
  • Increased fine motor skills – able to manipulate small parts on various toys without help. (i.e. attaching the diving hose to his Octonaut Gup C and Captain Barnacles, fixing the treads on his Walle robot)  Even willingly sat down to draw and write the other night.  (This NEVER happens without much protest and fighting and he initiated this on his own, happily!)
  • Better control of sensory overload – particularly hand dryers in bathrooms.  These used to result in W running, screaming, and crying.  Now he’s able to cover his ears with his hands and tell me he doesn’t like the hand dryer.
  • Requesting play frequently – wanting to engage in imaginary play more often with greater flexibility.
  • Increased eye contact – especially when requesting something he wants – almost to a comical point.
  • Improved awareness of his surrounding environment and better reading comprehension.
  • Better able to cope with crowds and social events.  W is an Easter Seals Ambassador and attended their family bowling bash last Saturday.  We were shocked with how well he handled the boisterous loud event.  He was a social butterfly shaking hands, answering questions, and even hugging strangers that work with the Easter Seals.  I am still amazed at how well he handled the entire event & we also learned that W really enjoys bowling of all things.  I think we have some family bowling outings in our future, for sure.

W_bowling_ambassador

 

I’ll finish this update with a cute story about a book we were reading a month ago before bedtime about the Octonauts and the Frown Fish.  There is a part of this story, where the main characters decide to have a costume party and they all dress up in various costumes.  One of W’s favorite characters, Captain Barnacles is dressed in a Hamlet costume.  I’d never mentioned this to my son – instead we often focused on the more easily recognized costumes like pirates, princesses, and fairies.  W likes to assign agent names to the characters on this page for fun.  Each agent name is formed with the first letter of their name, or in this case, their costume’s name.  When he pointed to Captain Barnacles, he stated and there’s Agent H.  I said H are you sure?  W’s response was, “Mommy, because Captain Barnacles is wearing a Hamlet costume.”  I asked him how he knew about Hamlet and he told me, “You know, that guy Shakespeare.  I know about him.  I know some things.”  Now, I can assure you that we’ve never discussed Hamlet or Shakespeare, but this simply blew my mind.  He looked me dead in the eyes for the entire conversation as well.

I’m looking forward to continuing our NAET journey.  So far, I’m amazed with all the positive change my son has experienced and will continue on this path as long as it provides benefits.  If you’re interested in learning more about NAET yourself, check out the research study led by Dr. Jacob Teitelbaum on Improving Communication Skills in Children with Allergy-related Autism Using Nambudripad’s Allergy Elimination Techniques.

All my best,

Muckraking Maven

Last week, my husband and I were excited to meet a new, developmental pediatrician that has received rave reviews from many Mothers in our area.  The clinic is prestigious and known for providing expert and timely help for special needs children coping with a wide range of complex to serious medical issues.  We were hopeful that this may be the very doctor we have been searching for to really listen and consider my son’s health needs – without the fast paced cookie-cutter approach favored by so many doctors today.

Overall, the appointment went well enough.  My son’s doctor was gentle, understanding, and very kind throughout the exam.  He had a calming effect on my son that was never present with any previous physician’s.  However, when we got midway through my 4″ binder of Wyatt’s medical history, we screeched to a halt on the matter of vaccinations.   Now, this is not a new debate to me, nor is it a surprising one, but I was a little surprised at how close-minded the doctor became upon discussion of the known risks and potential for vaccine damage in children with a predisposition to adverse reaction.  He waved it off nonchalantly with a mention of how many parents are misguided by celebrity-driven medical advice and quack-extremist websites.

I can assure you that I am not misguided, when it comes to my son’s health.  I doubt many parents have journaled, logged, and tracked data like I have over the years when it comes to my son’s autism and the ebb and flow of behavioral challenges or health concerns.  I periodically track his nutrition by reviewing his diet closely a few times a year on a spreadsheet.  (Yup,  I’m OCD about this stuff.)  This ensures that I’m packing as much nutrition as possible into the meals he is willing to eat.  If a questionable or negative behavior arises, I chart its occurrence – as well as the events preceding and following such an event.  This helps me to uncover a root cause to address.  When in doubt, I create a social story because this is the most effective means for my son to quickly understand expected social cues and upcoming new experiences.  I inhale scientific studies with my morning coffee on a wide range of subjects.  I read beyond a study’s Abstract, even if this includes 50+ pages on average, per research paper.  My opinion on the vaccine-autism link is steeped in personal experience, 60+ scientific research studies, and the fact that my son continues to improve as we improve his diet, reduce his exposure to toxins, and gain success through homeopathic means (NAET) proven to help reduce negative autoimmune responses.  If Autism were solely genetic; why would simple interventions like diet, supplementation, and natural detox be so effective in reducing his “Autistic symptoms?”

I am ready for more debate with this doctor and know we are game for real investigation into the root cause of past vaccine reactions.  He has referred us to an immunologist for further testing and digging – so I’m hopeful that this may provide some of the answers we’ve been trying to find for years.  What’s on my wish list?  I want to know if my son has a sulfate or glutathione deficiency, metabolic dysfunction, or methylation pathway abnormality before I consider any future vaccination.  I’d like answers for the continued G.I. complaints, that are now much improved, yet lingering with undetermined cause.  If there is a way to correct such a deficiency upon discovery, then this may enable a path where my son could be safely vaccinated in the future – but only with a single dose, milk-protein free, G.E. yeast free inoculation – and only for truly critical vaccines NOT flu shots.

If you doubt the potential for adverse reaction, browse the list of more than 60 peer-reviewed scientific studies that demonstrate a vaccine-autism link.

If you doubt the potential for adverse reaction, browse the list of more than 60 peer-reviewed scientific studies that demonstrate a vaccine-autism link.  It’s quite impressive and revealing.

I am so grateful for Ginger Taylor’s excellent list of studies supporting a vaccine/autism link.  Shared by a friend online, this resource couldn’t have come at a better time; since my notes are scattered here and there in all manner of folders .  Why do so many doctors rely on research conducted decades ago?  How can they not question the rising prevalence rates (1 in 88, now 1 in 50…) and environmental factors?  Why are they not aware of a vaccine’s ingredients or FDA mandated contraindications?  Why do they like to lean on studies like this that report incomplete data that skirts around the real questions;   like this recent study by the Journal of Pediatrics?  This study is often cited as the proof that any vaccine-autism link has been reputed, which is simply not the case.  This particular study focuses solely on the potential for adverse reaction with regard to the antigens and polysaccharides within vaccines, not the presence of heavy metals like Hg and Al, or the impact of genetically engineered ingredients like yeast, aborted fetal tissue, or other questionable ingredients.  Well done, JPEDS, I agree that the antigens and sugars are unlikely to lead to an Autism diagnosis…but what about the real questions that remain here?

When I get mad, I educate.  When I face opposition, I naturally debate an issue.  The list created by Ginger Taylor is AWESOME and I wanted to share it to help any other families that have experienced adverse reactions in their children’s health.  Vaccines do not harm all children and in theory they are powerful allies to our health.  However, I don’t see the need for heavy metals, formaldehyde, and other toxins to remain in the mix.  Take these ingredients out!  Reduce the vaccine schedule and eliminate combination series shots.  Is there a possible connection between the use of genetically engineered yeast in the Hep-B vaccine and my son’s recurring yeast overgrowth? (I believe there could be.)

I don’t understand why my son’s doctors wouldn’t be more concerned with the presence of allergens that are known to cause severe reactions in children with these conditions!  (My son has a long history of severe food allergies and intolerance – but somehow this is not a concerning factor.  Milk proteins cause intestinal bleeding in my son – I would imagine that a shot containing milk proteins is far worse than simply eating a food containing milk proteins.)  In fact, I believe this is why he had to be hospitalized for a week after his DTAP series of shots when only 2 months old. )  In brief, when there are 60+ studies that exist that do show potential for causation, why aren’t we pre-screening our children to ensure the noted deficiencies do not present a predisposition to vaccine damage prior to immunization?  I’m not asking for any weird science here…why wouldn’t we want to reduce potential risks in a product that is inherently not safe?  (And that’s exactly how our FDA puts it, “inherently unsafe.”)

Checkout Ginger’s up-to-date list on her blog.  Print it out and keep it available for easy reference.  Do you think my son’s new doctor might question the existing dogma if I printed out a hard copy of each referenced study?  I think that’s how I’m going to handle this.  Could you imagine the look on his face if I brought in 68 printed peer-reviewed scientific studies – delivered to him at our next appointment in Trader Joe’s paper bags?!  (Yea, because I recycle…and have far too many of these bags saved up as it is.)  Do you think he’d believe that I don’t rely on celebrities for my information after that?!  I welcome the immunologist’s perspective and ability to help sift through potential root causes of my son’s past adverse reactions.  Despite our difference in opinion when it comes to vaccines, this is a step that no previous pediatrician has been willing to do.  For that, I am truly grateful.

Take care,

Muckraking Maven

There is something I’ve been wanting to write about for over a month, now.  It’s a very personal account of our son’s introduction to NAET.  I cannot deny the powerful positive change the first treatment has provided.  However, I wanted to hold my breath, just in case it didn’t stick.  We are anxiously awaiting our next visit with Dr. Marilyn Chernoff and have much hope for continued improvement in our son’s allergies, immune system strength, and general wellness.

I first learned of NAET last winter.  It was a brief mention in a string of comments on a blog – I can’t remember the name.  Something about that word, “NAET,” got stuck in my brain and soon I was Googling it to learn what it was all about.  Honestly, at the time it seemed pretty over-the-top in concept.  However the treatment was based on acupressure (pressure not needles) and was non-invasive and completely holistic.  From this point, I continued reading about this innovative treatment helping many children with allergies, individuals with chronic pain, and even some children with autism.

I inhaled a study overseen by Dr. Jacob Teitelbaum that compared a control group of children on the spectrum with a group, also ASD, that underwent NAET treatments for one year.  At the end of this study,  a majority of the children in the NAET group experienced substantial improvements in allergic reactions, communication, eye contact, and unresolved ailments (such as eczema, stomach pain, etc.).  More detail on this study and its innovative discoveries can be found in an article featured in a fairly recent Psychology Today article,”23 of the 30 children receiving NAET returned to regular school classes with their typical, non-autistic peers – as opposed to none of the 30 untreated children in the control group.”

The article further cites, “The children receiving NAET also demonstrated both statistically and clinically highly significant improvements in all four autism-related outcome measures:

  • 64 – 82% range of decreases in the 4 ATEC tests.
  • 47.4% average increase in the Childhood Autism Rating Scale (CARS) – another well respected assessment tool.
  • 85% decrease in total Allergy Symptom Rating Scale (ASRS) – a tool for evaluating allergies.”

This study, and the way that this therapy captured my interest  out of left field compelled me to buy Dr. Devi Nambadripad’s books, “Living Pain Free,” and, “Say Goodbye to Allergy-Related Autism.”  Along this path, I met a wonderful lady in Louisiana who shared her son’s success story with me on several phone long phone calls.  I also exchanged emails/chats with two other mother’s whose children had experienced great improvements upon engaging in NAET therapy.  It was something I simply had to try.

My dear hubby thought I’d finally taken the crazy train out of Fresno with this “hare-brained” scheme, but I couldn’t and didn’t let it rest.  I was totally OCD on this subject and finally made the great leap of faith this past May despite my hubby’s voice of reason.  To prep my son, I created a social story that detailed the doctor we planned to visit, how the procedure would progress, and what to expect.  We watched videos together on YouTube of another child receiving NAET and talked about the process as much as he was able to communicate.

Here is a short video of my son getting ready to go meet Dr. Chernoff and try our first NAET treatment.  Dr. Chernoff confirmed many things I’d already suspected about my son’s health and immune system.  He was far too sick to receive the vaccinations he did his first year of life.  In fact, his G.I. problems at the time were listed as part of the vaccine manufacturer’s FDA mandated Contraindications – my ped should have used more caution.  (If the GI problems weren’t enough to warrant more caution, my son’s milk protein allergy should have ruled the vaccines out at that time – as many contained milk proteins – and coincidentally led to hospitalization for intestinal bleeding.  If I’d known better…well, you know how that story goes…  In any case, my son has had a myriad of challenges due to severe food allergies, vaccine reactions (involving hospitalization), and intestinal bleeding.  Dietary changes have made a huge impact in his health, but we’ve still dealt with lingering, mystery allergies – that no doctor has provided potential answers for.  They all just want us to give him Claritin, allergy shots, etc. and stop worrying about the root cause.  I am MOST concerned about the root cause and believe that Dr. Chernoff in combination with our DAN doctor, may just help us to get there.  On our first visit, we discussed my son’s medical history at great length and then she checked to see what substances he may be reacting to.  Her initial evaluation revealed that W has trouble with Vitamin C, milk proteins, eggs, corn, and other popular allergens.  She began his treatment by treating him for Brain-Body-Balance paired with Fear to alleviate some of the emotional fear he harbors due to so many negative medical experiences.  For the sake of brevity, here is the short list of improvements tracked in my daily journal within the month after NAET:

  • Sleeping through the night in his bed, nightmares not waking him.
  • No more need for melatonin to get to sleep and stay asleep.  Prior to NAET we were giving him 3mg of melatonin nightly.
  • Improved conversation and spontaneous communication.
  • Improved gross and fine motor coordination.
  • Decreased sensory hypo- and hyper-sensitivity
  • Improved muscle tone in legs, emergence of age-appropriate reflexes, and notice W now gets dizzy fast.
  • Developed interest in Paparazzi-styled photography and videography inside the Moore house using the iPad.
  • Increased patience with good waiting.
  • Improved use of words and reduction of tantrums.
  • Desire to be more engaged with us, requesting play together more often.  Playing more frequently in his bedroom, happily occupied with toys.
  • Improved imaginary play – not dependent on scripts or “practiced” routines.
  • Improved social engagement with family and friends – and their children.
  • Disappearance of chronic rhinitis due to undetermined allergies.
  • Introduction of arguing, bargaining, and general disagreement on potty prizes, meals, and various part of our daily routine. (His conversation has essentially leveled-up to the point that everything is a bit of a debate – but this makes my heart so happy!)
  • Not as enchanted with his plastic magnetic letters and numbers – more interested in toys – and playing with them appropriately.
  • Less need for a visual schedule or story strips because we’re finally able to talk through a scenario verbally, with understanding.

You can see why I’m amazed with the potential for NAET.  Now, I fully understand that this is not a treatment that will work for every child, but there’s enough potential here that some of you may wish to learn a bit more about it.  I know that I can’t technically “cure” my son’s autism.  It’s a neurological disability and it will be here throughout his entire life.  However, if I’m able to provide real relief by determining the root causes to his allergies, G.I. upset, sensory dysfunction, and even physical coordination, I don’t see any reason to stop this train right now.  This is one holistic journey that I intend to follow through.  I’ll keep sharing as we progress on this journey and hope some of this information may be helpful to another.  My son put the effects of NAET in his words best, “Dr. Marilyn Chernoff helped make my body feel better.”

I’ll close with a short video of my son having his first spontaneous and productive conversation (not scripted) the day after our treatment.  The benefits continue to surface each day and I’m very excited about our next visit, coming soon!

After the first NAET treatment our son was happy and engaged, almost immediately.

After the first NAET treatment our son was happy and engaged, he was more physically coordinated and aware of his body in space, almost immediately after leaving Dr. Chernoff’s office.

Like any kiddo there are many foods that my son has come to prefer over the past 4 years. Since I became aware of genetically engineered food and its potential for harm, I have become adamant that he not eat GMO-containing foods. Let me tell you this is neither easy nor pleasant for its a very tough change for my 4 year old with Autism to understand why he can no longer have his Kinnikinnick animal crackers or chocolate-vanilla sandwich cookies.  What’s worse? We deal with some pretty severe picky eating and have already invested in several rounds of food therapy…making this switch even more challenging.

My little guy can read exceptionally well. He’s informed me that he doesn’t want any veggies in his juice. (Already checking out the labels…) He’s begged me to bring back his Juicy Juice and even argued with me at the store telling me, “Look, it’s 100% natural for 100% kids!”  Now he responds with, “Oh no! GMOooos!” Still not totally getting it, but I simply won’t budge on this one. It’s truly in his best interest to eat organic whole foods. His health has improved immensely since this dietary adjustment was made last August. He gets sick less often, has less upset tummy, and genuinely seems to feel better.

I decided to contact the food companies with products my son misses most and was seriously disappointed with the results. At the very start, I don’t even understand why it’s that much harder to find GFCF foods without GMOs. The children that eat these foods already have many issues with food allergies, G. I. complications, and the like. Why would genetically engineered food be considered a good idea?

What really got me going was the Ian’s website, which allows for a convenient search by allergen. They even have a checkbox for GMO Free, and yet when I click this box in combination with Gluten Free and Casein Free the results equal a big fat zero. From 18 products down to none! Why do they only offer GMO free/organic selections for the products containing wheat, gluten, milk, etc., and not the allergy-friendly selections?

Here is the handy search page for Ian's foods.  You can see that I've checked off 4 allergens - wheat, gluten, milk, and casein free.

Here is the handy search page for Ian’s foods. You can see that I’ve checked off 4 allergens – wheat, gluten, milk, and casein free.  There are 18 products available within these search parameters.

Here, I've performed the same search with the addition of GMO-Free.  18 choices disappear...

Here, I’ve performed the same search with the addition of GMO-Free. All 18 choices disappear…

Why is it so much more difficult for food producers to source GMO-free ingredients for children with food allergies?  There are 5 choices available - unless you're allergic to wheat, gluten, milk, or casein.

Why is it more difficult for food producers to source GMO-free ingredients for children with food allergies? There are 5 choices available – unless you’re allergic to wheat, gluten, milk, or casein.

I called Kinnikinnick to discuss their foods and got a scripted response from their customer service rep. She shared that their products are 80% free of GMO ingredients and that if they do decide to change and source non-GMO ingredients it will be a long transition-likely 5 to 6 years or more to complete. She encouraged me to believe the FDA position on GE food safety and also discussed the standard-BS-rhetoric everyone seems to spew about labeling costs, package redesigns, and other complications.  Oh well Mr. W, it looks like we’ll be waiting 5-6 years before we try another Kinnikinnick cookie or cracker.

I was so fired up after that call that I drafted and sent an email to the president yesterday at Kinnikinnick. You can imagine how surprised I was to get a fast reply. He agreed that the labeling issues were minimal, but shared his insight to the underlying problem concerning the economics of sourcing non-GMO ingredients. Now, I understand the basic concept of supply and demand, but was disappointed at his complaints concerning premium cost for the purchase of said ingredients. I don’t know about you, but if your child is on the same diet as mine (GFCF) you’ve been paying premium prices all along. In fact, for $5.99+ for a small box containing only 10 or so graham crackers, I’m surely paying premium pricing for Kinnikinnick.  Why should I feel sorry for a lucrative corporation that wishes to cut more corners under the guise of necessary profit when the health of my child is at risk?! Bah!!  Work it out, and faster than half a decade people! We Mothers have become intolerant to the industry’s lackadaisical attitude surrounding the elimination of genetically modified ingredients!

Here is an excerpt from the President’s email (Jerry Bigam):

The packaging is only a minor problem and easy to resolve1I will talk to my staff to make certain that they have the proper response2.  The only problem is that there is not a simple answer to your question.    The major problems associated are primarily economic.   In short, non-GMO ingredients are considerably more expensive than regular products –  Generally speaking most of these ingredients are at least 25% to 30% more expensive. In addition the supply of many of these ingredients is not as reliable as with conventional products3.  At the moment, food processors like ourselves must rely on the supply of ingredients from independent suppliers.  There are simply not enough non-GMO ingredients to meet market demands and until farmers decide to plant much larger crops of non- GMO varieties the processing industry will have great difficulty sourcing the necessary ingredients.   Since the GMO varieties generally provide a significant increase in crop production for farmers it has proven very difficult to reverse the trend since these varieties provide better returns for their annual farming efforts3.  On a side note, a recent article I read noted that GMO varieties are responsible for about 25% of the world’s food supply and a shift to non-GMO will have major problems around the world…

I might add that in the cookies you mention that all the items are non-GMO except for the Canola, glucose and soy lecithin4.  I would also add that we have taken a great deal of time and effort to make allergy friendly foods.  All of our foods are gluten free, dairy free, tree nut free, peanut free and some are also egg free.  The addition of the non-GMO condition to all of these allergy friendly foods is a major problem which is just becoming an issue5.   If consumers in general decide that non-GMO is the way to go then that may force many of the ingredient manufacturing companies to produce the varieties that processors like ourselves would prefer to source.”

Now, I have several things to point out from the above statement:  1. First, here is another insider’s admission that the labeling/packaging complaints are a minor problem.  2. The awareness of GMOs and their potential for harm is spreading – so much so that this food manufacturer has provided their representatives with a script.  3.  Non-GMO crops have been proven to provide better yield with increased nutrition as compared to popular GMO crops.  There is no truth to the supply of non-GMO crops being less reliable than competing genetically engineered varieties.  See this comprehensive info sheet for more detail from The Non-GMO Project.  The President does discuss an important point regarding the need for farmers to make a definitive switch to non-GMO crops before food producers will begin switching out GMO-containing ingredients for more “real food” choices.  This is an unfortunate, but true fact. However, I’d like to point out the truth that our momentum continues to grow and pressure these companies with each passing day.  We simply will not give up on labeling GMOs, in fact, a large number of us want them banned entirely!

4. Any amount of GMO ingredients will not work for my son – so it’s not comforting to hear that only 20% of the ingredients are GMO.  As if the presence of genetically engineered glucose (from corn-likely RoundUp Ready or BT), soy lecithin (from likely pesticide-resistant GMO soy varieties), and canola (from rapeseed – likely pesticide-resistant varieties).  20% risk is too much for me!  5. I’m still getting over my initial shock that GMO foods entered the market as early as 1992 with little notice or knowledge.  I’m glad to see that this is becoming a bigger thorn to our food producers – that means we’re getting closer to that tipping point we’ve been striving for.

Goodbye Kinnitoos

It looks like we need to continue reaching out to one another, our lawmakers, and even the manufacturers producing our foods.  We need to correct the false technical information (Like Jerry Bigam’s perception that non-GMO foods are less reliable and productive than the GMO counterparts or that a global switch to non-GMO crops might harm the state of our world.), continue spreading awareness, and growing in numbers.  For this week, I find myself back in the kitchen to plan my own homemade animal cookie recipe. I thank Trader Joe’s for their awesome, new GFCF Oreo-style cookies to replace the old Kinnikinnick ones getting more stale by the month in my pantry. There’s no way my son would even eat his veggies without the standard, one cookie reward! Out with the Ian’s chicken nuggets and off to my local GFCF bakery with GMO info in hand. Remember to do your homework and be thorough when checking ingredients, sadly there’s more to be wary of than just the basic allergens we’ve come to live with.

Love the Trader Joe's Version!

Learn more about GMOs:

Visit http://www.momsacrossamerica.comand join with others helping to make positive change within our food supply.

Spend some time on the Institute for Responsible Technology to learn the science and hazards of genetically engineered foods.

Here is an excellent resource for GMO Myths and Truths.

Contact your child’s favorite food manufacturers and tell them you’re opting out until they make this right!

Happy Friday,

Muckraking Maven