Today's Aspergers Syndrome Corner 5 talks about Phase 1 of the bio-medical treatment that Kelsea has embarked upon along with her mom and dad. This is a must read as Dawn tells her readers about some new medical findings linking the use of Tylenol to ASD (autism spectrum disorders).
Last October (2011), I attended a wonderful conference on Autism Spectrum Disorder in Seattle, Washington. What I learned in that conference radically changed my family's world! I discovered that nearly every single symptom of aspergers/autism is really just a high level of toxicity (chemicals and metals) in the child.
A vast majority of the toxicity rests within the intestines, which in turn affects most brain function, including the central nervous system. This high level of toxicity is referred to as "body burden." The body can only handle so many toxins before it becomes over-burdened and fails to function the way it was created to. Furthermore, this body burden also inhibits the body's ability to take in and process the good vitamins and minerals from food. Therefore, they are nutritionally deficient as well as highly toxic.
We are bombarded with environmental toxins all day, every day. It is in our food, our water, the air we breathe, the chemicals we use around our house and on our bodies, the clothing we wear, the furniture we sit on, the carpet we walk on, the cars we drive, the stores we shop in... Coming into contact with toxins is completely unavoidable.
In fact, in a study of the umbilical cord blood of newborns, they are now detecting 287 different chemicals within that cord blood. 180 of those chemicals are cancer-causing, 217 are toxic to the brain, 208 are known to cause birth defects, and probably most shocking, nearly 200 of them have been banned from the market for years. Yet we are still passing them on to our children. Is it any wonder that special needs and learning disabilities are at an all time high?? (and the numbers are still rising!)
There was one particular speaker at this conference that was fascinating to listen to. He was Dr. William Shaw of Great Plains Labs in Lenexa, KS. He is a leading bio-chemist studying Autism Spectrum Disorder (ASD), especially the causes. During the conference he shared that he felt he had found THE leading cause of ASD, had planned to share his findings at this conference but needed a little more time before releasing his discovery. He decided instead to release his findings during a webinar in January.
Well, you can bet I signed up right away for that webinar!! And his findings were so shocking that it is still hard to believe. The cause of autism?? Acetaminophen! (yes, TYLENOL!) It can affect a baby in the womb if the mother takes it and affects an infant/child through the use of children's Tylenol. (Acetaminophen is in a lot of other products, not just Tylenol)
Dr. Shaw discovered this because in Cuba there are virtually no cases of autism, yet they have the same stringent vaccination schedule we have here in America. And because of the government control there, they have NO acetaminophen available for purchase.
Also, autism had a massive spike in the 80's. What happened in the 80's? Reye's syndrome. "Don't give your children aspirin, give them acetaminophen!" What do you give your child before and after immunizations? What do you give them when they have an ear infection or a high fever? Acetaminophen!
The real problem is giving it on an empty stomach. And when a baby is sick, that is generally when you are giving them baby Tylenol - on an empty stomach. What happens is that acetaminophen on an empty stomach totally eradicates the glutathione in a person.
Glutathione is vitally essential because it is what carries toxins out of the body. No glutathione, no removal of toxins - and they keep building and building. Also, NAPQI is created and that then begins to affect every chemical and function in the body. It causes high dopamine which in turn causes obsessive compulsive disorder. It creates a decrease in norepinephrin which removes the brains ability to understand cause and effect (why discipline doesn't work!). And so on and so forth. (I am not a bio-chemist so I am not going to be able to explain it in quite the same way Dr. Shaw did!)
After hearing this webinar I just sat and cried. I caused this? Because I gave my daughter baby Tylenol? It broke my heart first, and then made me angry at the drug company. (He did say that he fully expects mass lawsuits in the coming years).
While in Seattle, I had the privilege of speaking with Dr. Shaw personally and he directed me to a specialist (Dr. John Kucera) here in Colorado Springs that treats autism bio-medically. Dr. Kucera uses the Defeat Autism Now (DAN) protocol that has been highly successful in treating many aspects of ASD. I contacted Dr. Kucera's office immediately and made an appointment for our daughter, Kelsea (who is 20 years old).
Before our initial appointment with him, I started to do some research on my own and as a result, decided to start making some of the changes now rather than later. If Kelsea was unable to eliminate toxins from her body, then it stood to reason we were going to have to do everything we could to eliminate her putting them into her body in the first place!
In my research I discovered that most of what I was feeding my family was REALLY not good for us. Yes, we ate a lot of fresh fruits and vegetables, but they were not organic so they were loaded with pesticides. All of the processed foods were filled with aspartame and high fructose corn syrup - both highly toxic to our bodies. The meats we were eating had antibiotics and other dangerous chemicals in it. I could go on and on.
Kelsea and I got a big trash bag and pretty much emptied our refrigerator and our cupboards. Then we went shopping - at Vitamin Cottage and Whole Foods - stores that carry organic, natural foods without pesticides and processing.
We also totally eliminated gluten from our diet. Gluten is almost always a problem for kids with ASD and ADHD. AND I had also discovered in my research that gluten was a factor in my health problems as well.
I have had fibromyalgia and chronic fatigue for years. I also had unexplainable skin rashes and irritable bowel syndrome. Literally, within one week of going gluten free my 17 years of chronic pain completely disappeared and I was able to go off of all my medication. My bowel problems completely cleared up, intestinal pain disappeared and even the rashes were gone!
I have since learned that the vast majority of Americans would benefit from going gluten free. Gluten has become such a problem in our diet because of the genetic modification of our food supply. They have changed the genetic code of wheat to have 90% more gluten than it did 100 years ago. Man is ruining what God created as good and our bodies are suffering as a result.
Our first appointment with Dr. Kucera, as well as a nutritionist, was a lengthy one. (three hours!) It felt like he ordered about every single blood and specimen test known to man! The next three weeks Kelsea and I were measuring out urine, cutting her hair, taking saliva samples throughout the day, and had non-stop visits to the lab so blood could be drawn. Thank goodness that Kelsea is not bothered by needles! (however, the urine samples caused daily meltdowns!!) Before I get to the results of these tests, I want to share just a small sampling of "symptoms" that Kelsea struggles with.
These "symptoms" cause great strife and dissension in our family. She can control herself out in public, up to a point (she has had a major meltdown in public a time or two), but at home she is a completely different person. She has huge sensory problems so everything annoys her and gets on her nerves. Some mornings she comes out of her room screaming at me for some inconsequential reason and I know it is going to be a really bad day.
Most days are bad days! In order to maintain a semblance of normalcy around her, she must maintain control of everyone and everything. She needs perfect quiet in our house, and we can get screamed at if we even consider sitting in a spot on the sofa that she was "planning on sitting at." Or if we grab the remote control to watch TV she gets very upset because either she was going to watch something in a half hour or she wanted it quiet and we are now the grim reaper killing her peace and quiet.
Griping and complaining are pretty much the norm coming out of her mouth every waking moment. Nothing is hot enough, cold enough, hard enough, soft enough......everything is too loud, too smelly, too annoying and so on. We make her do chores around the house, but I have to endure chronic complaining the whole time she is doing them. And I am just barely touching the surface of how very difficult it is to live with her. Stress is an absolute constant in our home - peace really doesn't exist.
Now, to most everyone, that would sound like a spoiled, rotten brat that has usurped total control over her parents. However, we have tried every way imaginable through the years (every disciplinary measure known to man) to put a stop to this behavior and it might last for a day or two at most, but then she is right back to the usual. After much research and talking to other parents of kids with aspergers, autism and ADHD, her behavior is unfortunately pretty common. Their central nervous system is frazzled all the time, so they are too. Nothing works with them and they can be totally out of control.
Kelsea's Dr. refuses to put labels on anyone (aspergers, adhd....) because he says they simply do not exist. Instead, there is a total dysfunction in the way their body chemistry works and quite often it is food related and heavy metal related. That is exactly where we are with Kelsea. And her test results were eye opening.
My first question at the follow-up appointment was about the glutathione test (the Dr. and nutritionist were shocked I had even listened to the webinar!). Sure enough, Kelsea has NO glutathione in her body. Every toxin that she has been exposed to since she was an infant has stayed in her body which is why she has gotten worse and worse over the years. But there were a lot of other troubling results as well.
First off, she is excessively high in mercury, which we fully expected. If you take immunizations with thimerasol (mercury preservative in some of the vaccines) and take Acetaminophen at the same time, your body stores the mercury and can't eliminate it. She is also very high in copper which really shocked the Dr. and nutritionist and they cannot figure out why.
There were a vast number of inconsistencies in critical brain chemicals severely affecting her central nervous system, but you would have to have a doctorate in bio-chemistry to understand them - which we do not. Just took the Dr's word for it! She is chronically low in a lot of essential vitamins and minerals (as expected, due to NAPQI) and in potassium, lithium and rubidium. She also has an imbalance of minerals.
Dr. Kucera said that every single one of her test results pointed to a person that would be completely and totally emotionally out of control. That would definitely describe Kelsea!
One other test that we knew was going to come back with great issues was her neuroadrenals, her cortisol and serotonin that affects the wake, sleep cycles. For most of us (on a chart) our neuroadrenals start way high in the morning and move down gradually all day long in a bell pattern till it bottoms out at the end of the day when we are ready for bed.
For most people with autism and ADHD, it is exactly the opposite (which we also expected with Kelsea). However, her chart totally mystified the Dr. because in all his years and through thousands of patients, he has never seen it like that before - she was flatlined on cortisol all the way across. The only time of day she is in the "normal range" is about 8:00 at night. And honestly, that is about the only time of day she is pleasant! So they decided to run more tests because they were pretty sure that high metals could be a problem with this.
So for us, in addition to changing our diet to 100% organic/whole food, minus gluten and casein (basically all milk products) we also are starting Kelsea on a slew of new supplements and all natural treatments. Our first round consists of 8 different supplements and then more will be added later, as well as other possible treatments like infrared sauna, hyperbaric chamber and so on.
If you are thinking this all sounds extremely expensive, you are hitting the nail on the head. But at this point, finding peace and normalcy for Kelsea is priceless. And the Lord has provided our every need. Dr. Kucera said that it probably wouldn't take long before we started to see some significant changes in behavior. I think we are all looking forward to that!
So that is phase 1 in our bio-medical treatment journey. I do want to encourage everyone that if you know anyone with young children or who are pregnant, tell them to NOT take any acetaminophen EVER! (actually, no one should - it affects adults the same as children!)
One final piece of information Dr. Shaw shared that I want to pass on - if a child has a fever, don't give them ANYTHING to cause it to break. A fever up to 105.6 degrees is actually safe because that fever is the body's way of fighting off what is assaulting it. The fever is important! When you take something to stop the fever, you are eliminating the body's defense mechanism. Just a little FYI!
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