Why I’ve Become the Debbie Downer of Modern Medicine

I recently had a text message exchange with a couple of my like-minded friends in which I had to write something to the effect of “Sorry to be all Doomsday again, but..” regarding a pharmaceutical product of some kind that one of them had mentioned. A theme has also emerged on my personal Facebook page and this blog’s page: frequent PSAs about the potential dangers of various pharmaceutical products and medical procedures. I actually have to limit myself from sharing all of the information of this type that I come across on a daily basis to avoid emitting a constant stream of posts that fill up everyone’s newsfeeds.

So, I have basically become the Debbie Downer of modern medicine.

Birth control pills? “Great, unless you want a libido or to avoid depression.”

PPI acid-reducers? “Work well except for the kidney disease and dementia.”

Fluoroquinolone antibiotics? “Very effective at killing bacteria! And mitochondria.”

Vaccines? “Super, except for the fact that we can’t trust the studies that support their safety.”

Tylenol? “Reduces fever. And your body’s ability to detoxify. And the ability to experience empathy.”

Debbie Downer 2

This could go on for quite a while.

How did I get to this point? Through experience. My experience, and the experiences of friends, family, patients, colleagues and complete strangers. I went to a conference last year where one of the architects of Obamacare was the keynote speaker. He actually said at one point (paraphrasing): “Our goal is to set up standardized protocols and procedures so that we never have to hear doctors say ‘In my experience..’ when making clinical decisions anymore.”  I looked around the room in disbelief after he said it to see if I was the only one who was incredibly disturbed by that statement. Sadly, all I saw was a sea of nodding heads.

Over the last year, “appropriately prescribed” and OTC pharmaceuticals have caused serious health problems for two of my loved ones. One of them went into acute kidney failure due to a medication prescribed by his cardiologist. His kidney doctor (nephrologist) told him that this medication could not be the problem based off of the available safety data. Another family member decided to go online and do some research, and found out that at least in a few other people’s experiences, it COULD be the problem. He stopped taking the medication and within two days his kidney values improved to the point that he did not need need to start the scheduled dialysis.

The second person woke up one morning unable to walk or write in a straight line. When I talked to her a week later, I had to ask her if she had been drinking due to her obvious cognitive impairment, but she had not consumed any alcohol. She was evaluated and worked up by her doctor which resulted in a diagnosis of a probable inner ear infection. Her own mother had Alzheimers, and in the following weeks I talked to several other family members who gently encouraged me to accept the fact that she was just following in her footsteps at the age of 67. We arranged for her to see a functional medicine doctor, who discovered that she had been put on three rounds of antibiotics several months earlier for a dental procedure, then proceeded to take ibuprofen and Benedryl on an almost daily basis thereafter. Thinking she had likely damaged her gut and therefore her brain health, he had her remove gluten from her diet, stop the OTC meds, started her on probiotics, vitamins D and B12 and instructed her to read two books by Dr. Perlmutter. Two weeks later, she was back to normal.

“These are personal experiences, not randomized double-blind placebo-controlled trial results!”

“I base my health decisions off of scientific evidence found in peer-reviewed journals!”

“Anecdotal evidence!”

I hear things like this a lot. I used to fancy myself as a professional who strictly practiced “evidence-based” nursing. I’ve worked at a couple of different teaching hospitals, and that mindset is drilled into us there. The problem is that “evidence-based medicine” is only as good as the evidence you use. Medical science has some serious issues at this point, one of them being that many of the claims made in the peer-reviewed medical journals are false. In this excellent summary of the issues with safety pertaining to pharmaceutical products, JMR says this:

“…Pharmaceutical companies of course want to minimize, downplay, and outright deny ADR’s [Adverse Drug Reactions] because they don’t want to open themselves up to culpability and liability issues and lose profits. From the limited “safety studies” that Pharma does on a drug pre-market, to “publishing bias” of only publishing research studies with data in their favor, to minimizing and hiding the adverse effects as they sell their products to the medical profession and us, Pharma does all they can to get a drug to market and profit from it. Once the drug gets to market, the big experiment occurs, as the drug is unleashed en masse on the general population. For those taking the drug, it’s essentially a game of Russian Roulette, no matter how “informed” you are.”

I have become Debbie Downer when it comes to  pharmaceutical products because I have seen too many people become victims of this “big experiment.” I have discovered first-hand that it is important for people to share their negative experiences with others, because that is the only way they will be getting information about the  “dark side” of pharmaceutical products. If we don’t do this, people and their healthcare providers are limited to the information they get from  TV commercials and pharma-sponsored safety data about drugs, which heavily play up the benefits and downplay the known and unknown risks. I have said this many times about vaccines, but it actually pertains to all pharmaceutical products: there is little-to-no individualized screening done when someone is prescribed these products alone or in combination, so there is really no way to know if you will be the person who experiences the “rare” adverse reaction.

Pharmaceuticals certainly have their place and I am not suggesting that we completely abandon their use. If one of my family members needs urgent medical care, we get it. However, I have personally switched my family over to mainly relying on measures that support our bodies in functioning properly on their own, such as nutrition/herbs, reduction in exposure to environmental toxins, essential oils, homeopathy, epsom salts baths, chiropractic care and a few supplements. I have also learned to listen to my intuition about my own health and that of my children more, and to seek out the wisdom and support of others who have gained knowledge from similar experiences (which still includes some doctors and other mainstream medical professionals). I also see it as my duty as a nurse, Christian, and fellow human being to be one of the people who shares the knowledge I gain from my personal experiences.

Therefore, I will be carrying on as Debbie Downer for the foreseeable future.

Wah Waahhhhh

 

 

(Image of Rachel Dratch taken from the internet: https://img1.etsystatic.com/133/1/5805234/il_340x270.863995025_zn4b.jpg)

 

 

Nurse and Mother Apologizes for Vaccine Ignorance

tear

One of the first patients I took care of as a new nurse was a man in his 40s who had developed Guillain-Barré Syndrome (GBS) and was paralyzed from the neck down and on a ventilator. His wife was fiercely devoted and set up camp in his room, coffee machine and all. She was very involved in his care, and would monitor all of the staff’s actions, down to making sure we rotated his insulin injection sites in a certain pattern.

One time, as I was going over the medications that I was about to give him through the tube in his stomach, she apologetically told me that she had to go over everything before it was given to him and make sure it was absolutely necessary, because an unnecessary flu shot did this to him.

I remember at that moment feeling a little jolt. It was the very first time that I recall a vaccine being connected to a severe adverse outcome. I had only been out of nursing school for about a year at that point, and was still under the impression that vaccines contained bits of viruses and bacteria and saline solution or other basically inert substances. That jolt didn’t inspire me to do much more thinking about vaccines, unfortunately. It wasn’t until 2014 when the CDC Whistleblower situation was completely ignored by the media and most of the country that I really started my research.

In the time that passed between the GBS patient and my last month working in a pediatric clinic, I administered quite a few vaccines to people of all ages. I also had several vaccines administered to myself and my own children. I would now like to offer a public apology to all the people to whom I administered vaccines, and to my children, for consenting to have them vaccinated without truly being informed.

In her book A Mind of Your Own, Kelly Brogan, MD briefly discusses vaccines. She says:

“Despite acknowledgement of genetic variants and their relevance to vaccine effects from the likes of Gregory Poland and his team at Mayo Clinic, this reality has yet to be acknowledged by the purveyors of this one-size-fits-all product. Vaccines were designed before we knew about DNA, viruses that contaminate cells used to produce them (SV40, retroviruses), the microbiome, or how toxic one chemical can be to one person while leaving the other unscathed. One-size-fits-all medicine is no longer appropriate, and we just don’t know how to determine who might be at risk for adverse effects ranging from psychiatric conditions to death.”

The key phrase here is “we just don’t know.” We don’t know which person is going to develop GBS after the flu shot. We don’t know which baby is going to develop encephalitis, have seizures, or die after their 4-month vaccines. We don’t know which young girl is going to develop a debilitating autoimmune condition or die after the HPV vaccine. We don’t know which child is going to develop severe  food allergies  or  a neurodevelopmental disorder after a set of shots.

We just don’t know. We do not thoroughly screen. We drastically under-report adverse reactions.

We do give out Vaccine Information Sheets. These sheets tell us that adverse reactions are extremely rare and focus on the more common and less severe local reactions and fevers. We do not give out vaccine package inserts. These list all of the reported adverse reactions that range from the local reactions to death. I have seen it said that the inserts are just developed by lawyers due to liability. To this I say: Vaccine manufacturers are not liable for the damage done by their products. The inserts aren’t covering their butts because they don’t need to be covered. Vaccines are also not appropriately tested for safety.

So, to be blunt, when I handed Mom the VIS and then administered four vaccines to her infant, she did not give real informed consent. Real informed consent for vaccination would go more like this (although, with the lack of real safety data, true informed consent is not possible):

“We are not going to do any testing or take a complete history to screen your child for possible adverse reactions to this (or these) vaccine(s). The possible adverse reactions range from swelling at the injection site, to autoimmune diseases,  to seizures, to death. We do not know if your infant will experience one or all of these. We are only going by the guidelines laid out by the CDC, not by the unique biochemical and historical characteristics of your child. Here are the package inserts for the vaccines we plan on giving your child. Here is the information about each disease we are vaccinating against. Please read through them and let us know what you decide.”

I never once said or did this when I was still administering vaccines. If I sit and really think about it, an overwhelming sense of guilt washes over me because I could have potentially injured many people, thinking I was providing them and their communities with protection. I read heart-wrenching stories of vaccine injuries and what the victims and their families have to go through, or worse, stories of babies or children who have died directly following vaccines, and I cry. I cry because I know that they were not giving truly informed consent when they agreed to those vaccines, and it easily could have been me giving them.

I am so very sorry.

I implore my fellow nurses, doctors and pharmacists to please research vaccines outside of what we were taught in school and told by our professional organizations and government agencies. We are violating every professional code of ethics when we perform these medical interventions on people without getting real informed consent. We need to inform our patients that “we just don’t know.”

“Do the best you can until you know better. Then, when you know better, do better.” – Maya Angelou

 

Nurse Advice: Get Thee to the Internet

 

As a nurse, two of my most important roles are as patient advocate and patient educator.  Being an advocate means that I am supposed to “promote or support the interests of another,” and as an educator, I am to provide them with information.  I have tried to advocate for and educate my patients in all of the nursing positions I’ve had, and now I am going to attempt this on a larger scale by encouraging every person reading this to use internet resources to do your own health-related research.  I know most people are accustomed to having healthcare professionals tell them to avoid getting health information off of the internet, but I disagree with that and strongly encourage you to do the opposite.

The first definition of the word ‘research’ that pops up on Merriam-Webster’s website is “careful study that is done to find and report new knowledge about something.”  During the time I’ve spent on the internet looking into (sometimes controversial) health topics, I have seen people completely dismiss information presented by another person because the person is not a scientist or doctor or other type of “expert” on the topic. Many times, the non-expert is a mother, like me, who has spent many hours searching for answers and help for her child, and is merely sharing the information she has found.  According to every definition I have found of “research,” it does not require a special degree or level of education to do.  In fact, in this Age of the Internet, the playing field has been leveled, and all of us have access to the same information as the “experts.”  Even full journal articles that were once only available for a fee are now free to access through Sci-Hub, so there is virtually no published research that the average person with access to the internet can’t find. Here is a Beginners Guide to Scientific Research from Chris Kresser, which helps us non-experts understand what we are looking at in research papers.

So, yes, you should do your own internet research about your health. You should also seek out other people who are interested in similar health topics, and share information with each other. Whatever your health issue is, I guarantee you that there is at least one FB group or other forum on the internet with other people looking for help and answers just like you.

Here are some tips for researching health-related topics and finding communities online. I have come up with these tips based off of my own experience in researching health and wellness outside of the mainstream medical world.

**At this point I should reiterate the disclaimer that I am not providing specific medical advice, and as the drug commercials say: Before making any lifestyle or medication changes, talk to your doctor about whether or not they are right for you.**

1.Search for Facebook groups related to your health condition(s). If you are not on FB, create a profile that doesn’t have any personal information on it. Create a new email and use a fake name if you need to. Pick a nice landscape shot for your profile picture. The caveat here is that some groups will not accept you unless they can verify that you are a real person with an active profile and not a troll. So, you may have to add more information about yourself and get some “friends” in order to join. The point is that you don’t have to post anything to your wall or involve yourself in anything other than groups on FB. Once you are in a group, ask your questions and use the “search group” function to see if they have already been addressed. Nine times out of ten there is at least one other person in the group who has similar experiences to you and may even has answers for you. If you don’t find what you need in the first group, look for different ones.  Some health practitioners such as Dr. Amy Yasko and Dr. Terry Wahls, have on-line forums outside of FB as well. If you are trying to decide on taking a new medication or having a procedure, I also recommend searching to see if there are any “victim” groups for it. If there are, join them and ask the people who feel that they were harmed more details to see if there’s a chance their experience could possibly be your own. Then of course, discuss these things with the professional who prescribed the medication to you. (It should go without saying, but I will say it: None of this applies to emergency situations. Go to the ER with emergencies, not to Facebook.)

2. Find and follow websites and public individuals who share information related to your health interests. I follow many medical doctors who use food as medicine on FB, for example. They post articles and blog posts that often have new research in them. You can “follow” them on FB, and the current setup is that you should click “See first” when you follow them so that their posts show up regularly on your newsfeed. Most big health personalities also have email newsletters available, if you prefer to stay away from FB. The newest way that the “alternative health” community is disseminating information from many experts at one time is via Summits. These are webinars that usually last about a week, and have presentations by or interviews with a few different experts available per day. Each Summit usually focuses on one health topic, such as anxiety, gut health, thyroid disease, etc.

3. Read the comments– This applies to everything you read on the internet. I cannot tell you how many times I have found better information in the comments section than I could in the actual article. Am I saying we should all believe everything people post in comments sections? Of course not. If you find something that piques your interest, research it further.

4. Be aware of and avoid astroturfing and trolls– If you haven’t already watched it, this Tedx talk by investigative journalist Sharyl Attkisson is a good brief description of astroturfing. From the video:

“ Astroturf seeks to manipulate you into changing your opinion by making it seem as if you’re an outlier-when you’re not.”

If you are researching a controversial topic that has big industry interests involved, such as vaccines or GMOs, you will definitely come across astroturfing and trolls. Being able to identify and dismiss them right away will assist you in getting closer to the truth about the subject you are researching.  One example from my internet research experience is that every medical doctor or researcher that I follow who publicly states and stands by an opinion that challenges the pharmaceutical industry’s interests, no matter how much valid science they have behind them, will be “discredited” on Quackwatch or Skeptical Raptor or Scienceblogs. Most of the substance of those articles is attacking the character or qualifications of the person, not the substance of their argument.

5. Share the information with others– I would not have discovered the diet changes I needed to make for my son if a brave mom in the CMS group had not put herself out there and shared her story. Since she was reporting that she was recovering her son from autism, she got quite a bit of blow-back from some other group members. In addition to upsetting people, though, she also helped several of us find the direction we needed to go to get real help for our children. I will be forever grateful that she made herself vulnerable like that, and I know many others are as well. So, if you come upon information that ends up helping you or your loved one, please share it with others, even if you know it will upset some of them.

I do have to warn against going to the opposite extreme of blindly following mainstream medical advice: Pursuing “alternative” medicine without the guidance of a knowledgeable practitioner. Many alternative treatments have the potential to cause harm if not administered properly. There are trained practitioners in aromatherapy (essential oils), herbalism, homeopathy, and chiropractic for a reason: You can do them wrong. My intention in encouraging you to do internet research is not to get anyone to abandon working with knowledgeable health practitioners altogether.

The best way to use the internet is to find information about your health and figure out the direction or directions you want to go in pursuing wellness, then bring the information to your practitioner and work as a team to come up with a plan. Finding a community with the same interests and values as you, either online, in person, or both, is also very important. I talk to people every day who are not happy with the state of their health and their experiences in the healthcare system, and on top of it, they are dealing with it in isolation. If you do not have support from anybody in your offline life, get online and find your people! You are not the only person going through whatever it is you are going through, I promise.

 

Please comment below or send me a message if you have a resource to share or you are looking for a specific health resource, and share your tips for researching health topics.

Where to Start Your Vaccine Research

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

  1. 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.

  1. 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.
  1. 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.

Unconventional Cancer Resources

**This post was originally published on my first blog in Sept 2015**

The “month of all things pink” is coming upon us fast, so I wanted to dedicate a post with resources for people who are looking for alternative or complimentary therapies and treatments to conventional cancer treatment (surgery, chemo, radiation, eat whatever you can keep down). We have all been affected by cancer at this point in history, some more personally and devastatingly than others. The people suffering from and struggling with cancer and their loved ones are always in my prayers. 

One specific thing I pray for is that more people look for ways to take action for themselves or their loved one to heal their bodies from the inside out. I pray that more people who get the diagnosis of cancer or see their loved one get it take it as an opportunity to make some serious lifestyle changes for the better. 

Note: Some of the websites or people I am posting about are very much against conventional cancer treatment of any kind. As with all medical decisions, I think the decision about what treatment or combination of treatments a person uses for cancer should be theirs and theirs alone. I do highly recommend researching optimal diets, complimentary therapies, and detoxification strategies for those who do choose to go the conventional route. Below is a list of places to start that type of research:

The Truth About Cancer: Ty Bollinger lost several family members to cancer, and subsequently has made it his life’s mission to share alternative strategies to conventional treatment with others. “The Quest for the Cures” is a great video series of Ty interviewing practitioners and survivors from all over the world who take an alternative approach to medicine, and specifically to cancer. 

Chris Beat Cancer: Chris Wark was diagnosed with Stage III colon cancer in 2003. He underwent surgery which removed part of his colon, ileum and a tumor. He then refused further conventional treatment and has remained cancer free to this date, mainly through nutrition. His website has a lot of great resources and inspirational interviews.  

CancerTutor.com: Website with a ton of resources about various different alternative cancer treatment protocols. 

CancerCrackdown.org :Tara Mann is a former pharmaceutical rep who then went on to found this organization. CC provides hands-on help to people trying to utilize alternative cancer therapies. They help them find the right practitioners and help them financially with all of the expenses of therapies not covered by insurance. This would be a great organization to donate to next month if you are looking for an alternative to Koman. 

Mykidhascancer.com: Ryder is a little boy fighting neuroblastoma. His parents have recently started a website that provides resources for people wanting help with natural options for childhood cancer. This month, September, is National Childhood Cancer month. There are many more kids with cancer these days than we collectively realize. This isn’t due to a genetic epidemic. Go to this website to learn how to do things to help prevent childhood cancer, as well as options for kids currently battling it. Ryder did go through standard chemo. 

Dr. Nicholas Gonzalez: Dr. Gonzalez recently passed away, but leaves behind a legacy of helping many people win their fight with cancer. He did what I think we all should do, and learned from history. He started as a journalist who interviewed a couple of people who were successfully treating cancer, then decided to go to medical school. He has a website, but I also recommend listening to any interview you can find on YouTube with him, and reading his books. I especially like that he individualized diets to the person, and didn’t believe everyone has to adopt one type of diet to be healthy. 

Healingcancernaturally.com: Another good website with many resources to choose from. 

This is a short list, I know, but all of these websites are great places to start your research about what steps might be right for you to pursue. There is no one strategy for treating and preventing cancer, so it will take some effort and research on each individual’s part to figure out what works for them. I pray that more people take the reigns and take more control of their health. It is possible and it is empowering!

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.

Motor Stereotypies: Our Story

My youngest child has a neurological condition called complex or primary motor stereotypies (also called stereotypic movement disorder). It involves involuntary movements of the arms, legs, hands, feet, head (shaking), or the whole body, and can also include facial expressions and vocalizations. Some people also attach Intense Imaginary Movements to this condition. There is a doctor at Johns Hopkins doing research on this condition, which you can read more about here **UPDATE: Tina Kline, Dr. Singer’s assistant, posted in one of the CMS groups that Dr. Singer’s CMS research is coming to a halt as of 11/1/15, due to lack of funding. This has not been confirmed on the website as of 11/1, though.**. They are referred to as “non-autistic” stereotypies, but my son is still too young to definitely rule out autism based on the current criteria. 


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.