What are GMOs and do they matter?

GMOs are genetically modified organisms–plants or animals whose cells have been inserted with a gene (genetic engineering) from an unrelated species in order to take on specific characteristics. The crops most commonly genetically modified are corn, canola, soybean and cotton. (source)

corn

While the reasoning behind beginning genetic modification may be good (trying to strengthen crops against pests, producing greater quantities of crops, etc.), the results have been negative for humans’ health. Disturbing the natural, created order of foods at a cellular level causes “unpredicted alterations” (Weston A. Price Foundation – source below) and unintended consequences:

The gene insertion process, whether accomplished via a “gene gun” or through infection by Agrobacterium, can really mess up the normal functioning of the plants’ DNA. It can create mutations, deletions, and altered gene expression near the point where the gene is inserted and elsewhere. Then the transformed cell is cloned into a GM plant using tissue culture, which can produce hundreds or thousands of additional mutations throughout the plants’ genome. In total, a GM plant’s DNA can be 2-4 percent different from that of its natural parent. In addition, up to 5 percent of the natural genes can alter their levels of protein expression as a result of a single insertion. (source)

These unpredicted alterations caused by genetic engineering “can result in new or higher levels of allergens, toxins, carcinogens and anti-nutrients” (same source). Click through to my source for numerous examples. These increased levels of negative contents have been shown to provoke immune response, permeate the intestinal wall, and damage gut flora–and all three of those reactions have far-reaching, long-term consequences themselves (e.g., many neurological disorders with a gut-brain link like autism, ADD/ADHD, depression).

In addition, beyond the cellular changes in the organisms themselves, a main reason behind genetic modification is to make plants resistant to herbicides. “The vast majority of GMOs are herbicide tolerant—they allow specific herbicides to be sprayed on fields without damaging the GM plant. Roundup Ready soybeans, for example, tolerate applications of Roundup herbicide” (same source).

The bottom line is that I do not want to put these toxins (from the genetic mutations themselves and from the herbicides) into my body or into my kids’ bodies. 

How to avoid GMOs

If you, like me, want to avoid GMOs, there are some steps to take.

  1. First, certified organic foods cannot contain GMOs.
  2. Second, when reading an ingredient label you’re unsure about, you can be pretty sure the following ingredients are GM: amino acids, ascorbic acid, sodium ascorbate, citric acid, sodium citrate, natural flavorings and/or artificial flavorings (this seems to be a favorite way for labelers to hide lots of nasty stuff!), high fructose corn syrup, hydrolyzed vegetable protein, lactic acid, maltodextrins, molasses, monosodium glutamate, textured vegetable protein (TVP), vitamins, and yeast products (and here is a more exhaustive list).
  3. Third, you can buy fewer packaged products and switch to a more whole-foods, unprocessed diet that includes organic produce and meats from verified sources.
  4. Finally, you can visit The Non-GMO Project and click FIND NON-GMO to find products, restaurants, and retailers that do not use GM ingredients. (I also appreciated this article about avoiding GMOs when eating out.)

On a side note, I do not believe it is the government’s job to ban things like GMOs. I believe it is people’s right to research and decide for themselves and, if they decide not to consume GMOs, to buy those more expensive foods that don’t contain them (rather than the government dictating everyone must buy the more expensive choices). There is a current movement to try to get labeling mandated; personally, I’d appreciate clearer labeling, but not at the cost of higher prices for everyone. Even without labeling changes, it is possible for a consumer to do his/her own research and know which companies and which types of ingredients to avoid.

2014 check-in

Some days, it feels like a lifetime ago that Nate was a nonverbal two year old struggling with meltdowns, eating issues, sleep issues, communication problems, etc. Other days, I feel like it was just yesterday I had to follow him around at the playground to remind him how to play, or ignore dirty looks in the grocery store check-out line, or make quesadillas and ketchup for lunch every day, or attend dozens of hours of various therapies every week.

Today, Nate is in 4th grade at a local public charter school, with no aids or services. He is a very smart boy. He loves video games, but since we limit screen time to weekends, he also loves reading, rainbow looming (creating rubber band bracelets), riding his bike and scooter, playing Legos with Levi (who is now almost six years old), and swimming. Socially, Nate is doing so well, when you consider that the things that come naturally to other kids (understanding joking/kidding behavior, just “getting” regular nine-year-old-boy behavior) are things he has to practice. Nate doesn’t play tough like other boys his age; he doesn’t make fun of other kids or understand when other kids make fun. A couple of months ago, we started him in a one-hour-a-week after-school social skills class to help him learn and practice some skills (sportsmanship, learning the difference between “laughing at” and “laughing with”, reining in tendencies toward bossiness). I’m hopeful he’ll take these lessons to heart, as sometimes those things are learned easier when coming from someone other than mom and dad (I think we must start sounding like Charlie Brown’s parents after a while).

I consider Nate a success story. Anyone who knew Nate only when he was two or three years old and met him again now for the first time in six-seven years would not believe he’s the same boy. Even people who are familiar with autism are surprised to learn he used to have a diagnosis!

So, what do we do to keep this success story moving in the right direction? Here is what our lifestyle looks like now:

  • whole, healing, nourishing nutrition
    • we still do not eat gluten, casein, soy, or sugar… but it’s more than that. We eat a whole foods diet with lots of good fats, properly prepared grains (soaking, sprouting), fermented foods, animal proteins, grass-fed butter (yes–butter!), fresh vegetables and some fruits, properly prepared nuts and seeds, and good-for-you treats (made with raw honey, grade B organic maple syrup, raw cacao powder, etc.). This is no longer the GAPS diet, but I credit the GAPS diet with revolutionizing how I look at food and nutrition for our kids.
    • daily probiotics (HMF powder) and cod liver oil
  • homeopathy and natural remedies
    • UNDAs (through our naturopath)
    • colloidal silver – we have completely healed pink eye and ear infections (also garlic oil)
    • no antibiotics, no ibuprofen, no acetaminophen
  • therapeutic-grade essential oils
    • not only are essential oils fun to use, but also, combined with a healthy lifestyle of nutrition, good sleep, etc., they are extremely effective.
    • contact me in the comments section if you’re interested in learning more about oils; I do sell them
  • very few visits to the regular doctor
    • we are empowered to take care of our own health and our kids’ health!
    • no vaccinations

The picture of our lifestyle now is quite different from eight years ago. I can safely say I would have done nothing on this previous list eight years ago. But I also don’t want to think about what our lives might be like now if we hadn’t been on this journey full of positive changes. I believe Nate would not have made such strides; I believe we would all be getting sick much more often; I believe we would still struggle with behaviors–in all of our kids; I believe school–friendships, focus, stress–would be very difficult. I am glad for the road we have been on!

Great info for parents suspecting autism

I was pointed to this blog post with some great information for parents on what to look for regarding “normal development” of babies.

Here’s a pertinent excerpt:

Baby B.L.I.S.S.*
For our purposes, I have developed an easy way to remember the signs to look for as your young child is developing. When making a diagnosis, my colleagues and I focus on a baby being able to do several early developmental skills around social interactions and play. I have also created some short video clips showing these skills as they begin to develop. The video shows what your baby should be doing by their first birthday for each part of the acronym: B.L.I.S.S.
B = Babbling- your baby should be playing with vocal sounds a lot, making a variety of vowel and first consonant sounds such as b, d, and m – think mama, dada, baba, etc.
L = Looking – this involves your baby looking at you when you talk, looking back at you when they are playing to “check in”, and looking at something you point to, to see what it is.
I= Imitating – your baby should imitate your basic play actions such as clapping hands, waving bye-bye, blowing kisses, or banging blocks together, etc.
S= Sharing – your baby should share enjoyment with you by laughing and giggling for familiar games such as peak-a-boo, or “Sooo big”.
S = Showing – your baby should hold objects up to you to “show” them to you. They often won’t let go of the item, but they want to get your interest in what is interesting them. If they are walking, they may “bring” it to you to show you.
So this is the new kind of baby B.L.I.S.S. I hope every parent becomes aware of and I want you to remember it for yourselves and for all of your friends. Remember, if your friends or family have concerns, by just starting with these questions, you will know almost immediately if you should have an autism specialist take a look. It is important to note, this is by no means a diagnosis, it is just a way to be aware of the early signs so that if this is what it is, the correct course of action can be taken and a diagnostic assessment can be done as soon and as early as possible.

In our experience (although it’s getting harder and harder to remember–it was 4 years ago now!), Nate really lacked in the “Babbling” and “Showing” areas. The other areas were also delayed, but not as severely.

Temple Grandin interview

I read an interview with Temple Grandin, the noted author who has autism, here. To my knowledge, Grandin has not been an advocate for any of the “new” autism groups like TACA, groups that support biomedical treatments and research for a cure. That is why some of her answers pleasantly surprised me:

Cases of autism are rising. Why do you think that is?
Some of it is probably due to the way autism is diagnosed. I saw people on the HBO lot that probably have Asperger’s but never got a diagnosis as a child. There has been an increase in regressive autism, children who develop normally, have speech, and then lose it. I think there’s something going on with some type of environmental contaminant. Some insult is getting to the child whose genes are susceptible to autism. I think we are going to be hearing more about epigenetics and autism. With epigenetics you look at how the genome responds to the environment. How things like toxins and diet and other things turn on the switches that regulate how certain genes are expressed.

I’ve read this a few other places, and it resonates with me. Perhaps there is no one “cause” for autism, and something that contributes to causing autism for one child (e.g., vaccines) might not harm a neurotypical child at all, because that neurotypical child’s body isn’t susceptible or predisposed in the first place.

I was also pleased to read that Grandin mentioned toxins and diet. From our family’s experience, we know that diet makes a huge difference–not just for Nate, but for all of us!

“Autism pride” or neurodiversity is a growing movement. Do you think there needs to be a “cure” for autism?
I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’

I agree that not every minute autistic trait should be erased. Any “autism” still left in Nate is at the “quirky personality trait” level, and I wouldn’t change those traits. (I am instead trying to help Nate learn how best to deal with some of the quirks, like when he gets super upset if he doesn’t win a board game.) For children whose autism is more severe, I believe in embracing the child and working to help that child be able to function in society through language, understanding social cues, and improving what’s going on inside the body to heal what might be hurting.

2009 Update

Nate is such an amazing little boy. He is now more verbal than many of his neurotypical peers. He has been able to read for several months now (self taught). He loves other kids and enthusiastically greets everyone by name (he has an amazing memory, especially with names). He courageously endures all of his treatments, including yucky tasting daily supplements, b12 shots every 3 days, and a restrictive GFCFSF diet. He is so joyful, energetic, smart, and sweet. He has a new little brother, Levi, who is 4 months old now; Nate has been nothing but sweet to him since day one.

We had an appointment with Dr. Mumper at Rimland Center last month. We went through Nate’s current supplement routine, adding a few new elements (magnesium each day to help with his auditory sensitivity/defensiveness; we reinstated cod liver oil to decrease visual stimming/using peripheral vision; we also reinstated probiotics, especially for if/when he goes on antibiotics; glutathione lotion, which has myriad benefits; and a 10-day course of two strong antibiotics to nip some possible clostridia in the bud). Dr. Mumper also recommended we take Nate back to the neurologist who originally diagnosed him two years ago, because she believed Nate would no longer qualify for the diagnosis! I have made an appointment with the neurologist for the end of this month; from what I know of her, she would be very reluctant to remove a diagnosis from a child, but Nate would still score much lower on the CARS test he originally took.  (His score in March 2007 was 43.5, which placed him in the “moderately autistic range.”)

When Dr. Mumper asked us what one treatment we believe has helped Nate the most, Jon and I agreed it is the GFCFSF diet.

Nate’s next IEP is in April. I’m very interested to hear the things his teachers will say about him, since they will have had a year with him. We are optimistic about Nate being mainstreamed by kindergarten (which will be September 2010), as I can already see Nate starting to bring home more negative than positive behaviors from his peers at school. We love this amazing boy!

P.S. After reading some of my older posts, I realized I should also update that Nate is now a good sleeper. He goes to bed at 8:00 (usually plays in his room, but then turns out his light and is in bed by 9:00) and almost always sleeps until 6:00 or a bit later. Waking/needing one of us at night is rare for him now–and it has been for probably 5 or 6 months.

One step back, two steps forward

Jon and I have noticed an interesting trend: when we stop a certain treatment (or all treatments) for Nate for a short period, he has a major regression, but when we start everything back up again, he jumps forward amazingly! (It’s kind of like one step back, two steps forward.) We have never intentionally stopped treatments, but things happen (shipments get delayed or backordered, or a diet infraction occurs, etc.). I can think of two of these events off the top of my head, but I know there have been others:

  1. Way back when we were only doing enzymes (not diet, no other supplements), I ran out of both kinds, and they were backordered on the website I order them from. In in the interim, I went to a local health food store and got some enzymes, but they were not high quality and had such a low concentration of enzymes that it was essentially like giving Nate nothing. In that week, he started whining/fussing/crying all day like he used to and had many more meltdowns and tantrums. At that point, he really didn’t have much language anyway, so he didn’t lose much in that area. When the correct enzymes finally arrived, I started Nate back on them full force. Within a day to two days, he was back to being happy and bright-eyed. And he started saying words, including “hi” and “bye bye” for the first time ever, unprompted.
  2. The second example occurred this past month. Nate got a stomach bug and high fever on Thursday, June 19. He couldn’t keep anything down, so I did not give him any of his vitamins, supplements, or enzymes (total of about eight separate items right now) all of Thursday, Friday, and some of Saturday. Even after his fever broke and he was eating a bit, he was whiny and cried most of the day for no reason, not really using words much of the day. He got many of his vits/supps on Saturday, and I started everything back up on Sunday (including his melatonin). Sunday night, he slept through the night. This is very, very rare. Monday night, he slept through the night. I can’t remember two nights in a row of sleeping through the night in months. Tuesday night, he slept through the night. Wednesday night, he did wake early in the morning and come down to our bed, but he did it quietly (in the past months, when he wakes, it is with loud crying, and Jon has to go get him). So, in the past week of nights, he has slept through the night many nights and only cried one time. That is monumental for him. We are all getting more sleep!

It is encouraging to figure out that the things we’re doing for him are working. His jumps forward might also indicate that he would do well with higher doses of certain things, but I don’t know if our family wallet can manage that right now. 🙂

Book review: Seeing through new eyes

Last week, I finished reading Seeing through new eyes: Changing the lives of children with autism, Asperger syndrome and other developmental disabilities through vision therapy by Melvin Kaplan. Dr. Van Dyke at the Rimland Center tipped us off to this book and the work this author/doctor does. I had never heard of anything like it.

Kaplan uses prism lenses (special glasses) and vision therapy to alter how people see and perceive their world. He posits that many “undesired” behaviors we see in autism — toe-walking, hand-flapping, dragging hands along walls, stimming, staring at spinning objects (like Nate does) — are children’s coping mechanisms, their “logical strategies for adapting to sensory disturbances” (p. 45). These children are “seeing” 20/20 but are not perceiving correctly. He writes that these behaviors are not the problem; they are the solution! They show us what is going wrong perceptually.

He writes that children’s toe-walking, stimming with their hands, touching walls when they move “stem from their inability to handle both themselves and space simultaneously. To orient themselves, they flap their hands or touch objects, providing sensory input that tells them where they are in space” (p. 18). Many people with autism have problems with orientation of self (where am I?) and/or organization of space (where is it?).

The purpose of ambient prism lenses is “to actually alter perception in ways that cause patients to reoganize their visual processes[…]. The behavioral changes caused by this alteration of perception often are instantaneous and dramatic. Patients with autism or related disabilities have spent a lifetime developing strategies to compensate for their visual deficits. By the time they arrive at the optometrist’s office, these strategies — eye turns, postural warps, self-stimulating behaviors, etc. — are habitual and ingrained. Ambient prism lenses instantly create a new visual world, in which those adaptive mechanisms are no longer either necessary or relevant. As a result, patients must rapidly re-awaken previously suppressed visual processes, in order to make sense of their altered surroundings” (p. 34). Kaplan believes that altering these patients’ perception can level the playing field in a way, making it possible for other therapies to be even more effective.

Kaplan includes many interesting and relevant case studies in addition to descriptions of the tests he uses in his practice (including tests for non-verbal patients).

This book was a page turner for me, not only because I found the case studies so interesting, but also because I saw so many children I know reflected in the pages. I see many children at Nate’s therapy center walking on their toes while dragging one hand along a wall while a therapist leads them by the other hand. Though I’ve read of other explanations of some of the behaviors (e.g., toe-walking is the body’s response to painful GI tract problems), many of Kaplan’s explanations really resonated with me.

I’m not sure if Nate is an excellent candidate for vision therapy, as he doesn’t display some of the markers Kaplan mentions multiple times. Nate doesn’t toe walk. He doesn’t drag his hands along walls. He doesn’t flap his hands regularly. However, here are the tidbits in the book I did highlight that describe Nate:

“[Individuals with autism] display a fetish for numbers and letters, as well as spinning objects […]. Higher visual development, in contrast, involves smooth eye movements and visual search patterns. The autistic pattern is marked by static attention, which is unsustainable, where the latter involves dynamic attention and is sustainable. Dynamic attention requires a concentration of internal energy, and patients who cannot coordinate their eyes are unable to achieve this level of concentration” (p. 55).

“Sometimes children will be comfortable watching certain sections of a video, but cover their ears, scream, or turn their eyes away during other sections. Such behaviors provide valuable insights into the type and amount of visual and sensory input a patient is capable of handling” (p. 61).

There are other times when Nate seems to completely zone out/stare into space when a question is asked, and I’ve often interpreted it as sensory overload, which may include visual/perceptual components.

I plan on recommending this book to anyone who asks for my “long list” of autism treatment information.

Observations after two weeks on m-B12 (originally written 1/27/2008)

We’ve been giving Nate the at-home methyl-B12 shots for two weeks now. His sleep is back to acceptable levels (not great, but acceptable)–he’s going to bed at a regular 8:00 and getting up usually between 6:00 and 7:00, with night wakings still common. We put a gate on his door, which is helping.

At the end of every day this past week (Monday-Friday), I sat down and thought, “Wow, today was a pretty good day.” No major meltdowns, generally good cooperation, good language. Nate has also started asking a few questions in the last week to 10 days, including, “Who it is?” when I answered the door and he couldn’t see who it was, and “Mama, where are you?” a couple of times (he seemed to be saying that one more to himself than actually calling out to me, but still, it’s a great step). He has never asked questions before.

In general, Nate just looks healthier: his complexion is smoother and brighter, and the bumps on his legs are better. I attribute these changes to the diet but also recognize that m-B12 could be contributing.

The actual shot-giving is not too fun. It requires two of us (one to hold down, one to give), and Nate doesn’t like it at all. He still cried this last time, but he didn’t act like the shot hurt him, so that’s good. I’m planning on asking the doctor this week for some EMLA (numbing) cream.

Overall, I’m pleased with the lessening of bad side effects and am excited to see what other positive changes occur.

Rimland Center (originally written 12/31/07)

Our visits to the Rimland Center this week were very successful and promising. I went in trying not to expect too much… I thought we’d walk away with a list of labs to have run on Nate and nothing more, so I was pleasantly surprised when much more than that was accomplished.

I liked Dr. Van Dyke a lot. He actually listens! to what parents say! and believes them! We spent the majority of the first appointment giving a more detailed history (does Nate do this? does he not do that? what are his specific stims? diet? physical activity?). I hadn’t really thought about it before, but most of Nate’s stims are visual in nature (his main one is his obsession with watching things spin). Dr. Van Dyke’s own 5-year-old son with autism is the same way, he told us, and he also told us about a new type of therapy I hadn’t heard of before: vision therapy using prism lenses. I’m really excited about looking further into this; I’m buying the doc’s recommended book, Seeing Through New Eyes.

The doctor also supported and liked our use of enzymes and GFCF diet, since those are usually the first two things he has parents do. We talked about the next steps in Nate’s treatment, and we started one the next day, at his second appointment! I was thrilled to be able to start something, to be doing and not just reading/talking.

So, this new treatment is called methylation, and it involves giving Nate a vitamin B12 shot once every three days and adding in three new supplements: DMG, taurine, and folinic acid. The shot is methyl B12 because it’s in a form even more usable by the body than the usual B12 shots some people get. I had read about methylation–in fact, I had just finished with the chapter about it in Children with Starving Brains. I’ve done some reading since then, too (see here, here, and here), and I still don’t think I can adequately explain what it is or what it does. However, it helps the majority of children with autism in some way, so it’s a good treatment to try first. (And, since it really can’t hurt, Dr. Van Dyke likes to try it right away rather than wait for lots of testing that may or may not tell us whether it would be beneficial. I’m all about the doing and not just talking!) This stuff is going to help at a cellular level with things like oxidation/lowering oxidative stress, because “an increased vulnerability to oxidative stress and a decreased capacity for methylation may contribute to the development and clinical manifestation of autism” (James, Cutler, Melnyk, Jernigan, Janak, Gaylor, & Neubrander, here). The benefits should also manifest themselves in behavioral improvement: more social language, more efforts at imaginary play, etc.

With one of the Rimland Center specialists’ supervision, my husband gave Nate his first MB12 shot on Friday. I don’t think the shot hurt him; I think he cried because he didn’t want me holding him still. In the two days after the shot, Nate seemed lethargic, more stimmy, much more whiny, and less cooperative. Hmm. I’m hoping it’s his body adjusting the same way it has to the other treatments we’ve done. Since the shot, I have noticed a couple of positive changes that definitely could be attributed to the MB12: 1) for the first time ever, Nate made up a song and sang it (it was a song about going to the airport when we were on the way there. It had only a couple of words, but it was still cool); 2) he started saying please much of the time without prompting, and today he even said, “yes, ma’am” without my having to tell him to. Cool!

In addition to the MB12, taurine, folinic acid, and DMG, we are going to start several other supplement-type things that we can buy without a prescription. These include a liquid aloe vera to help even more with inflammation and the GI tract, fish oil (not just cod liver oil) for essential fatty acids, and one or two more things I can’t remember off the top of my head.

We are going to do a few labs to determine some more about Nate, including whether or not his elevated ammonia levels on a previous test are correct. Some of these labs might indicate what future treatments, like antifungals for yeast overgrowth, we’ll try.

Overall, we are so encouraged and excited about all of these treatments and love the Rimland Center.

Starting the diet (originally written 11/27/07)

Yesterday I went to Mother’s Market and bought lots of gluten-free/casein-free-friendly items, like gluten-free (GF) all purpose baking mix, white rice flour, GF cereal, and casein-free (CF) vanilla rice milk. Today was Nate’s first full GFCF day. It went well until tonight, when we were over at Ray and Colleen’s (I bring the children over there and Colleen watches them while I teach my flute lessons) and everyone else had pizza (pretty much Nate’s favorite food). Poor Nate didn’t understand why I wouldn’t let him have any; instead he had a GFCF waffle, baby food fruit (he still eats these), and popcorn. He got over the pizza thing once we put it away and everyone was done.

It’s interesting that he has been asking for cookies and crackers all day and then rrrreally wanted the pizza tonight. That seems to confirm the idea that his body is addicted to those things.

We will continue doing the enzymes with Nate, but since we’ll be doing the diet too, I won’t have to be so strict about enzymes with every bite he eats. I’m wondering if it might also work the other way around–that I might not have to be so strict with the diet since he’s using enzymes. I’ll have to ask about that.

Here are some sites I’ve found helpful in this very new venture:
Information on flour alternatives – what each kind of flour is good for, substitutes to use for gluten (which is needed to make foods stay together and have a good texture)

Recipes and meal planning ideas – the chicken fingers look good.

Yummy cookie recipe – this blog has several good-looking recipes, many GFCF.

I’ll add more as I find them. 🙂

12/3/07 Wow, this girl has a lot of great information (includes casein-free too):Cooking & Baking Gluten-Free: Tips from a Gluten-Free Goddess

2008 update
I often find myself on the “unacceptable” list on GFCFdiet.com. It has helped the most!

I am so glad we are doing this diet and find that, in some ways, it is easier than doing enzymes. (We are still doing enzymes, too.) If someone else watches Nate or we go somewhere, I don’t have to worry about instructing on giving enzymes; I can just send appropriate food along with him.