Category Archives: Children

Articles, Brain Gut Connection Series, Children, Nutrition, Support for parents, Updates

Brain Gut Connection Part 5

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.

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Articles, Brain Gut Connection Series, Children, Nutrition, Support for parents, Updates

Brain Gut Connection Part 4

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.

MTHFR 

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

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!”

Toxic Load

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. 

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Children, Equipment, Support for parents, Supporting your child's learning, Updates

When is it Learning and when is it a Crutch?

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?”.

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Articles, Brain Gut Connection Series, Children, Nutrition, Updates

Brain Gut Connection Part 3

This is Part 3 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.  

The Wheat Story – 1978

I don’t think many know this story about gluten.  In 1978 and 1979, Elinor was working in the lab at Cal Poly as she studied towards her degrees.  Representatives from Monsanto came in with a special request.  

Elinor explained that plants have a strong idea of personal space.  When they start to encroach on each other they stop bearing fruit in that direction.  They need a certain amount of spacing in order for each plant to have the highest possible yield.  

So if there is a huge demand for wheat – and you want to increase production on the land – what do you do?  Monsanto asked the scientists to make it possible to grow more wheat on each acre of land.  The researchers were able to do this by altering the genetics of the wheat enough that it no longer had personal space issues.  Plants could intertwine and snuggle up to each other and they would still produce like mad.  

The scientist warned Monsanto that there were side affects of this alteration.  The amount of gluten in each grain was increased 4 fold. (my apologies this was previously reported as to the 4th power.  Corrected 6/15/2013)  This is a HUGE increase in the amount of gluten in each grain.  Monsanto was told that there was no way of knowing what the impact of this change would be on the consumer.  The whole digestive tract evolved over many, many generations, certainly not in just a couple of generations. It would take 1,000 yrs or waaay more than that for change to happen. Human’s would not be able to adapt quickly for this huge change in their food source. Monsanto wasn’t concerned.  Elinor was.  Elinor said “Monsanto went from producing 5,000 loaves of bread per acre to 50,000 loaves of bread per acre! With our help! Uch!”. 

Chromosome changes and Gluten Sensitivity 

Elinor explained that there used to be a small percentage of people with gluten sensitivity.  Now we are seeing the results of this genetic change in wheat.  Gluten sensitivity causes inflammation and that can lead to leaky gut.  The immune system responds, white blood cells are elevated, the whole system begins crashing with white blood cells attacking everything including the self.  Allergies are triggered due to this cascade of events in the overreacting immune system.

In our latest conversation Elinor told me about a baby she has just diagnosed.  The family had fraternal twins, now 7 months old, who were not developing equally.  One twin, a little girl’s development caused her parents enough concern that they contacted Elinor for her special touch.  Could this be the normal variation in development in babies or was it something else?  What Elinor saw within 45 seconds of her arrival was a baby with a gluten sensitivity issue which had impacted her development.  

When Elinor first met her the little girl was held by her parent and her back was rounded.  Could this posture be because of the way the adult was holding her?  Next, the baby turned to look at Elinor, but she did not grow tall and use her back to turn and look.  It was another clue.  Her dad, who is knowledgeable about fitness, said “She does not have great tone, and when she sits she is curved and going to her left.  When she lifts her arms they tremble until she has them lifted.”  At this point Elinor was 85% sure she was seeing a nutritional deficiency.  Elinor did notice that the baby had beautiful skin, a good indicator of a good quality nervous system.

The baby had eaten 15 minutes before Elinor arrived so Elinor should be able to feel digestion happening. With her knowledge of specific organs Elinor can feel movement when she puts her hands on someone’s belly.  She felt the little girl’s viscera and discovered there was zero movement in the stomach.  She moved to the small intestine to see if that was working and felt nothing.  On questioning the parents, Elinor was told this baby only pooped every other day instead of the many diaper changes her sibling had.  Her feet also smelled “yeasty”, an indication to Elinor that the flora in the intestinal tract had already shifted to “bad” bacteria and yeast.  

Elinor explained that lack of motility in the intestinal tract will cause the contents to become stagnant.  Gluten isn’t the only cause of lack of motility but it’s a strong suspect.  Good bacteria need a flowing environment that is constantly receiving fresh nutrients and oxygen.  Bad bacteria grow in stagnant conditions much like we see in standing water vs. flowing water.  When bad bacteria increase, yeast increases, good bacteria die off and enzyme action is impaired.  This is called small intestinal bowel overgrowth (SIBO)  Without movement the intestinal lining is not as permeable and micronutrients cannot pass in or out of the intestine. 

Within 5 minutes of arriving Elinor was 99.9% sure this baby was vitamin B deficient due to gluten sensitivity.  The inability to be upright and the tremor before finding balance are not normal and directly relate to lack of B vitamin.  The mother asked how could this be when the other twin was fine?  

Elinor explained this case is not a genetic DNA issue, she suspected a chromosome cause.  Chromosomes can be altered in utero and after birth from external elements.  The mom could have been exposed to some chemical, used windex for cleaning, or any number of things we consider normal in our households.  For some reason one twin had damage to chromosomes and the other did not.  This breastfeeding mom loved wheat products and they had recently started both babies on cereal made with grain.  Allergies can be inherited, but with no history of allergies it indicates that this baby probably had chromosomal damage which was causing her to be gluten sensitive.  These chromosome changes can happen any time during a person’s life.  A developing baby cannot tolerate the deficiencies that an adult might be able to, but with an adult will eventually exhibit signs of deficiency as well.

DNA is also involved in a non-genetic way, Elinor explained.  Humans are born with an incredible length of DNA to direct their growth, development and function.  In addition to our bodies being regulated by our OWN DNA we have a symbiosis with the bacteria in our intestinal tract that helps to digest food, and THEIR DNA influences our function.  There are at least a few million cells of DNA in the normal gut flora. They might have more influence on our function than our own DNA does.  When the intestinal tract is inflamed these bacteria can’t survive and the influence disappears.  Instead the bad bacteria an yeast are influencing our systems.

Elinor stated that without good bacterial DNA, without the digestive enzymes, with disrupted absorption, a state of deficiency is created.  Essential fatty acids, the B vitamins, the minerals, and other nutrients are essential for processing in all of our body but, most significantly to a child with special needs, processing in the nervous system and brain.  Read more about this in the next article.

Elinor used the Feldenkrais way of touching and quiet listening to work with the baby’s viscera – such a light touch it almost looks like you are not doing anything.  The mother reported that within 1 hour of Elinor’s 15 minutes interaction with the baby she passed lots of stool.  Elinor’s recommendation was that this mom go completely off gluten while nursing, that she use potatoes and non-grains for her starch, and that the baby stop cereal.  She predicts that in 1 week the intestinal tract will turn around and that in 2 to 3 weeks this little girl will begin normal development.  She will have back the gift of her genetic inheritance from her healthy mom and dad and can grow to her full potential by making these changes.

Epigenetics 

A combined way that gluten sensitivity and chromosome changes can get progressively worse from one generation to the next is explained with epigenetics.  Epigenetics refers to heritable traits (over rounds of cell division and sometimes transgenerationally) that do not involve changes to the underlying DNA sequence.  Mechanisms can enable the effects of parents’ experiences to be passed down to subsequent generations.  These changes may remain through cell divisions for the remainder of the cell’s life and may also last for multiple generations.  wiki: http://en.wikipedia.org/wiki/Epigenetics

Many genes are not active and methyl groups silence the genes that are not needed.   Elinor explains that environmental issues such as pesticides can change chromosomes and turn these genes on.  It is believed that these genes activated in a mother can be passed down to the next generation.  If each generation is being impacted by the environmental trigger such as an endocrine disruptor that affects hormones, then more and more chromosome changes may be passed on to each generation.  Without a DNA change there can be worsening of conditions that are hereditable.  

Permanent villi damage from gluten sensitivity

 Ellnor explained that once the intestinal tract has healed and SIBO is replaced by healthy bacteria people with as many as 70 allergies can go back to having the one or two that it is usual to have.  So, first, you need to remove the offending agents, then replace with good flora and start the healing. Now, that’s reliable! says Elinor.  You can also add probiotics to replace the flora and Elinor recommends the 500 mg of L-Glutamine for healing intestinal walls.  Unfortunately, the villi, the finger like projections lining the intestine which absorb nutrients and send them to the blood stream, cannot regrow.  Once they die there is reduced ability to absorb.  Elinor stressed that it is important to respond to signs of gluten sensitivity to avoid the condition worsening.  

 If gluten sensitivity is suspected Elinor suggests taking gluten out of the diet for awhile. Those with gluten sensitivity may be able to tolerate small amounts in time.  People with Celiac’s disease can never have gluten without further villi damage.  Elinor’s son was able to eat small amounts of gluten and test negative for gluten sensitivity in his blood tests in his teens.  College years brought more pizza and other things with gluten and his blood tests came back positive for gluten sensitivity.  He was able to revert to a healthy blood test by controlling his intake again.  Each person’s system can change based on what they are being exposed to.

Both constipation and diarrhea are indicators of an intestinal tract in distress.  Elinor said, an occasional episode might have a simple trigger but chronic constipation indicates a metabolic cause.  The first step is to eliminate gluten from the diet.  500 mg of L-glutamine given daily will help to heal the gut.  Within 3 to 4 days it will stop the diarrhea.  It comes in powder form and can be easily added to food.  That dose can be given to anyone from 50 lbs to adult.  If your child is less than 50 lb experiment with less and increase the amount until diarrhea stops.  When the gut calms the immune system can stop being so active and there will be a huge increase in the absorption of vitamins, minerals and nutrients.

There is a strong connection here for children with special needs.  Immune system activity and intestinal absorption is directly tied to the nervous system and brain.  

Future articles willI be about the prevalence of MTHFR mutation and it’s impact on children with special needs, spasticity in the gut and visceral work,  constipation and seizures, and Elinor’s recommendations for nutrient supplementation.

 

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Articles, Brain Gut Connection Series, Children, Nutrition, Support for parents, Updates

Brain Gut Connection Part 2

 

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 articles

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.

 

 

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Articles, Brain Gut Connection Series, Children, Nutrition, Support for parents, Supporting your child's learning, Updates

The Brain Gut Connection

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!”

A New Era of Medicine has Finally Arrived

Dr. Hyman on nutrition and Autisim

brain-plasticity-practitioner

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.

Can Autism Be Cured?

 

 Elinor Silverstein on metabolism and nutrition

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.

 

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Traveling for work

It’s been such a pleasure to meet so many families and children.  I am endlessly impressed   with the dedication parents have for finding solutions for their children with special needs.  I remember being told that I should just go along with what the teachers and other professionals were telling me was best for my child. I even recall a doctor telling me not to listen to anyone with “new” ideas because they were just preying on parents with special needs children.  The message they were sending, “There is no hope”, was one I was not willing to hear. They wanted me to believe that they had the answers and my son could achieve nothing more than their predictions.  Well, I am so fortunate that I also had people with vision, intelligence, and love giving me concrete ideas to make a difference for my child.  It was my job to keep searching, to follow through, to be his advocate and educate myself about what my son needed in his life.  

The parents who find solutions outside the mainstream are those who are not willing to settle.  They are questioning and searching for new or more effective options.  If no one ever did, there would be no new discoveries and no better solutions.  No wonder it is such a pleasure to meet these proactive, intelligent parents.  I feel quite fortunate to have the opportunity.

This year I travelled to Copenhagen, London, and Saipan multiple times.  When a family has hosted my visit, gathering 2 or 3 more interested parents to share the costs, I am able to show and speak locally about how neuromovement (ABM, Feldenrkais, Relfex) can help special needs children.  Word spreads quickly and I never have spare time to explore the sights.  It’s not a tough choice to make because my memories of the kids learning and growing and the parents so open to learning is so satisfying.   There are requests for longer visits, and waiting lists getting longer and longer.  Maybe some day I’ll be able to add some extra days to relax and enjoy – but you know what?  There is a good chance they will get filled with giving more lessons.

I’ve  worked in these locations with about 25 children.  4 charming kids with Autism or Autism Spectrum, 6 children with Cerebral Palsy, 2 with hemiplegia from stroke or other causes, and many other conditions.  Along the way I’ve added on lessons for a professional bowler, an elite tennis player, an adult relative with stroke, 2 pregnant mom’s, and 2 infant siblings who received well baby lessons.  So much interest has developed in Denmark with families with special needs children that there is now a Scandinavian Neuro Movement Center organized to make more opportunities available to the families in Denmark, Norway, and Sweden.  I’m thrilled to be a part of what is developing.

My experiences in life have brought me to this point.  I am able to do what I do because I raised a brilliant young man with cerebral palsy, because of my time in the medical nursing field, because of my Feldenkrais practitioner training with Anat Baniel, the 2 year advanced baby seminar that we begged her to teach, and all the years supporting the growth of the Anat Baniel Method.  I took classes with Dr. Masgutova, and I constantly learn from my colleagues like Marcy Lindheimer, Suzi Marks, and Syvlia Shordike.  

I look forward to more travels to new locations meeting families and children and being able to make a difference in their lives.  I am a very fortunate person to be able do what I love to be doing.  

 

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Is swimming good exercise for children with special needs?

As a neuromovement specialist I know that the first thing we encounter at birth is gravity. We, as humans, then go through a long apprenticeship learning to manage gravity. Most people keep improving their skills up to about 5 years old. Sadly, many stop there. Enrolling in sports is one way to continue that process. One of the things people gain when they work with me is an improved sense of how to use gravity. Some people are more challenged with this than others. Adults with stroke, back injuries, etc. may have to “relearn” what they discovered as children.  With children with special needs it is one of the primary things they learn that will really change their lives.  I encourage my clients to create a rich environment to continue learning outside of lessons with me with a focus on managing gravity. There’s lots of things you can do that enhance the apprenticeship in gravity for small babies, toddlers, children, athletes, those with injuries, and seniors.

People ask me is “Is swimming a good activity to support the learning?” My response: It can contribute to improved head control, it gives a person freedom to move, (and moving is just plain good for you), but the feeling of weight is altered and there is no feedback about movement in gravity in the water.  Think of how it feels when you step off a trampoline.  Your sense of gravity is distorted.  Or when you try to maneuver on an air bed or water bed.  That difficulty you feel is because you are used to using gravity against a firm surface.  It gives you information about how to lean and push to stay upright.  That feeling of being grounded and having something to push against is what we are trying to build in neuromovement lessons.  So if it is important for you or your child to gain more skill with managing gravity they should be spending most of their time getting experience IN gravity.

I still say – GO SWIM! – just know it is for fun NOT to learn to move in space. The biggest gain I think, is that everyone can do it. The whole family can swim together with the right devices to help the person with special needs.

My son loved the water from an early age. I think it was that weightless feeling and the freedom to move. He also loved the chaos and crowd feeling being in the middle of all the splashing, yelling, and jumping. Water is kind of an equalizer. With just a little help to make sure he stayed afloat he could join in the fun. We started with a typical baby float with the ring and sling seat. I used inflated water wings tucked around him to make sure he wouldn’t tilt out of position. We had a brief period using an adapted head float. That was great for giving him full body freedom to move. Once the baby seat and head float became to small we went to a child’s inflatable ring around his chest. It seemed a little unstable so we added the inflatable water wings on his arms to give him ballast to the sides. I was starting to stress about finding a ring in the next size when Don’s dad suggested he just try the water wings alone. Don would need to manage how low he was in the water by the height he held his arms with the wings. That was a big chunk of learning for him.   I didn’t think it was going to work, but they both proved me wrong.

Don learned to keep his arms down and was good at managing the splashing against his face. One of the things I have learned is that when Don really wants to do something he makes it happen. As an adult he loves to swim. Getting in the pool is easy – he just jumps from a seated position on the side and his water wings (adult size now) pop him right back up to the surface.  Getting out of the pool is a bigger challenge these days. He’s taller than me! I’ll write more about what we’ve tried to solve the exit problem in
another article. It’s an ongoing challenge.

You can find water wings, infant seats and swim rings at most grocery stores, drugs stores or places like Target.  For adapted swim equipment try:

Abledata

Especialneeds.com

 

 
 
 I recently ran across this article about swim equipment.  I hadn’t realized that public pools might not allow basic water wings.  It’s something to think about if you plan to use public pools.  Flotation equipment specifically for special needs might get you past that hurdle.  I would call ahead to the public pool to get authorized by an administrator rather than depending on the highschool life guard to break rules they have been given.  Note the link embedded there about a child asked to not use water wings in a public pool:  
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Sleepless?

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.

See website here:
http://www.divinecaroline.com/22108/86906-rock-a-bye-baby–sleep-training-work- 

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