No-one has yet been able to explain why the original formula for Nutriiveda has had such a significant positive effect, however, some theories are based around the amino acid profile of the product, something supported by recent research in traumatic brain injury in mice that showed evidence of improvement in cognitive function and neural repair with a mixture of essential amino acids. In fact, the first study came out n December of 2009, just months after I had started using Nutriiveda for therapeutic effects. (please look at the following link)

Most recently, the Department of Defense together with the Institute of Medicine (IOM) published two studies in traumatic brain injury where “nutrients” such as “high protein” and “branched chain amino acids” which are naturally found in Nutriiveda through food, were shown to have a positive effects.  Please see the reference links here.

New Nutriiveda Achieve is a slightly different formula

Nutriiveda  or NV as it’s been known in our nonprofit, has been updated and “improved” and it’s now called Nutriiveda Achieve.   However as there is a different amino acid profile to Achieve and a few other variables that were changed,  we don’t know if the new formula will still have the same amazing therapeutic effects of the original until they can be compared side by side in individuals with the same conditions as well as in research.   The original Nutriiveda contained as a protein source a 100% natural 100% casein free whey isolate protein which is high in all of the amino acids and contains all of the essential amino acids.  Achieve contains a combination of  whey protein and  pea protein.  While pea protein is healthy, it has  a different and lower amino acid profile than whey protein.  The original Nutriiveda has a small amount of apple fiber,  Achieve replaced this with a different fiber source and added a bit more.   We have recommended fish (or algae) with the original Nutriiveda as the source of the Omega 3s and all the essential nutrients from fish and the original Nutriiveda.  Flax is added to the new Achieve as a source of Omega 3s.  Flax is healthy and fine for those that don’t need high levels of Omegas, but there isn’t enough of the essential fatty acids EPA and DHA from flax as the conversion is only around 5% to 10% from the ALA.   There are a few added ingredients to the new Achieve including ionic trace minerals and digestive enzymes.   We have put together a serving suggestion and recipe page for the original Nutriiveda.  The taste and texture of the new Achieve are reported to be improved.  Nutriiveda original comes in canisters.  Achieve uses an environment friendly green packaging which contains what would be two canisters worth in one reusable zip seal package.  Here is more information from the Zrii website on Achieve.  Here is more information about the original Nutriiveda ingredients and how it’s being used for therapeutic results over the past 18 months.   Like the new Achieve, the original Nutriiveda was not formulated for therapeutic use in neurological conditions, it was formulated for weight management and to support the metabolic system.  Here is the history of how the therapeutic use was discovered.

Research

As I have indicated in the past, taking Nutriiveda (NV) has resulted in improvements that are far more effective than any drugs or treatments on the market for conditions ranging from autism, stroke, and epilepsy to cognition and Alzheimer’s. These positive effects are not limited to any specific age groups, with results seen in ages ranging from toddlers through to seniors. For example, we have numerous reports of individuals coming off various medications for seizures due to Nutriiveda, only to have their seizures return when these same people stop taking the original Nutriiveda

There should be research starting soon. One of our Dads in the group is the Director of Global Development for a research company. David as a scientist is amazed by what he’s seen with Nutriiveda in his own 11 year old son who has made the same remarkable gains as my 14 year old son Tanner. And has like me seen regressions when off. His company plans to test both formulations of Nutriiveda (original and new Achieve) side by side in preclinical research. David and his CEO fly in late June to discuss the research plans. They have various standard scientific models to test numerous indications.

Again as David said typically they look for preclinical validation and then hope it works in the human population – for NV we know we are already getting remarkable professional anecdotal feedback of 100 percent success so now it’s just “going backward” to “fill in the blanks” as we know it already is working phenomenally well in humans.  Once this research is complete most likely the product will relaunch for everyone else. The preclinical research may only be a few months. Not sure about clinical after that.

How to order original Nutriiveda (NV) or the new Achieve

Anyone can order the new Achieve.  However the original Nutriiveda is currently only available to those that order through this website or the “Cherab Team”

Lisa Geng's apraxic son Tanner

If you are already a customer of through this website  pursuitofresearch.org or anyone from the Cherab team please call customer service at 866 349 9911 and let them know if you want the original or the new NV Achieve as you will have that choice. If you are an international customer that places orders here or through Speech411.com you can still receive the original NV this way.

As I know this is all a bit confusing- please email me, Lisa Geng at lisa@cherab.org

If you want to learn more about original NV please see our “Getting Started” page at the Pursuit site.

Please pass this on to anyone else you know that is getting the original NV for therapeutic reasons and needs to know this as again there is no longer any other source of the original Nutriiveda…for now.

Special thanks!

And because I can’t say this enough -thank you to all that wrote letters of support of keeping the original for those of us using it for therapeutic reasons.  While many will try the new Nutiiveda Achieve we are happy that we wish to thank Zrii for providing us with the choice to continue with the original until we have a chance to try both and/or until research can tell us more.  And of course ain regards to research a special thank you once again to David – who is helping me to make this all happen!  Right now only a few fortunate of us know about NV, soon the world will!

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Written by Lisa Geng, mother to two boys that were both “late talkers” who are doing great today. President and Founder of the Cherab Foundation, and Co Author of The Late Talker book St Martin’s Press

Is Your Child A Late Talker?

· Are they quiet? · Seem shy? · Not talking like their peers?

· Allow you or siblings to speak for them? · Do you wonder why?

Your baby’s babbling and toddlers first words can be music to your ears. When faced with a child who doesn’t speak or seems to have difficulty with words parents are often told that their child is “just a late-talker.” Unfortunately, all too often, that is not the case. The American Speech and Hearing Association (ASHA) estimates that 16 million Americans under the age of eighteen have a chronic speech-language disorder and that some 45 million Americans are affected by communication disorders of one kind or another which was announded by Congresswoman Carolyn McCarthy during the kick-off of the Better Hearing and Speech Month Health Fair in Washington, DC on May 8, 2002 .

Most parents, and even most pediatricians, are not concerned when faced with a two-year-old who passes all of his developmental milestones on time – except speech and language. However, they should be. It is vitally important to identify and treat speech and language challenges as early as possible in a child’s life, with a strong emphasis on the early intervention years of birth to three. At this age the brain is undergoing the most rapid development. No harm will come from therapeutic services. “Early intervention services are benign in their delivery but can be extremely beneficial. Don’t wait. Six months for a 2 year old is equivalent to a quarter of their lifetime developmentally” as Dr. Judy Flax says, who is a Research Coordinator of the Tallal Lab and a Senior Research Speech Pathologist for the Infancy Studies Laboratory at the Center for Molecular and Behavioral Neuroscience (CMBN) of Rutgers University, Newark, NJ

To find out about your nearest Early Intervention program you should call your local school district, they will be able to refer you to the program appropriate for your child’s age. Waiting to refer is a loss of precious time that may impact on the child’s learning ability and social-emotional well being in later years. Pediatricians and parents should insist on a speech and hearing evaluation as soon as there is a real concern about a child’s early language development. Early referral is endorsed by the American Academy of Pediatrics, and the American Academy of Neurology. In addition, “any child with a severe speech/language delay should have a comprehensive health and neurologic assessment to look for medical conditions that may be causing or contributing to the delay” as Dr.Marilyn Agin says, a developmental pediatrician who is the Medical Director for Early Intervention for NYC.

CHERAB is a non-profit foundation that focuses on raising awareness of Apraxia and other speech and language delays, and the importance of early intervention. Working with developmental pediatricians, speech pathologists, neuroscientists and major hospitals the CHERAB Foundation is working towards research on therapies which may help late talkers with Apraxia, Dysarthria, delayed language development, Autism and other speech and language impairments. A list-serv overseen by pediatricians, speech-language pathologists, and educational consultants is run by CHERAB and can be found at their web-site. Through the list you can connect to many other parents who have children who have speech or language delays, and find out what they have been able to do to help their child.

Some speech disorders can overlap, or be misdiagnosed. For example, “Verbal apraxia, a disorder of central nervous system (CNS) processing, and dysarthria, a disorder of output, are commonly confused”, says Dr. Andrew Morgan, chief of child development at the Chicago College of Medicine. “Experts are able to differentiate between these two disorders by listening carefully to a child’s speech and by identifying certain physical clues”, says Dr. Morgan, but adds, “These disorders are poorly understood by physicians and by a lot of speech therapists as well.” It is possible for phonological disorders, apraxia and dysarthria to all occur together in the same child. Speech Language Impairments, which is connected to language based learning difficulties may also be present. And the severity of each may vary.

Apraxia is perhaps the most misunderstood of all the speech disorders. So, what is apraxia? Verbal Apraxia is a neurological motor speech impairment that involves a breakdown in the transmission of messages from the brain to the muscles in the jaw, cheeks, lips, tongue and palate that facilitate speech. There is no obvious weakness in these muscles and the child may well be able to move them quite happily when not trying to speak. Apraxic children, who are usually seen as “just late talkers” when young, are able to comprehend language at an age appropriate level, however have difficulty expressing themselves using speech. With apraxia, a child knows what he wants to say but there is a road block obstructing the signal from the brain to the mouth. For any child with a speech disorder, but especially with apraxia, the earlier therapy is begun, the better the results for your child and their social-emotional development.

Your Child’s Language Development

So how do you know when your child is having problems with speaking? When is a good time to seek out help? Being aware of average speech milestones can also help you decide whether or not to speak to your doctor. Some guidelines are provided here for your information, but if you have concerns about your child’s speech or language development, or any other developmental issue, make an appointment with your pediatrician so you can discuss these issues. While the average milestones are a good way to measure development, every child develops at their own pace, and this overview should not be used to diagnose a specific problem.

Normal Language Milestones – Clues of a Possible Problem
Typically seen in first 6 months
· Responds to name by looking for voice · Can regularly find speaker or source of sound · Cooing, gurgling, chuckling, laughing ·Imitates sounds and actions · Enjoys social games (peek-a-boo, pat-a-cake) · Babbling (bababa, mamama)

Cause for concern in first 6 months
· Cannot focus, easily over-stimulated · Seems unaware of sound, Cannot find source of sound · Seems unaware of people and objects in environment · Does not seem to understand or enjoy imitating · Lack of connection (eye contact, vocal turn-taking)
· No babbling, or babbling with few consonants

Typically seen in first 9-12 months
· Attracts attention by vocalizing · Waves bye · Vocalizations that sound like first words (mama,dada) · Clearly indicates desire for objects · Imitates new sounds and actions

Cause for concern in first 9-12 months
· Easily upset by sounds that would not upset others · Lack of response indicating comprehension of words · Lack of consistent patterns of babbling · Does not clearly indicate desire for objects

Typically seen in first 12-18 months
· Single word production begins · Requests objects: points, vocalizes, word approximations · Gets attention vocally or physically (mommy) · Knows adult can do things for them (wind up a toy) · Uses “ritual” words (bye, hi, please, thank-you)
Protests: Says no, shakes head, moves away etc) · Comments: Points and vocalizes or uses word approximations) · Acknowledges: Eye contact, vocal response, repetition of word

Cause for concern in first 12-18 months
· Lack of communicative gestures · Does not attempt to imitate or produce single words
· Does not persist in communication (may hold hand up for help, but gives up if adult does not respond immediately) · Limited comprehension (understands less than 50 words) · Limited vocabulary (speaks less than 10 words) · Lack of new words between the age of 12-18 months

Typically seen in first 18-24 months
· Uses mostly words to communicate · Begins to use two word combinations (more cookie etc) · By 24 months has more than 50 words, or word approximations

Cause for concern in first 18-24 months
· Relies on gestures to communicate · Limited vocabulary (speaks less than 50 words)
· Does not use any two word combinations · Limited consonant production · Mostly unintelligible speech · Regresses in language development: Stops talking, repeats phrases inappropriately

Typically seen in first 24-36 months
· Engages in short dialogues · Expresses emotions · Begins using language in imaginative ways · Begins providing descriptive details when speaking · Begins to use articles and word endings (a, the, ing,) uses plurals (cats)

Cause for concern in first 24-36 months
· Words limited to single syllable and no final consonants · Few or no multiword utterances · Does not demand a response from a listener · Asks no questions · Speech difficult to understand · Tantrums when frustrated · Echoing of speech without communicative intent

Adapted from Clinical Practice Guidelines Communication Disorders III 22-25
In addition, the policy statement from the neurology journal Neurology, (August, 2000), states that Absolute Indications for Immediate Evaluation include,
· No babbling or pointing or other gestures by twelve months · No single words by sixteen months · No two-word spontaneous phrases by twenty-four months · Any loss of any language or social skills at any age.

Oral-Motor Problems

Early feeding problems could be a sign of later speech challenges. The same muscles that are used for eating are used for speaking. A baby that has trouble nursing could be a early sign that the baby has muscle weakness in the oral motor area for example. If oral-motor difficulties are present your child should have an evaluation by a pediatric medical and oral motor speech expert to determine the cause and best therapy to possibly prevent some future speech problems. A few possible signs of oral-motor problems are outlined next.

Does your child have difficulties with any of the following?
· Blowing (unable to blow out birthday candles, or blow bubbles by one year) · Kissing or making a kiss face · Licking his lips · Imitating facial expressions such as smiling · Chewing or transitioning to solid foods · Excessive drooling

When trying to speak does your child?
· Display groping behaviors, searching for proper mouth position, silent posturing, dysfluencies · Show expressive language disturbances: limited vocabulary, grammatical
errors, disordered syntax · Make up sign language, or show frustrations when not understood?

It is important to note that some children have no difficulty with oral-motor movements, and may also pronounce speech clearly, but still may have difficulty learning language. There are many different types of speech and language problems, which together represent the number one learning disabiltiy in schools today. That is why again it is important to seek an assessment if a child is not attaining the language milestones at the expected age. Early intervention is key to your child’s development. If you have any concerns about your child’s speech or language development be sure to express them to your child’s doctor. If you want to find out more about early speech and language development and CHERAB’s efforts to help children with speech and language delays you can contact the group or visit the web-site at:

Book: The Late Talker, What To Do When Your Child Isn’t Talking Yet Dr. Marilyn C. Agin, Lisa F. Geng, Malcolm Nicholl

CherabFoundation
Communication Help, Education, Research, Apraxia Base
Main Websites: Cherab.org CherabFoundation.org
Main Online Support Groups: Childrensapraxianet Apraxia.org
Twitter @TheLateTalker
PO Box 8524
PSL, Florida 34952
772-335-5135

To find a Speech Language Pathologist near you:

American Speech-Language-Hearing Association (ASHA)
10801 Rockville Pike
Rockville, MD 20852
Phone: 1-900-638-8255
301-897-8682 (Voice or TTY)
Web: asha.org

Acknowledgements:

Marilyn Agin MD
Medical Director NYC Early Intervention, Advisor Cherab Foundation, co author The Late Talker book

Lisa Geng
President and Co-Founder of Cherab Foundation, PursuitofResearch.org, co author The Late Talker book

Cheryl Bennett Johnson SLS/MA Educational Consultant
VP Cherab Foundation, NJ State Teacher Representative

Paula Tallal, Ph.D
Rutgers’s University, Board of Governor’s Professor of Neuroscience
Co-Founder, Scientific Learning Corporation, Advisor Cherab Foundation

Also See The Cherab Foundation Brochure

You can pre-order this wonderful book from Amazon at the following link:
Nobody Ever Told Me (or my Mother) That!: Everything from Bottles and Breathing to Healthy Speech Development

Or order from the publisher
http://www.sensoryworld.com/generalsensory.html

Here’s a note from the author Diane Bahr, MS, CCC-SLP who is also a member of our group. If anyone has any specific question for Diane please ask!

Dear Friends and Colleagues,

I would like you to know that the parent book I have been working on for the last five years will soon be available. I wrote this book to share information that therapists often know, but parents of typically developing children, pediatricians, and others frequently do not know. It is also meant to help parents and others identify signs of problems that may be easily corrected when identified early.

The book provides specific information on feeding, speech, and mouth development so parents and others may be more proactive in a child’s normal developmental processes. It also has a chapter on using the information with children who have special needs.

The book is titled Nobody Ever Told Me (or My Mother) That! – Everything from Bottles and Breathing to Healthy Speech Development. It is being published by Sensory World (an imprint of Future Horizons), which can be found at http://www.sensoryworld.com

Many of you have supported me through the writing process in a variety of ways, and it has truly been a journey. Thank you for your support during the researching and writing process. I am attaching the preorder form as many of you have asked when the book will be available. The book will also be available on Amazon.

I hope the book will make the lives of parents, children, and therapists a little easier. I also hope you are doing well.

Best wishes,

di

Diane Bahr, MS, CCC-SLP

Nutriiveda…a life saver!

Robin Ketchum called me from the ICU at a Georgia hospital today. “Our 26 year old ‘Real Life Little Mermaid’ Mel is in intensive care right this moment and she almost died yesterday.” Before I go on I want each one reading this to stop and please say a prayer for Melanie that she is out of the hospital and home well soon.

Robin was not supposed to be using her cell phone but felt it was that important to reach out to me to update Mel’s blog due to what is going on with Mel and NutriiVeda …and seizures. This is a profound update and one to be taken seriously by anyone who has a child on seizure medication and nutriiveda. Melanie’s doctor is now totally convinced based on what he is seeing that nutriiveda is “healing Melanie’s brain” I’ll now explain a bit more in detail and hope that Melanie and her loving family are home from the hospital soon and Robin can update again herself!

As you may know from reading Mel’s blog, Melanie who was 25 yeas old when starting NutriiVeda; went from being almost catatonic, unable to dress, bathe, feed herself with almost no way to communicate, blank stares into within days and weeks on nutriiveda a vibrant young woman; eager to catch up on all the time lost, to talk, play, explore life! Melanie as you’ll read in her blog has had profound global apraxia and TBI that went undiagnosed for most of her life which led to lack of any appropriate therapy. And due to misdiagnosis of mental retardation and autism and the ABA therapy that came with the autism misdiagnosis, Mel developed severe post traumatic stress syndrome.

Like most parents with a child today with autism or similar disorders, Melanie’s parents tried everything they could to help their daughter over the past two decades, and took her from professional to professional. Various treatments, therapies and even what some today are exploring that I’m not a fan of: off label medications for autism –in Mel’s case the drug for Alzheimer’s called Namenda was tried as well with no success. As Robin puts it most professionals gave up on Melanie –but I never did. How would any of us be if all our life we were misdiagnosed and treated as if we were mentally retarded and provided with therapy that was completely inappropriate for us? As bad as that is, Mel’s story got worse. Sometime in Melanie’s early 20s in addition to everything else Melanie developed seizures that were life threatening, was in the hospital twice near death, and had to be put on “high” levels of the seizure medication Depakote.

If you need to know the details of what happened from day ONE on nutriiveda up till before the story I’m going to share please read Melanie’s entire blog athttp://littlemermaidmelanie.wordpress.com/about What I’m going to share today is another story of misdiagnosis and another near death moment for Melanie- but this time the story is tied into one of hope and miracles!

As Robin left off on her last messages as anyone can tell –Melanie is on her way to being a normal young woman. Suddenly aware of herself as a woman, other people around her, and wanting to participate in life’s fun and activity every moment. Robin who was Melanie’s primary care giver went from being house bound to watching Melanie’s every moment fearful of another life threatening seizure, not being able to take Melanie to stores or just about anywhere, or a doctor’s appointment at times without sedation, to one who all of a sudden could enjoy life with her daughters and husband! Life was good and that’s where we left off. Due to the lack of any seizure activity at all Mel’s seizure meds were reduced a few times. There were no seizures and no more “episodes of post traumatic stress syndrome” that the Ketchum family feared. Mel was working with a new Prompt speech pathologist named Martha and was scheduled for a new occupational therapy appointment. She was talking not just to people she knew but to people she didn’t. And…at a recent chiropractic office it appears Melanie even flirted a bit with the young handsome doctor who told her how beautiful she was and told her that she “reminded him of an actress”…so yes, things were on their way!

But about a week ago Melanie appeared to regress in all areas. She was once again unable to feed herself and was not verbal. In addition she was acting very unusual. At first the belief was that Melanie’s seizures were back as well as the post traumatic stress syndrome. Immediately Melanie’s Depakote medication which had been reduced was ordered back up to the original dosage and Mel was brought to the hospital. Tests were run but just like history –things were missed, and misdiagnosed. One thing that was discovered immediately is that Melanie did not have any seizure activity at all. The team of doctors did want Melanie to stay on Nutriiveda because it appeared to be helping her and in addition it was the only thing that Melanie would eat. Melanie is up to 6 scoops a day for therapeutic reasons and she has it mixed into apple sauce. Melanie was not getting any better however. One neurologist ran a series of seizure tests on Melanie and attempted to trigger a seizure with lights, pain (!!!) everything, even walking for 30 hours-but no seizures at all.

While looking for seizures what was missed is that Melanie had somehow developed pneumonia. Apparently most of the ICU is filled with what is being called a communicable outbreak of pneumonia in this Georgia area. I found this online just now when I searched for this ‘CDC sees sustained H1N1 activity in Southeast’ Mar 26, 2010http://www.cidrap.umn.edu/cidrap/content/influenza/swineflu/news/mar2610fluview.htmlThe strange thing is that for the first part of the week Melanie had no symptoms at all of being sick. No fever or coughing- nothing. She did start to complain of pain but of course that was at first thought to be headaches linked to seizures. Apparently I’ve been just told by Robin that pneumonia is painful.

Due to undiagnosed pneumonia however Melanie’s brain, heart, and kidneys were all at risk. What the doctors and Mel’s family are convinced of is that “Mel saved her kidneys” “She knew to drink lots of water to flush out her kidneys” What is incredible about this is that when Melanie first started nutriiveda she never liked to drink anything. It was a struggle to make sure she had enough hydration –but due to nutriiveda Melanie learned to be more in touch with her body’s needs and knew she needed water. If she did not drink all the water she did (she even got the cup and filled up the water on her own!!) she would have needed a new kidney by now. Why? Apparently in addition to her body dealing with pneumonia….her doctors discovered that the Depakote seizure medication that Melanie had been on for the past 4 years was now at a toxic level in her body as (I’m going to bold this on purpose) HER BODY NO LONGER NEEDED IT!!!!

Yesterday morning Melanie almost died from all that went on –but that little trooper pulled through. A series of more tests, EEG, MRI etc were run and there are a number of unexplainable changes in Melanie’s brain “due to NutriiVeda” according to the doctors. From 3 years ago Melanie’s brain is “healing” and “normal” There is no doubt that by the “end of this year Melanie will be off all seizure medication” and that she is “not to stop taking NutriiVeda every day”

The head charge nurse hearing all of this went to Robin to find out more information for her mother who has suffered from seizures all her life and after hearing more wanted NutriiVeda for her mom. Robin gave her one of her own canisters, but the nurse refused to take it without paying J

And this brings me to why Robin felt it so important to update Mel’s blog today. For any parent who has a child with seizures on medication it is VERY important to get frequent blood testing to measure levels. Melanie’s level when it went toxic from Depakote seizure medication went to 145 which is toxic –the doctors do not want it to be any higher than 50 for Melanie right now. To reiterate they expect her to be OFF all seizure medication by the “end of this year” (YAY!!!) Again the “only explanation” for this is that NutriiVeda is “healing Melanie’s brain” due to not only the changed reaction in the medication she was always on –but the actual neuro tested changes in her brain!!! This is just amazing!

The one other point I want to make is that Melanie prior to the heavy antibiotics was talking to her nurses and asking to go home. “I am not sick. Can I go home now please?” She was verbal and able to answer yes and no questions as well as ask the nurses for “lunch” “to drink juice” “a movie” and other things she wanted! But right now Melanie is no longer talking but we just know once she is off of the antibiotics and able to get back to her 6 scoops a day of NutriiVeda she’ll back to her new self! The high dosage of antibiotics were started last night and Melanie is not allowed to eat any foods due to choking fear so for the next day or so more she will not unfortunately be on NutriiVeda – the incredible NutriiVeda for a few more days; the same NutriiVeda that now more than just her family is crediting with “saving Mel’s life” We don’t know if NutriiVeda kept Mel from having the symptoms of being sick that in turn made it difficult to diagnose her accurately but we have to be thankful that her pneumonia was diagnosed. As I write this now Melanie is still in ICU. Robin is thankful that the hospital is letting her sleep and shower there so that she can stay with Melanie 24/7 till she makes it through this. The fever has broken and the hope is that Melanie can go home sometime early next week. Please again take a moment to say a prayer for our “Real Life Little Mermaid” Melanie Ketuchum. The poor thing has been through so much- she needs the chance to live her life that she never had and was just beginning to have. And…to perhaps flirt with that handsome young doctor again! J

Melanie you have all of my prayers. And Robin you are our hero! And to all the professionals out there –please read this and remember that things are not always how to appear. Please take the time to know that each case is not only unique –but a life. And in this case –Melanie’s life.

Thank you.

For more information on what nutriiveda is please visit  http://www.pursuitofresearch.org

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Lisa Geng

Your baby’s babbling and toddlers first words can be music to your ears. When faced with a child who doesn’t speak or seems to have difficulty with words parents are often told that their child is “just a late-talker.” Unfortunately, all too often, that is not the case. The American Speech and Hearing Association (ASHA) estimates that 16 million Americans under the age of eighteen have a chronic speech-language disorder and that some 45 million Americans are affected by communication disorders of one kind or another which was announded by Congresswoman Carolyn McCarthy during the kick-off of the Better Hearing and Speech Month Health Fair in Washington, DC on May 8, 2002 .

Most parents, and even most pediatricians, are not concerned when faced with a two-year-old who passes all of his developmental milestones on time – except speech and language. However, they should be. It is vitally important to identify and treat speech and language challenges as early as possible in a child’s life, with a strong emphasis on the early intervention years of birth to three. At this age the brain is undergoing the most rapid development. No harm will come from therapeutic services. “Early intervention services are benign in their delivery but can be extremely beneficial. Don’t wait. Six months for a 2 year old is equivalent to a quarter of their lifetime developmentally” as Dr. Judy Flax says, who is a Research Coordinator of the Tallal Lab and a Senior Research Speech Pathologist for the Infancy Studies Laboratory at the Center for Molecular and Behavioral Neuroscience (CMBN) of Rutgers University, Newark, NJ

To find out about your nearest Early Intervention program you should call your local school district, they will be able to refer you to the program appropriate for your child’s age. Waiting to refer is a loss of precious time that may impact on the child’s learning ability and social-emotional well being in later years. Pediatricians and parents should insist on a speech and hearing evaluation as soon as there is a real concern about a child’s early language development. Early referral is endorsed by the American Academy of Pediatrics, and the American Academy of Neurology. In addition, “any child with a severe speech/language delay should have a comprehensive health and neurologic assessment to look for medical conditions that may be causing or contributing to the delay” as Dr.Marilyn Agin says, a developmental pediatrician who is the Medical Director for Early Intervention for NYC.

CHERAB is a non-profit foundation that focuses on raising awareness of Apraxia and other speech and language delays, and the importance of early intervention. Working with developmental pediatricians, speech pathologists, neuroscientists and major hospitals the CHERAB Foundation is working towards research on therapies which may help late talkers with Apraxia, Dysarthria, delayed language development, Autism and other speech and language impairments. A list-serv overseen by pediatricians, speech-language pathologists, and educational consultants is run by CHERAB and can be found at their web-site. Through the list you can connect to many other parents who have children who have speech or language delays, and find out what they have been able to do to help their child.

Some speech disorders can overlap, or be misdiagnosed. For example, “Verbal apraxia, a disorder of central nervous system (CNS) processing, and dysarthria, a disorder of output, are commonly confused”, says Dr. Andrew Morgan, chief of child development at the Chicago College of Medicine. “Experts are able to differentiate between these two disorders by listening carefully to a child’s speech and by identifying certain physical clues”, says Dr. Morgan, but adds, “These disorders are poorly understood by physicians and by a lot of speech therapists as well.” It is possible for phonological disorders, apraxia and dysarthria to all occur together in the same child. Speech Language Impairments, which is connected to language based learning difficulties may also be present. And the severity of each may vary.
Apraxia is perhaps the most misunderstood of all the speech disorders. So, what is apraxia? Verbal Apraxia is a neurological motor speech impairment that involves a breakdown in the transmission of messages from the brain to the muscles in the jaw, cheeks, lips, tongue and palate that facilitate speech. There is no obvious weakness in these muscles and the child may well be able to move them quite happily when not trying to speak. Apraxic children, who are usually seen as “just late talkers” when young, are able to comprehend language at an age appropriate level, however have difficulty expressing themselves using speech. With apraxia, a child knows what he wants to say but there is a road block obstructing the signal from the brain to the mouth. For any child with a speech disorder, but especially with apraxia, the earlier therapy is begun, the better the results for your child and their social-emotional development.

Your Child’s Language Development

So how do you know when your child is having problems with speaking? When is a good time to seek out help? Being aware of average speech milestones can also help you decide whether or not to speak to your doctor. Some guidelines are provided here for your information, but if you have concerns about your child’s speech or language development, or any other developmental issue, make an appointment with your pediatrician so you can discuss these issues. While the average milestones are a good way to measure development, every child develops at their own pace, and this overview should not be used to diagnose a specific problem.

Adapted from Clinical Practice Guidelines Communication Disorders III 22-25

So how do you know when your child is having problems with speaking? When is a good time to seek out help? Being aware of average speech milestones can also help you decide whether or not to speak to your doctor. Some guidelines are provided here for your information, but if you have concerns about your child’s speech or language development, or any other developmental issue, make an appointment with your pediatrician so you can discuss these issues. While the average milestones are a good way to measure development, every child develops at their own pace, and this overview should not be used to diagnose a specific problem.

Typically seen in first 6 months
· Responds to name by looking for voice · Can regularly find speaker or source of sound · Cooing, gurgling, chuckling, laughing ·Imitates sounds and actions · Enjoys social games (peek-a-boo, pat-a-cake) · Babbling (bababa, mamama)

Cause for concern in first 6 months
· Cannot focus, easily over-stimulated · Seems unaware of sound, Cannot find source of sound · Seems unaware of people and objects in environment · Does not seem to understand or enjoy imitating · Lack of connection (eye contact, vocal turn-taking)
· No babbling, or babbling with few consonants

Typically seen in first 9-12 months
· Attracts attention by vocalizing · Waves bye · Vocalizations that sound like first words (mama,dada) · Clearly indicates desire for objects · Imitates new sounds and actions

Cause for concern in first 9-12 months
· Easily upset by sounds that would not upset others · Lack of response indicating comprehension of words · Lack of consistent patterns of babbling · Does not clearly indicate desire for objects

Typically seen in first 12-18 months
· Single word production begins · Requests objects: points, vocalizes, word approximations · Gets attention vocally or physically (mommy) · Knows adult can do things for them (wind up a toy) · Uses “ritual” words (bye, hi, please, thank-you)
Protests: Says no, shakes head, moves away etc) · Comments: Points and vocalizes or uses word approximations) · Acknowledges: Eye contact, vocal response, repetition of word

Cause for concern in first 12-18 months
· Lack of communicative gestures · Does not attempt to imitate or produce single words
· Does not persist in communication (may hold hand up for help, but gives up if adult does not respond immediately) · Limited comprehension (understands less than 50 words) · Limited vocabulary (speaks less than 10 words) · Lack of new words between the age of 12-18 months

Typically seen in first 18-24 months
· Uses mostly words to communicate · Begins to use two word combinations (more cookie etc) · By 24 months has more than 50 words, or word approximations

Cause for concern in first 18-24 months
· Relies on gestures to communicate · Limited vocabulary (speaks less than 50 words)
· Does not use any two word combinations · Limited consonant production · Mostly unintelligible speech · Regresses in language development: Stops talking, repeats phrases inappropriately

Typically seen in first 24-36 months
· Engages in short dialogues · Expresses emotions · Begins using language in imaginative ways · Begins providing descriptive details when speaking · Begins to use articles and word endings (a, the, ing,) uses plurals (cats)

Cause for concern in first 24-36 months
· Words limited to single syllable and no final consonants · Few or no multiword utterances · Does not demand a response from a listener · Asks no questions · Speech difficult to understand · Tantrums when frustrated · Echoing of speech without communicative intent

In addition, the policy statement from the neurology journal Neurology, (August, 2000), states that Absolute Indications for Immediate Evaluation include,
· No babbling or pointing or other gestures by twelve months
· No single words by sixteen months
· No two-word spontaneous phrases by twenty-four months
· Any loss of any language or social skills at any age.

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http://augustafreepress.com/2009/09/22/chris-dewald-aphasia-and-apraxia-the-same-but-different/

Chris DeWald | Aphasia and apraxia: The same, but different
September 22, 2009

Trying to decipher and also remembering the difference is close to knowing all the whos in Whoville. Yeah, I bet everyone remembers Cindy Lou Who. I have always thought that the speech therapist told me I had aphasia, but reviewing my notes the other day, I read “apraxia.” Gee Golly, what is the difference? I always used to say it’s a stroke thing. That covers it, huh? A little knowledge does not hurt, so here we go!

According to NIDCD, aphasia is a disorder that results from damage to portions of the brain that are responsible for language. For most people, these are areas on the left side (hemisphere) of the brain. Aphasia usually occurs suddenly, often as the result of a stroke or head injury, but it may also develop slowly, as in the case of a brain tumor, an infection, or dementia. The disorder impairs the expression and understanding of language as well as reading and writing. Aphasia may co-occur with speech disorders such as dysarthria or apraxia of speech, which also result from brain damage.

Symptoms

A person with aphasia may:

• Speak in short or incomplete sentences
• Speak in sentences that don’t make sense
• Speak unrecognizable words
• Not comprehend other people’s conversation
• Interpret figurative language literally
• Write sentences that don’t make sense

The severity and scope of the problems depend on the extent of damage and the area of the brain affected. Some people may comprehend what others say relatively well but struggle to find words to speak. Other people may speak more clearly than they can write.

Your doctor may refer to one of three broad categories of aphasia — nonfluent, fluent and global — that describes what region of the brain was damaged and how communication is usually affected.
The two primary language networks for most people are located in the brain’s left hemisphere.

Nonfluent aphasia. Damage to the language network near the left frontal area of the brain usually results in Broca aphasia. It’s also called nonfluent aphasia. People with this disorder struggle to get words out, speak in very short sentences and leave out words. A person might say, “Want food” or “Walk park today.” Although the sentences aren’t complete, a listener can usually decipher the meaning. A person with Broca aphasia may comprehend what other people say to some degree. They’re often aware of their own difficulty in communicating and may get frustrated with these limitations.

Fluent aphasia. Wernicke aphasia is the result of damage to the language network in the middle left side of the brain. It’s often called fluent aphasia. People with this form of aphasia may speak fluently in long, complex sentences that don’t make sense or include unrecognizable, incorrect or unnecessary words. They usually don’t comprehend spoken language well and often aren’t aware of their own difficulty communicating.

Global aphasia. Global aphasia results from extensive damage to the brain’s language networks. People with global aphasia have severe disabilities with expression and comprehension.

What is apraxia of speech?
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.

What are the types and causes of apraxia?
There are two main types of speech apraxia: acquired apraxia of speech and developmental apraxia of speech. Acquired apraxia of speech can affect a person at any age, although it most typically occurs in adults. It is caused by damage to the parts of the brain that are involved in speaking, and involves the loss or impairment of existing speech abilities. The disorder may result from a stroke, head injury, tumor, or other illness affecting the brain. Acquired apraxia of speech may occur together with muscle weakness affecting speech production (dysarthria) or language difficulties caused by damage to the nervous system (aphasia).

What are the symptoms?
People with either form of apraxia of speech may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of “prosody” — that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning.

Where can I find more information?
NIDCD maintains a directory of organizations that can answer questions and provide printed or electronic information on apraxia of speech. Please see the list of organizations at www.nidcd.nih.gov/directory.
Use the following keywords to help you search for organizations that are relevant to apraxia of speech:
· Apraxia
· Speech-language pathologists

For more information, additional addresses and phone numbers, or a printed list of organizations, contact:
NIDCD Information Clearinghouse
1 Communication Avenue
Bethesda, MD 20892-3456
Toll-free Voice: (800) 241-1044
Toll-free TTY: (800) 241-1055
Fax: (301) 770-8977
E-mail: nidcdinfo@nidcd.nih.gov

I have found the following sites very helpful. If you desire to see a keyboard example, please go here: www.aphasia.com.
There is also the Aphasia Hope Foundation to look at for video presentations: www.aphasiahope.org/media_resource.jsp?id=34.
The National Aphasia organization can be found here: www.aphasia.org/Aphasia%20Facts/aphasia_faq.html.

I have attached two video presentations if anyone has issues with reading:
- www.youtube.com/watch?v=Bk13HLma2CI
- www.youtube.com/watch?v=kaVLy_5WhTM&feature=related

My name is Dr. Renai Jonas. I am a Speech and Language Pathologist and have been practicing for the past 35 years. I provide therapy for children with a variety of diagnoses. My area of expertise is Childhood Apraxia, Autism, and children with neurological impairments. I currently teach at the local universities and present at conferences and workshops. I have published and I am presently writing a handbook for typically functioning children as well as special needs populations such as children with Apraxia and Cerebral Palsy.

Please fill in the information requested below. This information will be used to help children with Apraxia develop at a faster pace. It will also provide information to be included in a publication.

My caseload consists mostly of children with Apraxia from ages two years and up. I treat several older children (5 years and older) with Childhood Apraxia. The primary objective for these children is to produce intelligible words, phrases, sentences, and conversation. Here are the first fifty words that were targeted for a 6 year old with Apraxia.

>> Download the Questionnaire For Dr Jones

If you want to raise awareness about speech disorders here’s a press release you can share with your local media. Find out the name of the health and education correspondents. Call them up to outline the situation. Then send the press release to them. Call them again later to see if they need more information. Best of all make your family available to be interviewed to personalize the story. The first is a brief, which is good for TV or radio -just to snag attention. The PR release is more suitable for newspapers..but could be sent as a follow-up to TV.

Story Idea

They’re children without a voice—literally. They’re not able to speak at all while infants of the same age are talking like crazy, experimenting with new sounds and new word combinations all the time these kids are intelligent. They know what they want to say—but the words just won’t come out. It’s a frustrating and agonizing for them and their parents. Often parents are reassured by friends, relatives and even their pediatricians: “Don’t worry, he’s just a late talker.” But, for a dramatically increasing number of children that’s not true. Tens of thousands of American children don’t have a speech delay. They have a serious speech disorder. And if they don’t get intensive therapy at a very young age—they may never speak properly. It’s a problem that’s getting worse. In a 10-year period which saw a four-fold increase in autism, there was a staggering 30-fold increase in children with speech and language disorders. But it’s a problem that gets surprisingly little attention.

The non-profit group, Cherab, is now seeking to raise awareness with the public—and health professionals. Cherab president Lisa Geng is also co-author of a new book, “The Late Talker: What To Do If Your Child Isn’t Talking Yet.” Co-author Marilyn Agin, M.D., is a developmental pediatrician and medical director of early intervention for New York City .

Contact: Lisa Geng
E-mail: lisa@cherab.org

For Immediate Release
Non profit group speaks up for children who live in a world of silence

Billy is two years old—and he’s not uttered a word. His parents haven’t even heard him say “mama” or “dada.” Everyone—including their pediatrician—has told them not to worry because he’s “just a late talker.”

And quite often that’s sound advice. But for Billy and tens of thousands of infants like him it’s not that simple. A dramatically increasing number of children who don’t speak when they’re expected to speak don’t have a developmental delay but a serious neurological disorder that needs early and intensive treatment. US Department of Education statistics reveal a 30-fold rise in speech and language disorders, compared with a four-fold increase in autism. Yet it’s a problem that’s received surprisingly little attention.

Now a non-profit group called Cherab (Communication Help, Research, Education Base) is spearheading a campaign to bring greater awareness to these little known conditions. Cherab is providing a voice for kids who can’t speak up for themselves, children who live in a frustrating world of silence where they struggle to make their needs known. Says the group’s president, Lisa Geng, mother of a child with apraxia, a serious neurological speech disorder, “Children with speech disorders are often misdiagnosed as autistic or mentally retarded. They frequently do not get the therapy that they need. It’s a major uphill battle. If the proposed legislation becomes law, it will set us back thirty years.” Developmental pediatrician Marilyn Agin, medical director of New York ’s early intervention program agrees. Co-author with Geng of a new book called “The Later Talker: What To Do If Your Child Isn’t Talking Yet,” she says, “It is so important for children to be evaluated and treated at an early age. Adopting a wait and see approach can in some circumstances have devastating consequences.”

In their book Agin and Geng provide:

• A review of the developmental milestones and what to do if expectations are not met.
• An explanation of the various speech and language disorders, and recommendations on when and how to seek the right kind of professional evaluation.
• An exploration of the appropriate therapies a child should receive from speech-language pathologists (SLPs), and how to support their efforts.
• Exercises to do at home with a child.
• Tips for easing the inevitable frustration a late talking child experiences—as well as advice to parents on coping with their own frustrations.
• An explanation of parents’ rights and how to navigate the school system and insurance maze on the child’s behalf.
• Stories of other parents who have struggled with a child’s speech development problems.

(Above is a general press release. For parents who want to do something locally, insert at the end a personal quote…e.g. Philadelphia mother, Mary Smith, who has a xx year old child with a speech disorder, says, “You wouldn’t believe how hard it is to get the right kind of therapy. It’s a never-ending battle with the school system and the insurance company.” You could use this quote -or if you’re more adventurous add an entirely new quote. If you are mentioned in The Late Talker book, you could get media attention by mentioning the fact that you’re in the book. Anyone who is a member of the nonprofit Cherab group could get media attention by mentioning the fact that you’re a member.)