Friday, January 6, 2023

 

 

 


Registration is open for the 

2023 Down Syndrome Innovations Conference!

February 24-25

Live Stream is available.

This is the perfect venue to learn alternative strategies to support the progress of people with DS.  
 
The speakers are hand-picked by parents like me who have seen results.


Thursday, September 21, 2017

2017 Down Syndrome Innovations Speakers and Topics


September 2017
Conference Speakers, Presentations & Deadlines
Doctors, therapists, parents, educators, advocates, scientists, researchers and loved ones gathered during the 2016 Innovations Conference.
Deadlines!
September 28.... Early Bird Registration Ends
October 4..... Meet & Greet Registration Ends
October 6.... Hotel Registration Discount Ends
Speakers and Topics
Mitochondrial Dysfunction and Inflammation/
Neuroinflammation in T21 and What to do About It
Norman Schwartz, MD
....

My Life
Lydia Winans, student and self-advocate
....

Risk Reduction for Leukemia in those with Down Syndrome
Laurette Janak
....

Brilliant Learning Tips for Students with T21
JoQueta Handy, PhD, SLP-CCC
....

Hope Unexpectedly Awaits in Sound: Tomatis Listening Therapy
Ellen Young, PhD, MA, RCTC
....

Application of Near-infrared LEDs to Improve Cognition ...and Improve Language... Can Photobiomodulation Strengthen Connections in the Default Mode Network?
Margaret A. Naeser, Ph.D
....

Cognitive Improvements with Alzheimer's Disease/Dementia
Using Low Level Light Therapy
Anita Saltmarche, PhD
....

Reflex Integration Using Low Level Light Therapy
Bonnie Brandes, M.Ed
....

Neuro-developmental Therapy and SOI (Structure of Intellect)
Intelligence Can Be Learned
Linda Kane, M.CND
....

Growth Hormone Deficiency in the T21 Population
Richard Levy, MD
....

The Science Behind Reducing Oxalate in those with Down Syndrome
Susan Costen Owens, BS, MAIS
....

Functional Nutrition Strategies for Enhancing Digestion
and Preventing Neurodegenerative Decline
Gail Clayton, R.Ph, MS, CNS
....

The Importance of the C Cleanse and
Use of Functional Predictive Biomarkers in T21
Russell Jaffe, MD, PhD
....

Sleep, Circadian and Stem Cell Renewal Factors
in the Learning Disability seen in those with Down Syndrome
Craig Heller, PhD
....
Sponsored by:

Wednesday, July 12, 2017

Saturday, April 8, 2017

2017 Down Syndrome Innovations Conference

For more information, check out the 2017 Down Syndrome Innovations Conference site!

Integrating Reflexes Using Low Level Light Therapy

I am QRI certified to integrated reflexes using safe, effective Low Level Light Therapy (LLLT).

 
Jett relaxing during a QRI laser session.

Book an LLLT Session

Integrating reflexes improves speech, fine and gross motor movement, behavior, cognition and mood. Using QRI Low Level Light Therapy (LLLT) allows the reflexes to be integrated faster and to remain in place longer. Reflex integration (RI) helps other therapies to work better. It's best to do RI before other therapies like PT, OT and ST.

A customized hour session could include: 

Prep Points 
Healing Sound Frequencies
Reflex Integration Protocols for 18 reflexes including Moro, Fear Paralysis, STNR, ATNR and more.
Additional Protocols concentrating on Speech, ASD, Movement, Sensory Integration, Brain Balancing, Stimming etc.

Clients include those with:

Cerebral Palsy
Down Syndrome
Autism Spectrum Disorder
Learning Challenges
Movement Challenges
Speech Challenges
Behavior Challenges
PTSD
PANDAS/PANS

Wednesday, February 1, 2017

How to Stop Verbal Stimming


What is verbal/auditory stimming and how can we stop it?

First, What is Stimming?  

Stimming is short for "stimulation." According to Neurodevelopmentalists Marilee Nicoll Coots, B.A. and Cyndi Ringoen, B.S., B.A. in their article, "Sensory Play": 
...It is repetitive, often appears compulsive and can occur using any of the senses. Parents usually describe it as something that doesn’t seem quite right...
Sensory play is a learned behavior that an individual develops for several reasons. Primarily, it feels good so the behavior is repeated.
You may have heard some say that sensory play is beneficial, calming, a communication attempt or even a type of psychological mechanism. It is possible that on an unconscious level some children use stimming to control their environment or to avoid the things they wish not to do. For example, if a child stims, he may be able to avoid uncomfortable social situations. It is important to consider that many adults engage in various behaviors for the same reasons -- including: smoking, drinking, taking drugs, overworking etc. Just because a behavior has a purpose does not mean the behavior is healthy or developmentally helpful.
There is often a metabolic component to stimming. When children are out of balance metabolically, their stimming is increased. Appropriate metabolic intervention can often reduce stimming and occasionally halt it.
Repetitive sensory play creates endorphins, “happy,” “feel good” chemicals in the brain, much the same as the “runner’s high.” These chemicals become addictive, causing the individual to repeat the activity in order to renew the good feeling. Thus, the child becomes trapped in a compulsive behavior. Development stops progressing, becoming more and more delayed...
We seek to stop sensory play, not as an end in itself, but as part of an overall treatment plan, which includes addressing the underlying neurodevelopmental causes of the behavior...

The most frequent verbal stimm that I've heard is a constant "Ehhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh....." But that might just be because it's hard to ignore in public. Jett's verbal stimm when he was little was to talk non stop. At his worst, he'd repeat every single word that he heard. Everything. Any conversation, anything on TV, etc. It was maddening!!

Examples of Verbal Stimming from "Sensory Play":


  • blurting out loud and/or high pitched noises
  • Repetition of odd noises/sounds
  • talking to self-- excessive and nondirective
  • echolalia of phrases, movies, songs........
  • humming
  • nose humming
  • banging on everything
  • throat sound--compulsive (Andi's Note: this can also be from a mycoplasma infection. Read the book America is Infected.)
  • pounding toys or books
  • excessive giggling (Andi's Note: this can also be from yeast overgrowth.)
  • electronic games that repeat sounds
  • inappropriate giggling (often a sign that they are stimming)
  • repeating a video scene over and over
  • telling the same story over and over
  • constantly singing
  • reciting alphabet over and over

What Stopped Jett's Verbal Stimming?

Jett quietly standing still.
Bacopa monera extract!  

BME is an Ayurvedic medicinal herb traditionally used for enhancing cognitive functioning. I discovered this cure by accident. I was trying to stop Jett from running around in circles... which led me to why animals in cages do it... which is because of stress... which led me to trying to regulate his stress levels... leading me to bacopa monera. After about 2 weeks upon giving Jett BME, not only did it stop the running in circles, but it also stopped the verbal stimming! Score! 



Jett started it when he was a year or so old. And it has never come back -- unless I run out of BME. Then it reappears about two to three days upon stopping it. I also saw that Jett was more affectionate.





Benefits of Bacopa

  • Memory Enhancer. Human studies conducted on 76 adults, between the ages of 40 and 65, showed significant improvements in memory retention of learning new information.
  • Neuro Protection. Acting as a powerful neuron antioxidant, BME was shown to provide significant protection against free radical induced toxicity of the neurons as well as a protector of DNA against damage. Further protection was demonstrated for aluminum induced oxidative stress, and against excitotoxcity elicited in epileptic rats.
  • Anti-Depressant. BME was found to provide important antidepressant activity in animal studies.
  • Reduction in beta-amyloid deposits in the brain (as is characteristic of Alzheimer’s disease), in animal research. The authors suggest that such mechanisms of action may have application in Alzheimer’s.
  • Enhance learning and academic performance and improve mental alertness.
  • Enhances mental focus in stressful situations and improves mental clarity and mood.
  • Helps regulate cortisol levels.
  • Thyroid-stimulating. An animal study investigating the effects of botanicals on the thyroid found Bacopa increased T4 (Thyroid Hormone) levels by 41 percent. (If you do give this to your child, be sure to watch for signs of hyperthyroidism although many of our children can't convert T4 to T3 anyway!) 
Check out this post for more about bacopa, including recommended brands and dosing information.

Wednesday, June 15, 2016

Two Down Syndrome Conferences for the Price of One!



 http://www.downsyndromeinnovations.com/


Register here.

Registration already includes free access to the 2016 videos, so this is a great bonus!

Note: Several speakers will include information about Green Tea Extract in the Down syndrome population in their presentations at the conference.

Here are the presentations that are part of the free video access:
EGCG in the Down Syndrome Population
John Starbuck, PhD
Thinking About Trisomy 21 – Towards a Best Practices Approach
Norman Schwartz, MD

Hypothyroidism and Down Syndrome
Erica Peirson, ND

NeuroMovement: Turning the Child with Down Syndrome into a Potent Learner
Anat Baniel, ABM creator

Maternal Choline/Neurogenesis/Therapeutic Intervention for Basic Brain Cognition Support
Barbara Strupp, PhD

Oxidative Stress and Epigenetic Alterations in Down Syndrome: Targeted Nutritional Intervention Trail at Arkansas Children’s Hospital
S. Jill James, PhD

Dietary Targeting of RCAN1 and Chromosome 21 Genes to Treat the Down Syndrome Population
Dana Crawford, PhD

Molecular Mechanisms Engaged in Brain Prior to and Following Development of Alzheimer’s Disease Neuropathology and Dementia in Down Syndrome
D. Allan Butterfield, PhD

Mitochrondial Dysfunction and Oxidative Stress in the Down Syndrome Population
Jorge A. Busciglio, PhD

Treatment Strategies for Mitochondrial Dysfunction
Richard Frye, MD PhD

Healthy Digestion-Healthy Microbiome: What to Test, What Tests Mean and What to Do
Russell Jaffe, MD Phd FACN

Oral Placement Therapy Techniques for Better Speech
Monica Purdy, MA CCC-SLP

Optimized Nutrition is Essential for those with Trisomy 21. Where’s the Debate?
Kent MacLeod, BSc Pharmacology

The Baby-Led Weaning Approach: An Excellent Option to Assist Babies with Down Syndrome in Transitioning to Solid Foods
Jill Rabin, MS CCC-SLP
Gluten Free
Paula Dempsey, Small Business Owner and Grandmother
to child w/Celiac
Balancing Minerals in the Down Syndrome Population
Morley Robbins, MBA CHC

Developmental and Behavioral Consultants
Alison Wimmer, BS Neurodevelopmentalist

Early Dental Intervention to Improve Airway Size and to Correct Oral Rest Posture
James Bieneman, DDS

Small Intestinal Bacterial Overgrowth
Erica Peirson, ND

My Teen Life: Living with Trisomy 21
Lydia Winans, student

Tuesday, May 10, 2016

Down Syndrome Innovations Conference Sept. 16-17, 2006 Little Rock, AR


September 16-17
Statehouse Convention Center

Little Rock, Arkansas   

Don't miss out on this one-of-a-kind opportunity to hear dynamic researchers, physicians, therapists and advocates present cutting edge translational medical research and interventions to improve the health, cognition, behavior and development of individuals with Down syndrome.

Make new friends and connections. Network with other attendees who share the common goal of exploring ways to enrich the lives of individuals with Down syndrome. Be able to speak face to face with expert vendors of supplements, quality service providers and try out innovative products for yourself.

Sponsorship Opportunities available!

Check out the Down Syndrome Innovations conference website for details.

Also join the 2016 Down Syndrome Innovations Conference Event Page for up to date news.

Friday, February 26, 2016

Preorder your Readeez Volume 4 DVD Today!

For those of you haven't heard of Readeez, it's short musical, educational video songs. In them, the words come up the same time that the child hears them. So kids are learning to read with them as well as concepts such as math, money, planets, etc. Readeez is working on a new DVD and have GREAT specials so that you get Volumes 1-3 and preorder Volume 4. But you only have a few days left to do it! 

For $10 you can preorder the digital download of Volume 4.

For $50 you can order the whole set to be donated to a family w/a child with Down syndrome or ASD.

For $75, you'll get the Readeez Volume Four DVD/CD set, signed by Michael Rachap, weeks ahead of the August release. Your name (or your child's) will appear during the closing credits. Plus you get the digital versions and the sticker. As well as everything in the Readeez Mega Bundle (that's 3 DVDs -- Volumes 1-3, 1 CD called Songeez and 6 digital downloads).

Estimated delivery: Jun 2016

Here's a sample: http://www.readeez.com/watch/22-blues

Jett learned all the Presidents of the US as well as all 50 states by listening to Readeez. (I guess that's how--I didn't teach him!) It's also the perfect distraction while feeding your child supplements, getting a hair cut or getting blood work done. Yes, we've used Readeez successfully for all three.

So not only can Jett read, but he also has nice hair, a good nutritional panel and up-to-date labs. Readeez is pretty amazing!

Don't let this opportunity to support quality products for our kids slip from our fingers!
https://www.kickstarter.com/projects/1310173902/help-us-make-readeez-volume-four-music-and-video-f

Tuesday, January 19, 2016

Watch me Online at the FREE Happy Healthy Kids Summit!

Me and Jett, 5 years old
Join me at the FREE Online Happy Healthy Kids Summit
Thursday, January 21st 
(and will be available on Friday and Saturday)

I'll be giving tips on: 
  • clearing congestion 
  • relieving constipation 
  • things to consider regarding vaccinations for our kids with DS 
  • importance of thyroid treatment 
  • my favorite supplements 
  • alternative therapies 
Sign up today to get the Summit link

It's especially good for newbies. :D
Hosted by chef/author Christine Waltermyer. 

Tuesday, October 13, 2015

Recipe for Success: How to Get Your Child to Feed Supplements to Himself!

Finally, a way to give supplements without a struggle! This is also how your child can get his supplements at school. Jett takes his morning dose of vitamins, herbs and minerals mixed in his applesauce or a mashed banana while he watches one or two 3-4 minute educational videos from Brain Pop, Jr. But I also put in 4-5 "party balls" in his lunch with about six supplements and he always eats them. I also brew him some holy basil or rooibos tea (with apple cider vinegar and probiotics-- I know, yum!) and put it in his straw cup that he brings to school.



The video is of Oliver, Jett's 25 month old brother who has cerebral palsy, feeding himself his supplements. I did make too many (11) so he ate 3-4 at the first sitting and 4 at the next and then the rest a couple of hours later. But that's okay because he's still getting them! Since then, I've been adding much less nut butter and making only about 4-5 "party balls" so he eats them all by noon.  


And here's Jett's (5 years old) review of them while doing a little math. (I swear, HE started the math -- I was just following his lead.) :)

Recipe for Supplement Success

They are a gluten and casein free, nutrient-dense treat.

Party Balls

Ingredients
You can purchase all the ingredients here. 
  • Supplements of your choice (See how to decide what to give here.)
  • Nut butter of your choice (preferably sprouted and organic so that it becomes a nutrient as well rather than an anti-nutrient) or dates/figs can replace the nut butter:
Pumpkin seed butter     or          smashed dried dates/figs
Sun nut butter
Peanut butter
Almond butter
  • Organic sweetener of your choice:
Stevia (plus one of the others)
Manuka honey
Maple syrup  
  • Pink Himalayan sea salt (as needed)
  • Organic "goodies" of your choice:
Puffed amaranth
Shelled hemp seeds
Chia seeds
Coconut shavings/shredded
Finely chopped organic, unsulphured, dried goji berries
Finely chopped organic, unsulphured, dried gooseberries (amla)
Chia Goodness cereal like apple almond (It's not organic but it's quicker and cheaper--in the short term--because it has most of the ingredients already in it.)

Directions

These are the supplements that Oliver is eating in the video: 1 MitoQ, 2 Curcumin Longvida, 1 Partoid PMG (for detox), 1 MegaFolinic, 2 Stress Guards (organic B vitamins with adaptogens), Mega Food Zinc, Raintree Immune Support (natural antivirals/antibacterials/antifungals), 2 Vitamin Code Vitamin Cs, 2 Cognitex (brain support mix), 2 Prenatal Fish Oils and 2 Garden of Life Children's Multivitamins. 

1) Crush tablets, open capsules and squirt soft gels into a bowl. 


2) Add a nut butter to the supplements with a bit of cinnamon and stir until well blended. Taste. Then add a tiny bit of salt (helps with bitter flavors), a drop of stevia and a bit of maple syrup (helps with sour flavors) until you think your child will like it. The first time you make it, I'd err on the side of a little too sweet just so that he'll like it. Then once he already thinks of it as good, then the next time you can make it less sweet.

Notes: It seems that the less the mix contains synthetic ingredients, the easier it is for their palates to tolerate. When I buy the raw sprouted pumpkin seed butter, I try to buy it without added sweeteners or salt so I can add my own. When I first open the jar, I stir in some pink Himalayan sea salt (more nutritious than processed salt) and maple syrup if absolutely necessary. I would use manuka honey instead of maple syrup, but both Jett and Oliver muscle test negatively for honey at the moment.


3) Get some nutrient-packed goodies and put them in a bowl and stir. Pictured: Chia Goodness cereal, shelled hemp seeds, chia seeds and puffed amaranth. I also add coconut flakes and finely chopped goji berries or gooseberries.


4) Roll the nut butter/supplement mix into balls and put in the goody mix. 
Note: Now, I smush the balls into the mix first so that the goodies are incorporated throughout the nut butter then I roll into a ball. I add more puffed
amaranth to coat the outside.


5) Coat with goodies and give to your little one for a healthy treat that he can feed himself and you can feel really good about!

Note: If there's any extra goodies left over that I didn't use, I put in a wax paper baggie and use for the next day. 

Make Ahead Suggestions
  • Premix the "goodies" in a wax paper bag for quick easy mixing the morning of.
  • Put the unopened capsules, uncrushed tablets and unpunctured softgels in a small container ready for the next day.
  • I don't know that I would premake the balls other than one serving the night before because you can't be certain how potent the supplements would stay. I do make mine every morning. I did premake it once and the balls were more crunchy on the inside. Jett enjoyed that texture was well as the softer texture of the freshly made ones.


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Tuesday, June 30, 2015

Down Syndrome Innovations Conference Sept 11-13, 2015 Arkansas Children's Hospital

 and
 Arkansas Children's Hospital and Down Syndrome OPTIONs bring you therapeutic ideas, educational strategies and research supporting translational medical interventions that can improve the symptoms seen in those with Trisomy 21.

Register today!


Seize this opportunity to make life-long connections with caregivers, practitioners and researchers!
 
Schedule of Events
Billy Spillman, Artist

Friday, September 11, 2015

     Day 1 supports physicians and other professionals* Continental breakfast and lunch included.
     Meet and Greet that evening.
     Art Gallery featuring adult artist with T21, Billy Spillman.

Saturday, September 12, 2015

     Day 2 gives parents, advocates, and caregivers* more knowledge and better tools to help individuals with Trisomy 21. Continental breakfast and lunch included.

     *Both days of the conference will be open for parents and professionals to attend. 

Sunday, September 13, 2015

     Day 3 Family day!
    Join attendees at either Little Rock Zoo or the Donald W. Reynolds Science Center

To get the group rate, email kerrinelson70(a)gmail.com to let us know which one you want to attend and how many adults and children (indicate ages) will come.   
 
Expert Presenters on Must-Hear T21 Topics for Day 1 and Day 2
  • Dana Crawford, Ph.D. -- Dietary Targeting of RCAN1 and Chromosome 21 Genes to Treat the Down Syndrome Population
  • Jorge A. Busciglio, Ph.D. -- Mitochondrial Dysfunction
  • Norman Schwartz, M.D. -- Thinking About Trisomy 21- Towards a Best Practices Approach
  • Barbara Strupp, Ph.D. -- Maternal Choline/Neurogenesis/Therapeutic Intervention for Basic Brain-Cognition support
  • D. Allan Butterfield, Ph.D. -- Molecular Mechanisms Engaged in Brain Prior to and Following Development of Alzheimer's Disease Neuropathology and Dementia in Down Syndrome
  • Anat Baniel -- NeuroMovement: Turning the child with Down Syndrome into a Potent Learner
  • Raphael Kellman, M.D. -- Thyroid/Endocrine Function, Microbiome
  • S. Jill James, Ph.D. -- Oxidative Stress and Epigenetic Alterations in Down syndrome: Targeted Nutritional Intervention Trial at Arkansas Children’s Hospital
  • Richard Frye, M.D., Ph.D. -- Treatment Strategies for Mitochondrial Dysfunction
  • Alison Wimmer -- Educational Strategies: Change Your Perception of dis-Abilities
  • Monica Purdy, MA, CCC-SLP -- Oral Placement Therapy – The Missing Link for Increased Feeding and Intelligibility in Speech
  • Erica Peirson, N.D. -- Small Intestinal Bacterial Overgrowth
  • Morley Robbins, MBA, CHC -- Balancing Minerals in Down Syndrome
  • Louisa Silva, M.D., M.P.H. -- Qi Gong Massage Benefits
  • Jill Rabin, M.S., CCC-SLP -- The Baby-Led Weaning Approach: An Excellent Option to Assist Babies with Down Syndrome in Transitioning to Solid Foods
  • Lydia Winans -- The Life and Times of a Teen with T21
  • Kent MacLeod -- Optimized Nutrition is Essential for those with Trisomy 21
  • James Bieneman, D.D.S. -- Palate Expansion in the Down Syndrome Population
  • Russell Jaffe, M.D., Ph.D., FACN -- Healthy Digestion = Healthy Microbiome: What to Test, What Tests Mean and What to Do

Lydia Winans, Presenter
Child Care
Register now for child care. We will be providing qualified special needs care givers to make sure your little ones are safe and having fun. There will be a 2:1 ratio for kids w/special needs and 4:1 ratio for typical children, which is reflected in the price.

Hotel Reservations
We have rooms blocked off at Residence Inn Little Rock Downtown. Let them know you are with the Down Syndrome Innovations Conference.
     View map of Arkansas Children's Hospital.