Motor Stereotypies: Our Story Part II

Please read part one of our story to catch up on what CMS is (and what it isn’t). In this part, I will explain what we have done to manage our son’s CMS. Despite all of the negative points I made in the previous post about the CMS group, there are definitely many other parents in it who are looking for answers and alternative options for their kids. About 6 months ago, one of them posted about how she had been recovering her son from autism using only diet changes, and that one of the big things she was able to control was his stereotypic motor movements. (Sidenote: If it upsets you that I am referring to people recovering their kids from autism, please read this. There is a whole movement of parents doing this in various ways with a lot of success. Check out The Thinking Moms Revolution, Talk about Curing Autism, Generation Rescue, and Dr. Amy Yasko for starters. )

Ok, back to CMS. The diet change that the woman posted about was one that drastically reduces free glutamates (MSG and many other names) in the diet and increases anti-inflammatory and nutrient-dense foods. It is essentially an extremely clean diet, packed with nutrients and void of processed food, which reduces excitotoxicity in the brain and chronic inflammation in the body. This made absolute sense to me, especially because I had linked our son’s worst episode of CMS to my candy binge. She directed us to this website and TedX talk, and I decided to start the diet changes soon after watching the video. The baby’s movements almost immediately started becoming less frequent and intense, and after about a month, they were not noticeable unless you were looking for them. Today we very rarely see the movements and they only return, although very mildly, with food infractions.

Now, I openly admit that this drastic diet change is difficult to do, and requires a lot of time, resources and diligence. I was able to enact it so quickly for my son because he was only a year old at the time and still breastfeeding. I basically only had to control what I ate and what he ate, which is much easier to do than, say, completely changing what my 7- and 5 year-olds eat. I have been slowly changing the whole family’s diet over the last 6 months, and still have a ways to go. My suggestion for anyone wanting to do this is to start slow and do it over time, with the most important step being eliminating processed foods that contain all versions of free glutamate.

I am still working on figuring out exactly what interaction of influences caused my son to develop CMS, and will likely never know the full story. I recently read a book called Outsmarting Autism by Patricia Lemer, and she has the best phrase to describe what I think happened with my son, and what is happening to so many of our children today. She calls it the Total Load Theory, and it basically describes how our children are being conceived in and born into an increasingly toxic environment and that the influences of epigenetic, genetic, and environmental factors during gestation, the birth process, infancy, and childhood are causing many of them to become overloaded, or to use another word picture, it causes their “bucket” to overflow. This “overflowing bucket” manifests itself in different ways in different kids, and in my youngest son’s case, it lead to CMS. One of the biggest factors in this is the microbiome in the gut, which is coming under assault in our kids from the moment they are conceived, and even before. Giving these kids the nutrients they need to help their bodies, especially their guts, function properly and eliminating the “anti-nutrients” that impede their function is THE most important thing we can do for them. There is more and more research coming out every day about the importance of the gut microbiome and its connection to the brain, immune system, and really every other system in the body, and it needs to be a primary focus of any treatment program for any of our kids’ (and our own) health issues.

Here is a non-exhaustive list of factors that I think may have worked together to cause my son’s bucket to overflow. Of course, this is only my opinion about my own situation.

  1. Nutrition: Hands-down the most important consideration. Clean, nutrient-dense, anti-inflammatory,  REAL food. I would go back and do more healthy fats, specifically.

  2. Microbiome support during pregnancy and infancy: I would have been more conscientious about eating probiotic foods, taking probiotics, and avoiding substances that interfere with a healthy gut microbiome during pregnancy and during the birth process, especially in a hospital birth.

  3. Vaccines and all other pharmaceuticals during pregnancy and infancy: I had the flu shot (preservative-free) when I was 3 months pregnant. I got sick after it, with a significant immune response including a fever, which can negatively affect the fetus (the flu itself can cause this same problem, which is why they push for pregnant women to get the flu shot). Bottom line with this is that there is not sufficient (or really any) data on the safety and potential negative effects of vaccination during pregnancy because it has not been studied in pregnant humans (read any vaccine package insert to see this). I would also thoroughly research ANY other pharmaceuticals before taking them myself or giving them to my infant (including infant vaccines and the vitamin k shot).

  4. Ultrasounds: I had more ultrasounds during this pregnancy than the other two, including one internal one where the probe was right next to the baby’s head. Hereis an article about some studies done in China about the potential negative effects of excessive US on babies in the womb. (Warning: the studies are done on electively aborted babies).

  5. Radiation from cell phones and other wireless devices: I was way behind in getting a smart phone, but I got one just in time for this last pregnancy. I obviously spend quite a bit of time online, so this baby was exposed to significant radiation from that in utero.

  6. Circumcision: This is another controversial topic, but since researching it after the fact, we would probably choose not to do it for either of our sons. There are several issues with it, but the main two for me are: 1. It’s another procedure involving pharmaceuticals and exposure to more unwanted hospital microorganisms. 2. It has recently been linked to brain development disruption due to its potentially traumatic nature.

  7. Environmental toxins: These come in the form of food and drink containers, conventionally-grown food, tapwater , air pollution, and skincare and other products in the home. This area is where I get a lot of people telling me that I can’t possibly avoid all of this stuff without putting my kids in “a bubble.” This is true, but please recall that my goal with all of this is to keep the level of my and my baby’s toxic and inflammatory “bucket” low, not to prevent us from ever coming into contact with any toxins. That would be impossible these days, at least in this country. My approach is to clean things up where I can, when I can, without becoming obsessive or terribly rigid about it. Also, providing our bodies with good nutrition and keeping our gut microbiomes balanced and functional will give our detoxification pathways a boost and help them work to adequately remove the toxins to which we are inevitably exposed.

As I said before, this list is not exhaustive, and it only includes things that I would change about my own pregnancy and my son’s early infancy. I highly recommend reading Outsmarting Autism and also Almost Autism by Maria Rickert Hong because they both lay out things to consider and to do in greater detail. These things really apply to all of us, not just those with an autism or “almost autism” diagnosis.

So, to make a pretty long story short, we drastically changed our son’s diet and reduced our exposure to environmental toxins , and it has helped keep his CMS under control. He is not “cured,” because the movements come back with food infractions. I don’t think the CMS will ever completely resolve, but it is great to have the tools to manage it. I’m sure it will become more challenging for us and for him to stick to this diet as he ages, but we will figure that out as we go. I am in a FB “support group” for this diet, and there are many other parents using nutrition to deal with all kinds of health issues, from behavior problems to skin issues to seizures. It makes sense, too, because this is the way our bodies were designed (or evolved, if you prefer) to be nourished. When they start getting the nutritional building blocks they need and stop being bombarded with toxins that interfere with proper function, it only makes sense that they start working the right way!

Please go to the Unblind My Mind website and watch Dr. Reid’s TedX talk to learn more about free glutamates and the impact of diet in general. If you are interested in learning more or even trying to move your diet and lifestyle in this direction, please contact me and I can give you more details and resources.

If I can leave readers with two key messages from all of this, they are that 1. We as parents and medical professionals need to go back to relying on the precautionary principle when making medical and lifestyle decisions, and that  2. We all need to go back to eating, feeding and prescribing real food. These two actions would take us and our children a long way toward health and wellness.

6 thoughts on “Motor Stereotypies: Our Story Part II

  1. Hi, thank you so much for sharing your story. My son is 5 and he has cos. I wanted to check with you did you change his diet to gluten free diet ?

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  2. My son was just diagnosed with CMS. I would love any resources you have on glutamate free diets. I willingly to try it to see it it will help him with his movements.

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