There is so much information about vaccines out there these days. In the mainstream media, there is a very clear and deep divide between the “pro-” and “anti-” vaccine camps, with the “antis” described as either well-educated, yet selfish, women or ignorant anti-science Neanderthals, or a combo of both.

A little background about me: I am an RN and have three kids, the oldest two of which I vaccinated according to the CDC schedule. My oldest son had some health issues earlier on in life, but we made some dietary changes and his health has improved. It wasn’t until I came across a story in August of 2014 about a reanalysis of a 2004 Pediatrics study that showed a 240% increase in autism in black boys with earlier vaccination with the MMR vaccine, that I really started digging deep into my vaccine research. The reanalysis included data that the original authors excluded from the final paper, and one of the original authors, Dr. William Thompson, sent a statement out through his lawyers saying that he regretted the fact that they withheld statistically significant information from the paper. *Here’s a video update on this situation which came out 1/26/16.*

I posted about this on my FB page and said that I was interested to see how this shook out. Surely it would be all over the news and scientists from across the globe would be asking for the data to analyze for themselves. The CDC would likely immediately suspend or adjust the vaccine schedule for black boys at the very least. Big changes were coming!

Nope. We got a media blackout and smear campaign for Dr. Brian Hooker, the author of the paper, in the “science blog” scene. The article was removed from the journal the day after it was published, and has since been put back up with a statement of retraction.The whole thing was blown off and the old “Blame Dr. Andrew Wakefield and Jenny McCarthy” game was played. Those of us that wondered if maybe we should look into this were called anti-science and dangerous. Well, that got me heading down a path that has landed me firmly in the “vaccine choice” camp. But you can just call me an “anti-vaxxer” if you prefer.

So, I wanted to share some simple facts and visuals with you to show why it is necessary for us to research vaccines before we consent to them and why we should protect parents’ and individuals’ rights to make vaccine decisions for themselves.

1. Look at the vaccine ingredients list that is posted on the CDC website. I was personally under the impression that vaccines were saline solution with bits of virus or bacteria in them before I decided to take a closer look.Things to consider and research: ingestion vs. injection of these ingredients, the mechanisms of the adjuvant aluminum, and the fact that at least traces of aborted fetal cells are clearly listed as currently being in some vaccines.

http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/B/excipient-table-2.pdf

2. Here is a good visual of a comparison of the number of vaccine doses my generation got to how many my kids’ generation is getting. Laws like SB277 in CA give license to the government to add to this list as it pleases.

3. While researching the topics listed above, be aware that this vaccine schedule in its entirety (or really even partially) has never been studied for safety. Safety studies are generally done for one vaccine on healthy people and true placebos are rarely used. They are usually compared to other vaccines or vaccine adjuvants, not saline. So we do not know what the accumulative or synergistic effects of all of these vaccines or any combo of these vaccines are.

4. In 1986, the vaccine manufacturers were given immunity from liability for vaccine damages in the U.S. There is now a special “court” without a judge, jury, or discovery that people seeking compensation from vaccine damages have to appeal to. Payouts are rare and the process is laborious, long, and expensive. The payouts come from taxes we pay on each vaccine dose. The companies have no incentive to ensure the safety of their products.

This list is intended as a good jumping-off place for anyone interested in looking into vaccines for themselves. And it should be enough to prove that it is absolutely necessary for us to retain the freedom of choice in this matter. In future posts I will get into more details like the theory of “vaccine-induced herd immunity,” the rampant conflicts of interest in the government, regulatory bodies and pharmaceutical industry, the real history of infectious diseases and vaccines, and “astroturfing” in the media.

Resources (just a few):

Dissolving Illusions by Dr. Suzanne Humphries and Roman Bystrianyk- Excellent and very well-referenced book that looks at the history of infectious diseases and vaccination. It does not reflect the version of history we are told by media, government agencies,public health officials, medical schools or nursing schools. Dr. Humphries also has several lectures available on YouTube, and they are all very well-referenced and informative.

PubMed– Go ahead and do a few “vaccine” searches in this database. This is where the science is, and there is plenty of it that contradicts the “all vaccines are safe and effective” mantra. A topic to start with is ASIA (Autoimmune Syndrome Induced by Adjuvants). Also be aware that many times a result that sheds a negative light on a vaccine or vaccines is purposefully not mentioned in the abstract. You have to read the whole paper. I recently found out about Sci-Hub, where full papers are available free of cost.

National Vaccine Information Center– Organization fighting to retain freedom to make personal decisions about vaccines. They have a lot of info about the diseases that we vaccinate for and the vaccines themselves. They also have a lot of info about the vaccine requirements for each state.

www.VaccinePapers.org– This site takes a pretty unbiased look at vaccine science. It dispels myths on both sides of the vaccine debate.

The Peanut Allergy Epidemic is a book which clearly explains the probable relationship between food allergies and vaccination.

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.

We first noticed something was different with our third baby at around 3 months old. He appeared to have an intention tremor when he reached for things. He would also stiffen his arms and legs, and make a facial grimace while holding his breath. This started out happening during diaper changes and when lying on his back on the floor, then transitioned to the high-chair while sitting up. In the chair, he would throw his arms out as if to balance himself, his head would jut forward, and his face would contort into the same grimace. His wrists and ankles would twirl, and he would occasionally repeat a guttural scream that wasn’t his baseline “normal” baby noises. Here and here are YouTube videos of babies (not my son) doing similar movements, and here is a video of a baby doing the “head shaking” stereotypy. I was concerned, but we were always able to distract him out of it, however briefly, so I wasn’t worried about it being seizure activity. Until the week after Halloween, 2014.

Halloween weekend involved me eating a LOT of my older kids’ “gluten free” (I was GF for unrelated reasons at that point) candy in order to save them from eating it. There are obviously no lengths I won’t go to in order to protect my children from bad food. Anyway, come Monday morning, the baby’s (he was 6 months old at this point) movements when we put him in his highchair were constant, very exaggerated, and had started involving his eyes rolling up and to the side. This new development with his eyes freaked me out, and I told his pediatrician that I was now concerned about seizure activity. He was admitted that afternoon for an EEG and neurology consult. We were ruling out infantile spasms. 

After a few hours in the hospital, a 20 minute EEG, and a brief visit from the pediatric neurologist and his team, we were sent home with the good news that he did not have IS. Of course, we were not given any ideas about what it COULD be. I only had one video at that point of him sitting up and throwing his arms out, and every medical professional, including the neurologist, said it looked like he was just balancing himself. So, I did what any other concerned parent does these days, and I looked to Google for some answers. After quite a bit of searching and watching a lot of YouTube videos, I found a chart describing the different characteristics of tics and stereotypies, which led me to the Johns Hopkins website, which then led me to find a Complex Motor Stereotypies (CMS) FB group.

Figuring out the diagnosis was such a relief. Not only did I have a reputable mainstream healthcare institution to direct the baby’s healthcare providers to for information, but, with one click of a mouse, I became part of a community of hundreds of other parents dealing with the same diagnosis. I was very excited to start getting some of my questions answered, and to come up with a plan for managing and treating this condition. 

 

                       

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In this part I will share some opinions I have about about CMS which have not been the most popular with some other CMS parents in the FB group. 

1. CMS is not a “gift.” 

Something I quickly realized when I first started participating in the group and asking questions is that there is a faction of parents who are only part of the group in order to talk about how special CMS makes the people who have it. To me, this sentiment is similar to the parents who insist autism is a gift, no matter how severely disabled other people’s children are by it. My little boy is a gift from God, and he is truly is a joy to all of us. So are my other two children, who do not have this neurological condition. CMS is not the gift; my kids are. 

So, when I began asking people what factors they think might have triggered CMS to manifest in their child and what they were doing to manage it, I got quite a few responses from people who told me CMS is genetic and that the only thing I could to do was love and accept my child and embrace this special “gift.”

2. There is no research that says CMS is a purely genetic condition.

This is the other part of the “CMS is a gift” answer. People keep telling me that CMS is purely genetic, because they and/or their partner bites their nails or twirls their hair, which are simple stereotypies. Or, they had an uncle who flapped his hands, so they know their child just “took after” him. I bite my nails, and I’m sure there is a connection between that and one of my kids developing a much more severe stereotypy, but there is absolutely no science that shows us that there is a direct, genetic, cause-effect relationship between the two. Just like almost every other health condition, genetics must play a role, but environmental and epigenetic factors do too. This concept has recently been termed the “exposome.” Some people direct me to the Johns Hopkins site to confirm the gene-only cause. Here is what it says:

 

“It is unclear what causes repetitive movements in children who are otherwise normal. Recent research showed that 25% of subjects had a family history of primary motor stereotypies or other movements, suggesting the possibility of a genetic predisposition. Johns Hopkins is currently conducting a study to identify whether there is a genetic connection”

A possible genetic “connection” or “predisposition” leaves a lot of room for other factors to play a role, right?

3. I am not trying to blame myself or anyone else for my son having CMS.

I do appreciate family and friends who are concerned about me coming up with a long list of things I did while pregnant or before that potentially contributed to my son developing  CMS. I understand that they don’t want me to become overwhelmed with guilt and “what ifs?” I agree that that would be counterproductive and would negatively affect the entire family. I am not looking for things to blame on myself, though. I am looking for things that might have contributed to the problem, because once you figure those things out, you are on your way to figuring out how to mitigate or fix the problem. I am only trying to find ways to help my son, and am not looking for someone to blame, including myself. I am also not trying to imply that other parents are to blame for their kids’ CMS. This line of thinking does upset some of the other parents in the group, though, likely because they take my questions to mean that I am trying to place blame somewhere. I have tried to explain how that’s not the case in the group before, with varying levels of success. Let me be clear here, though: My only reason for asking questions about what might cause or contribute to CMS is to find ways to help my son going forward.

Go here for Part 2 of our story.