Wednesday, October 26, 2011

Sharing Inspiration to Support the Yamini Foundation

Joining with Grammarly to Touch Lives Around the Globe

In honor of Down Syndrome Awareness Month, Grammarly, the premier grammar checker on the web, has partnered with to support the Yamini Foundation in India. I am joining their efforts by sharing my inspiration....
When we found out that our sweet two-week-old baby, Jett Lukas, definitely had T21, I was devastated. Between struggles with breastfeeding/weight gain and then the "doomsday" diagnosis, I cried through his first three weeks. From everything that I was reading, it was advised to let go of all the dreams that I didn't even realize that I had for my son.  But I just couldn't! I couldn't imagine giving up on his future before it even started.

When he was three months old, I meet an inspiring, helpful mom, Camille Gardiner (of Down Syndrome Foundation of Florida) and through her, discovered ways to help him: neurodevelopment, Targeted Nutrition Intervention and biomedical intervention through the Changing Minds Foundation, as well as an introduction to a great group of experienced parents/sister on the Einstein-Syndrome list.

I am thrilled with the results from all their advice and research. At 5 months, Jett first rolled over and was on target as far as milestones. He drank from a straw at almost 6 months, the day before his heart surgery. Because of surgery, his physical progress took a major set back. So, with a lot of neurodevelopmental therapy, he was army crawling by 10 months, creeping and pulling himself to stand at 13 months and beginning to cruise at 14 months.

Cognitively, he's been going strong. He randomly said clear words and phrases off and on starting with "Daddy" at 6 months. (And said "okay", "alright", "go' boy", "oh boy", and "hey" all the time.) At 8 months, he spoke his first word of intention: "water." At 10 months, he used, "ilk" (for milk) regularly.

At the second evaluation after heart surgery with Jett's neurodevelopmentalist, Kay Ness of SENC, said he had gained 12 months of improvement in the 3 months since his last evaluation. 

He consistently uses his potty for "number two" since at least 10 months old and has been letting us know when he needs to go since he was at least 6 months old. 

At 11 months, he had his first speech evaluation with Renee Roy-Hill M.S., CCC-SLP of Talk Tools. She was amazed! She said that she had to evaluate him using the typical scale, not the one for children with DS. She said he was on par and above the typical child. He has no tongue protrusion, great lip closure, strong jaw muscles, etc. She said it was the easiest evaluation she'd ever done and had the least amount of suggestions. Two evaluations later, (another with Renee Hill and one with a local speech therapist) his speech is still on target. Just yesterday, he said: up, dirt, stuck (stup), daddy (he rarely says Mommy), kiss, shoulder (dol-der), I love you (Iwuv oo)... I'm sure there was more, but that's all I can remember.

Here you can see Jett Pretending to Read at 16 Months. At 17 months, he started sight reading! The words he first could recognize were: craaaaack, gulp, hug, and whoosh. (I guess it does reveal a little about his fun personality since all but one word is an onomatopoeia. He didn't always say the word, but loved to hear you read it out loud. Oh, and when he pointed to "hug," he expected you to hug him!) Here's a video of him sight reading at 18 months:

At 19 months old, he is learning to read lots of new words every day. He's basically obsessed with words and reading. He points to a word wherever he sees it and says, "What's this? or "What's that say?" (Wassatsay) His favorite book (today) is The Baby Goes Beep by Rebecca O'Connell, pictures by Ken Wilson-Max.

Here is a video of him at 19 months old reading 9 words in a minute and 40 seconds:  

Note: He looks at me when my husband writes, "hair" because I have very long hair.

Now he's interested in writing, so I have to hurry and learn how to teach him! (I guess I'll be cutting out sandpaper letters during his nap times.)

Jett is alert and curious. He can bounce to music, play ball with you, open drawers and take out the contents, can follow simple, one-step directions (touch all his major body parts, wiggle fingers, clap hands, sit up, get ball, come here, let go, give kiss, etc.).

I can see him playing with more creativity and independence every day. It's a joy to witness his daily progress. I am grateful for Kay Ness, Teresa Cody and the amazing parents and family members who have helped along the way

I so appreciate what Camille did for me and my family that I have been inspired to follow her example by sharing what works for us with you. That's why, seven months ago, I started this blog. 

Our kids are full of potential! I wish you equal success with your loved one. 

Grammarly will donate $25 to the Yamini Foundation on my behalf. You too can make a difference. Visit to learn how you can help. 

Related Posts

Parent's Resources for Guidance on Down Syndrome
15 Things A New Parent Should Know
Changing Minds Foundation Protocol
Jett's Complete Supplement List
Get Your Own Neurodevelopmentalist
First Foods: How & What & When to Introduce
Low Muscle Tone: What to Do
Tummy Time
How to Bottle Feed & Nontoxic Bottles
Toxin Free Babies
Teaching Your Baby to Crawl
Crawling: More Important than Sitting or Standing!
Toys that Support Crawling
Toys that Encourage Fine Motor Skills
It's Potty Time!
Teaching Your Baby to Read
Review of BrillKids Little Reader
Handwriting Resources
Getting Your Baby to Communicate
Books to Read to Your Baby
Early Steps for Better Speech
Protecting Your Child's Hearing
Sleep Study: The Results
Jett's Sleep Study: Mommy's Nightmare
The Heart & Down Syndrome
Preparing for Heart Surgery/Hospital Stay
Requests for Stories of Triumph

Tuesday, October 25, 2011

How to Teach Your Child to Write

Jett loves writing on the magna doodle and he's been stealing our pens and pencils as well. Since I'm following his cues, I guess I need to get prepared to give him "safe" opportunities to write!

Jett Magnadoodling
How is writing more challenging for those with Down syndrome? And what can you do?

Early on, I attended a seminar where they explained that, for those with DS, it was as if they had oven mitts for hands. 
Okay... but then they didn't tell you how to fix it! It's great to empathize, but please, let that be the beginning of the conversation, not the end of it! 
To fix this disadvantage, you must help your child to be able to FEEL his fingers and hands. When he can feel them, he can better use them!  Kay Ness' Tactile Sequence will do the trick.

Important play activities for developing handwriting skills are explained in this great blog post.

Why teach handwriting in the computer age?

How Handwriting Trains the Brain Forming Letters Is Key to Learning, Memory, Ideas  by Gwendolyn Bounds 

...Wendy Bounds discusses the fading art of handwriting, pointing out that new research shows it can benefit children's motor skills and their ability to compose ideas and achieve goals throughout life.
She's right. Using advanced tools such as magnetic resonance imaging, researchers are finding that writing by hand is more than just a way to communicate. The practice helps with learning letters and shapes, can improve idea composition and expression, and may aid fine motor-skill development.
...Studies suggest there's real value in learning and maintaining this ancient skill, even as we increasingly communicate electronically via keyboards big and small. Indeed, technology often gets blamed for handwriting's demise. But in an interesting twist, new software for touch-screen devices, such as the iPad, is starting to reinvigorate the practice.
...Recent research illustrates how writing by hand engages the brain in learning. During one study at Indiana University published this year, researchers invited children to man a "spaceship," actually an MRI machine using a specialized scan called "functional" MRI that spots neural activity in the brain. The kids were shown letters before and after receiving different letter-learning instruction. In children who had practiced printing by hand, the neural activity was far more enhanced and "adult-like" than in those who had simply looked at letters.
Even legible handwriting that's messy can have its own ramifications, says Steve Graham, professor of education at Vanderbilt University. He cites several studies indicating that good handwriting can take a generic classroom test score from the 50th percentile to the 84th percentile, while bad penmanship could tank it to the 16th. "There is a reader effect that is insidious," Dr. Graham says. "People judge the quality of your ideas based on your handwriting." 
...In children who had practiced writing by hand, the scans showed heightened brain activity in a key area, circled on the image at right, indicating learning took place.

How I teach Jett handwriting skills

1) Set him up for success! It's easier and more colorful to make marks with a marker rather than a crayon or a pencil. It's also hard to hold the paper steady while trying to make marks. So, I use blue painter's tape to secure the paper and easy clean markers so he can freely give it a go! (See Tools below.)

2) Acknowledge and praise the marks he can make, in whatever way he makes them. Many of our children will not be holding the marker in the "correct" way for some time. They need to go through a series of stages to get to the "tripod" stage where he'd be holding the pencil as you would. First, is fisted with elbow down, then is fisted with the the hand turned upside down and elbow up and then he'll be moving into the four-finger and thumb grasp and then to the tripod position. Each stage should be celebrated and none should be pushed upon him.
Of course, Jett wanted to write perfect letters and words right away, but his short little fingers wouldn't cooperate. So my strategy was to distract him from feeling the need to write letters right away and to give positive feedback and a sense of accomplishment from making ANY marks that he can. Any mark that he made, I gave a name to so that it he got positive feedback and recognition. "Oh, I see: dots, dashes, lines and scribbles." That way each has a name and he can be proud that he can make those marks. 
3) To help him get through those various finger grip stages faster, please look into crawling, wheel barrow exercises, the neurodevelopmental grasp and hanging exercises, using monkey bars and getting the reflexes integrated through MNRI. (See my Therapy page for links.)

4) Move to more controlled dots, lines and circles with fun worksheets to encourage practice.
Jett drawing circles.
We say, "Dot! Dot! Dot!" like we are so happy to do them. Then we've moved to more controlled dots, like "Ohhh, two dots up and two dots down!"  and then lines from the top of the page to the bottom: "Line up, then down!" and then "Line, across, across!" Then we moved to "circles" which was basically anything round, which slowly became more distinguishable as a circle. To further reward him and have him feel pride for being able to do "just" lines, dots and circles, I found some free worksheets for him to do that give him a reason to practice and eventually perfect his lines and circles. See "Free Worksheets" below.
5) Continue to practice making more difficult, controlled writing tasks with worksheets that increase with difficulty.

6) A fun way he practices writing the letters in the air is when he watches the short, fun videos on youtube by Walphabet. You can find them on my youtube channel andiandi222 in the playlist called "Jett 32 months." He also practices and plays by writing letters in the sand and with chalk on the sidewalk.  

7) If you are seeing frustration or just want more ways to improve handwriting without a writing implement, you can always do pre-writing/fine motor-strengthening exercises to give plenty of opportunities to hone the finger skills such as: bubble wrap popping, paper tearing, paper crumbling. 

8) Once he was able to master those worksheets, we moved to a DVD I found at the library called  Steps 4 Kids to Write Their ABCs.

It takes each letter and puts them into groups of similar writing movements and walks you through each type of letter and how to do it on lined paper. Jett really enjoys the video (although it's not the least bit exciting, unless you love letters and writing like Jett does). We do one set of letters a day, about four, on one sheet of lined paper. I don't do more than that so that it's fresh for him everyday. 
a. We watch the video segment of one letter.
b. He watches me do it on the paper in front of him. 
c. We do hand over hand practice.
d. Then he does it on his own. 
Once we go through all the letters, first upper case, then lower case, then we'll go through them again until he has mastered them.


For the worksheets, I bought a Crayola Dry Erase Activity Center  which was $14.99 at Michaels, but I got it 50% off. The board works so that you can print any paper and slip it into the board then your child can use the dry erase markers all over it while still protecting the paper so you can reuse it or give it away when he's done with it. Jett used these sheets several times because it took him a while to be able to make a controlled, perfect line. Initially, Jett scribbled all over the page trying to control the pen and then progressively got better.

The marker the comes with the center washes off hands and tables with water. For clothes, it's best to put on something you don't care about. Now, we buy the washable dry erase markers. They aren't as bright as the others but they work well and I feel better about him using them.

Free Worksheets

These are the free worksheets that I printed out for him to practice lines, circles and x's. Be sure to only print the first page since the second page is often the unnecessary answer key. 

A cheaper alternative may be already printed activity books like the Sesame Street "Let's Learn the Alphabet & More" that you can get for $2.00 at Big Lots. They have four others to choose from and you can just rip out the pages and insert into the dry erase activity center.

These worksheets are listed from easiest to hardest. Do just enough worksheets everyday so that he wants to do more and protests when you take them away. You don't want to bore your child. I don't let Jett do more than 3 a day.

Drawing Lines
Tracing Slanted Lines - Sleds downhill

Slanted Lines Worksheet - Wagons uphill

Tracing Straight Lines Worksheet Set 1 - Three worksheets include tracing straight lines from left to right, right to left, top to bottom, bottom to top, and slanted directional lines.

Farm Animal Match - match the farm animals to their shadows

Dinosaur Shadow Match - draw a line to match each dinosaur with its shadow

Marine Life -draw a line to match each marine animal with its shadow
Match the Bears - fine motor skills, visual discrimination

Match the Leaves - draw a line between the leaves that match

Match the Frogs - draw a line between the matching frogs

Christmas Matching Worksheet- draw line between the word and the picture.

Printable Christmas Picture Matching- draw a line between the matching pictures.

Christmas Worksheet - Same

Opposites - draw a line between the two pictures that are opposites. Pairs of words include hot-cold, young-old, inside-outside, and happy-sad
Things That Go Together - draw a line between the things that go together, 2 worksheets

Missing Shoes - match people to their shoes

All Kinds of Weather -match the children to the weather

What Goes Together - draw a line between the pictures that are related

What Do Animals Eat? - draw a line between the animals and what they eat

Day and Night - draw a line from the day or night to a day or night activity

Drawing Wavy Lines
Wavy Lines - practice drawing between wavy lines, pencil control 
Dragon Maze -help the dragon get to the castle, pencil control, visual discrimination 
Hummingbird Maze - help the hummingbird get to the flowers, visual discrimination, pencil control  

Drawing Circles 
Happy and Sad - feelings worksheet

Small Worksheet 2 - circle the smallest of three items in each row

The Smallest Object - letter Z, zebra. zipper, zucchini (You'll find this worksheet for every letter of the alphabet at, just search for "smallest object.")

Dinosaur Same or Different - identify the dinosaur in each row that is different

Funny Fish Same or Different - identify the different fish in each row

Four Same Size worksheets - fruits, vegetables, toys, sea life (Instead of coloring them, you can have your child circle the answers.)

The Same Size at the Beach - identify and color items that are the same size (Instead of coloring them, you can have your child circle the answers.)

What Does Not Belong #3 - circle the picture that does not belong in the group

Counting Crustaceans - Counting to 5.

My Turtle Number Book -identify numbers 1 to 10 by circling

Count and Circle worksheet 1 - Read the numeral at the beginning of each row and circle that many items (up to 5).

Summer Counting - circle correct number of items

4th of July Counting- circle correct number of items

Farm Theme Counting- circle correct number of items

Africa Animals- circle correct number of items

Easter Counting- circle correct number of items

Themed Counting Worksheets

How Many Apples - numbers 3, 4, 5, and 6

Dinosaur Tally - circle correct number of items, make "tally marks"

Numbers 6 - 10 - 5 page packet

Numbers 1 - 5 - 5 page packet
Drawing an X

Different Weather - draw an X on the picture that does not belong in each group  
Same of Different #4 - identify the item that is different in each row 
Tallest and Shortest identify the tallest and shortest items
 What Does Not Belong #2 - put an X on the picture that does not belong with each group

Tracing Pictures

Giraffe Tracing - complete the picture, pencil control, visual discrimination
Tracing Practice Worksheet Set 2 - Encourage pencil control and color recognition when tracing a snail and a butterfly. 
Bear Tracing Activity - complete the picture, pencil control, tracing
Trace and Color - trace shapes and color recognition 
Kitten and Bubbles - trace the bubbles and color the kitten
Clown Tracing Circles - tracing and coloring, pencil control
Half a Bear - complete the picture
Finish the Picture - complete the picture, pencil control
Finish the Picture - trace the dotted lines to complete the flower picture

Dot to Dot
Clown Dot-to-Dot - connect the dots from a-z and 1-10 to complete the picture of a clown 
Dot-to-Dot - 2 pages, one alphabet and one letter dot-to-dot puzzle 
Dot-toDot PuppyPail Dot-To-Dot -connect the dots from 1-10, print the word pail

Writing the Alphabet and Numbers 

There are numerous, easy to find items to support this practice. One dry erase book we like is Wipe Clean Letters and Wipe Clean Numbers .

Here's a collection of websites, blog posts and products to support writing efforts:

Handwriting Blog Posts
Make your own sand writing tray:

Using the Handwriting Without Tears wooden letter parts that kids put together like a puzzle to make complete capital letters as well as the Stamp and See Screen:

Handwriting without tears' Mat Man. Song and pieces help teach parts of letter structure:

Handwriting Curriculum Reviews

Reviews of Handwriting Programs by Cathy Duffy


Steps 4 Kids to Write Their ABCs


Complete Montessori At Home is downloadable book for less than $9 that has lots of inexpensive ideas to teach your child at home:


For years Montessori teachers have used The Red Letter Alphabet Book as a complement to the Sandpaper Letters, integrating touch, sight, and sound to help children in the first stages of reading. This book uses greeting card felt (flocking) to make velvety, touch-sensitive letters, which invite children to touch and trace the shapes of the letters.

You can get lowercase wooden letters from

Homemade Items

Sandpaper Letters

Perhaps your local library or school has an elison machine that you can use to punch out the letters and shapes in the sandpaper. 

Fine Motor and Pre-writing Activities by a Montessori mom of a child with DS.


The official Handwriting Without Tears website: An easy-to-teach, easy-to-learn curriculum makes handwriting mastery joyful for students and their teachers.

Free Handwriting Worksheets

These are cool  because you can create your own worksheets. The writing space is too small for Jett at 2 1/2, but will be great when he's older.

Related Posts

Teaching Your Baby to Read

Jett Pretending to Read at 16 Months
Teaching Your Young Child to Read High Interest Books
Books to Read to Your Baby
Review of BrillKids Little Reader
BrillKids is offering discounts for Special Needs
Readeez: Songs Supporting Reading Free Download
Reviews of Educational Media
Video of Jett reading at 19 months.
Alphabet Tactile Quilt
Teach Your Baby Math

Monday, October 24, 2011

Alphabet Tactile Quilt

Here's the full quilt.
Yesterday, Jett got quite a treat! His grandmother gave him an alphabet tactile quilt that she designed and had been making for him for three years.

We spread it out on the floor and Jett went crazy with delight as he explored all the colorful ABC squares. The letters are made of rickrack so they are raised and he can feel them. The net has a little net to play with, the yoyo has a string and the egg is puffy to the touch.

My mother said that it was great to work on when she had a lot of nervous energy to expel while dealing with Jett's diagnosis.

Jett, of course, loves it! So I thought I'd share it with you along with the instructions on how to make it. My mother said she learned a lot in the process.

"Grammy's" instructions on how to make the quilt will be added soon.

At 19 months old, Jett is interested in writing so having letters that are raised will help him get a better idea of how letters are formed.

Our next project will be a tactile ABC book.

Related Posts

Teaching the Alphabet
Teaching Your Baby to Read
Jett Pretending to Read at 16 Months
Teaching Your Young Child to Read High Interest Books
Books to Read to Your Baby
Review of BrillKids Little Reader
BrillKids is offering discounts for Special Needs
Readeez: Songs Supporting Reading Free Download
Reviews of Educational Media
Video of Jett reading at 19 months.
Handwriting Resources
Teach Your Baby Math

Sunday, October 23, 2011


Oxidative stress impairs the body's ability to readily detoxify offending substances such as free radicals or to easily repair the resulting damage. It is oxidative stress that is linked to atherosclerosis, cell aging and neurologic disorders in Down syndrome.

On the other hand, glutathione is an powerful antioxidant. It helps remove free radicals and deal with oxidative stress. Studies show that levels of all forms of glutathione is low in children with Down syndrome. (And would make sense that it's low in adults as well.) This is caused by the overexpression of the SOD-1 gene.

Studies show that supplementing with B12 and folic acid can help, but you may want to look into a more direct source of glutathione.

Qadoshyah Fish has more information on glutathione and studies related to DS at her blog post:

Glutathione - Your Brain's Master Antioxidant Defense


Copyright 2004 Priya Shah


This article was first published in the May 2004 issue of The Glutathione Report, a newsletter featuring regular updates on the health benefits of glutathione.

Free radicals and oxyradicals play an important role in the development and progression of many brain disorders such as brain injury, neurodegenerative disease, schizophrenia and Down syndrome.

Glutathione is the brain's master antioxidant and plays an important protective role in the brain.

According to Dr. Jimmy Gutman, "The brain is particularly susceptible to free radical attack because it generates more oxidative by-products per gram of tissue than any other organ."

Many neurological and psychiatric disease processes are characterized by... abnormalities in glutathione metabolism and antioxidant defenses."

Generation of reactive oxygen species (free radicals) and oxidative damage are an important cause of neuron (brain cell) death from brain injury.

Chemicals that cause toxicity to certain brain cells are known to decrease cerebral glutathione (GSH), making the cells more vulnerable to reactive oxygen species (ROS). (1)

On the other hand, over-expression of the glutathione peroxidase (GPX) enzyme potently decreases cell death from brain injury. (2)

Brain Injury and Glutathione - The Gender Difference

Researchers at Children's Hospital of Pittsburgh have found that males and females respond differently to brain injury. (3)

In animal models, levels of glutathione remain constant in females who have suffered a brain injury, but drop by as much as 80 percent in males with the same injury.

When glutathione levels drop, brain cells die much more quickly. This suggests that boys with brain injuries may require different life-saving treatments than girls.

N-acetyl-cysteine (NAC), a precursor of glutathione, already approved for use by the U.S. Food and Drug Administration to treat people who have overdosed on acetaminophen, may be an effective treatment for brain injury in boys whose brains are deprived of oxygen.

Brain Disorders and Glutathione - A Genetic Cause?

Genetics researchers have found that the glutathione S-transferase gene controls the onset of Alzheimer's, Parkinson's disease and determines, not if we get these diseases, but when. (4)

The glutathione S-transferase gene has previously been linked to the risk for Parkinson's disease among people who used pesticides.

Alzheimer's Disease and Glutathione

Free radicals and oxidative damage in neurons is known to be a primary cause of degenerative diseases like Alzheimer's disease.

Amyloid- peptide (A) accumulation in senile plaques, a pathological hallmark of Alzheimer's disease (AD), has been implicated in neuronal degeneration.

Amyloid plaques encroaching on the brain increase the production of free radicals, or oxidative stress. Antioxidants, such as vitamin C and E "mop up" the damaging free radicals.

Glutathione (GSH) precursors can prevent death of brain cells induced by amyloid plaques in Alzhiemer's disease, while substances that deplete GSH increase cell death. (5)

Evidence has been piling up over the link between the amount of an amino acid called homocysteine in the blood and the chance of developing Alzheimer's.

For people not genetically predisposed to developing Alzheimer's, cholesterol and homocysteine, largely caused by an unhealthy lifestyle, are the core causal factors.

Welsh GP, Andrew McCaddon, showed that the more homocysteine that patients with Alzheimer's had, the worse their mental performance, and the worse their "cognitive impairment," the less they had of the antioxidant glutathione. (6)

Glutathione and Mood Disorders

Studies have found that the mood stabilizing drug, valproate, used to treat epilepsy and bi-polar disorder, regulates expression of the genes that make glutathione-S-transferase (GST).

In addition, chronic treatment with lithium, another commonly prescribed mood stabilizer used in treating manic-depression, also increased levels of GST.

These findings led researchers to conclude that glutathione S-transferase may be a novel target for mood stabilizing drugs. (7)

Alcohol Consumption and Glutathione

Alcohol abuse is known to impair memory and other brain functions and increase brain cell death. A new study in rats has shown that alchol consumption causes fewer new brain cells to form and results in greater cell death. (8)

But rats that were fed alcohol along with Ebselen - a glutathione peroxidase mimic that acts as a free radical scavenger - showed no similar reduction in brain-cell formation and no increase in cell death.

Substances that Boost Glutathione Levels and Protect Brain Cells

Taking glutathione itself as a supplement does not boost cellular glutathione levels, since it breaks down in the digestive tract before it reaches the cells. (Unless you take the reduced l-glutathione form, sublingually, or under the tongue. Good brands include Douglas Laboratory [the kind without NAC] or Klaire Lab. Liquid is supposed to be bioavailable as well, such as . The dosage is 75 mg/day for a child. -Andi)

However, intravenous glutathione therapy and glutathione precursors or dietary supplements are effective in boosting intracellular levels of glutathione.

Intravenous Glutathione Injections: Intravenous glutathione injections have been shown to produce amazing and rapid results, in patients with Parkinson's disease. Following even a single dosage of intravenous glutathione, many of the symptoms of Parkinson's disease rapidly improve, often in as little as 15 minutes.

Glutathione Precursors: In the Alzheimer's study conducted by Welsh GP, Andrew McCaddon, adding the glutathione precursor, N-acetyl-cysteine (NAC) to a protocol that lowered homocysteine levels by simple supplementation with B12 and folate, resulted in prompt, striking, and sustained clinical improvement in nearly all the patients. (9)  (N-acetyl-cysteine may cause leaky gut syndrome after extended use and has been seen to increase oxidative stress in those with DS, so weigh your options carefully.-Andi)

Excerpt from Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities:  Consensus Position Paper by Autism Research Institute
  ...a study by James et al.7 found that 800 mcg of folinic acid and 1000 mg of TMG
partially raised levels of glutathione in children with autism, and the addition of
subcutaneous injections of methyl-B12 (75 mcg/kg, 2x/week) normalized glutathione
levels.  Note that the dosage of methyl-B12 was suggested by Dr. J. Neubrander, based
on injecting it into the adipose tissue of the buttocks. (Note that Dr. Neubrander now
recommends a dosage of 64.5 mcg/kg every three days)8  The addition of vitamin B6 (a
necessary co-factor) is likely to raise levels further.  The addition of methionine may be
helpful, but it should be done with extreme caution after methyl-B12 has been given to
prevent negative reactions.8  
Vitamin C:  a study by C. Johnston9 of college students found that the addition of 500
mg/day of vitamin C raised glutathione levels 50%.  Raising the vitamin C to 1000 mg
had no additional benefit.

Cucurmin (turmeric): Studies have shown that the Indian curry spice, cucurmin, has neuroprotective effects because of its ability to induce the enzyme, hemeoxygenase-1 (HO-1), which protects neurons exposed to oxidant stress. Treatment of brain cells called astrocytes, with curcumin, increases expression of HO-1 protein as well as glutathione S-transferase. (10) (The most bioavailable brand is Longvida Curcumin.)

Ebselen: Ebselen is a glutathione peroxidase mimic and potent synthetic antioxidant that acts as a neuroprotective agent and an inhibitor of free-radical induced apoptosis (cell death). It can protect brain cells from the neuro-toxic effects of alcohol consumption. (8)

Undenatured Whey Protein: Undenatured whey protein provides glutathione precursors, has been shown to raise intracellular glutathione levels in clinical trials, and has anecdotally been reported to improve the symptoms of Parkinson's disease.


1. Journal of Neurochemistry, Vol. 88, No. 3, 2004 513-531

2. Journal of Neurochemistry, Vol. 87, No. 6, 2003 1527-1534

3. Researchers Find Brain Cells Die Differently in Males and Females; Pediatric Academic Societies Press release; 21-Apr-2004

4. Human Molecular Genetics, 2003, Vol. 12, No. 24 3259-3267

5. The Journal of Cell Biology, Volume 164, Number 1, 123-131; 5 January 2004

6. Biol Psychiatry. 2003 Feb;53(3):254-60

7. Journal of Neurochemistry, Vol. 88, No. 6, 2004 1477-1484

8. Proc Natl Acad Sci U S A. 2003 Jun 24;100(13):7919-24. Epub 2003 Jun 05.

9. Am J Geriatr Psychiatry. 2003 Mar-Apr;11(2):246-9

10. Can Curry Protect Against Alzheimer's?; American Physiological Society (APS) Press Release;

Glutathione in Brown Rice

Whole article here:

Rice bran (tocotrienols) has glutathione peroxidase. It is also available in brown rice / whole grain rice, but not in white.

“Brown rice is high in dietary fiber, vitamins, minerals, essential oils and protective antioxidants. Rice bran lowers high blood sugar and has been found to be one of the most nutrient dense substances ever studied. It contains over 70 antioxidants, protects against cellular damage, and preserves youthfulness.

Rare forms of vitamin E that lower excess of fat and cholesterol have also been discovered in rice bran. It is also calming to the nervous system due to an abundance of B vitamins and trace minerals.

Gamma-oryzanol is a rare and powerful antioxidant found only in rice bran. It strengthens muscles and converts fat into lean body mass. The antioxidant Alpha Lipoic Acid in brown rice promotes liver restoration, slows the aging process and converts glucose to energy.

Glutathione peroxidase (GPx) is an enzyme antioxidant in rice that reduces mucous excesses, boosts respiratory function and helps detoxify the body. The CoQ10 it contains burns fat into energy helping you lose weight and protecting your heart. Unrefined rice also contains proanthocyanidins that are additionally protective against poisons and toxins in the blood, lymph and organ systems.

Related Posts

Thursday, October 20, 2011


In Lydia's Success Story, her mom, Jane, mentions using a high quality brand of glyconutrients as very beneficial for her daughter. Kristin Morrison of Naturally Better Kids also saw great results in her son, Gryffin when using glyconutrients. I've heard these same claims from several other mothers of children with DS. Meanwhile, there is no scientific evidence to back these claims.

If I had more money, I would buy all these components and make the jam for Jett. Right now, I give him goji berry juice every morning (mixed with his 7 supplements that need to be taken on an empty stomach and preferable with juice), a little dulse (seaweed) mixed in all of his savory food, cooked mushrooms on occasion and a little Tupelo honey mixed with his more bitter supplements in the morning. (Honey is not recommended for babies under a year. Also watch out for yeast overgrowth & stop the honey if it's causing a problem.) I also reconstitute goji berries and give him 1/4 of a cup every two-three days. Next, I'll be getting an aloe plant since it has several of the beneficial ingredients in it.

Here is product information, a recipe to make your own mixture and info about getting these same nutrients from food sources, including goji berries. 

An enthusiatic explanation of what glyconutrients are (according to

"Glyco" is a Greek word that means sweet. So a glyconutrient is a "sweet nutrient" or a sugar nutrient.

Of the 200 monosaccharides that are found naturally in plants there are at least eight essential monosaccharides (or simple sugars) that are not digested and burned as fuel - like how we think of most sugars. Instead this group of eight glyconutrients are structural building blocks incorporated as whole molecules directly into the cells within your body and are involved in a remarkable array of biological functions. These are functions that control everything from individual cell structure and function to cell-to-cell communication and protection for every single cell in the body.

In 1996 the 24th edition of a medical textbook called Harpers Biochemistry first introduced us to this group of eight glyconutrients that are involved in the communication and inter-cellular function of virtually all cells of the body. What does this mean exactly?
    * Tissues
    * Glands
    * Organs
    * The blood and
    * The immune system

everything in the body depends to some level on these molecules. And it has been discovered that when they are missing it prohibits our immune systems from functioning at full capacity.

Therefore science has established that glyconutritionals are not a diet option but rather a requirement for everyone just like water and vitamins and minerals or proteins and fatty acids.

Let me break this down into everyday language for you. Let’s say that these miracle sugars are to the cells what the alphabet is to you and me. We rely on the 26 letters of the alphabet everyday to communicate with everyone around us. Similarly cells rely on glyconutrients to communicate with all the other cells in the body.

What would happen if all of a sudden the alphabet was missing 5 letters? If we could no longer use the letters "G H N O and T" then a sentence as simple as "What are we going to have for dinner tonight" would no longer make sense to anyone. This sentence would now say "Wa are we i ave fr dier i?" Our communication system would break down by simply removing five letters from the alphabet. We would no longer be able to complete a major task in our everyday lives. The same holds true for cell-to-cell communication. Without all eight glyconutritionals in our system communication breaks down and allows disease to set in because the cells can no longer recognize the "good" from the "bad" and therefore can’t heal or correct or defend each other.

Unfortunately today only 2 of the 8 essential miracle sugars are readily available in the food in our diets’ and no other combination of any nutrients can substitute or replace them. There are many reasons why this deficiency has occurred. Some of these reasons include:

    * Green harvests that don’t allow all the nutrients to develop before picking
    * Processed foods that loose many if not most of their nutrients
    * Preservatives
    * Increased toxins in our environment and
    * Gradual soil depletion.

All of these reasons have affects on each glyconutrient we get in our diets.

What is amazing is that cells are preprogrammed to do what they do; they simply need the right raw materials to do it with. Glyconutrients have proven to be the missing links in restoring and maintaining health and do what no vitamin... mineral... amino acid... or herbal remedy can do. They help nourish and support every single cell in the body and allow your cells to clearly send and translate messages to each other and operate efficiently.


Some moms purchase a product from  Newrootz has Super Glycoz, which provides 8 essential sugars, but is much cheaper than the brand that Jane used.

Recipe to Mix Your Own
The following is from

The eight "essential" sugars are: mannose, glucose, galactose, xylose, N-acetylglucosamine, N-acetylgalactosamine, fucose (not to be confused with fructose), and N-acetylneuraminic acid. They are very important for health. I will not spend time dwelling on all the benefits as others have already done this in ample detail. In addition to the essential sugars, most of the ingredients in this recipe provide other health promoting properties as well. The aim here is to provide a simple and inexpensive way of getting glyconutrients. So let us now look at these eight sugars and see where we can get them from.

1. Mannose.
Mannose may be the single most important of the eight sugars for us to get plenty of. One of the main sources is aloe vera, which contains acemannan. Acemannan is a mannose polysaccharide (i.e. a chain of mannose molecules). From what I've studied, most commercial supplements of aloe only have very small amounts of acemannan in them so the best way is to grow the aloe vera oneself. It is a very handy herb to have in the garden or green house (e.g. good for minor burns and some skin ailments) and it is easy to cultivate. Consult a gardening book, but apparently it needs a sunny spot that's not too moist. I may want to enjoy using plenty of it, so ideally would like to invest in about ten plants. While I am waiting to buy and establish my own aloe plants I can use the glyconutrient powder which does have mannose in as well. This is from the kelp, the shiitake and the ground fenugreek. I have actually recently decided to just take the glyconutrient powder (as detailed below) because I find it easier. Fenugreek contains plenty of galactomamman, a polysaccharide of mannose and galactose (other sources of galactomamman are carob gum and guar gum). Ground fenugreek should be readily available from a good health food store or supermarket, or I can buy the seeds and grind them myself. I prefer organic fenugreek. Shiitake mushrooms have in them a compound called KS-2 which contains mannose bound to an amino acid. We will say more about shiitake (and kelp) later. Using fenugreek, kelp and shiitake should not be very expensive. Aloe vera plants may be expensive to start with, but a friend may have a "jungle" of the plants and be able to give some.

2. Glucose.
Regarding the powder, glucose is found in kelp. But we don't really need to supplement glucose as it's so abundant in our diets anyway. For the "jam" recipe the prime source is 100% pure grape juice, preferably dark organic (but I don't worry if it's not feasible). The grape juice will help, along with the next item, to make the aloe vera taste yummy instead of yuck. This juice is relatively cheap and if you have a juicer you can make your own.

3. Galactose.
Galactose is present in the fenugreek of the powder and also in a lot of foods that we normally eat. For the "jam" recipe the prime source is 100% pure apple juice, preferably organic. This juice will help, along with the previous item, to make the aloe vera taste yummy. Both apple and grape juice have health properties of their own. Again this juice is relatively cheap and those with juicers can make their own. (It's best to make your own because commercial brands have been found to have arsenic in it.-Andi) Some analysis don't report galactose as being in apple juice. This is because the galactose is in the pectin fiber which is present in varying amounts in juice.

4. Xylose.
Xylose is present in the kelp used in the powder. Ground psyllium seeds are high in a xylose polysaccharide. They are cheap and easily obtained from a chemist or health food store. Psyllium is used in the "jam".

5 and 6. N-acetylglucosamine and N-acetyl-galactosamine.

Vegetable sources:
For those not wishing to consume medicinal animal products orally it is nice to know that Shiitake Mushroom contains N-acetylglucosamine (as a constituent of chitin). I can purchase fresh and/or dried Shiitake Mushrooms from many supermarkets and food stores. I buy dried whole shiitake mushrooms and powder them by using my liquidiser. Or I can buy a tablet with shiitake in. Shiitake Mushrooms do not contain N-acetyl-galactosamine. I thought that mistletoe contained N-acetyl-galactosamine but it appears that it does not. Instead it seems to contain a lectin that is specific for the N-acetyl-galactosamine receptor site. Also there are some toxicity issues with mistletoe. N-acetyl-galactosamine is contained in dextran sulphate, which is present in a red algae called Dumontiaceae. But this product is only available from Japan as far as I know. Update: but appears to also be available from Also received this message from someone: "A source for Dumontiaceae: This is the only place I found a bulk powder (250g for $40)".

Animal Sources:
Bovine cartilage and shark cartilage both have an abundance of these two essential sugars. These are both relatively cheap and available from a chemist or health food stores in capsules or loose powder. I prefer the bovine cartilage because it is predominantly the chondroitin 4-Sulfate form of chondroitin which is apparently slightly better (shark is predominantly chondroitin 6-Sulfate). I am not especially concerned about prions and [BSE] from a bovine source because I can check where the cows come from and cartilage is not one of the tissues especially at risk for prion contamination. Actually, from what I've read, chondroitin is a substance that can be used to help treat prion disease as it interferes with the prions doing their dirty work in the nervous tissue. I am more concerned about the possibility of heavy metal contamination in shark cartilage, though I have not read any major problems regarding this. Those not wishing to consume animal products orally could use an arthritis cream containing chondroitin sulphate. The best cream I know of is Arthro-Aid Direct, which should be rubbed on the tummy at the time the glyconutrient powder is consumed.

7. Fucose.
Kelp seaweed is rich in fucoidan, a polysaccharide containing plenty of fucose. Fucoidin is a complicated molecule that also contains xylose, mannose, galactose, and glucose. If anyone has an overactive thyroid they should not take this or other sea weeds without medical advice and monitoring. An alternative is beer yeast, which, according to my research, also contains plenty of fucose. Kelp has many health benefits and can be bought cheaply as a powder. It does not taste good to me! Compare Seaweed.

8. N-acetylneuraminic acid (otherwise known as sialic acid) is found in whey protein isolate. Whey protein isolate also contains lots of other goodies. If allergic to diary (though I am told some that are
allergic to diary can take the isolate) an alternative is egg, which may be best raw. I need to make sure it is an organic egg from a healthy chicken. I need to make sure I buy whey protein ISOLATE, not just whey protein or whey powder. A 500g pot of whey protein isolate is a little costly but will last a long time and so is not a big expense long term. Note: I received some information early 2004 that suggested whey protein concentrate may have a higher amount of N-acetylneuraminic acid in it than the isolate.

How I can prepare and consume the ingredients:

TWO items will be discussed:
1. A glyconutrient powder which provides all 8 essential sugars at a minimal cost. The powder is more convenient to take and use than the "jam" and I am not currently using the "jam" -- just
concentrating on the powder.
2. The glyconutrient jam which, if made correctly, tastes yummy and which is designed to give large amounts of the key monosaccharide mannose.

1. Glyconutrient Powder
Here are the powders, the glyconutrients they contain and the ratio for consumption (the ratio is by volume, not weight and is offered as a guide only):
• 1 part ground fenugreek: mannose, galactose (buy it already ground).
• 1 part shiitake mushroom powder: N-acetylglucosamine, mannose.
• 1 part kelp powder: fucose, xylose, mannose, galactose, and glucose.
• 1 part whey protein isolate: N-acetylneuraminic acid. Alternative is beer or brewing yeast.
• 1 part bovine or shark cartilage chondroitin sulphate powder (loose or in capsules): N-acetylglucosamine, N-acetylgalactosamine).
Alternative is Dumontiaceae ( for the N-acetylgalactosamine.
• 1/2 part of ground psyllium (or the husks alone would probably do) to boost the xylose content as there is not that much xylose in kelp.

You can mix all powders together along with a little red cayenne pepper powder and a little turmeric powder too (unless you are already using longvida curcumin). Cayenne may enhance digestion and is an extra tonic (1/10-1/20th part). Turmeric has antioxidant properties.
You can add 1 part of lecithin granules as it supposedly enhances absorption of glyconutrients.
You can mix about 1 heaping tsp of the mixture in about 50-ml of cold beverage and drinking it down quickly at the beginning of breakfast, lunch and sometimes also the evening meal. You could use more if you were ill with some major complaint.
Alternatively, I could take it with yogurt etc. or put the powder into "OO" size vegetable capsules to consume. Ideally, I would take five size "OO" capsules twice a day before meals. An alternative, if I wished to avoid mixing powders, would be to take one "OO" capsule of each  powder twice a day before meals.

Thirdly, you could take your powder mixed with an equal amount of honey.


It seems that some in Australia may be having difficulty tracking down some of these ingredients, which is a surprise. So as a service to Aussie folk and NZ researchers* if you want some more tips. Also click on [the same] link for a suggestion I have found good regarding taste!
* go to

Whey protein isolate can be taken "sublingually" in small amounts too. I am told that this is an even better way of taking it. But it can take awhile to "dissolve".

Kelp in particular does not taste good to me. However, I have found it OK to take as part of the powder in the water at meals. Also a teaspoon of kelp powder plus some cayenne did not taste too bad to me when I tried mixing it with a heaped teaspoon of honey. Having said that kelp doesn’t taste good, my two-year-old daughter asked for some when she saw me experimenting with it at the table. Despite my warning she still wanted some and so I gave her a bit on the tip of a spoon. To my surprise, she actually wanted more! Honey occasionally contains spores of Clostridium botulinum - the Detrimental Bacteria that can cause the type of food poisoning called Botulism. For this reason, honey should not be fed to children under 12 months old.

Kelp and Wakame seaweeds (Asian style), shiitake, fenugreek and whey isolate are all foods that can simply be eaten as part of a meal. There should be a good way of having all these items at a meal say twice a week using for example, wakame, fenugreek, shiitake, rice and vegetables with whey isolate mixed with dates and soy yoghurt for dessert. We need some good chief to come up with a tasty recipe for us to use! Have this meal with a chondroitin sulphate capsule and you've got all 8 sugars!

2. Glyconutrient Jam

Slowly simmer (don’t boil) 1 litre grape juice and 1.5 litres of apple juice so that half the water evaporates. Before turning off the heat stir in about 1/4 cup of ground psyllium. IMPORTANT: MAKE SURE NOT TO PUT IN TOO MUCH PSYLLIUM AS IT WILL TURN INTO A SOLID JELLY THAT IS NO GOOD FOR MIXING THINGS WITH. I err on the side of too little psyllium then add more if needed. Keep stirring for a couple of minutes or so then turn off the heat and let it sit. It will turn into a kind of jelly that tastes like jam. The heat should help to break down the psyllium polysaccharide into the xylose molecules. Store in a jar in the fridge.

When I wish to take my glyconutrient jam I put 1/4-1/3 of a cup of the grape, apple and psyllium jelly into a container. I grab about 4-5cm of an average aloe vera leaf from my garden and using a pair of scissors or knife chop it into the jam. Note: aloe contains a laxative so diarrhea is a sign that I am taking too much. If you get diarrhea (from the yellow aloin just under the skin) then try scraping out and eating just the gel. I stir the aloe bits in and then eat it with a spoon. The aloe and jam should taste nice, but if not happy I can try cutting the aloe vera into smaller pieces or liquidising it into the jam. This further improves taste but ends up taking more time, especially to clean up! The aloe vera needs consuming soon after picking and chopping as I am told aloe vera’s mannose is quickly damaged or degraded after a leaf is picked.

The glyco-jam is easiest taken as a kind of entrée 10-30 minutes before meals or on its own as a supper in the evening. I aim, for maintenance, to take this mixture three times a week or daily. For nutritional support when ill I could be take it more frequently.

Natural Sources

Here are a few links to help you find more food sources which have Glyconutrients in them:

Goji Berry info
Goji polysaccharides were proved to be exceptional source of the essential sugars like rhamnose, xylose, glucose, mannose, arabinose and galactose. These sugars are highly regarded to be necessary in our immune system and in our proper intercellular communication where in the cells in our body can work together properly in fighting and resisting disease. Because of this Scientists were concluding that Goji may be the richest source of glyconutrients yet found in the planet. (Above is an excerpt from

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