One out of three people may have reduced ability to produce enough methyl enzyme. It’s a very busy enzyme. Lower producers will be impacted in many ways including inability to get B12 and Folic Acid in to the cells where it is needed. These Bs are essentials for nerve health. Children struggling with weakness, fatigue, difficulty holding head up or sitting upright, torticollis, or dystonia might be low on folic acid at the cellular level. See below for a list of the uses of folic acid in the body.
The solution to not having enough methyl? Take METHYLATED versions of these vitamins so your body can get them to the cellular level. Everyone needs their Bs!!!!
Check your vitamins to find out if the Bs are the activated kind!!!
You want to see METHYLcobalamine and Activated Folinic Acid on the label. Additonal names for the methylated form of folic acid are 5-Methyltetrahydrofolic acid, 5-MTHF, Metafolin or methylfolate.
Here’s an example of a b-complex with activated folinic acid and methylcobalamine available from Whole Foods – about $20/bottle – Amazon $15/bottle
Emerald Laboratories B Healthy – Raw Whole-Food Based Formula with Prebiotics, enzymes and probiotics.
The excerpt below is from: http://www.custommedicine.com.au/health-articles/folinic-acid/
A genetic defect called MTHFR gene polymorphism is responsible for dihydrofolate reductase malfunction which prevents the activation of folic acid. A simple blood test (called a MTHFR Gene Test) can determine if you carry this faulty gene and thus are unable to convert folic acid into its active MTHF form. Some researchers believe that up to half of the population may carry this defective gene. Symptoms of this can include weight gain, fatigue and depression. If found to be present it can easily be treated by using folinic acid or better still MTHF.
Folate coenzymes are responsible for the following important metabolic functions: 1) Formation of purines and pyrimidines, which in turn are needed for synthesis of the nucleic acids DNA and RNA. This process allows cell replication to occur and is thus essential. This is especially important during fetal development in the first trimester in preventing birth defects, such as neural tube defects, 2) Formation of heme, the iron-containing protein in hemoglobin. This enables oxygen transport throughout the bodyand thus energy production. 3) Interconversion of the 3-carbon amino acid serine from the 2-carbon amino acid glycine. 4) Formation of the amino acids tyrosine from phenylalanine and glutamic acid from histidine. 5) Methylation of homocysteine into the amino acid methionine. Elevated levels of homocysteine have been implicated in a wide range of health disorders including atherosclerosis, osteoporosis, Alzheimer’s disease, and depression. In the reconversion of homocysteine to methionine the body uses the methionine to make the important amino acid s-adenosylmethionine (SAMe) which is known to be helpful in cases of depression. 6) Synthesis of choline from ethanolamine, 7) Formation and maturation of red and white blood cells, and 8) Conversion of nicotinamide to N’-methylnicotinamide.
9) The production of certain neurotransmitters such as dopamine, adrenaline and noradrenaline rely on the methylation reaction which is dependant on THF.
10) Energy production also relies on the methylation reaction, and thus MTHF, and a slow rate of methylation has been linked to chronic fatigue.
This is Part 5 of the Brain Gut Connection series. It is my understanding of the impact of nutrition and genetics in children with special needs as explained to me in conversation with Elinor Silverstein.
In previous articles Elinor has detailed how important nutrition and properly functioning metabolism are to everyone’s health. She has discussed how the gut and the liver work and how dysfunction can impact the brain, CNS, muscle tissues, and other systems of the body due to inflammatory response, inability to eliminate toxins, and/or inability to deliver nutrients to the cells themselves.
Good nutrition and metabolism are important to any growing child, but children with special needs are more at risk for the issues Elinor has discussed to cascade into severe limitations. Many doctors and medical professionals are making information available about the impacts of nutrition on children with Autism Spectrum Disorder and similar conditions. What is less known is the impact on of deficiencies and toxicity for children with Cerebral Palsy, torsion dystopia, Torticollis, and other neuromuscular conditions. Knowledge of this relationship between movement disorders and the Enteric Nervous System can change the course of a child’s condition. When the gut calms down and children get the nutrients their bodies need to thrive, improvement is dramatic.
The Viscera Elinor is a highly skilled Feldenkrais practitioner. She was trained by Moshe Feldenkrais and was mentored by Gaby Yaron and Ruthy Alon. Years ago she asked Gaby for advice about her work, “What else can I do to help?” Gaby responded, “Everything in the body is connected. People will leave your lesson improved and come back next week crooked because you never talked to the organs and connective tissue in the abdomen.” To do this Gaby worked very deep in the viscera, but Elinor found that she could put her hands very lightly on the belly and feel something pulling and moving.
Years later, a well-known physical therapist who Elinor was working with, and is one of the main Upledger teachers, explained to her what she was feeling. While Elinor used Feldenkrais hands and touch, she constantly felt pulls and movement. The PT, showed her the anatomy and physiology of sphincters and connective tissues suspending the organs, and what they were doing while receiving this kind of touch. A light went on and Elinor moved forward with this in her way of working with her clients. Especially, those in dire need. Slowly, but surely, more and more of the people who came to her practice improved quicker than before. She created lessons to teach them what she was doing and how they could use their movement lessons to help their organs function in synchrony with the rest of their body.
Sphincters are the ring muscles that function by closing and opening. The most well known are the gastric-esophageal sphincter where people experience reflux from the stomach to the esophagus, and the anal sphincter that controls the passing of bowel. We have sphincters in many places throughout the body including around the orbit of the eye, between the liver and the bile ducts etc. Sphincters in the body are related to each other in a rhythmic way. Deliberately contracting one sphincter, such as pursing lips, can impact the other ring muscles in the body.
Elinor explained that some of this understanding of the viscera comes from the work of osteopath and physical therapist, Jean-Pierre Barral, the founder of the Barral Institute. Also, Ruthy Alon, a masterful Feldenkrais practitioner and founder of “Bones for Life”, was “huge on the sphincter muscles” explained Elinor. In 1981, Ruthy recommended reading the book “Secret of the Ring Muscles” by Paula Garbourg, which became a major source of information and inspiration for Elinor.
Spasticity and the Gut Elinor uses her knowledge of visceral and sphincter functioning through the lense of Feldenkrais thinking. She incorporates healing the gut, ensuring that nutrition is being delivered to the cells, eliminating toxic build up, decreasing inflammation, making a healthy and viable connection between the enteric and central nervous systems, and always remembers the millions of years of evolution from which we have come. By using our body in movement we can work with all of these systems as a whole.
We have two nervous systems. The Central and the Enteric Nervous System. The Central Nervous System (CNS) is the brain, the spinal cord, and nerves connecting to the tissues of the body that have to do with physical movement. The Enteric Nervous System (ENS) is embedded in lining of the gastro-intestinal system (gut). It has been called our second brain. It includes everything that involves the organs and the viscera and it can operate separately from the brain and the spinal cord. Working in the mouth is working with the enteric nervous system. What goes on in the mouth with enzymes and acids goes on in the rest of the enteric nervous system.
Each nervous system influences the other. Sitting crooked can affect the gut. Gut issues can affect posture, tonus and the entire CNS. When the ENS starts to spasm it trips off the CNS too. In her work with children with movement disorders Elinor can feel a wave of spasticity originate in the Enteric Nervous System and move its way to the Central Nervous System. The origin of the spasticity can be the ENS.
Elinor says, “When I put my hands on their belly and show the viscera how it can function properly the contractions with the arms stop and torsion and twisting of the head, neck, and spine quiet down without even touching the limbs and skeleton.”
HUGE VITAL INFORMATION!! Kids with CP almost always have gut issues, says Elinor. She explains, children with hypoxic trauma have experienced oxygen deprivation in both the Central NS and the Enteric NS. Both systems directly communicate with each other. You cannot damage one without damaging the other. The recent concept that we have 2 brains for nervous system control, one in our head and one in our gut, helps us to understand this relationship. The impact of hypoxia to the CNS can appear as damage to parts of the brain that control movement and thinking. The impact from the same hypoxic event can cause damage to the ENS which will appear as dysfunction of the organs and intestinal tract. This is why these children seriously suffer from constipation and other dysfunctions of the gut. A truly fantastic way to take care of the brain is to take care of the gut, states Elinor Silverstein.
In extreme cases Elinor sees the belly in these children become big and bloated, the head and neck arch back, their arms go to the sides, there is excessive sweating, and there can be difficulty breathing. Some part of their nervous system is being triggered because of existing damage in the ENS from the oxygen deprivation. As a seizure can move through the brain in the Central Nervous System, this same kind of chaos can move through the Enteric Nervous System. Stress can trigger it. Hunger can trigger it. Anything that jolts the system can trigger it. Elinor says this can be worked with and these children can be helped. We are teaching them to have tools to self regulate.
In addition to the existing trauma to the ENS that occurred at or near birth, or in utero, there can be all the issues Elinor has discussed in previous articles, such as reduced or non existent vitamin and mineral absorption and wastes being reabsorbed back into the systems and taxing the tissues, the cells of body, and the body’s ability to eliminate waste and toxins.
Elinor Silverstein has shared video of her teachings on Youtube. Below are some examples with a brief description. For more videos go to Elinor’s Youtube Channel and browse for her videos about children with special needs.
Example 1 – Dylan – Cerebral Palsy, Seizures
Dylan would improve and be great for a week and then go backwards. We needed to work with his gut health, said Elinor. He had very strong cerebral palsy, was hospitalized frequently with seizures.. Eventually, if he regressed he could return to balance with a 30 minute lesson. Sadly, Dylan recently passed away very quickly from what might have been a flu virus. Have no doubt he lived a very gracious, happy, and fulfilling life through his young childhood. Here are short video clips filmed with Elinor Silverstein in which she discusses the things that helped him be a vital little guy.
Example 2 – Miles – Very Important talk – Methylation and the Liver’s ability to detoxify
A short video in which Elinor explains methylation of the liver, and what it means, it’s vital importance, and how to check for MTHFR gene variations. It’s a Simple, simple, simple test for the MTHFR gene variation. Elinor explains how methylation relates to the FM and how we might approach it. Recorded on January 6, 2011 using a Flip Video camera. Video quality is poor, but the content is so valuable Elinor wanted to include it here.
(video coming soon)
Example 3 – Annabelle – Working with metabolic issues 3.1 (part 1 of 3)
If you would like to view a complete lesson with Elinor Silverstein, here is a the first part of a 4 part series of videos showing one lesson with Annabelle. You can hear conversations between myself and the parent exploring the ideas about metabolism and it’s impact on the movement disorder in their child.
Some signs Elinor has mentioned that might indicate your child’s issues with their musculoskeletal system/brain might be connected to their Gut:
One eye moving differently than another (alternative issue to strabismus) nutritional deficiency
Teeth not erupting and positioning correctly – nutritional issues
Eyes showing more white around eyes – strong indication of processing issues
Breathing pattern seems to be very quick – erratic – possible nerve tone issues
Scratching, itching, skin problems-nutritional issues, especially fatty acid deficiencies
Bright pink cheeks, or face suddenly turning red -allergies, possible reaction to food(s),
Ears flushing – possible nervous system dysfunction
Baby crying from lying on back in stroller in malls but fine on stomach – processing issues – overwhelmed by stimulation from floursecant lights and passing images
Babies’ reactions to things nursing moms eat – watch for skin color, eyes, mouth shape, temperament changes
Spasticity – issues with the nervous system, and/or with B vitamin deficiency
Torticollis – turning of the head to one side with a twist of the spine – B vitamin deficiencies, especially methylated folate.
Scoliosis – possible ENS dysfunction
Seizures – can indicate CNS and/or ENS (gut) issues
Nutritional deficiencies -Can be seen as cravings, issues with skin, hair, behavior, and/or sleep
Belly distended – never normal – can be formation of Gas/Wind – swallowed air – reaction to food, sign of inflammation and swelling in the viscera
Diarrhea – possibilities: pancreatic enzyme issues, gut bacterial flora not normal, sphincter disregulation
Constipation – possibilities: food sensitivity/allergy, gut flora not normal, issues with mobility and motility of gut intestines and organs, sphincter disregulation
Seeking more information
Here are some of the professionally specialties that help with these areas of health and well being. Interview the professionals to make sure their specialty or they cover these concerns. Bring list of your concerns and your child’s symptoms.
Pediatric Functional Medicine Doctor – Institute for Functional Medicine (IFM) Naturopath Homeopath Pediatric Immunologist Pediatric Allergist Metabolic Specialist Pediatric Nutritionist
Elinor says “An educated parent is a happy parent. An educated, happy parent makes for a happy and healthy child. Now that you have some tools for viewing your child more fully, you can use your eyes and know what you see, and what you can do to work with him/her. This way your child can have a world of possibilities for growth and well-being. And that is a gift.”
Future articles in this series will focus on the Vagal nerve connection between Gut and Brain, nutritional supplement recommendations for healthy guts, and how to get more information through testing.
This is Part 4 of the Brain Gut Connection series. It is my understanding of the impact of nutrition and genetics in children with special needs as explained to me in conversation with Elinor Silverstein.
Elinor is very passionate about is the importance of the Methylenetetrahydrofolate reductase (MTHFR) enzyme. It is encoded by the MTHFR gene. Variations in this gene were formerly thought to be quite rare but it is now known to be more common. Elinor has had hundreds of people tested for this gene variation and all but 1 have had it. Dr. Allen Green, MD states that 1 in 3 people now have this gene variation. The impact on health and the ability to help people with this variation is huge.
Elinor explains that the methyl enzyme is used in the process of combining folic acid (B9) and methyl ions (one carbon bound to three hydrogen atoms) into L-5-methyltetrahydrofolate (L-5-MTHF) the metabolically active form of folic acid. Deficiency in activated folate has been implicated in heart disease, difficulty issues with pregnancy and fetal development, difficulty carrying pregnancy to term, movement disorders, and even high blood pressure in slender healthy people who should not have high b.p., brain fog and others.
In addition, Elinor indicates the inability to convert methyl is tied directly to many other health issues including metabolism of nutrients and the detoxification process. When these processes are disrupted it has a big impact on health in the short term or long term as deficiencies and toxic load increase over time.
B12 is essential for healthy nerve cells. It works with Folic acid to build the genetic materials of all cells, maintains healthy cell function and development, and assists in the production of enzymes. B12 is a key micronutrient that supports immunity and lymphocyte function. Elinor notes that it is important for people to know that when a senior citizen does not receive the methylated form of B12 there are often signs of serious neuropathy in the legs and feet, fuzziness in the head or confusion, or even senior depression, and versions of dimentia associated with it. All this is directly tied in to the fact that a very crucial nutrient, B12, is not getting to the central nervous system and to the brain.
Elinor explains that there are two forms of B12 – methylcobalamin and cyanocobalamin. She says that a person with the MTHFR gene often might not utilize B12 well, and if they take the vitamin supplement in the form of cyanocobalamin it will only make the blood levels go up, but not actually get utilized by the cells. The most usable form in these cases is the methylcobalamin form. It can be used in the cells and transported to the brain and nerves very easily which leads to healthy brain functioning and active nerves all the way down to the legs and feet. She talks more about this in more detail for nerve health.
Elinor says, “You just don’t want such large doses floating around not going everywhere they are needed after many shots (of cyanocobalamin). I know, my mother felt better after the first injection of cyano– but after several injections her blood levels were crazy high, because they were not completely being utilized and the doctor wanted to stop her injections. I told him that if you stop, she will not feel well again. She needed methylcobalamin instead, and she would feel as good, AND the levels would stay good, healthy and normal, because they would be UTILIZED in every way they should be. Sooooo AWESOME, Yea!!!”
NOTE: Elinor recommends everyone supplement B12. ”Yes, everyone should. It’s so cheap, and so easy to do. I give myself a shot every month just under the skin with methylcobalamin. Both my sons do, and so does my mother.” ”Live long and prosper, and take your methyl B-12!”
Elinor explains there are 3 stages for detoxification in our bodies. We take in toxins from our environment through what we eat, breath, drink and have skin exposure to. Stage 1 these toxins are absorbed by the liver. Stage 2 the toxins combine with with L-5-MTHF to then send the toxins to be excreted. Stage 3 is excretion, primarily through the kidneys as urine and intestines as stool. If there is not enough active folic acid to do the toxin conversion the liver pushes the extra toxins out to the blood stream where they deposit in blood vessels, organs, muscles, tissues, the brain, and the peripheral nervous system.
Elinor, herself, gets tested every two years to measure her body load of heavy metals using a urine challenge test. The test for heavy metals uses Ethylenediaminetetraacetic acid (EDTA), a chelating agent. It is most reliable to administer the EDTA by IV in your doctors office because it does not depend on the EDTA passing out of the intestine as an oral dose does. And, it is not expensive.
The body load of heavy metals and other toxins can get progressively worse. Factors such as vaccines or anesthesia can compound the problem by increasing the demand on the liver to do its job. People with the MTHFR gene variation will usually have difficulty metabolizing anesthetics. They may have more difficulty waking up and may be throw up until they start to recover from the toxic overload.
An inexpensive blood test can identify whether this gene variation might be an issue for you or your family member. If one finds they have the variation here are a few things you can do to augment this methylation process. Elinor says, ”Take sublingual B12 daily, however, I found for myself that the shot every few weeks works much better. Also, eat sulfuric foods like fermented cabbage and kimchi. You can also add kale, broccoli, and other good dark greens that contain sulfuric compounds. I really love garlic and onions. All of these foods are sulfuric in nature which helps in addition to B12 and activated Folate to make the methylation process. How awesome it truly is when our foods can be our medicine!”
Future articles willI be about spasticity in the gut and visceral work, nerve health, and constipation and seizures recommendations for nutrient supplementation.
My priority for my son was to be a part of the community around him. A child’s social learning is about how to be a friend, how to care for other people, how to be part of a group. It’s a very complex apprenticeship that we somewhat expect to just happen. There are built in learning opportunities like extended family, or school but most parents unconsciously understand their babies and children need social contact so they have play dates, form play groups, enroll their children in nursery schools, sports, and extra curricular activities. I knew it was important for my son to have as much social contact as possible.
Being around peers enables children to learn and practice the interactive skills they will use as an adult. They learn to share, to take turns, to respect other people’s property and space and the dynamics of give and take in a relationship. Skills learned and observations made in the family unit are tested to see if they apply in this new situation. Who is in charge? Who makes decisions? How do friendships form and continue? Hours and hours of experimentation and testing go in to their exploration of relationships with peers.
A child with a disability is at risk for not having the opportunities to learn the social skills we take for granted. Physical limitations can make it tough to keep up or join in. There can be similar problems with limitations in communication, vision, understanding (cognition), emotional development or even just the energy level to keep going with the others. My son had limitations physically, in communication, and in energy. He also spent a huge amount of time in therapies. That might be considered a time limitation.
My vision for my child was that whatever the outcome of therapies was, he would be able to be a happy, productive person in society. Whether or not he could walk or talk I felt that engaging with other people was the key to a happy satisfying life. I would have gladly continued to assist him in whatever way he needed me forever, but I knew what independence would feel like and I wanted that feeling of power and autonomy for him. I understood early on that being in a restrictive environment might be hugely helpful for SOME of his needs but would not take care of ALL of his needs. The only way to learn to engage and interact in society was to learn people skills and practice them as a child. He needed to be around peers who would become the adults that he would encounter in a community.
So, I started my son in a regular preschool at the same time he started the special school where all his limitations would be accomodated and he would learn computer skills he would need in kindergarten. Two days a week I would take him to Miss Margie’s class where he became part of the group, made friends, and participated in the pacing and flow of those typical child activities. He spent one year in a special kindergarten continuing to refine his technology skills but that teacher also merged her class throughout the day with a typical kindergarten class. Don left the special supportive setting and entered a regular first grade class the next year. He had an “itinerant teacher” who travelled around the district checking on special needs students who were enrolled in regular classes. Everything went well until we neared the end of second grade. Don was struggling with reading. We now suspect that he has damage in his left cortex that affects the centers he needs for reading. The special teacher was coming in to class to give him one to one assistance but I knew that he did not have the reading skills his peers did to move on to third grade. I asked Stephanie, the specialist, what was going to happen.
Stephanie Ingnatenko taught me about remediation and compensation. She explained that when there is a limitation there are two approaches possible. One is to remediate, to help the person gain the learning that is limited. The second is to compensate, to find some way for the person to not be so limited by the lack of learning. The one on one reading help Don was receiving was remediation. The Anat Baniel Method focuses on remediation. Most surgeries are remedial. Brain Fitness software is remedial. Having Brail books for the blind is compensation. So are wheelchairs, walkers, crutches, electronic talkers, audio books, etc. Remediation is focused solely on building the learning that is limited. Compensation is focused solely on making sure that the limitation does not interfere in other arenas.
Stephanie explained that Don understood the science, history, english and math curriculum perfectly. He could not do reading assignments and taking notes was a very energy intensive long process. He would have compensations so those two limitations should not keep him from moving forward. We weren’t giving up on reading, there would still be remediation with a reading specialist, but Don would move on to third grade with his peers.
The classroom teacher chose a “reading buddy” for Don each week. It was a very coveted position. These were NOT always the best readers, but what better motivation for another student than to be the “special” person who got to read aloud to Don? Wow. I was so impressed. In one action Don became part of the group, had his need taken care of, and the other students benefited too. In later years other students used carbon paper to make him a copy of their notes they were writing, and in college he gets regular emails from someone in the class with their notes.
Some tools combine remediation and compensation when they assist with a limitation but also contribute towards building that same skill. There are AFOs which are compensating for a limitation in the ability to use the foot and ankle, but are also designed to give the child an opportunity to continue to learn. The Kidwalk walker (dynamic stander) has features like the weight shift mechanism which allows the child to shift weight side to side during movement, and the swivel self centering seat which allows the pelvis to turn from side to side during walking. These features help children gain skills toward walking independently while the Kidwalk provides the ability to be upright and move for those that can’t stand and maintain balance yet. Augmentative communication devices (talkers) compensate for a child who can’t yet speak, but also allow for language learning because the child has the opportunity to experience communicating and using nouns, verbs, etc to put communicate thoughts.
Parenting a special needs child does not come with a guide book. There is no model to follow. Even if in the past another child grew up with the same limiting condition(s) it does not predict the path or outcome for your child now. Learning is based on experience. Technology changed that opportunity for experience for my son. New inventions like the cutting edge walkers and AFOs are changing the opportunity for other children. New ways of working with the brain are changing children’s experieinces. Being aware of whether remediation or compensation are used can help parents to see the big picture of their child’s experience and help them to make informed decisions. Parent’s can question, “is this helping my child have more experiences?”, “is it creating more limitations in the future?”, and “is there another solution which will both remediate and compensate?”.
Here is Part 1 of my understanding of the impact of metabolism and nutrition for special needs children based on my conversations with Elinor Silverstein.
In preparation for publishing this article I spoke with Elinor again today. She is so excited to have this information being sent out to more parents and professionals.
“I worked with a young man who had severe torticollis, dystonia, apraxia and autism. We completely got him on the road to feeling better using this nutrition!” —Elinor Silverstein
A little about how Metabolism works
The process of absorbing, converting and using nutrients is metabolism. When someone has a metabolic condition some part of the process is not working properly. It could be the wrong food coming in, absorption being blocked by inflammation, missing components for conversion, or inability to use the nutrients at the cellular level.
Elinor explains, ideally we would eat what we need and all food would be utilized for the keeping us at peak health and ability to do what we wish to. Reality can be somewhat different. Some nutrients are utilized in the form we take them in. As long as they are actually in our food in adequate amounts and our ability to absorb them is functioning well they are simply put to use.
What goes in
There are many articles available about the changing quality of our foods. The nutritional value of our food has been altered in order to produce greater yields. I’ll talk more about that later when I tell you what Elinor knows about the changes in gluten in wheat. Just know that you can’t take for granted that the food you buy has all the nutrients you expect it to.
What gets used
Elinor explained what can happen when the intestinal tract is not healthy. Absorption happens through the intestinal wall so it’s very important that it be in good shape. Inflammation has a huge impact on the lining of our intestinal tract. Inflammation is not being sick or injured. It happens when our body believes the immune system needs to kick into action because something is there that should not be there. An immune response brings white blood cells, and extra circulation. When this happens in response to something we chronically eat the intestinal walls can begin to swell, villi that normally absorb nutrients become inactive or damaged, and over time, there can even be perforations in the intestinal wall leading to leaky gut syndrome. Guess what? MORE stuff for the body to react to. Nutrients are NOT supposed to be in the body cavity. Food allergies begin to appear for whatever is leaking into the abdomen.
More complex processes
The second way that nutrients are utilized is when they are absorbed and then converted through an enzyme action to become something useful, said Elinor. If there is no enzyme then the conversion is not possible. Sometimes nutrients are working together synergistically in these cycles to produced the required outcome. The products of these cycles are not optional parts of our systems – these are necessities for further processes and for good health and functioning of all the cells and systems in our bodies.
What goes out
Then there is the clean-up crew. When these processes of conversion or the actual use of nutrients happen it generates some byproducts. Byproducts plus toxins we consume or come into contact with through our lungs or skin all need to be eliminated from our bodies. We have the liver, kidneys and skin for this. The liver uses methylation in the transsulfuration pathway to process out toxins. (I promised Elinor I would use that sentence. Google it for many links to more information.) If toxins are not processed out of the liver they immediately exit the liver in to the blood stream, which in turns transports them to the brain and other tissues through the body, explained Elinor. Toxins such as heavy metals deposited in the brain, heart and muscle tissues create the conditions that doctors have names for like high blood pressure, peripheral neuropathy, diabetes, and heart disease.
The magic of methyl
What it means to you and I is that there is a good chance that the methyl form of supplements like B12 is useable while the other forms just make your blood tests look good and don’t go in to the cells. More about that when Elinor discusses supplement recommendations.
Disruption in the ability to produce the methyl piece are caused by a genetic anomaly. It used to be considered rare. Then it was considered more common place. Elinor has tested hundreds of people for this gene anomaly and ONE did not have it. The rest did. We will go into more detail about the impact of this genetic change.
Next I’ll cover gluten, supplement recommendations, genetic testing, and their relationship to children with special needs with disabilities such as autism, Torticollis, dystonia, ataxia, and cerebral palsy.
Dr Hyman is a functional medicine doctor who writes repeatedly about the impact of metabolism on health. He helps many children and adults by addressing this foundation and making sure that their body has what it needs with supplements and tests to identify what is NOT working. Tests for specific genes shifts can explain why some people are more likely to have deficiencies or mitochondrial disorder which affect their ability to produce energy or detoxify.
Here’s what Anat Baniel has to say about Dr. Hyman’s insights on her Facebook wall:
Let’s hope that more doctors will start seeing the individual!
“My work has always been based on getting the person and their entire system to work better, not on “treating pain” until it goes away. Someone may walk in with back pain and just want to make it go away, but in reality what needs to happen is that person’s whole system needs to find a better way of working as a whole in order to find solutions that don’t cause pain. Every thing that happens to a person is intricately linked to everything else about that person — which is why doctors should treat the person, and why I have always had a holistic view of people, their health, their needs, and my work!”
Here is an article with more detail about how this perspective can really impact the Autistic condition. These ideas about necessary nutritients and metabolism does not just apply to children with autism.
I’ve spoken extensively with Elinor Silverstein about this relationship between brain, body, and metabolism. Elinor’s knowledge comes from her background as a scientist with Biology and Zoology majors, and Pre-med and Pre-vet minors from Cal Poly, training as a practitioner with Moshe Feldenkrais, and her continuing study of nutrition, genetics and visceral health. She has a unique ability to help children with special needs and is a huge resource for families and practitioners. Elinor spoke in detail about the gut-brain connection, the importance of methylization, and her nutritional recommendations. I will be posting articles about our conversations soon.
When I found out my son had cerebral palsy I had no idea what it was. I happened to be in the intensive care nursery having a quiet chat with my husband when two doctors walked in. Don’s little incubator was one of their stops. They didn’t know we were attached to him. One said to the other “oh yeah, he’ll have cerebral palsy”. Wow. We went across the street to a restaurant and stared across the table at each other. I remember asking Don’s dad “do you know what cerebral palsy is?” and he said he did not, but he had a friend in grade school who had been in a wheel chair and passed away after a few years.
These were the days before internet so we had no ready resource to go to for information. You can bet we cornered Don’s pediatrician on his next visit and asked him what was going on. But we didn’t get much information. He said “They never should have said that. We have no way of knowing how things will turn out for Don”. That satisfied us in the moment and we eventually took our son home to enjoy his first months.
Babies don’t do much at 1, 2, and 3 months. When awake he was alert and seemed to be doing what my daughter had done. Yes he was a little stiff and we could successfully prop him up in standing…what can I say? We were new to this. I remember being heartbroken that I had to let him cry to sleep the first few weeks, but no matter what I did to comfort him I wasn’t helping. But lots of babies have trouble going to sleep, right? Now I know these are clues to damage in his brain.
At three months our pediatrician was not happy that his hands were still fisted tight with the thumbs inside. No diagnosis, but enough concern to send us to a Kaiser pediatric physical therapist. We learned to prop him up on his stomach. He was also arching back so well that he could roll himself from his tummy to his back. At Don’s 4 months old visit the pediatrician said “Well he’s not rolling over, of course”. “Yes he is” I was proud to say and Don demonstrated. That’s when we ended up referred to the state agency, California Children’s Services for therapy. Ok. Arching is NOT normal.
That poor therapist that did the intake for Don. She tested, wrote up her report, and called me in to let me know the results. When she said he had cerebral palsy she had no idea that I had never been told. Cue tears and LOTS of questions. She excused her self and practically ran out the door to get her supervisor. I remember asking “will he walk” “will he be able to play and have fun?” “will he live very long?”. We were scheduled for occupational and physical therapy to start the next week.
Our first appointment was with two of the most amazing women, Mari Nomura and Christine Wright. These two observed my son and marveled at his intelligence just by seeing what he focused on and what he had accomplished so far. Yay! Finally something positive. Little did I know what good hands Don was in. These two led Don to be the youngest little guy ever to have ankle foot orthotics, a talking board, a walker, and a power wheelchair. He had all these things by 2 years old. Their can-do attitude modeled for me a way of approaching disability that formed our future.
Yes, I was majorly stressed, to the point it eventually ruined my health. It’s difficult to say I would do it any different. I would wish for other parents to be able to slow down and enjoy the moments more. To take more breaks, and come back refreshed. But it feels like war. I was battling the limitations imposed by the disability, the school district, the doctors, and the finances. I was described by someone as a mother bear protecting her young. When you are at war you rally all resources. The problem with this war is that it went on for a very long time. My personal resources were eventually exhausted. Thank goodness not until my children were almost grown.
I am so happy today to see both of my children grown and enjoying the lives they have chosen to live. That is the biggest gift I could give to them both; to try to make sure that they got to choose their paths. They both gained and I did too. I learned so many things along this journey and now have a career spending my time doing something I love.
We were so fortunate to have some wonderful teachers in Don’s early years. He started pre-school at 3 years old in order to learn how to use an AAC device. AAC means alternative augmentative communication device or as we called it, the “talker”. I chose his school because Cheryl Garavalia, the preschool teacher, had obtained a grant to pay for talking machines and training so her students could learn how to use them. Before he even entered school Don was tested and his device had been ordered.
So began our journey into academics. My goal was to have Don be able to stay with his peers. My feeling was that to be part of society he needed to learn about friendships and keep up with his social skills. The best chance to do that was to be right in there with children his age. Physical skills, and even academics could happen other places or at later times, but there was no replacement for the built in school environment for interacting with friends.
I felt so strongly about this that when Don started at his special preschool where he would learn to use the talker and computer (at 3 years old!!!) I also started him at a regular pre-school my daughter had previously attended. Two afternoons a week he went with kids with NO special needs so he could get the best of both worlds.
Once he got into kindergarten the talker and a computer allowed him to complete his schoolwork fairly independently and he could socialize and participate in all the class activities, recesses, field trips, and fun.
I’m going to post a series of articles covering our school experience starting with these three:
How did we talk about Don’s disability?
How did communication happen?
What happened when he could not keep up with the academics? (Remediation vs. compensation)
Part 1 – How did we talk about Don’s disability?
We realized in the regular pre-school that other children had questions that needed addressed. We quickly learned that if we were pro-active and open to educating others it was a much more positive experience than waiting for the dreaded “what’s wrong with him” question. I learned early on that I was willing to push myself way out of my comfort zone if it was going to make a difference for my child. So, even though I was not an extroverted person, I began walking around with a smile, meeting people’s eyes and welcoming contact from complete strangers. Trips through the mall usually included at least 2 or 3 stops to chat with well-meaning adults or curious children. On bad days I would still charge along with my eyes down, moving fast so I wouldn’t see the looks and stares – but if I could open doors for Don by being welcoming then I was going to do it, most of the time. I later learned that this became a model for his sister and for Don to follow as they dealt with these issues independently as they got older. It was worth the effort.
So – smiling, saying hello – it didn’t eliminate the “what’s wrong with him” question but I’d grit my teeth and smile again and say “nothing is wrong at all. Are you wondering why he is in this wheelchair?” Most children’s experience of wheelchairs and medical equipment is limited to medical settings and elderly persons. They often wonder if someday they might be in this situation too. When Don was really small I’d just say “When he was born he got a hurt in his brain so he has trouble telling his muscles what to do. The wheelchair makes it so he can get around like you do with your feet when you walk”. At 2 years old my son had his first power wheelchair so most kids thought that was pretty cool. I even heard quite a few times – “Wow mom – I wish I could have one of those”. My internal dialog responded “Grrrrr. No you don’t”.
Having the manual chair or the power chair really made quite a difference. Adults were clear that something was definitely special. Before we got them Don used a stroller with extra support I made by covering foam with fabric. In his stroller, or when I’d run in the store with him carried against my shoulder, I could feel that they weren’t sure what was different. The fact that he couldn’t lift his head once caused a gentleman to scold him for “making his mom carry him when he was such a big guy”, and often people would say – “oh, is he tired?”. Once we got the two chairs they knew that they were looking at a special situation and instead of feeling the long looks as people tried to figure things out we found that many people would say hello. That’s how I got started being the disability ombudsperson.
What helped was having something positive for well meaning people to comment on. It might be cool sunglasses, stickers, the latest nike shoes, that cute levi jacket, a baseball cap, or an eye popping bright yellow wheelchair. Later when he was old enough it was Don’s service dog Tarella. She was a gorgeous golden retriever/lab cross. People want to make contact in a positive way and if you give them something to relate to it gives them a conversation starter. The dog was such an attraction and source of envy that we had to carry post cards with her picture to give out just to gracefully move on from the crowd that often formed.
When it was time to move into a mainstream kindergarten class we got great advice from the pre-school teacher. We made a video and she or I would go talk to the children about what to expect when Don joined them. We asked Don how he wanted his disability to be described. Out of three or four choices he chose “I have an injury in my brain that makes it hard for my brain to talk to my muscles.” Kids didn’t have too many questions but it definitely helped them t welcome him the next day.
In first grade Don was up in front of the class and we presented together. No video was needed and they had a lot more questions. I got a chuckle out of “how does he sleep”. I could tell that they did not know how to picture him out of the chair. I asked him what he wanted me to say and they got the idea that he could make decisions like that. We talked about how much he liked pizza, what his favorite cartoons were and things that let them see that he was just like them, only he couldn’t move the way they could. One of the things I told them was that he had some different ways of communicating and we demonstrated what his “yes” and “no’ sounded and looked like. I challenged them to ask him some yes/no questions right then so they could see how he could answer. Later, I heard some say “do you want to play with me? yes or no?” It was a very fun way to launch him being part of things.
As Don got older there were fewer children at school to introduce to him so most of our talks about disability became at the store or park. I’d watch for the timing, and if a child looked like they were trying to figure Don out I’d ask them if they wanted to ask about why he was in the wheelchair. Most said yes. I’d give a sentence or two and offer some suggestions for how they could play with him. I was able to help Don be included and overhearing the kids later say “Mom, I played with him and he’s my friend” really made my/our day. It helped that we were always the ones with the really cool sand toys to share.
I noticed as my children grew older that they worked together to continue to assure that Don had a place in any group. Though she hated crowds his sister even accompanied him to high school dances so he wouldn’t have to have an adult hanging around. It has been a lot of effort to extend ourselves so much but very worthwhile.
Don is by nature far more sociable than me, and he feels completely comfortable now at college age going into a group of people he doesn’t know. As a young adult he doesn’t feel much need to explain himself but he is very articulate if he ever has the need to.
Neil Sharp hosted a wonderful Sunday afternoon in San Francisco this weekend and it gave me the chance to meet another mom. Our talks reminded me the impact reading Closer to the Lightby Melvin Morse, M.D. had on me.
I had a good friend who would share books with me. She gave me books on angels, on stress, and eventually this book about near death experiences in children. I was so struck by the repeated evidence of the same phenomena being recorded with such great similarity from many many childrens’ stories.
Growing up I did not have formal religious education. My parents believed in letting their children be free to form their own beliefs. I visited a few different churches as a teenager but was not drawn to any of them. The structure and beliefs seemed far more ambiguous than science, logic and facts. I moved on and my life proceeded until there I was in my 20s with a disabled child and lots of questions about why, but with no real spiritual support. This book was written by an M.D. and simply presented the experiences and the author’s journey to discover what was occurring during NDEs. Have you heard the expressions “out of the mouths of babes”? That’s how I felt as I read.
By the end of the book I realized – all children with Cerebral palsy have had a near death experience. During birth cells had enough oxygen deprivation to die and create permanent change. As a parent of a son with cerebral palsy I was comforted to read Morse’ observations when he revisited some of the children as teens. He found “these children have become special teenagers who have excellent relationships with their families. They share a maturity and wisdom that is humbling”. “These children have grown up to become remarkable teenagers…positive and upbeat kids with a joy that is inspiring.” (pg165-7). I love working with children with cerebral palsy. I find these observations to be true in my son, and in those I work with.
This is a book about Morse searching for answers using the medical model for evaluating situations. He presented so much anecdotal information and was so careful about gathering his data that I could not set this information aside. The next step for me was to realize that I could choose to believe there was something beyond this reality we are living in this moment. I realized that knowing there was never going to be a decisive answer I could choose to believe what gave me comfort. Since that moment of decision the strength of what I call “my faith” has gotten stronger and feels right. It gives me peace to feel that there is a purpose for us being here and reasons why things occur in this life.
I feel I changed as a parent and advocate for Don with this decision. People commented I seemed less stressed – that I was calmer in critical decision making meetings about my son’s services and future. Reading this book created one of my turning points in this journey of raising my children.
I’m posting this here because many children with special needs have greater difficulty in calming themselves and quieting their brain enough to sleep. This article has some good resources for helping children learn to settle their own systems and get to sleep on their own. Annie Tucker Morgan references Richard Ferber, the director of the Center for Pediatric Sleep Disorders at Children’s Hospital in Boston.
One of the benefits of ABM that parents most often report is having their children start to sleep through the night even after just one lesson.