“Getting healthy nutrition into Sophie’s body that she was able to digest and utilize and that wouldn’t cause the dangerous and painful GI tract pseudo-obstruction issues was so desperately needed. Nutrition including NV Original  has taken my daughter to a whole new level of comfort- and happiness almost all the time for the first time in her 18 years of life. She is more clear headed than we’ve ever seen.” ~Jody Prunty

Sophie "Surfin" in 2012 during her Make A Wish trip!

At this writing Sophie Prunty is 18 years old. My husband Rick and I were not aware when our special child Sophie was born in 1993 the journey that would lie ahead.

Sophie is a funny, happy, beautiful, delightful young lady. Despite her “floppy-baby” diagnosis, she has become a strong-willed, always moving, curious teen. What comes easily to other children, like picking up a small object, is a great challenge for her. She uses a specialized wheelchair and uses a talker to communicate. Her Father and I, along with her health professionals have marveled at her progress despite the challenges she faces.  She adores animals, videos, music, playing on her computer, and kids. Due to health issues she is home tutored. She can dazzle you with her charms. Sophie loves life! Since an early age Sophie has been in a wheelchair. Trunk strength was always an issue, and with no fear of falling due to her lack of feeling peripheral pain, she never did learn to walk. We do believe it may be possible however for her to learn still as she has the patterning down and can do it with a specialized walker, but that is done only infrequently. Sophie has a huge stander at home; however she has pretty severe scoliosis and lordosis, and is not a candidate for surgery unfortunately due to her liver issues. She doesn’t do much floor time anymore, preferring to be in her wheelchair; probably due to the scoliosis and the gut surgery she had a few years ago.

Outside of being born with club feet, it was clear something was wrong early on with our precious daughter. She did learn to scoot on her bottom around the age of two. Finally after years of numerous tests, a one month stay in the hospital, and a trip from our home in Illinois to the Mayo Clinic in Rochester, Minnesota to see the experts Sophie was diagnosed with an extremely rare disorder called Hereditary Motor-Sensory Neuropathy Type II (now called HSAN type 2, non-CMT.) Sophie’s prognosis is unknown and there is little written about life expectancy.

Sophie in 1995 -she used to "scootch" around

The “orphan disease” that Sophie was diagnosed with has been approximated to occur in one in one and a half million cases in North America, though this statistic is not fully valid. Sophie displays global delays including large and fine motor skill delays, as well as delays in speech and language. One of the unique symptoms of this disorder is that Sophie lacks peripheral feelings. What that means is that she is oblivious to pain caused to her body from the outside. If Sophie cuts herself, or pokes her eye, she has no pain. This is both a blessing and a curse. Without peripheral pain she can do damage to herself easily, and pain can also be a great teacher. Prevention of injury and infection are high priorities. This is not to say that Sophie doesn’t feel any pain. Sophie spent much of her 18 years of life in life threatening pain from impairments to her GI tract.

For a sneak peek at our past we have a very old website www.oneinamillionkid.com which documents Sophie up till she is around 6 years old.

From Mom Jody “My Daughter Sophie”

“Sophie is very complicated medically, so there is a lot of information to share- and I don’t know how detailed I should go! But I hope to share enough information to help others who are in the same situation as us!

Sophie had many hospital stays. One special time we’ll always remember was in 1998 when the doctor’s saved my daughter’s life by placing a tube in her cecum (large intestine) and a Gastrointestinal tube. As of this writing April 26, 2012, we are just finally and hesitantly hopeful that her GI tract pseudo-obstruction issues, which have sent her back to the hospital far too many times, are behind us. This is due in part to getting the correct nutrition that her body can utilize which I’ll explain more about.

Since she was three years old, Sophie has received the bulk of her nutrition from a central line that goes directly to her heart. The problem is that over time, this nutrition can attack the organs of the body. Sadly, due to this line which saved my daughter’s life, Sophie is in the first stages of liver failure.

Sophie in 2003 went through so much medically

Sophie’s GI tract has never worked well. A number of years ago, we were constantly “flushing” her stomach due to the over production of mucus. At that time, her g-tube in her stomach was always attached to a drainage bag. She could drink electrolyte fluids, but much of it went into the drainage bag; her intestinal tract was not really working.

It’s said that the GI tract is a reflection of your health, and this was true for Sophie. Her blood work showed many vitamin and mineral deficiencies that we struggled to adjust from her IV food. When her spleen enlarged, her platelets and white blood counts went down to critical, and her liver numbers soared we knew that she was coming into liver failure.

My precious sweet daughter had a huge gut surgery in 2007 in which they cut all the way across her mid-section. Poor thing…all that muscle.  The surgery had to be done however to save Sophie’s life once again. The surgeons re-routed the blood flow from the spleen to the liver to now be from the spleen to the kidneys.

The surgery was a success in that Sophie’s spleen shrank down, her liver numbers got a little better, however Sophie still wasn’t out of the woods, her platelets and white counts continued to stay in the critical category. She was diagnosed as having mitochondrial issues in 2010.

Just prior to this event we found MucoStop. Enzymedica® (an enzyme that “eats” mucus) and worked to get it into her system. With the decrease in mucus, her stomach was able to empty again and her GI tract began to work better; we were able to tie off her g-tube again. With her gut working better, we were more willing to try a few additional supplements to help her. The doctors prescribed medical-grade Ubiquinol (CoQ10) to help her mitochondrial issues. (Cyto-Q by Solace Nutrition)  Sophie also has seizures that have been mostly controlled by medication, and for most of her life, Sophie has had sleep problems as well.

We’ve spent almost two decades now searching for solutions with Sophie’s doctors. Sophie is currently followed closely by a number of doctors including a Pediatric Neurologist, a Pediatric Gastroenterologist, and a specialized Pediatrician. Sophie has received Physical, Occupational, and Speech Therapies weekly pretty much her entire life.  Nurses help us most nights and weekly in the morning hours with many of her medical needs. This is incredibly helpful as Sophie typically doesn’t sleep through the night, and her medical needs are extensive.  Sophie suffered for too many years of her precious life- we cherished the few days/hours when she was not in pain in her gut area, and the strength she had to get through those times!

We knew it was important for us to find people/professionals to understand that she might not feel pain externally, but internally she was in excruciating pain. I just knew in my heart that if I kept searching I’d find things that would help her, and professionals that “got it”, as well as other families that lived a similar, crazy life.

Sophie on her computer in 2005

I also knew because of her complete dependence upon her central line for her nutrition, that Sophie is lacking in vital nutrients that would help her on a number of levels.

But feeding Sophie wasn’t easy, and could even be dangerous for her. Every attempt to give her “regular food” ended in an episode of pseudo-bowel obstruction: a very painful, life-threatening, guaranteed hospital stay experience. It was a horror to watch my child go through this, and due to this it’s understandable that I am very slow to accept or try new foods. I research everything extensively and run by all Sophie’s medical doctors before even attempting anything new.

During this time, we finally were able to connect with some families who have children with HSANs, or some disorder that is similar. All these people display differently and are slightly different in their diagnosis. Through this group we met Lisa Geng and her lovely family, mostly through cyber-space. Lisa connected me with her Cherab FB group and introduced us to the effective use of fish oils (which we were already using) and spoke to me about a food product called Nutriiveda (NV) Original which I thought looked interesting, but really didn’t know if this was something that would help my Sophie.

A short time later Sophie’s night nurse sent a request to Make A Wish. Sophie’s doctor filled out a form for qualifying. You only can get wishes filled until the age of 18, which we didn’t know about. We were so happy to receive the phone call that Sophie was accepted to have a wish. They even provided us with contacts that helped us thru the process. (There were very few forms to fill out thankfully- I’m so sick of forms!) If it’s a Disney wish they have a direct line to getting it done quickly. Ours was done in about 4 months since we needed the cooler, winter months of Florida for Sophie. Give Kids the World is an amazing place that they suggested we stay at since Sophie has fragile health- and it was perfect for us!

Lisa Geng lives in Florida, and it was 6 months after I first learned about Nutriiveda Original and our trip to Florida with Make A Wish for Sophie to Give Kids The World, that I met up with Lisa and her family who brought me a canister of chocolate NV original to try.

Me (left) with Lisa Geng at Give The Kids The World Through Make A Wish

January 23, 2012, after starting the NV, our lives changed…

This was the first day we officially started Sophie on Original Chocolate Nutriiveda, by giving Sophie about 1/8 of a scoop. As it was such a low dosage however since she was supposed to be on four scoops for her age, I wasn’t sure if we would note any progress, but at this point I just wanted to make sure Sophie’s body tolerated it. Sophie tolerated the small amount of Nutriiveda Original with no effects, which to me was HUGE. With great caution, and with supervision of Sophie’s medical team, over the month we very, very slowly upped the amount to 1/2, to 1 and then 2 scoops.

During this time we did see Sophie being more “verbal”, and her stomach emptying better. But during this time she was producing a lot of gas (which she already has issues with,) and that did make us and her caregivers a bit nervous, however she continued to have bowel sounds which was a relief. The reason bowel sounds were important and was because in the past, by now, Sophie would be in lots of discomfort and her intestines would be quiet. We noticed she was happier and at first we thought it was from the trip to Disney through Make a Wish, as she did have so much fun. But as time went on she continued to be happy all the time. Prior, Sophie would start showing signs of pseudo-bowel obstruction, we were thrilled that wasn’t happening and thrilled that Sophie seemed so happy! We decided to switch to the Vanilla flavor, as my lurking on the website seemed to show even though both were made up of similar food ingredients, it may be milder for some folks.

Sophie and mom meeting Chip and Dale

March-
We continued to very slowly up the amounts of NV Original from 2 scoops a day to 2 1/2 scoops to 3 scoops which we split into three servings a day. We tried to spread it out because we didn’t want to tax her stomach too much, or do the boluses too close together. Sophie seemed much clearer-headed. It’s difficult to describe all the changes, but her home tutors were noticing that Sophie was no longer trying to fall asleep during her two hours of lessons a day (she is taught around 3-5pm daily.) They also noted that Sophie was communicating better with her talker. Instead of always just hitting one word on the talker over and over she was suddenly willing to give you more information.

Fortunately in March, Chicagoland was experiencing some unseasonably nice weather, so we met up with some other special needs kids and their moms at an Arboretum. I wish I had had a camera handy as my friends- the Moms who have lived this journey with me, watched in shock as they saw how much I was putting into Sophie’s stomach at one time. As we did it gradually it became normal for me. But, stepping back when others pointed it out, I too was astonished at how far she had come.

Sophie has a cecostomy, which is similar to a colostomy, only the hole is at a different point in her colon. She has always had “to drain” for her BMs, though her body can eliminate like “normal” people she never did produce anything that looked like a normal bowel movement.

The cecostomy was placed to help lessen the burden on her lower GI tract and to be a point of deflation if things got backed up/ too full of gas which would put her into the dreaded, life threatening and severely painful pseudo-bowel obstruction. But that was all before she was on NV Original.

Due to almost constant gut pain for almost her entire life, Sophie always had pretty hellish nights. After a few weeks on NV original we started getting some nights that weren’t so bad, at least for part of the night. Even though she was still waking late morning to midday, she was for the first time waking with a smile on her face most “mornings.” Her demeanor was much more tolerant, even in the evenings when she gets sort of nutty.

Also around this time Sophie appeared to be stronger when doing therapy. We are looking at transitioning to a new therapy place, so she is getting double the therapy she would have had before. In the past this would have and should have tired her out, but instead she is improving. Sophie now had her stamina to stand!

One of the many downsides of being dependent on central line food are the shortages that come up in the ingredients/additives of the medicinal foods and supplements she had to survive on most of her life. This isn’t a big deal if one could consume and absorb at least some foods , but it can be life-threatening for people completely dependent like my daughter Sophie. The timing has been almost perfect for us to be able to get some additional, more healthful nutrients into her system while there are shortages in multi-vitamins and minerals and selenium. With fingers crossed, we are hopeful that her gut is absorbing and utilizing the NV to keep her at optimal health.

In the past Sophie who has few verbal words and communicated mainly through her “talker” was what we called a “one word wonder” For example if she wanted to watch a particular video she would select on her talker the word “video” with some pointing. Then with me asking for more information will reluctantly give more and may say “Kidsongs” (of which she has both DVD and VHS and about 20 of them.) More questions, yes/no, asking for color of box…all time consuming and she has to work hard both motorically and mentally to find on her talker.

Sohpie and her teacher

But after a few weeks on NV original shockingly she said this with her talker: “DVD Disney Ant Bug” We were shocked! We still however didn’t know what she wanted. Sophie is not a fan of It’s a Bug’s Life, so I couldn’t interpret that. I kept repeating the words as I looked at her DVDs, but I truly didn’t know what she was asking for even though I wanted to reward her for her great talking! While I was going thru the numerous Disney DVDs we have I hear Sophie say “Sing Along Songs”…Holy crap! She wanted the Sing Along Songs Flik’s Musical Adventure in Animal Kingdom! She hadn’t asked for this DVD in eons. It wasn’t just her speech I was proud of, I was also so proud of her persistence! Usually, if I can’t get it really quickly, she just gives up and selects something else. These are the times you wish you had a video camera on to document this good stuff! And we do plan on capturing more and more to share on this page!

Sophie (center) with mom Jody and dad Rick -and Kermit

I also want to update about bruising: Sophie gets shots in her thighs every night. In the past she’s always had lots of bruises due to her low platelets. We’ve noticed in the last 2 weeks (beginning/mid April 2012) that the bruises are fewer. The skin beneath is not as hardened. Hmm…blood work shows platelets at 26/27- still very, very low, but not as low as she has been in the past (in the teens.) Sophie’s labs have almost always lagged behind in her symptoms. I’m actually looking forward to her labs these days (as I’m writing this in May) to see if there are changes.

End of April 2012-

We are now on 4 scoops a day of NV Original (by g-tube), split up between the wee hours of the morning, early morning, midday and mid-afternoon, the late afternoon to night. We leave time for her GI tract to digest and empty, so it’s less taxing on her gut.  We keep playing with timing and her hydration needs, as we did experience what looked like constipation- though she hasn’t struggled with it,

Her bowels are making sounds, and the waste is by-passing her cecostomy. She’s having what looks like normal bowel movements for the first time in her life! We’ve gone to flushing the cecostomy 3 times a day with saline water, just to be sure that things are moving along. Her gut is not in any distress- this is so new to us that we caregivers are kind of freaking out! (pinch us!)

Her OT and PT are noticing that she has increased strength and stamina, even more than a few weeks ago. All good things and it keeps improving!

Having read about others having successful, easy nights I was so hoping to see this happening. It is still early in evaluating this, I am hopefully optimistic and thrilled to share that we have had multiple nights in a row with Sophie having what we describe as “good” nights. Very exciting for us all! It makes us happy to see Sophie happy and not in pain, sleeping well, we hope that this will continue. One of the other “good things” that I’ve

observed is that her energy levels are better and she is able to stand with her therapists longer and do more repetitions! After seeing her sit for so much of her life this is incredible to see!

Sophie and her mom Jody

Getting healthy nutrition into Sophie’s body that she was able to digest and utilize and that wouldn’t cause the dangerous and painful GI tract pseudo-obstruction issues was so desperately needed. Nutrition including NV Original  has taken my daughter to a whole new level of comfort- and happiness almost all the time for the first time in her 18 years of life. She is more clear headed than we’ve ever seen.

In addition to Sophie enjoying life for the first time, my husband and I, as well as her nurses and doctors and therapists are all enjoying this new part to her life! Her GI doc is simply amazed. I’m hopeful that we will see differences in her bloodwork for even more evidence of what is working for her.

And again the best part?  

“She continues to be happy.  As a mom, what more could you want for your child? So far, it’s been a wonderful journey!” ~Jody Prunty

Nutrition A Paradigm Shift In The Treatment Of Chromosomal Disorders?

What is Nutriiveda (NV) Original?

ProAlgen, a vegetarian form of EPA and DHA

Introducing Nordic Naturals’ NEW ProAlgen, An Algae Based Omega 3 100% Vegetarian Source Rich In Both DHA and EPA

100% vegetarian source of omega-3s EPA and DHA

Unique formulation provides significant amounts of
both EPA and DHA

Made from microalgae, nature’s original source of marine   omega-3

Supports normal vision, heart health, positive mood,    immunity, and the body’s natural anti-inflammatory response*

Absolutely no unpleasant smell, taste or aftertaste

Great lemon taste

Nordic Naturals ProAlgen^(R) is the ideal vegetarian alternative to fish oil. Made from microalgae, it offers a plant-based source of beneficial marine omega-3s EPA and DHA without the use of fish. While most algae oils are short on EPA, ProAlgen’s unique combination of EPA and DHA is a pure, safe, and effective source of both of these essential fatty acids.

“Taste test…virtually no smell.  The slightest scent of lemon.  I’ve had my family taste it.  No taste, no after taste.  I’m convinced based on my own picky teens who has no idea they ate algae that you can mix this in anything and a child wouldn’t know there was something healthy hiding in there!”

Once you open the bottle store it in the refrigerator.   As it’s higher in DHA than EPA and with no GLA -this is not the formula of Omega 3s we have found best in the group over the years -however if your child is also on NV Original you’ll easily be getting in the healthy essential fats from an incredible source!  And because this is a brand new formula from a unique source that most have not tried -it could in theory even be superior.

“It’s for sure worth exploring and I give ProAlgen TWO thumbs up!”

Not many carry ProAlgen as of yet as it’s so new -please see the supplement facts and more info at Speech411  Capsules will be coming out shortly -but again the liquid is super easy to hide in virtually any food or drink.  I wouldn’t put it into anything that is boiling or steaming hot however as that could compromise the algae’s nutrients.  As I shared in our Facebook group at Apraxia.org

“I actually got this weeks ago -but knew I’d have to try it and get my family to try it…I wasn’t looking forward to trying to get my teen boys to try algae…but I was shocked.  It honestly has virtually no smell (slightest lemon smell) and really no taste even if taken off a spoon -and if one minded the lemon or the fact it’s an oil (for sensory reasons) mixed into anything at all you wouldn’t taste it or know it’s there -it’s incredible and shocking.”

Learn More About Essential Fatty Acids Including How To Serve, Professional Anecdotal Reports On Fish Oil’s Therapeutic Use For Communication Impairments Such As Autism and Apraxia here.

I’ve been wanting to give Vincent Fish oils for the longest time now since he’s been on NV Original.  We had not been able to get any fish oils into Vincent and we just tried ProAlgen which is an algae Omega 3 formula that is supposed to have no smell or taste.

Sorry for all the laughing in the video but we knew we were hiding the algae in his drink and we thought we knew what was coming -that he wouldn’t drink it. Unfortunately, I have a collection of bottles of all kid friendly & other types of fish oils in my cabinet that he will just not take.

1. He does not swallow capsules &

2. He has bionic taste buds & detects it in everything I try to put it in. So then I am also wasting food as well!

IT WORKED!!!  

Also, at the end of the video you can hear Lily say “Turn Off” as she is pointing to the video camera! She has never said that before!

Suggested use: 1.5 ml (At that dosage a 2 month supply) with food, or as directed by your health care professional or pharmacist.

From speech411.com

Free Of: Gluten, milk derivatives, artificial colors and flavors.

From Fish Oil to Microalgae Oil … A Win-Win Shift for Humans and Our Habitat

* These statements have not been evaluated by the Food and Drug Administration.
This product is not intended to diagnose, treat, cure, or prevent any disease.

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

Jilly is a happy baby

I have one child that was diagnosed with autism and one child that was diagnosed with apraxia or dyspraxia.  I’m going to share the secret to our success!

Jillian is my younger child and is currently 3 and a half years old with a diagnosis of apraxia or dyspraxia and she has been in therapy through Early Intervention since she was 18 months old.

Jillian’s was an easy, full term pregnancy, that I just knew she would be a perfect baby.  We welcomed her into the world on August 23, 2008.  The only set back during labor was that Jilly’s heart rate dropped and I was put on oxygen and her heart rate immediately pick up again and there were no problem thereafter.

Her developmental milestones occurred within normal limits, well all EXCEPT when I began to notice the same speech delays as I did with my older son  Kaden who was diagnosed with autism…..  It was different with Jilly though.  She was so outgoing and friendly and she seemed to understand everything we were saying to her, yet there were no words coming out of her beautiful little mouth, except “da da”.

Jilly has apraxia and her big brother Kaden has autism

Of course we had to wait until the 18th month dr. appointment to confirm our fears that she did in fact have a speech delay and the pediatrician referred us to early intervention.  Jilly received therapy through therapist through our states early intervention and our local college.  The early intervention agency diagnosed her with delayed speech but once she did begin to speak something about the way she spoke was different.

At the time I had become friends with a local mom whose son was diagnosed with what was called “Apraxia”.  I had never heard of it.  The more she spoke of it the more and more it sounded so much like what Jillian sounded like.  Of course I was in denial though.  I didn’t want to believe that I had another child with this horrible condition that could be lifelong!

Jilly was diagnosed with apraxia and dyspraxia by an SLP and a neurologist

Once I got over all of that I decided to get Jilly evaluated and looked at by a neurologist and the local Speech Pathologists in the area that are qualified in the field of Apraxia.  Well low and behold she was diagnosed with Apraxia but also Dyspraxia by the Pediatric Neurologist.  As I understood though the two were used interchangeably so it didn’t make much of a difference to me.

Below is a video of my daughter Jilly after she had been in speech therapy for over one and a half years with frustratingly slow limited progress in speech.

Before NV Original

Once I got that diagnosis I began to do my research.  There had to be more than just therapy out there.  Just like with Autism.  I had been researching for him trying different supplements, diets, detox’s.  There had to be something, SOMETHING for this Apraxia!!

Jillian LOVES her NV "pudding"!

Then I came upon this Yahoo group that kept mentioning these two letters “NV”.  All they could say were these riveting wonderful things that were happening with their children while on the “NV”.  I had to know what this NV was!  That is what led us here to where we are on our road to healing at least for Jilly.

Below is a video of Jilly after a few months on NV on just one scoop a day

After NV Original March 15, 2012

UPDATE April 5, 2012

Jilly surge update! 9 word phrase! It’s of course usually her father or brother that brings the most speech out of her. Her daddy ticked her off last night when he restarted the TV and satellite ( heaven forbid) and she said “what happened?”. Mike said ” restarted the TV” Jilly said ” Daddy why did you do that to the TV??!!”  She has also started tracing which she was not able to do before!

Jilly’s big brother Kaden has been diagnosed with autism.  Because of Jilly’s progress we decided to start Kaden on NV as well these past few weeks. We are gradually increasing him up to 2 scoops of Nutriiveda Original after we just weaned him off some of his meds.

Kaden eating his NV "pudding"!

Since being on NV these past few weeks…

He has finally learned to subtract within the past couple weeks on NV original when before it had taken him months to try to attain that skill.

He completed all of his recent OT goals!

Kaden’s OT Skills Before NV

Before NV Kaden's OT work

Kaden’s OT Goals Met After a Few Weeks On NV

Within weeks on NV Kaden has met all his recent OT goals

 He also just recently just scored 25 AR points in reading!

Kaden just recently just scored 25 AR points in reading!

He is also more out going.  I really could have kicked myself in the rear the other day when I did not have my phone nor camera on me.  He was outside playing SOCCER with a typical boy from our neighborhood and actually learning real soccer moves.  I was standing there crying like a big baby lol.  Of course Jilly was right in the middle driving her big brother nuts!

Kaden Before and After NV Original Videos

Kaden Age 3 and 5 Before NV Original

“Kaden’s first speech emerged as echolalia. That was when I really began to take notice of the differences in my child and that of other children. The signs of his differences where the fact that he was sooo tiny. When he was five his speech began to get better but other signs began to show up. He was the size of a 3 year old and I always had to teach him how to play with his new toys. When the doctors where not only denying him of an autism diagnosis they were also denying him of any other diagnosis one of which he has now thankfully which is growth hormone deficiency. We had Kaden tested when he was 7 and he did test positive. He is just now beginning to catch up to size 7 clothes!! He has always been 2 to 3 year behind in growth and all other areas.” ~Kelly

Kaden’s only been on NV a few weeks- here’s a video of him from 3.24.2012 where you can see his progress in spelling!

“Another success reached! Just this year his Sped teacher and aids have been working diligently with him to get him to spell certain 3 letter words. I too have been working with him as well at home. He has been successful with quite a few with practice and study. Today March 24, 2012, while practicing his spelling I thought to myself “hmmm he has been surprising me so much lately I wonder I could just try him on a few simple four letter words on the Ipad”. BAM!!! He did 4 without any practice or anything!!!I’m so proud of him!!!” ~Kelly

Background for Kaden Before NV Original

Kaden was our first son and came into this world a beautiful pink, healthy color weighing 6.3 lbs. Yes, very little and looking just like his father. We loved him to pieces.

Big brother Kaden with his little sister Jillian

We began noticing some differences in Kaden when he was around 18 months old, because he was not speaking.

I, being a young mother just thought he would eventually grow to speak and was told so by his pediatrician at the time who told me that he did not begin speaking until he himself was 3 years old. Well there you go I thought. A doctor, one the best pediatricians around didn’t begin to speak until he was 3. So I put it to the back of my mind even when the kid med office referred us to the early intervention agency. He was only approved for speech and only for 2 times a month. So there couldn’t really be anything wrong with him.

Kaden sometimes looked like any other child

Still though this sweet, gorgeous, typical looking child of mine did these strange things I began to notice. He would only play with certain toys and never ever in the correct way. Don’t get me wrong, I know not every child is perfect, but don’t children around two usually catch on to such things.

Then he began to just play with certain parts of the toys, like just the wheels on cars or just strings on pull toys. He also never wanted to interact with any other children unless they would go up to him and make a strange loud noise that he thought was funny. Those times were the only times I would feel a piece of calm wash over me and think oh of course he’s fine.

Kaden was diagnosed with autism

I brought him to doctors and they would tell me “he’s fine you’re looking for things that he’s not expected to know yet”. My parents always had the feelings that I deep down knew about him but never had that professional “TELL me”. So I just went along with what the doctors and teachers said until one day…

FINALY, when Kaden was 6 years old we met with a wonderful nurse practitioner that said Ms. Lacy; I really believe your son is on the autism spectrum. I apologize if this comes as a shock to you, but I doubt that it does. I just really needed to tell you.

I wanted to jump up and hug her… I still do for that. She saved Kaden. Of course Kaden had always had speech therapy and Occupational therapy and had the dx of learning delayed but he never had that professional come forth and say something. That was the day that put us on the path to learning how to put Kaden’s pieces together.

Kaden is extremely special. He’s a query I think so many teachers and doctors had a problem with his diagnosis because he is so outgoing and friendly. When Kaden was younger, during his toddler years he was very shy and did not want to be bothered by other children but once he turned 5 I found a great social group and that broke him of that. He loves playing with and meeting other kids. He does have a temper and times and can be a handful but at the end of the day you just want to hug and cuddle him so much its ridiculous!

I'm happy with the progress Kaden has made on NV so far!

UPDATE 3.30.2012

Kaden placed 2nd in a race!

Kelly wrote, “My big boy placed second in his race today!!  Should have seen the kids he was up against too ! He was half their height,but still placed 2nd place out of the 5 and and another one ran too that wasn’t even in that race lol.  I believe this is another surge because his teacher said  ”Kaden  even has the correct form down. He keeps his upper body strait and just runs moves his legs and arms” I asked her oh you taught him that and she reply no he just automatically does it. IM putting him in track!!  He got 6.30 seconds in the 25 meter! So so proud!”

UPDATE March 31, 2012

SURGE in confidence!

We have been places where we have asked Kaden if he would want to try a rock wall and we have always gotten a no or he would dart the other way towards a bouncy house or something and if you would try to talk him into it and melt down would occur. He asked to do the rock wall this time and this one was high! I would not have been able to do this thing lol. Sad but true. The only thing that stopped him was when he started to get to where his legs were getting shaky and he wasn’t sure where to put his foot.

Definite surge. He’s turning into a real athlete!  Also if you notice his upper body strength seems to be proportionate to his lower body. He has been struggling with that for years. He normally has very low upper body awareness to where now I have now really noticed that problem as much with him.

Mom Kelly and her children Kaden and Jillian

If you want to congratulate Kelly on the success of her children Kaden and Jillian please leave a comment below!

Original NV is in preclinical research;Learn more

Apraxia Road to Recovery, Before and After Videos

Nutritional Therapy for Autism Real Time Results

Speech Disorder Road to Recovery, Before and After Videos

Is Nutriiveda Creating a Paradigm Shift in Treatment of Speech Impairments?

Apraxia Blog Documents One Mom’s Journey

Is Nutrition Solving The Autism Puzzle?

Nutrition A Paradigm Shift In The Treatment Of Chromosomal Disorders?

New member what to do for a child that isn’t talking or talking well yet. Apraxia, autism, delay?

The Late Talker book by Lisa Geng, Malcolm Nicholl  and Dr. Agin

Tanner Geng’s The Lellow Breakthrough; Info about fish oils from Dr. Stordy’s book The LCP Solution

Topic: insurance and speech therapy

Research: Reason to delay kindergarten

Alternative and Complimentary Therapies For Apraxia, Autism, and Other Special Needs

SO many examples of why pet/animal assisted therapy is key

Oral Motor Dysfunction and Therapy

Dealing with IEPs for a Speech Impaired Child

IEP Goals, Objectives, and Sample Letters to Teachers

The Pediatrician’s Role in Development and Implementation of an Individual
Education Plan (IEP) and/or an Individual Family Service Plan (IFSP)

Sign Language As Communication And A Way To Reduce Frustration For Speech Impaired

Signed story videos for ‘beginning communicators

Curriculum Resources and Multisensory Approaches for Helping Those With Communication Impairments In Education (focus on reading)

How to Prevent, Deal With Teasing or Bullying of a Speech Impaired Child/Circle of Friends

Info about fish oils including professional anecdotal study, how to serve, which formula has been found best in our group and more!

Info about a vegetarian source of EPA and DHA Omega-3 from algae – ProAlgen

Info about NV original (Nutriiveda original)

My child is a late talker and not potty trained yet -HELP!

Constipation Information and Strategies

ID Bracelets, Tattoos, Charms and Other Ideas To Protect Your Essentially Nonverbal (Autistic, Apraxic etc) Child If They Get Lost

Letters to your child’s new teacher (for apraxia/autism/etc)

Gift Ideas for Teachers, Therapists, Bus Drivers for Holidays or End of Year

Pharma Omega Speak Vitamin E Supplement: Warnings/Reported Side Effects and Risks:  Please Read And Share …“elevated heart beat, fever, possible seizures, headaches, emotional outbursts and regressions in speech and behaviors.” ~possible side effects of speak™.”

IPad is a miracle for autism, apraxia and other communication problems

Some tips for picky eaters

CARNITINE DEFICIENCY testing for autism and apraxia

METHYLCOBALAMIN (“B12″) INJECTION INSTRUCTIONS (from our private group)

“I grew up with apraxia” Reflections From Teens and Young Adults

Teacher, You Should Hear Me Read

Just call it apraxia (or dyspraxia) not ‘Developmental’ or ‘CAS or Childhood’ Apraxia of Speech

“One of the hardest things in life is having words in your heart that you can’t utter.”

- A surprising quote from James Earl Jones, one of the iconic voices of our time. James Earl Jones stuttered as a child and took acting lessons to help, but as he says, he will always be a stutterer.

Best SLP blogs from A to Z

Plain Talk about PDD and the Diagnosis of Autism by Bernard Rimland, Ph.D.

Something Smells Fishy! Tips For Toddlers Taking Fish Oils

Great archive from 2004 about Epsom Salt Baths for therapeutic use and detox from MaryW

Support Groups And Contacts

Christmas

“I know that nutritionally something was missing.   Luke’s diagnosis is apraxia of speech, dyspraxia of motor movement, sensory processing disorder, hyperkinesis and congenital anomaly.  He is 3 and a half years old and has been in intensive therapy since 18 months old.” ~ Mary,  Luke’s mom

From Mommy Square ”My Life as Mother and Wife  Documenting the story about our journey with apraxia of speech and all the other important things in life”   (Shared with permission)

Luke who has apraxia

Luke's sister Maggie

“I am a mommy to 2, Luke and Maggie. I decided to create a blog to share moments from my life with others. I also wanted a way to preserve memories without scrapbooking!” ~Mary

Written by Mary in 2010 prior to NV original

“I have been praying that I would find a way to fund all of these therapies that Luke needs in order to be able to speak.   …we need to raise $3,000. (the cost of extra therapy until spring)”

Written by Mary in 2011 prior to NV original

“Yes, we are making progress…baby steps, but as soon as we take one forward~it seems like we take 3 more backwards. ”

Written by Mary in 2012 prior to NV original

“… we have done everything under the sun. Intensive therapies, speech since 18 months of age (he is 3 and a half) Been to Michigan to see Nancy Kaufman 4 times in the last year, we did also go to the Star Center in Colorado to see Lucy Jane Miller’s team. We pan to do more intensives with Nancy at the KCC in the spring, Lynn C. of speech ez apps in Arizona and apraxia camp in DC this summer, have done chiropractic, craniosacral therapy, healer, everything besides tying chicken bones around his neck.”

Luke’s video before NV original from October 31st 2011

A sign that Luke will clearly not need next Halloween…even if Halloween was tomorrow!!

A sign that Luke brought trick or treating October 31st 2011

Luke after 2 weeks on NV Original March 3rd 2012

The Journey of Luke as described by his mom Mary in her blog (with sister Maggie and dad Brad)

Mary and her children Maggie and Luke, Christmas 2010

Mary’s description of herself from 2011

“I am sure there are lots of adjectives out there in which to describe me.  

I am a…Mother. Wife. Daughter. Sister. Aunt. Friend. Neighbor. Advocate. Educator. Part time SLP, OT and PT  (not really, but someone should give me a degree for the amount of hours I log in weekly doing therapy) Drama Queen. Party Planner. Grant Writer. Fund Raiser. a Giver. Outspoken. and also a Rottweiler~especially when it comes to my family.  I am… Loving.  Caring.  and Tender Hearted.  I have been called concrete-a-la-tete’ (cajun french for hard headed)~
I like to see both sides of an issue, though. I am a perfectionist.  I don’t like to meet standards, I strive to exceed them.
I am pretty organized.  I am a pathological picture taker. I facebook and I blog.  I am also a parent at my whit’s end!  Frustrated, honestly doesn’t seem to do my feelings justice.

  I am beyond frustrated.  I am truly done with all of this.   I loathe the health care system.  I can’t stand health insurance companies, especially mine~United Health Care. I should not have to beg, fight, plead, cry, beg again, and cry some more for the help that my child needs.  This isn’t a want, it is a need!    Every waking and slumbering moment of my life should not be filled with worry.

This is my child’s future, my son’s life and I will not be silenced.  I will not SHUT UP!I will speak for him until he can speak for himself.  I will always stand up for what I believe in, especially injustice!I will not apologize for my opinions or my beliefs.  Never have, never will.  And you can take that however you want to take it~it is the truth. “

Luke having a therapeutic riding session through Jacob's Ladder

Mary explains on her blog the various therapies and programs that she and her husband have taken Luke to in hopes of finding his voice.  The Kaufman speech center in Michigan she took him to a number of times, and in addition to various speech and occupational therapies, explored some complimentary therapies as well such as therapeutic riding therapy through Jacob’s Ladder.  Mary and Luke even flew out to Colorado by themselves to explore therapy at the Star Center.

“We went all the way to Michigan to get a diagnosis and devise a plan of action~and were told that he could be taught to speak…if we used the correct methods and the intensity that is needed~he could talk!  I just can’t stop now… I mean, how can I explain to Luke that I tried to help him, but didn’t do everything in my power to achieve it.  We keep saying that we need more therapy and keep begging for it, but nothing has really come through, especially not Babies Can’t Wait (which is ultimately because of cutbacks from the state” ~written by Mary prior to NV Original

All the therapy showed progress in Luke!  Sometime in October of 2011 Luke learned how to say “nobody” perfectly!   He also knew how to say “no” perfectly too!   That’s what sometimes happens with apraxia that a few words that are in their “motor memory” may come out perfectly, and they will choose to use those words whenever possible.  However each word is a mission and a quest, and as you’ll note in the following videos do not come easily to one with apraxia.  Even with all the years of various therapies, apraxia is historically a long, tough, frustrating, and many times expensive road.

Here is Luke October 31st 2011 right before he went trick or treating to give you an idea of how his speech is at this time.   As you will read below this is after various intensive therapies from before 2 years old.

And here is Luke practicing knocking on a door to say trick or treat October 31 2011

From November 27th 2011, about 3 months ago,  Luke is still using sign language to communicate with his speech.  Here he is saying he is hungry

“I know that nutritionally something was missing. My dad is a HUGE researcher and health enthusiast. He couldn’t get over the nutritional value in NV original. He has gotten Luke to take the supplements, when my mother and I couldn’t.”

The following is when Luke started Nutriiveda Original from mid February 2012 from Mary’s blog

Whatever it takes….

Luke age 3 1/2

“I have said it before, and I will say it again….we will do whatever it takes to get Luke to speak, even if it means we have to tie chicken bones around his neck.The good news is….we aren’t tying chicken bones around Luke’s neck~at least not yet.

Mary and Luke (psst...she really IS a super woman!!)

A while back, I found and heavily researched Nutriiveda Original.

 And of course, I joined the facebook groups (www.apraxia.org)  about NV…friended Lisa Geng (one of the authors of The Late Talker) and I was SOLD.  We were buying this “shake” and going to get Luke talking. We ordered Nutriiveda and here is what you won’t believe….it sat in the nicely fed ex boxes that it came in…..in our pantry.

I know, I could kick myself now. But this is to let all of you know that I am not the superwoman you think I am. Sometimes, I am human.

The Luke you see is the darling little one on youtube that works so hard for every syllable, but when it comes to getting him to eat or worse…to brush his teeth. It isn’t pretty.Enter my father, aka Chuckie.

"He can get Luke to do just about anything. AND he is the health, nutrition and supplement guru. (All joking aside, my dad knows his stuff) " ~Mary about her father "Chucky"

He can get Luke to do just about anything. AND he is the health, nutrition and supplement guru. (All joking aside, my dad knows his stuff)I shared that we had purchased this supplement called NV Original and we had tried to get Luke to drink it once or twice, but really didn’t do anything more. Nutriiveda Original was supposed to get him to talk, it had with other apraxic children.

I shared some of the testimonials, etc.In true Chuckie fashion, he said “gimme the can”. He began to read and we exited as fast as we could. (for those who know my father, you know why I left…I didn’t know what was going to come out of his mouth next~like why the heck had I wasted money or why the heck hadn’t Luke been taking this wonderful supplement…I didn’t know and didn’t want to stay to hear what was coming…good or bad~God, love him)

Chuckie called later to tell me that this NV stuff was legit, it was healthy and it would at least get him the nutrients he needed into his body. He didn’t know if it would get him to talk, but he did know that it was safe and a good addition to his diet.

My dad started feeding Luke a little of it a day to build up his taste~he even used shot glasses to entice Luke to drink it down. And that he did…..we started getting at least 24 ounces a day into him~that mixed with a scoop.

Two weeks later….we kept trudging along, sure we had more repetition of words, more attempts, but who was really counting? LOL!!!And then it happened. The SURGE that everyone on NV original talks about…..he said almost a paragraph. Now, it wasn’t correct english. But it sounded brilliant to me.

Is it the NV original? Is it all of the therapy? Is it just finally clicking? Dunno for sure, but what I do know is………….. God continually guides our hands on the masterpiece He is creating right before our eyes.And we are eternally grateful~

Guess who told us he wanted some ice cream and didn’t just sign it today? You guessed it and I was able to catch it on video

Luke’s update after 2 weeks on NV original March 3rd 2012  ”I want ice cream please”

UPDATE 4.12. 2012

Guess who told me ‘your kidding me’ today and in perfect context?!? He is saying so many things now. I can’t keep up and I am running out of fingers to count the words in sentences.   I cannot believe how far we have come in only a few months!   New words this week: Peter pan, Captain Hook, download, never   Take that severe apraxia diagnosis!!! And thank you NV!!!

PS My dad mixes the vanilla NV with Hershey’s chocolate sometimes, sometimes with yogurt or reduced fat ice cream and sometimes he freezes it into popsicles. He is a pretty structured guy and keeps Luke on a schedule, so Luke knows exactly what their routine is and goes with it. Chuckie keeps feeding it to him until it is gone.

I am trying to do more video, but mostly it is the spontaneous speech that I can’t get on film.  Below is proof here’s proof the boy is talking and communicating his wants and needs politely too!   4.12. 2012

Congratulations!  Luke is doing amazing!!!  Below is a beautiful image that speaks a 1000 words about one wonderful family!!!  In the photo is Luke with his big sister Maggie, and his mom Mary and dad Brad.

Brad, Mary, Maggie and Luke "They have everything they need!"

For more help with picky eaters including in regards to NV original

Serving suggestion page 

Recipe page

Page with tips for any picky eaters 

Perhaps the most picky eater ever and suggestions from his mom

Read more of Mary’s Blog “Mommy Square ~My Life As Wife And Mother“

If you want to congratulate  Mary on Luke’s progress so far, please share in the comment section below or at her blog!

Is Nutrition Solving The Autism Puzzle?

Antivirals Drugs or Food?  The Answer & Before and After Videos

Is Nutriiveda Creating a Paradigm Shift in Treatment of Speech Impairments?

Apraxia Road to Recovery Before and After Videos

Improved Reading With Speech Impairments, Before and After Videos

Speech Disorder Road to Recovery, Before and After Videos

Autism Apraxia Road to Recovery, Before and After Videos

Is Nutriiveda Creating a Paradigm Shift in Treatment of Seizures?

Nutrition A Paradigm Shift In The Treatment Of Chromosomal Disorders?

Letter of Thanks from the Parent of Two Children With Profound Special Needs

Epigenics Through Diet Holds Promise For Health, Treatment For Autism, Apraxia And Other Conditions

And it’s not just antiviral medications that are being used. As one parent put it “Many put their children on antivirals but that does not seem to be enough. The parents also add anti-bacterial, anti-fungals, and meds that fight parasites and protozoa in the system along with antivirals they give.” Some of these children are put on these medications for months, some have been on them for years. To help me understand this theory and the reasons for the dramatic medication use,  I was sent the following video which is a MUST WATCH. It’s over an hour long but well worth putting aside the time to watch this in full. I highly encourage anyone who cares for a child with autism, apraxia or even ADHD and other conditions where medications are being used to take the time to listen to Dr. Michael J. Goldberg at the Tarzana Providence Medical Center. Dr. Goldberg, who is on staff at such hospitals as Cedars-Sinai / UCLA, and Providence Tarzana Medical Center, has been treating pediatric ASD patients for over 25 years and previously treated ME/CFS (or chronic fatigue syndrome) patients and the way he formulates his theory is both fascinating  and credible backed with scientific facts.

What If This Is Not Autism? presentation done by Dr. Michael J. Goldberg at Tarzana Providence Medical Center

"We are in the middle of a major medical epidemic affecting children in this country.” Dr. Goldberg

I agree with just about everything that Dr. Goldberg says in his video. While some debate the root cause of the rise in these disorders, genetic or environmental, what aspect of the body is affected including metabolic, immune or a combination of areas; I applaud Dr. Goldberg in helping shed light that these conditions as a whole should be viewed as a medical epidemic. But shouldn’t we also be aware of the risks of long term use of antibiotics? Study:  Antibiotics disrupt gut ecology, metabolism

The following are some before and after videos from various families that believe they saw viral die off without any medication from the foods in NV original.  As you will also note all of these children of course also experienced the typical positive surges in multiple areas.

Example Number One

“My 5 yearl old daughter Keira was diagnosed with Autism a few days before she turned 3.  She developed normally until her last set of vaccines at 27 months, she received a total of 5 shots, three of them were live virus vaccines.  She ran a fever and was lethargic for a couple of days and the regression into autism began.

At 4 years old she only had a handful of words left ,and everything else that came out of her mouth was vocal stimming.  Keira was essentially non verbal and was regressing into her own world.

The following video is of my daughter Keira after she was diagnosed with autism

Before NV original which was started November 1st 2012

After NV original (about 2 months) January 2nd, 2012

Keira is now playing more with toys she previously ignored and her imaginative play skills she used to have are coming back!  It’s so wonderful to watch her laugh and play like other children.  She just seems so much happier.

Our Journey

 

Keira was a very smart and delightful little girl, she said her first word at 10 months old, her personality was just adorable, no one ever thought she would end up with autism and we still don’t believe this happened to our beautiful little girl.

The following video was before Keira started to regress into autism

 When Keira was diagnosed, we immediately started searching for ways to help her, she was a very sick little girl, she developed chronic diarrhea, allergies, severe sleep issues, she stopped eating healthy foods, all she wanted was milk and Pepperidge Farm gold fish.

We decided to start the gluten and casein free diet, this diet helped a little with allergies and sleep issues, it also reduced her meltdowns but we never saw the big wows that a lot of other parents claim to see with their children, Keira was still losing her language, she still had chronic diarrhea and now her fine motor skills were starting to deteriorate.

At 3.5 years old we decided to start her on some supplements and magnetic clay baths, we saw the best improvement on her mood with the clay baths, she was meltdown free!

After a few months of clay baths and multiple modifications on her supplement protocol we realized that Keira was still regressing, the stimming had become very intense it took over her.  (note this is pre NV original)  And worse she lost whatever language she did have.  At 4 years old she only had a handful of words left ,and everything else that came out of her mouth was vocal stimming.  Keira was essentially non verbal.

We started Keira on NV on November 11th 2011, only one scoop a day, her attention, mood, receptive language, motor skills, and eye contact became much better almost instantly!

On day 5 of NV we decided to increase the dose to 2 scoops and the next day we noticed this rash on Keira’s chest and stomach.

 My husband took a long look at the rash and said, “Yes, this is chicken pox.”   I agreed with him.  However after checking with Keira’s school, both of us were very surprised and perplexed.   Nobody we knew had chicken pox, and Keira had not been anywhere but school.  However when we asked her school if there were any cases of chicken pox,  they confirmed there were not.  Keira would be the only one, if she did have chicken pox.

We took Keira to her pediatrician who examined the rash and diagnosed Keira as having chicken pox.  However, the doctor was puzzled when my husband and I explained that Keira was vaccinated for chicken pox, and she had not been exposed to anyone else with chicken pox at school or anywhere else as far as we were concerned.  The pediatrician while as perplexed as us, said that it looked like a very mild case, and prescribed a cream to help with itching and healing.

The rash only lasted about a week, during this time, Keira had flu like symptoms, lots of coughing and sneezing, congestion and a mild fever.

I was really amazed by this chicken pox episode so I decided to post a picture on the Cherab public group on Facebook to ask if anyone else had seen this type of rash on their child while on NV.

Within two weeks, two parents shared about a rash within the first week on NV original.  The first parent, Amanda F., the pediatrician just said it wasn’t a food allergy and diagnosed it as a mild rash of unknown origin, and prescribed a cream.  The other parent, Dina Garcia, reported the same type of rash on her own daughter and shared a photo as well.

My daughter Keira developed another rash after the first one.  It was a very fine one but it covered all her inner thighs, she had a high grade fever the night prior and the next morning we see this rash which lasted only for a few days.

I again recall one of the first pages I read on this website was Autism, Antivirals, Drugs or Food?  There is no doubt in my mind that NV is a very powerful antiviral, I believe it is activating hidden viruses and kicking them out.  It’s well documented from all the literature professionals have shared with us that our ASD children are very sick children in regards to allergies, metabolic and gut dysfunction.  And some have chronic viral infections validated through medical testing which are linked to autism as Dr. Goldberg speaks about.  Chronic viral infections may have been the root of causing most of my daughter Keira and other’s autistic behaviors.

I decided to open up a Facebook group for Spanish speaking Moms of children with autism that were giving or were interested on giving NV original to their children.  While I am sharing for now all the rash photos I also want to add that all of us on the Spanish NV group have seen yeast die off with NV as well, it starts as soon as we up the dose, we can always tell it’s die off because the mucous in the stool, the irritability, brain fog and overall temporary regression that lasts one or two weeks.  We all have noted improvements in  cognition, receptive and expressive language, play skills and awareness soon after the rash clears.  This is notable to the professionals that work with the children too.

The Moms that have seen these mild rashes that last about a week after supplementation of NV original have all reported improvements in cognition, receptive and expressive language, play skills and awareness soon after the rash clears.  So far NV original is working for all that have tried it.  This is notable to the professionals that work with the children too.  Lisa Geng who was first to  discover the theraputic effects of Nutriiveda original through her own son, felt it was important for me to document my daughter’s journey as well as others who have had the rash in the early days of NV original as others have only noticed it once I shared photos.

I am so thankful that I found out about Nutriiveda.  While none of us know exactly how it’s helping, it seems to be helping all our children.  Keira is now playing more with toys she previously ignored and her imaginative play skills she used to have are coming back!  It’s so wonderful to watch her laugh and play like other children.  She just seems so much happier.

We are very excited because our Spanish NV group is growing and more Moms in different Countries are ordering NV original, we can’t wait to see if their children have the same surges and how many present these viral die off symptoms and rashes as well!    I will continue to update this page! I love NV original!” ~ Lucia

Example Number Two

Dina’s daughter before NV original: diagnosis autism and receptive delays

Dina had written prior to starting NV original “I hope and I pray to see that light switch turning on in my little girl’s head.  She was diagnosed with autism and receptive delays. ”  Dina reported that her daughter’s doctor diagnosed the rash as impetigo, however, the rash lasted five days, about the same amount of time as Keira’s, and her daughter also had flu like symptoms along with the rash.

One month update on original NV from Dina
“She has had some improvements, more spontaneous/appropiate talking, for example before she was just repeating, if I said I love you baby, she responded I love you baby, now she says I love you mommy! Also if someone sneezes she now says: bless you, and the name of the person. On the other hand I still try to ask her questions about her day, or her favorite toy and she will just stare at me and ignore me, and she has developed some anxiety if any child gets close to her, she will be terrified and she will hit.

Two month update on original NV  from Dina
“I noticed a big difference in her eye contact , its better now, she seems happier. Now she is talking in sentences most of the time, (ie she would say ” aaaaaaaa juice” when she wanted juice, now she can say ” Give me juice” , we are still working on adding ” please” I am happy!” ~Dina

And in sharing more updates came in from various groups.  The following is from Elizabeth from our public group at Apraxia.org

Example Number Three

Connor 27 months old

Connor has no diagnosis yet, but we have a pediatric neurology appointment scheduled for next week.

He started ProEFA fish oil 2/3/12 and then he started NV original 3 days ago on Valentine’s Day 2/14/12 and a day later he got a rash which didn’t itch him until 2 days later 2/16/12.  What’s also interesting is that the rash was more inflamed looking the first few hours after first taking his NV, and then after a few hours seems to fade a bit.  The following photo is of the rash one day after starting him on NV original.

Connor's mild rash one day after starting NV original

“My son Connor only said only 3 words prior to Fish oil and NV original.

Since starting on Fish oil and NV original he is attempting to say any word I coach him to say. Prior to this unless it was his 3 words he could say “up” “on” “more” he would get very frustrated/ embarrassed and run into the corner so he didn’t have to try to say the words. He is saying single words more clearly and fast. “more vs mooooore” plus attempting to say 2 word combinations “wuv ooo” (love you) “ip up” (zip up) “hi Bob” or “night Bob” to his fish Bob.

Surges:
~ He’s been great at attempting new words… Even if the approximation is rough he keeps trying. Just a couple of weeks ago if I coached him on a new word he would run into the corner because he was frustrated / embarrassed that he couldn’t say a word.
~ he’s saying the “ch” sound
~ His poop has been much firmer… Typically, he has very loose stools with undigested food particles. Since NV they are more “normal”

4 days on NV original for Connor

Update of something he’s NEVER done before: last night he picked up his book “Moo, baa, la, la, la” by Sandra Boynton and he said “la, la, la” to me!

Then Connor picked up his train book and said “choo choo” !!!!

Never once EVER before has he picked up an object and said what it is. **tears in my eyes** I’m so excited!

PS note from Elizabeth as the above note was written on Saturday morning 2/18/12: “We got NV on tuesday afternoon so he only got a 1/2 scoop that day. wed, thurs, fri he got 1/2 scoop in the am and 1/2 scoop in the afternoon.” ~Elizabeth

Example Number Four

Yessica’s son before NV original diagnosis:  autism

In our group, one more Mom Yessica Alejos reported and posted a picture of her autistic son’s rash, which he developed 6 days after starting NV.

Yessica explained that he had a mild cough and was very tired when she noticed the rash.  She took him to the doctor and she amazingly said that it could be diaper rash, really?? Yessica’s son had completely stopped using diapers prior to him developing the rash! I just could not believe this rash got diagnosed as diaper rash, the sores were on his upper waist and he even had a few on his chest.  He was given a cream and antibiotics.  The rash cleared completely within 7 days.

One month update on original NV for Yessica’s son

“I just wanted to share that today during ABA therapy my son chose the Ipad as his reward for a great session.  He found a “talking dinosaur” application which he never played with before, this dinosaur repeats everything so say to it.  I was floored when my son started saying all these new words for the dinosaur to repeat them!!  He said all colors, shapes and some animals and numbers, he said people’s names and labeled objects around the house!!  I could not believe it!  When the therapist finally left and he was done playing with the Ipod, he gave it back to me and said “dinosaur talks!”  The very first meaningful two word sentence that came out of his mouth!” ~Yessica

Example Number Five

Betty’s son before NV original diagnosis:  autism and apraxia

Several Moms have reported a milder finer rash, Betty is one of those Moms, her son who has mild autism and apraxia has been on NV original since early December of 2011  with amazing and rapid progress in speech, social, independence, play all noted by his professionals too,  and she recently reported this rash on Tony her son.

2 month update on NV original for Betty’s son

“he is doing great is really amazing to call him and see him coming right away or asking him to bring me my phone and doing it is really great!!!!  We see that when daddy is playing with him he talks more!  Here is an update from his teacher:

“He peed and pooped in the potty in the morning, like a big boy. I was so proud of him.  He is really showing a lot of independence, just wish there will be more consistency…we’ll get there. He also sounded so much better, worked well. He is enjoying painting, requesting for colors using a communication board, and completed a new 48 piece puzzle by himself during nap time.   I was impressed working with him this week.” ~Betty’s son’s teacher

My son was trying to imitate a singer in a video, this is something he never did before even if we tried to prompt it he was always refusing to do it… and now without telling him he is doing it…. his speech therapist told me that before kids star talking they should be able to imitate actions so probably we are on the right track right!!!  We are really happy with all my son’s improvements, we know we still have a lot to go but like his teacher said, we will be there.  Tony is showing more interest in other kids, he likes to see how they play is just that due to his lack of language i think it is more difficult for him,   I see he is progressing very good, he is attending more and showing interest in many things he did not show before, like his toys, he wants to take toys to his school now.
Thanks,

Betty

Another quick 2 month update from Betty

“I wanted to share with you, today was a very special day my husband has to work so since Tony loves to go there we desired to go with him, we have not gone there since November, Tony always loved to run back and forward, always looking the bright lights they have there, not paying too much attention to his surrenders,asking me to buy cookies or anything from the vending machine, was always scare about going into the offices by himself and even scare using the restrooms. Well today was a completely different day he was very interested about what daddy was doing he even wanted to help him, wanted to go and play into the offices, went to the restroom without any problem I offered some snacks and he told me no no, wow I was very impress with his behavior that I took some pictures and sent them to you.
Betty

Tony was very interested about what daddy was doing

Tony even wanted to help his Daddy for the first time!

2 and a half month update from Betty about Tony

“My son is riding his bike now, we have been on NV for 2 1/2 months now, his IEP progress report for PT says

“He just recently has begun trying to jump on the floor.  bobbing his body up and down; he is able to jump and clear his feet on the trampoline” ( i could add ” on my bed too” lol ).

Today we went to a friend’s house and her 10 years old son was riding a skate board. My son was fascinated, so the boy asked my son if he wanted to ride too.  To my sorprise my son tried and was doing good with balance!  I am not saying he did it as well as the 10 year old boy but he was having very good balance on it!

Before NV original just over 2 and a half months ago I could no imagine my son doing this. We never got a tricycle for him because was never interested and was not able to pedal, now even with this weather he asked my husband to take him outside to ride the bike. I feel like I am dreaming !!!!!” ~ Betty

4 month update from Betty about Tony

“It’s been long since I have sent you updates for my son   I am very happy, he is doing really good, we are really happy specially because I have seen my son doing things I never though he was going to do!

Today at church he was about o fall asleep when one of the little girls about 5 years old, came close to him and started trying to play with him, probably 3 or 5 months ago, this would had been a cause for crying and frustration for not been able to sleep, well 5 minutes later he was downstairs playing with them, he does not really interact one to one but he tried to touch the other kids face or arms, so he is really trying to interact just that his lack of speech does not really help,  

Lisa he has improved in many areas, can you believe that now he is very interested in his class mates food!!!!, i have received a couple e mails from his teacher asking me to send, pizza, fruit snack, juice because he is asking ( in a nicely way ) to  eat that!!! 

I am so happy because my son is pronouncing better some letters like i, for pig, this was a really hard letter for him to pronounce.  Just that speech is coming kind of slow, recently we have hear him talking most of the time by himself but is like talking Chinese or other language because we do not understand!! I feel frustrated because sometimes he comes to me and say something and looks at me and am like  what???? and I just can say to him oh really??? is good… but honestly i don’t get what he is saying…. at school he is working well, using reward is a good way to have him to do his job, just that sometimes he looks like is not interested in the activity, he knows what he needs to do just that not even a cookie  makes him to do it.

 I am giving him 3 scoops, and 3 soft gels of pro efa, I am planning to raise to 4 scoops probably next week.” ~Betty

If you want to congratulate any of the parents on their children’s progress so far, please share in the comment section below!

Note From Lisa Geng Who First Discovered NV Original’s Therapeutic Effects In Her Own Son Tanner.

While we may not have the best diagnostic name to embrace this new group of affected children, teens and young adults, and while there are still debates on the cause, or the best treatment, we have seen remarkable, dramatic improvements in our nonprofit with thousands now over a decade with the use of essential fatty acids (or fish oils) and for the past year with close to a thousand with the use of Nutriiveda (NV) which contains all of the essential amino acids and nutrients from whole foods. So using Dr. Goldberg’s theory I wanted to see if the successful use of the essential nutrients added to the diet can tie in to Dr. Goldberg’s theory of virus. We have seen individuals taken off seizure medications, and through professional anecdotal reports no longer qualifying for speech services, and even improvements to the elderly relatives in our nonprofit who have Alzheimer’s or diabetes.

“Nutritional Therapy” A Novel And Simple Treatment For Autism?

Up till now in wondering why NV original was “working” with such dramatic and overwhelming success in so many ages and conditions,  I had focused mainly on the metabolic system with a strong focus on essential amino acids and environmental links to neurogenesis

But since listening to Dr. Goldberg I was both fascinated and curious about the viral theory he presented. Were there links to the essential fatty acids, essential amino acids or other nutrients that somehow helped improve the body’s immunity? If so, that would be a form of ayurveda which is in essence the science of life. Ayurveda is an ancient form of Eastern medicine that goes back over five thousand years that today is being clinically validated with the science of Western medicine.

Nutriiveda, a form of ayurveda, was developed to nourish and gently and naturally rid the body of toxins through food, by a team of world renowned medical doctors including Dr. Deepak Chopra. Nutriiveda is a 100 percent natural, water soluble food source that is GFCF, fat, sodium, caffeine, stimulant, synthetic free that contains all of the essential amino acids and nutrients all from whole food sources. Each food is tested free of heavy metals, herbicides and pesticides; so a very clean food source. While again when looking at the metabolic system most links were toward the essential amino acids, after watching Dr. Goldberg I just did a quick search to see if any of nutrients including the botanicals have been explored for antiviral, anti bacterial, anti fungal capacities.

This is one of the first things I found:

“The abundant use of anti-infective agents resulted in the emergence of drug-resistant bacteria, fungi, and viruses. To overcome the increasing resistance of pathogenic microbes, a variety of medicinal plants have been screened worldwide for their antimicrobial properties. The aim is to find new, effective antimicrobial agents with novel modes of actions. Essential oils derived from aromatic medicinal plants have been reported to exhibit exceptionally good antimicrobial effects against bacteria, yeasts, filamentous fungi, and viruses. The progress of this expanding scientific field will be documented by the most important results published in the last decade.” (1)

It appears that overuse of antibiotics can create a metabolic dysfunction.   Recent research suggests that this microbial ecosystem plays a variety of critical roles in our health. Now, working in a mouse model, researchers from Canada describe many of the interactions between the intestinal microbiota and host, and show that antibiotics profoundly disrupt intestinal homeostasis. The research is published in the April 2011 issue of the journal Antimicrobial Agents and Chemotherapy. “…Our work shows that the unnecessary use of antibiotics has deleterious effects on human health that were previously unappreciated” Read more Antibiotics Disrupt Gut Ecology, Metabolism

While I was just looking for one or two connections for the essential nutrients and botanicals we have been using in our nonprofit with great success, I found on a quick search that yes the essential fatty acids, some of the essential amino acids, and each botanical had antiviral, anti fungal and anti bacterial properties, in addition to health benefits.

	Turmeric (Curcuma longa) “Curcumin …from the curry spice turmeric, exhibits a wide range of activities…including antiviral effects” (2)
	Guggul (Commiphora mukul) “Pharmacological studies have revealed significant anti-inflammatory, antirheumatic and hypocholestremic/hypolipaemic activity inhibitors of tumor metastasis, antiobesity drugs, fungistatic compounds, insect antifeedents, antivirals and immune modulators” (3)
	Gymnema (Gymnema sylvestre) “Two triterpenes 1 and 2 with antiviral activity against Herpes simplex virus type 1in vitro were isolated from Prunella vulgaris. Each compound caused a significant reduction in viral cytopathic effect when vero cells were exposed to them for 72 hours after viral challenge.” (4)
	Amalaki (Emblica officinalis)“Earlier studies have demonstrated potent antimicrobial properties of E. officinalis (Ahmed et al., 1998) and it is used as antiviral for cold and flu. In the respiratory infections, it has an antibiotic activity against a wide range of bacteria, used traditionally in the treatment of lungs (Chopra & Simon, 2000). It also has shown antifungal activity In vitro (Dutta etal., 1998). (5)
	Haritaki (Terminalia chebula)“Hot water extracts of traditional herb…Terminalia chebula has been shown to have anti-herpes simplex virus (HSV) activity in vivo, were examined for anti-cytomegalovirus (CMV) activity in vitro and in vivo in this study.” (6) ““Terminalia chebula Retz. (Haritaki, Chebulic myrobalam) In Sanskrit, Haritaki means “carries away” (all diseases). Haritaki is a safe and effective purgative, expectorant and tonic. It is a component of the classic Ayurvedic combination called “Triphala” (three fruits). Tiphalpha is an important Ayurvedic medicine, which often promotes health through successive steps of purification and detoxification. It is known to have strong anti-mutagenic activity, because of its very rich content vitamin C” (6.5)
	Green Tea (Camellia sinensis)“Tea extracts prevented rotavirus and enterovirus from infecting monkey kidney cells in tissue culture (24); this was ascribed to interference with viral adsorption rather than a direct antiviral effect. Microbiological effects. In one of the earliest reports, an army surgeon recommended the use of tea in soldiers’ water bottles as a prophylactic against typhoid. A series of well-conducted, systematic studies, mainly from Japan, now suggests that tea extracts show several useful antimicrobial effects.” (7)
	Cayenne (Capsicum annuum)“We present data that the induction and subsequent phosphorylation of CaPR-10 increased its ribonucleolytic activity to cleave invading viral RNAs, and this activity should be important to its antiviral pathway during viral attack in vivo.” (8)
	Cinnamon (Cinnamomum verum)“In this study, four essential oils—cinnamon oil, leech lime oil, lemongrass oil, and turmeric oil—were examined for their antimicrobial activities against Streptococcus iniae, a bacterium that is pathogenic in fish, in which it causes streptococcosis. Cinnamon oil was the most potent antimicrobial agent among these oils, with a minimal inhibitory concentration (MIC) of 40 μg/ml.. These results indicate that cinnamon oil had a protective effect on experimental S. iniae infection in tilapia, and thus has the potential to replace the antibiotics used to control this disease.” (9)

Lysine “Lysine is an essential amino acid that is well known for its antiviral properties. It helps prevent outbreaks of herpes and cold sores, and is needed for hormone production and the growth and maintenance of bones in both children and adults.  Lysine is involved in the production off antibodies for a strong, healthy immune system, which may be part of the reason it is so effective at fighting herpes viruses. Lysine is one of the essential amino acids, which means it cannot be manufactured in the body and must be obtained from dietary sources.” (10)

Fish Oils (Essential Fatty Acids/EFAs/DHA,EPA/Omega 3s) we have used in our group for over a decade now with great success:  “Antibacterial, anticoagulant, antifungal, antimalarial, antiplatelet, antituberculosis, or antiviral activity was reported for 35 marine chemicals. An additional 20 marine compounds were shown to have significant effects on the cardiovascular and nervous system, and to possess anti-inflammatory or immunosuppressant properties.” (11)

While the essential nutrients and botanicals mentioned above have no known side effects and are food that can and are used daily in some parts of the world, there can be serious adverse effects of long term use of drug antivirals including liver damage, myopathy, neuropathy (dysfunction of the nerves) pancreatitis, lipodystrophy, mitochondrial toxicity, hypersensitivity and reversible renal impairment.

Side effects of long-term oral antiviral therapy for hepatitis B.

Side effects of antiviral drugs

Side Effects of Long Term HIV Antiviral Use

Adverse effects of antiviral therapy

So while we weigh the pros and cons prior to medicating, we should add to the equation Eastern medicine; the use of food to provide the body with what may be lacking to help the body heal itself. If this happens it would be done through the use of the “internal pharmacy.” As  the late neurologist Dr. David Simon, who was Medical Director of the Chopra Center for Wellbeing and who was one of the doctors behind the formulation of Nutriiveda states, “The most powerful pharmacy on the planet is the human body.”

Perhaps the most powerful pharmacy is the human body, and perhaps as well the most powerful drugs are growing naturally on planet Earth. It appears the emergence of “superbugs“  (12) is from overuse of prescription antiviral and other medications.  So ask not just “which is healthier and has less risk of side effects?” but also “which is more effective for the general population?” and the most logical answer will include the use of natural antivirals, antibacterials, anti-fungals etc. from essential nutrients and botanicals.  Ayurveda should continue to be a growing area of interest in Western medicine.

In the mixed up world we live in where anything that comes in a fast food wrapper is not analyzed by the consumer but natural foods are,  we should change the view of “complimentary” medicine as man made drugs when essential nutrients are not enough -and not the other way around.

Neurogenesis; Does Mother Nature Know Best?

Two new studies…choice is diet or drugs to help TBI/traumatic brain injury (research amino acids)

Added protein/amino acids and or enzymes help those with autism?

Mitochondrial Dysfunction in Autism and Other Disorders, Can Diet Help?

Theories, Based in Science to Support Whole Food Therapy for Autism, Apraxia, Traumatic Brain Injury, Seizure Disorders

Once again, perhaps Mother Nature does know best.

References:

1. Essential Oils of Aromatic Plants with Antibacterial, Antifungal, Antiviral, and Cytotoxic Properties –an Overview
Jürgen Reichlinga Paul Schnitzlerb Ulrike Suschkea Reinhard Sallerc
a Institute of Pharmacy and Molecular Biotechnology, Department of Biology,
b Hygiene Institute, Department of Virology, University of Heidelberg, Germany
c Institute of Complementary Medicine, Department of Internal Medicine, University Hospital Zurich, Switzerland

2. Curcumin inhibits herpes simplex virus immediate-early gene expression by a mechanism independent of p300/CBP histone acetyltransferase activity.
Kutluay SB, Doroghazi J, Roemer ME, Triezenberg SJ.
Graduate Program in Cell and Molecular Biology, Michigan State University, East Lansing, MI 48824, USA.

3. α-GLUCOSIDASE AND CHYMOTRYPSIN INHIBITING LIGNANS FROM COMMIPHORA MUKUL
Muhammad Athar Abbasi†, Viqar Uddin Ahmad*‡, Muhammad Zubair, Shamsun Nahar Khan, Muhammad Arif Lodhi and M. Iqbal Choudhary
HEJ Research Institute of Chemistry, International Center for Chemical Sciences, University of Karachi, Karachi-75270, Pakistan

4. Isolation and antiviral activity of the gymnemic acids
J. E. Sinsheimer, G. Subba Rao, H. M. McIlhenny, R. V. Smith, H. F. Maassab and K. W. Cochran
Cellular and Molecular Life Sciences Volume 24, Number 3, 302-303, DOI: 10.1007/BF02152834

5. ANTIMICROBIAL ACTIVITIES OF EMBLICA OFFICINALIS AND CORIANDRUM SATIVUM AGAINST GRAM POSITIVE BACTERIA AND CANDIDA ALBICANS SABAHAT SAEED* AND PERWEEN TARIQ
Department of Microbiology,
University of Karachi, Karachi-75270, Pakistan

6. Prophylactic treatment of cytomegalovirus infection with traditional herbs.
Yukawa TA, Kurokawa M, Sato H, Yoshida Y, Kageyama S, Hasegawa T, Namba T, Imakita M, Hozumi T, Shiraki K.
Department of Virology, Toyama Medical and Pharmaceutical University, Japan.

6.5 Compilation of Bioactive Compounds from Ayurveda
1Venom and Toxin Research Programme, Department of Anatomy, Yong Loo Lin School of Medicine, National University of Singapore, Singapore – 117597
2Department of Physiology, Yong Loo Lin School of Medicine, National University of Singapore, Singa

7. Antimicrobial Properties of Tea (Camellia sinensis L.)
J. M. T. HAMILTON-MILLER*
Department of Medical Microbiology, Royal Free Hospital School of Medicine, London NW3 2QG, United Kingdom

8. Pathogenesis-related protein 10 isolated from hot pepper functions as a ribonuclease in an antiviral pathway
Chang-Jin Park, Ki-Jeong Kim, Ryoung Shin, Jeong Mee Park, Yun-Chul Shin, Kyung-Hee Paek
The Plant Journal Volume 37, Issue 2, pages 186–198, January 2004

9. Potential of cinnamon (Cinnamomum verum) oil to control Streptococcus iniae infection in tilapia (Oreochromis niloticus)
Pongsak Rattanachaikunsopon and Parichat Phumkhachorn
Fisheries Science Volume 76, Number 2, 287-293, DOI: 10.1007/s12562-010-0218-6

10. Lysine

11. Marine Pharmacology in 2000: Marine Compounds with Antibacterial, Anticoagulant, Antifungal, Anti-inflammatory, Antimalarial, Antiplatelet, Antituberculosis, and Antiviral Activities; Affecting the Cardiovascular, Immune, and Nervous Systems and Other Miscellaneous Mechanisms of Action
AlejandroM. S. Mayer and MarkT. Hamann
Marine Biotechnology Volume 6, Number 1, 37-52, DOI: 10.1007/s10126-003-0007-7

12.  Losing Touch in the Era of Superbugs?
Leif Hass, MD Alta Bates Summit Medical Center, Oakland, California  Leif Hass, MD, Foundation Inpatient Team, 400 34th St, Oakland, CA 94608
Annals of Family Medicine 8:461-463 (2010)
© 2010 Annals of Family Medicine, Inc.
doi: 10.1370/afm.1164

Brief Intro, What is Nutriiveda (NV) Original?

Success After Years of Failed Treatments For Autism: One Child’s Journey

Is Nutrition Solving The Autism Puzzle?

Is Nutriiveda Creating a Paradigm Shift in Treatment of Speech Impairments?

Autism Apraxia Road to Recovery, Before and After Videos

Is Nutriiveda Creating a Paradigm Shift in Treatment of Seizures?

Nutrition A Paradigm Shift In The Treatment Of Chromosomal Disorders?

Letter of Thanks from the Parent of Two Children With Profound Special Needs

Epigenics Through Diet Holds Promise For Health, Treatment For Autism, Apraxia And Other Conditions

Translation From Lucia For Spanish Speaking Parents

Mi hija de 5 años Keira fue diagnosticada con autismo unos días antes de que ella cumpliera los 3 años. Ella se desarrolló con normalidad hasta su última serie de vacunas a los 27 meses, recibió un total de 5 vacunas, tres de ellas fueron vacunas de virus vivos. Ella tubo fiebre y letargo durante un par de días y la regresión hacia el autismo comenzó.

Keira era una niña muy inteligente y encantadora, ella dijo su primera palabra a los 10 meses de edad, su personalidad era adorable, nadie pensaba que iba a terminar con un diagnostico de autismo y todavía no creo que esto le sucedió a nuestra hermosa niña.

El siguiente video fue antes de Keira comenzó a retroceder en el autismo

Cuando se le diagnosticó Keira, de inmediato comenze a buscar la manera de ayudarla, ella era una niña muy enferma, ella desarrolló diarrea crónica, alergias, problemas graves de sueño, dejó de comer alimentos sanos, lo único que quería era la leche y los gold fish Pepperidge Granja .

Decidimos iniciar la dieta libre de gluten y de caseína, esta dieta ayudó un poco con las alergias y problemas de sueño, también redujo sus berrinches, pero nunca vimos nada asombroso como un montón de padres dicen ver con sus hijos, Keira continuaba perdiendo su lenguaje, todavía tenía diarrea crónica y ahora su motricidad fina comenzaba a deteriorarse.

A los 3,5 años de edad decidimos comenzar con algunos suplementos y baños de arcilla magnética, vimos la mayor mejoría en su estado de ánimo con los baños de barro, los berrinches se fueron!

Después de unos meses de los baños de barro y varias modificaciones en su protocolo de suplementos nos dimos cuenta de que Keira todavía seguia con regresión, el stimming se había vuelto muy intenso. Y lo peor es que perdió el lenguaje que ella tenía. A los 4 años de edad ya sólo hablaba un puñado de palabras, y todo lo demas que salia de su boca era stimming. Keira era esencialmente no verbal.

Empezamos a Keira con NV el 11 de noviembre de 2011, sólo una cucharada al día, la atención, el humor, el lenguaje receptivo, y el contacto visual se convirtió en mucho mejor casi al instante!

El día 5 de NV se decidió aumentar la dosis a 2 cucharadas, y al día siguiente nos dimos cuenta de esta erupción en el pecho y el estómago de Keira.

Mi marido tomó una larga mirada a la erupción, y dijo: “Sí, esta es la varicela”. Estube de acuerdo con él, Sin embargo, tras consultar con la escuela de Keira, los dos estábamos muy sorprendidos y perplejos. Nadie en la escuela tenía varicela, y Keira no había estado expuesta al virus en ningún otro sitio. Sin embargo, cuando se le preguntó a su escuela, si hay casos de varicela, se confirmó que no. Keira sería el único, si ella tenía la varicela.

Llevamos a Keira a su pediatra que examinó las erupciónes y Keira fue diagnosticada como teniendo la varicela. Sin embargo, el médico se sorprendió cuando mi marido y yo le explicamos que Keira fue vacunada contra la varicela, y ella no había estado expuesta a cualquier otra persona con varicela en la escuela o en cualquier otro lugar en lo que a nosotros respecta. El pediatra, mientras que tan perplejo como nosotros, dijo que parecía un caso muy leve, y le recetó una crema para aliviar la picazón y la curación.

La erupción duró alrededor de una semana, durante este tiempo, Keira tenía síntomas de gripe, mucha tos y estornudos, congestión y fiebre leve.

Yo estaba muy sorprendida por este episodio de varicela, así que decidí poner una foto en el grupo Cherab público en Facebook para preguntar si alguien más había visto este tipo de sarpullido en su hijo, mientras que en NV.

Dentro de dos semanas, dos padres comparten acerca de una erupción en la primera semana de NV original. El primer padre, Amanda F., el pediatra sólo dijo que no era una alergia a los alimentos y se diagnostica como una erupción leve de origen desconocido, y le recetó una crema. El otro padre, Dina García, informó el mismo tipo de sarpullido en su propia hija y compartió una foto así.

Dina informó que el médico de su hija diagnosticada la erupción como el impétigo, sin embargo, la erupción duró el mismo número de días de Keira y su hija también tenía síntomas de gripe, junto con la erupción.

Me decidí a abrir un grupo en Facebook para Madres de niños con autismo  que hablan español que dan o se interesan en dar a sus hijos NV original.

En nuestro grupo, una mamá mas, Yessica Alejos informó y publicó una foto de la erupción de su hijo, que desarrolló seis días después de comenzar NV.

Yessica explicó que había una leve tos y estaba muy cansado cuando se dio cuenta de la erupción. Lo llevó al médico y que sorprendentemente, dijo que podría ser la dermatitis del pañal, de verdad? Hijo de Yessica había dejado por completo el uso de pañales antes del desarrollo de la erupción! Yo no podía creer lo que esta erupción se diagnosticó dermatitis del pañal, las lesiones fueron en la cintura alta y que incluso había algunos en el pecho. Se le dio una crema y antibióticos. La erupción desaparecio por completo dentro de 7 días.

Las madres han reportado una erupción más fino suave, Betty es una de esas madres, su hijo ha estado en NV por un par de meses y que recientemente la erupción de su hijo Tony.

Mi hija Keira ha desarrollado recientemente un nuevo sarpullido, esta vez es muy fino, pero le cubrió todo el interior de sus muslos, ella tubo una fiebre muy alta la noche anterior y a la mañana siguiente vemos esta erupción.

Volví a recordar una de las primeras páginas que he leído en este sitio web se autismo, antivirales, medicamentos y alimentos? No hay duda en mi mente que NV es un poderoso antiviral, creo que esta activación los virus ocultos y los esta eliminando por la piel. Está bien documentado de todos los profesionales de la literatura han compartido con nosotros que nuestros niños con autismo son niños muy enfermos en cuanto a las alergias, la disfunción metabólica y el intestino. Y algunos tienen infecciones virales crónicas validadas a través de las pruebas médicas que están vinculados con el autismo como el Dr. Goldberg habla a continuación. Infecciones virales crónicas puede haber sido la raíz de causar la mayor parte de mi hija Keira y conductas autistas de otras.

¿Y si no es el autismo? presentación realizada por el Dr. Michael J. Goldberg en Tarzana Medical Center de Providence

“Estamos en medio de una gran epidemia médicas que afectan a los niños en este país.” Dr. Goldberg
Las mamás que han visto estos sarpullidos leves que duran aproximadamente una semana después de la suplementación de la NV original, han informado de mejoras en la cognición, el lenguaje receptivo y expresivo, el juego las habilidades y el conocimiento poco después de que la erupción desaparece. Esto es notable a los profesionales que trabajan con los niños también.Lisa Geng, que fue el primero en descubrir los efectos terapeuticos de NutriiVeda a través de su propio hijo, sentía que era importante para mí, para documentar el caso de mi hija, así como otros que han tenido la erupción en los primeros días de la NV original como otros que solo se dieron cuenta una vez que compartí fotos.

Estoy tan agradecida de que me enteré de NutriiVeda. Mientras que ninguno de nosotros sabe exactamente cómo está ayudando, parece estar ayudando a todos nuestros niños. Keira está jugando más con los juguetes que antes eran ignorados y sus habilidades de juego imaginativo que solía tener se están volviendo! Es maravilloso verla reír y jugar como los otros niños. Ella parece mucho más feliz.

Estamos muy emocionados porque nuestro grupo español NV es cada vez mayor y más madres en diferentes países están ordenando NV, no podemos esperar para ver si sus niños presentan estos síntomas de muerte viral y erupciones también! Voy a seguir actualizando esta página!

Grupo de Facebook para las mamás de habla española de los niños con autismo que estan dando o estan interesadas en dar a sus hijos originales NV.

This is 9 year old Liberty after being on Nutriiveda original for 2 months

“Liberty is now 9 years old.  Around the time Liberty was 5 years old, I became aware of the biomedical approach to autism. We went to different biomedical doctors.  We tried many expensive supplements, had many labs taken, gave him methy-B12 injections, and tried “off-label” drugs that we were told had been successful for treatment.   I became well-versed in the GFCF diet, the SCD diet, the Feingold diet for phenol sensitivity, the viral , fungal, bacterial theories, leaky gut and parasite theory, malabsorption, PANDAS,  mitochondrial disruption, Yasko protocol, labs for heavy metals, chelation, NIDS protocol, Stan Kurtz protocol, Dr. Goldmann,  Dr. Shaw and Great Plains Labs, the French labs for metals, Lyme disease protocol…. you name it, I probably know about it or tried it.  And not only did none of it work for him, some of these treatments made him regress even further.“ ~Liberty’s mom Kathryn

When my son, Liberty, was born he appeared to be normal.  I had had a healthy pregnancy and each trip to the pediatrician showed that he was meeting his milestones on time.

Liberty developed normally as a baby

But suddenly, at 13 months of age,  my son received several vaccines in one day  to “catch him up” on the ones he missed.  The pediatrician’s office had run out of vaccines several times and so my son did not get a few of them on time.

Within 4 months Liberty regressed into autism

I did not notice any immediate reactions to the vaccines but he did develop two ear infections shortly thereafter.  The  first one was refractory to the antibiotics so the pediatrician, visibly worried, gave us a stronger one just as soon as we had finished the first round.    My son had had at least 9 ear infections in one year but the pediatrician said this was “normal.”   He had had antibiotics for each infection.

Things started to change and within 4 months, at 17 months of age, my son was no longer looking at us or responding to his name.   He became obsessed with the television and videos.   He did not point.  The babbling stopped and he no longer attempted to say “momma”  or “daddy” which was heartbreaking.

My son, who  formerly was a very good eater, suddenly became  picky  to the point he wanted absolutely nothing but graham crackers.   He literally regressed in front of our eyes and there appeared to be no help or anything we could do to stop this.

Liberty went from being a good eater to refusing all but graham crackers

Occupational therapy switched the focus or our sessions to food and textures and  tried to get Liberty to eat other things.   He never had formed stools but was constipated often.   Several  pediatricians did not think anything was wrong.  They said he was just a “late bloomer,” but I asked for a referral for a formal evaluation.

At 22 months of age, my son Liberty was diagnosed with autistic spectrum disorder.

From that point on everything changed as we went through the usual sequence of events offered to children with developmental delays including   Early Intervention consisting of speech and occupational therapy in our home until 3 years of age, and then special education in a structured environment in a public school.  My son, who, again, was just beginning to say “momma”  and “daddy” before the vaccines,  basically became non-verbal.   He did make noise but he never pointed and he did not have direct eye contact.  He mouthed objects constantly.   He never slept through the night and often awoke screaming.  He had problems with sensory integration.  He had ear sensitivity and light sensitivity.  We were physically and mentally exhausted and soon to be financially exhausted as well.

Around the time of 5 years old, I became aware of the biomedical approach to autism.  I was given a book by a doctor who treated children with autism.   We had to borrow money to get on an airplane to see this man.  We spent  scads of money for phone appointments thereafter.

We tried many expensive supplements, had many labs taken, gave him methy-B12 injections, and tried “off-label” drugs that we were told had been successful for treatment.

These were just some of the many supplements that Liberty used to be on before NV

I scoured the internet.  We went to different biomedical doctors.  I became well-versed in the GFCF diet, the SCD diet, the Feingold diet for phenol sensitivity, the viral , fungal, bacterial theories, leaky gut and parasite theory, malabsorption, PANDAS,  mitochondrial disruption, Yasko protocol, labs for heavy metals, chelation, NIDS protocol, Stan Kurtz protocol, Dr. Goldmann,  Dr. Shaw and Great Plains Labs, the French labs for metals, Lyme disease protocol…. you name it, I probably know about it or tried it.

Meanwhile, my son began having absence seizures during this time and was on Depakote for more than two years for prevention of these.

We had begun a GFCF diet and saw a little improvement in sleeping through the night.     In this picture, I was so proud of Liberty because he was able to wear a shirt collar and a cape and twirl around, he loved it.  He even went trick or treating and would hold out his bag, even though he did not like candy.  He tried to say, “Trick or treat.”

Before Liberty was put on a strong antiungal which caused even more regression

This photo is before my son was put on a strong antifungal, Diflucan, by the DAN doctor that turned him into a raving, kicking, screaming and raging maniac.  After the Diflucan was begun, Liberty never tried to talk again.

We were told it was die off and to give charcoal.  So we did that but charcoal also constipates!

It was an up and down cycle, it never really got any better.  And the constipation made it even worse.  My son had to endure endless years of glycerin suppositories and enemas.   He could go 7 days and nothing would move.

He had a slight initial improvement on probiotics  but it was short-lived and he even had die-off with those because you have to alternate strains of friendly bacteria.  We just could not seem to get it right “manually” and I was just exhausted trying to figure it all out.  Also,BEFORE beginning NV, suddenly my child began having loose stools!  We knew this was not healthy either.  We  went to a GI specialist for this and they could find no reason for it.  He would act constipated but then when he moved his bowels, it was nothing but loose stools.  I was about to lose my mind.

November 2011:  Discovery of Nutriiveda Original

Probiotics seemed to help a bit

I do not know exactly how I found the Cherab Foundation, except to say I was probably researching speech disorders and found the word “apraxia.”  That led me to the Pursuit of Research Page and to the Cherab Foundation where I began to ask questions on the public group page.

I showed the Pursuit of Research website page to some other moms doing biomed.  We were skeptical of course.  How could ONE thing do all of this?

“Oh no, curcumin, high in phenols, high in oxalates. BUT, nice amino acid profile and vitamins all derived from food.  This is food.

 Hearing the success stories of so many other parents, including Lisa’s son, is what finally did it for me. ”

After reading about all of the successes with NutriiVeda (the original formula) and seeing that many people in the group had children with autism, I decided to take a chance and try it.

This was when I spoke to Lisa Geng on the phone.  After I read about the effective use of NV original and fish oils, I stopped all of my son’s supplements except for fish oil – I switched from cod liver oil to ProEFA oil.  At this point, I had already decided that my son needed good nutrition, and that all of the supplements I was trying to get into his body did not necessarily mean that he was able to use them.  And I saw no real lasting improvement with any of them.

The first day I gave my son NutriiVeda original, I had to give it to him through a syringe since he really would drink nothing but water and would sip nothing through a straw.

Two days after beginning the Nutriiveda oriiginal, my son wanted to see Finding Nemo, the entire movie.

This is significant because he could never sit through the whole thing, and there seems to be a pattern in him that when he has a cognitive leap, he wants to watch Nemo for some reason.  And, he could tolerate the noise!  He wanted the volume UP.  I found him sitting by the speakers on his computer, his ear cocked, listening intently.

By day 4 on Nutriiveda, I noticed significant changes in my son.  He seemed happier.  He actually said, “Tick” for tickle.  He said, “No.”  His appetite increased.   He had not moved his bowels.  I was concerned.

By day 5, my son did move his bowels and it was more solid for the first time in months.

There were ‘black dots” in the stool, like he was detoxing.  He wanted to play his music on his CD, he was not holding his ears.  He wanted me to bounce him.  Somewhere in these early days, my son passed something that looked like a parasite.  Since then, he has had formed stools.  He also goes on his own now, without any suppositories or enemas or drugs and is just now catching up on his potty training.  It’s a miracle!

There was the already documented common experience of defiant behaviors after about the third day on NutriiVeda.  I even tried to up his NV to the recommended dose of 4 scoops for a 9-year-old boy and he at first became very tired.  Then we endured a few days of terrible behaviors, tantruming and just being defiant and naughty. (see NV original temporary side effect page here)  He was emotionally labile and easily frustrated and a little more hyper, not wanting to go to bed until late!  I backed the dose back down and began gradually increasing it for him to try to minimize these common side-effects.

For my son, it is important to not run out of the NV original right now.  I don’t understand completely how NutriiVeda works, but it appears to somehow be normalizing my son’s body.  I do believe that he had some kind of die-off probably viral, bacterial and/or fungal because of the behavior and then the normal bowel movements after that.

Not only is Liberty improving steadily for the first time and without experimental harsh treatments, but I’m saving a ton of money. I would say with supplements, special food, and doctor’s calls or visits I spent over $700 a month. So for less than $200 with shipping for 4 canisters a month which is Liberty’s dosage now for his age, even with fish oils added on which may be another $25 to $50 a month,  we spend a WHOLE lot less.

One DAN doctor in NY charged us $350 just for phone calls.  One in Destin Florida was $150 but his supplements and then some special up front labs were expensive.  All I know is everywhere I went something was going to cost us at least $200 just for the visit!!  And Liberty has insurance!  These docs do not take insurance because it’s all experimental.  Besides, fish oils and Nutriiveda original are not only therapeutic for Liberty but they are healthy nutrition from foods, and that is such a relief for us knowing his diet has been poor for so many years.

It is difficult to believe all the positive changes in Liberty in just two months

It is hard to believe that we are barely 2 solid months in on the NutriiVeda (day 67) and we have noticed huge changes in our child:

• Increased pretend play,
• Off seizure medication and seizure free,
• A desire to engage in tickle games and actually seeking us out for these,
• Interest in books,
• Normal elimination,
• Increase in speech attempts,
• Increased appetite,
• Needing to take his animals or little people with him in the car,
• Being able to set up some tracks in a train set.
• My son has about mastered the computer as far as watching shows he likes on you tube and has almost gotten the double click down.
• I also see more facial expressions in him.
• He seems to now recognize and understand other’s facial expressions.
• He has greater eye contact.
• He has less stimming movements, although still has some visual stims.
• He loves his music more.
• He is now drumming on the big drum set from time to time.
• We have had comments by the teacher at school that he appears to be comprehending more.
• He is more apt to point now, which he never did.
• He uses his pictures more readily.
• He also looks healthier and has filled out.  He is tall and looked painfully thin for so long.  Now, there is a noticeable difference in his overall appearance.  My family thinks he looks healthier.  We don’t buy “slim” jeans anymore.

And again wonderful is the fact that he has now been successfully weaned off of his seizure medication for 25 days with no signs of any more absence seizures.

Is Nutriiveda Creating a Paradigm Shift in Treatment of Seizures 

I believe my son has begun to move once again through his milestones.  I allow him to play with baby toys, sing to him, and generally do things a toddler would do — playing in water with cups and playing in sand, soaking him in sensory experiences, “reading” lift-the-flap books, and just letting him go back and have a do-over of his babyhood.  Whatever it takes, I am confident for the first time in years that we are on the right track.

I think nutrition is the missing piece in my son’s illness — and I do not pretend to understand how it works. My son loves it.  He is now drinking it through a straw so it must make him feel better.  He is still a picky eater but is willing to try more things now and that is new.

In addition to the progress so far, I have the peace of mind that I am at least giving him good nutrition each day, especially if he does not want to eat much.  I am happy to be part of a supportive and caring group of families, too.

“I know when I talk about the changes from Nutrivieda original it sounds like magic, but it’s food, and the proof is in the result.  It’s in the eyes of my child! 

The only regret I have about NV is that I wish I had known about it sooner.  For only about two months on a product to see these kinds of changes, is nothing short of miraculous to us!”

Written by Liberty’s mom Kathryn Johansen  

Even though the above story about Liberty was written on January 1oth, 2012 there are already updates since this page was published!  Kathryn will continue to share more!

Lib in his headphones!

January 10 2012

“My son just got home from school. His teacher wrote that he went to the computer and used the touch screen independently AND PUT HEADPHONES ON HIMSELF. Now, yesterday I just had a conversation with her about how Liberty used to use headphones to do a listening program like you see on my page. But he has not wanted to wear headphones in a long time. Now suddenly today, he put them on independently??! This is what I mean by startling changes.

I also got a message home from the teacher today that Liberty is attempting to communicate with everyone who walks into the room. Yay!”

January 13 2012

“He comes up to me and is pretty intensely present and attempts to say ‘wuh…..” like he is just trying to hard to get it out, and then he pulls me somewhere. His primary form of communication since he did not pick up signs very well has been a book of pictures

I made in a notebook and he uses those at school, too. Lately, he wants nothing to do with the pictures, he is trying more to say something”

January 14 2012

“Another update: Lib actually came to get me for something yesterday and tried to say, “Come!” I have tried to get him to say that instead of pulling me for how long I don’t know. It came out, “Gum!” But that is what it was. And everything I said to him he understood without me gesturing!!! “Pick up that towel and sit down and put your pants on.” It’s really big.

We also played these games where he would respond to me by just a subltle look on my face or raising an eyebrow, that meant the tickle game was on and he would run after me to tickle me.”

Jan 20, 2012

I have an exciting update this morning. Last night I suddenly heard liberty playing on his computer. He figured out how to turn it on and DOUBLE CLICK on the icon he wanted on his desktop. He was just sitting at his desk cruising his favorite videos. All by himself.

He has come to get me to help him double click for a long time. Then this morning, I decided to try to get him to play games on the computer. He was never interested or present enough to do this in the past. I went to PBS kids which by the way have wonderful games. Well, folks, he played 2 games like it was no big deal. The first one … now keep in mind these are VERY elementary  but my child has a hard time to coordinate so much just to focus and do these. The first one was putting some bunnies in the correct order. They had to be pink blue pink blue. I did not even have to tell him. He clicked on a pink bunny and put it into place, clicked on a blue bunny next and put that in the right order too. So, I got another game up on the screen and this time it was to put the missing pieces of a water hose in the right places. He got those correct too. Stunned!

January 23, 2012

Today, Liberty watched Sesame Street! He has never done that before. I also noticed he has stopped mouthing objects. He used to do that constantly – on the handle of the grocery cart (ew!), walls, you name it, he had to touch it to his mouth. It was maddening. Did it all his life ever since he got off of his pacifier and he was addicted to those too. So, that is O V E R apparently (9 years of it I guess you could say!). My husband noticed it too when he took him to a hockey game. Oh — did I mention he went to a hockey game and stayed the ENTIRE time and did fantastic? I can’t say he was entirely interested but my husband said he was very “good” looking at what was going on and not whining, crying or sticking his fingers in his ears and wanting to go. The salt craving he has is gone.

He is hyper vocal, like he is trying out sounds, sometimes sounds like singing. And, (I try this one out now all of the time), I can call him once and that child comes to me and engages me. Used to be you could call until the cows came home and he would not budge.

Oh, let’s see – he points or picks things out for me without prompting. Wow, that’s a lot in a few days huh? Did I mention he is listening intently to Thomas the Train CDs in the car…..

February 21, 2010

An update on Liberty: We are a little over 3 1/12 months on the NV. I have Liberty on a 3 1/2 scoops. I found that dividing the dose, so I give 1/2 in the morning and 1/2 when he comes home from school in the afternoon works better for us, i.e., we don’t have as much adjustment with any die-off or behaviors as we did in the beginning. It is hard to get it in before school though I have to say.

I am happy to report my boy is becoming more and more “there.” He is acting very typical. The other day he was pouring water from the bathtub onto the floor. I said, “Are you being naughty again?” He said, “Nah-ee.” He is answering us more now with “nah” for no, “yeah” for yes, and “okay” – can’t get him to repeat things on command but they pop out spontaneously, sometimes sounding correct like when he said “tickle” perfectly and “okay.”

He is doing a tickle game now that is hilarious. He tries to engage me in play.

He understands so much more now. While in the store the other day, I asked him to get me some kleenex and put it in the cart. I did not point or prompt, in fact we were walking down a long aisle and it’s noisy in walmart, right? He went to the kleenex section and picked out a box and threw it in the cart. I have lots of examples of him hearing me ask him to do something without any gesture or effort on my part and he does it.  When he wants something, he still pulls me but he tries to talk now.

He is like a small child when they constantly look up at you to see what you are feeling or saying. He tries to get me to ask a question so he can answer it by working my lips with his fingers!! And the range of facial expressions is incredible!!

He is so funny, he makes me laugh, and we SHARE laughter and jokes now. He can react to just my facial expressions to him. So, I am really happy!!

Can’t wait to reach 4 scoops.

Oh, wait, there’s more….the school is ordering the proloquo2go and an iPad and an iPod to begin using with him because they can’t make pictures fast enough for his PECS type book.

My son knows so much more than we all realize I can’t wait to see where that takes us. But, I think he is going to get speech, I really do.

I am wondering now that he is wearing headphones independently, if we try the listening program again (for auditory processing) or Fast for Word? His IEP is one week from tomorrow, so I will let you know what goes down then. I can’t wait to hear the updates on his progress. His report card was very encouraging as he is doing all new things. He is only on ProEfa 1/2 tsp + 1 cap of ProEpa and his NV. Only drawback that I can see if you call it that is his appetite has decreased – but he is still filling out, he doesn’t look emaciated or anything and he’s a tall boy.

GREAT JOB LIBERTY!  And since you love Thomas now…

UPDATE March 18, 2012 

Prayers for Kathryn Johansen: She wrote me 4 days ago to let me know her father has health issues which is very stressful (but the good news update about Lib from 4 days ago (excuse typos- Kathryn typing with one hand in pain)

“Lib doing great though, not up to 4 but trying to get there. More like a “real boy.”)

Then just yesterday she broke her elbow and her toe tripping over an open dishwasher…she just missed the knifes!!!!! (on a good note she missed the knifes thank GOD -and also got Lib up to 4 scoops a day these past few days and he’s doing amazing!!) I asked her if she has help and she wrote back and said to share here and let everyone know she’ll be back here to share soon!!! Excuse any typos from her -she said it’s difficult to type: “family helping -tell everyone lib on day 4 of 4 scoops doing great!!!! back when I get a blessed cast tx for ur support! no pt not a bad break very banged up fell hard on open dishwasher…………..just missed the knives…..my feet went out from under me while going towards kitchen slipped and was airborne very painful!!!!!!! toe still broken taped and in a flat shoe i love lortab prayers accepted lol

March 21, 2012 (Liberty has just been raised to 4 scoops!)

“i am thrilled lisa – and we are hearing some words and he is trying – he said hello perfectly this week thats a new sound for him!!!

teacher called to give me a head’s up on lib – she told me she has NEVER SEEN a child so present and totally here now – that he is enjoying his newfound control – he provokes people to see what they will do – that he has facial expressions and can now read other’s facial expressions -

they are getting his ipad and proloquo2go tomorrow – my son is refusing pictures – they said they need a new game plan because my son is now fully present and aware – she said the reason why he throws toys is because he likes cause and effect and that we need more cause-and-effect type toys and games  he will do something he is specifically told not to do then look right at u like,”what are u ging 2 do about it toots?”

i have died and gone 2 heaven!!! my son is morphing into a little boy present in the world

makes the arm pain seem like nothing  4 scoops baby, ‘s all i’m sayin

btw – got a bigger splint on my arm; have an avulsion fracture they HOPE i dont need surgery – i need everyone to send me some healing energy to heal this thing the ligament pushed a piece of bone out – if it migrates i have to have surgery and a screw – ig it stays where it is it can heal –  all i can think about is taking care of my boy

tx x o ”
kathi

UPDATE April 13, 2012

“Lib started NV November 1 (started with a small amount and very gradually worked up)  We are now on 4 scoops and will hit the one-month mark of 4 scoops this Sunday. It is now easy! Lib drinks it through a straw – 2 scoops in the morning and 2 when he comes home.

We just had the best IEP meeting we have ever had. I sat back and basked in the reports from the speech therapist, OT, teacher, and liaison (sp?). They spoke of how we are in a completely new place as Lib is attempting more communication, is so alert and present they are all shocked by his progress.

The teacher even acknowledged his NV as playing a possible and probable role.

His report card talked of “multiple advancements.” Lib is playing with peers, responding to facial expressions and has facial expressions.

Words are starting to come – slowly but he is attempting more and more – we just got the Ipad which he loves. Have not gotten the proloquo2go on it yet but that should be next week.

His sensory issues have changed – he is now able to wear flip-flops! He can use headphones again – ear sensitivity is gone. In fact, after the IEP meeting we went to his classroom because my husband wanted to look at the headphones they were using. I was worried about disrupting Lib’s routine.

He used to hate it when Mom showed up. This time, he smiled right at us, got very excited a proceeded to SHOW OFF for us by going to the computer, putting on the headphones, and working on the computer program independently!! When we left he waved bye – no meltdowns.

Everyone we spoke with including the PE coach said he is doing phenomenally well. The speech teacher said we now need to work on lots of imitation with him.”  ~Kathryn

If you want to wish her well, and also congratulate Kathryn on Liberty’s progress so far, please share in the comment section below!

Is Nutrition Solving The Autism Puzzle?

Antivirals Drugs or Food?  The Answer & Before and After Videos

Is Nutriiveda Creating a Paradigm Shift in Treatment of Speech Impairments?

Autism Apraxia Road to Recovery, Before and After Videos

Is Nutriiveda Creating a Paradigm Shift in Treatment of Seizures?

Nutrition A Paradigm Shift In The Treatment Of Chromosomal Disorders?

Letter of Thanks from the Parent of Two Children With Profound Special Needs

Epigenics Through Diet Holds Promise For Health, Treatment For Autism, Apraxia And Other Conditions

Vincent Age 8 Lilymarie Age 4

I have two children with multiple diagnosis including autism, apraxia, seizures disorders, as well as a heart and brain congenital disorder.

I am here to tell all there is so much hope no matter how bleak things may appear!

My son Vincent today is 15 years old, and my daughter Lily is 10 years old and they both finally started to blossom in their abilities about a year and a half ago when we started them on something called Nutriiveda. I know you probably don’t know what that is, I didn’t either. I know you are probably also skeptical, I was too.

I want to start off by sharing that everything we do is with our children’s many doctors. My children’s neurologist told us after just three weeks on Nutriiveda to “keep giving it to them” because he saw a change in them from the previous appointment.  Below I will share the remarkable changes in both of my children.  I hope by sharing my story I can bring hope to others who are in my situation.

About my son Vincent who is now 15 years old.

When my son Vincent was born 15 and a half years ago, our journey as “parents of a Special Needs child“ began.

When Vincent was born 3 weeks early due to a defect in his left kidney called hydronephrosis, we had no idea what was ahead, but didn’t take long to find out more.

A few hours after he was born they told us that our newborn son Vincent in addition to his kidney defect, also had a heart defect,  something called ventricular septal defect (VSD) which is also known as a “hole in the heart” VSD is a congenital heart defect, and Vincent didn’t just have one hole in his heart, he had two. Shortly after this diagnosis, Vincent was transferred to a different hospital NICU.

My husband and I were of course numb, concerned, but strong. We said “OK, we’ll get through this” We shortly learned we were dealing with more than just a kidney and heart issue in our newborn son.

Three days after being transferred to the new NICU, his doctors came in and told us that Vincent also had a brain defect, something called Agenesis of the corpus callosum (ACC) which is a rare birth defect (congenital disorder) in which the structure that connects the two hemispheres of the brain (the corpus callosum) is partially or completely absent (in Vincent’s case it was completely absent) and there was no way of predicting how he would be affected by this later in life.

Our whole plan for our son was all of a sudden unknown and the dreams we had, I guess the dreams that all parents of a newborn would have, were now different. It was early on in his life that we also first learned that Vincent had abnormal EEG results, but that was prior to the Grand mal seizures, and Genetic testing found nothing.

Vincent Age 7 months

Of course the first year of Vincent’s life there was way too much time spent in hospitals and doctor’s offices sadly. But of course we did all that could be done to help him, but by the time Vincent had his first birthday party, he was profoundly globally delayed.  It was at this point that he was put into Early intervention through the state of New York.

About 2 years after initial diagnosis Vincent’s kidney and heart defects were primarily resolved.

At age 2 years old, Vincent he was put into a pre-school program for special needs children in our town but even after 2 years of therapy at this point he was still profoundly globally delayed in all areas. He was nonverbal with severe global muscle weakness, motor planning and balance problems compounded everything else. In addition Vincent had trouble following even a simple 1 part command.

Even though Vincent had abnormal EEG readings all his life, it wasn’t until he was 5 years old Vincent started to have Grand mal seizures, Once the seizures started, Vincern was put on his first of many seizure medications.  After Vincent was diagnosed with Grand mal seizures, shortly after that he was also diagnosed with apraxia and PDD-NOS.

We stayed hopeful, but it was frustrating. Vincent each year would make painstakingly slow gains, but by the end of the year there were still profound global delays in relation to his peers. It seemed no matter how much therapy and no matter how much work, it was difficult to find a way to help Vincent make progress quicker. He seemed to be falling further behind with time in spite of his limited progress.

I have belonged to the Cherab Foundation for awhile and while I didn’t know Lisa Geng at all personally, I had read her messages for years online at a support group, and this may sound strange but it felt like I knew her. I did trust her as I knew how much time she took to reach out and help parents over the years. I liked the book she wrote The Late Talker. But I have to admit though, when she started writing about something called Nutriiveda I was very skeptical. I kept reading message after message of whatever this stuff was helping all these different children in our group, but I remained skeptical. At one point my husband said “Just try it. What do we have to lose?” but I remained skeptical. Being from New York I don’t consider myself to be at all a gullible person but as time went on I talked to my husband who was already on board, got approval from our children’s doctors, and I nervously placed an order for Nutriiveda (original) I have to admit at that point as skeptical as I was, I started to become hopeful.

We started Vincent on Nutriiveda original February 2010. I wasn’t the only one shocked by the results which happened way quicker than I ever expected! Progress and quick were two words that never went together for Vincent! When Vincent started taking Nutriiveda original (or NV original) the positive results were within 3 (THREE) days being noted by not only ourselves, but the school professionals (who were not aware our children were now taking NV).

Here’s a partial list of changes from my notes and from his teachers and therapists.

Willingness to participate; His teacher wrote in his communication book that Vincent raised his hand today to hold the flag!

Improved communication -without augmentative devices! Vincent started talking! And not just single words but he started saying a number of 2 and 3 word phrases.

Most amazing…Vincent’s neurologist had an EEG done and the results were normal for the first time in his entire life! Vincent had never had a normal EEG.

Due to the normal EEG and lack of seizures (you can read my children’s updates about seizures here) the doctor decided to start to wean him off his seizure medication after being on them for 9 years. My husband and I couldn’t be more thrilled!

This is part of an email I sent to our online support group at this point

“My son Vincent will be off his seizure medication Tegretol in 3 weeks! He has been on this medication for 9 years. I am thrilled for him to be off of medication due to the side effects. This week he went on a school field trip to Atlantis Marine World in Riverhead. He was with his teacher and speech therapist most of time.

They were ecstatic that he was talking the whole day, saying “what’s that?” and pointing! He’s a teenager and they had never heard him talk before! He also said “come over here” and “where we going?” they told me! It’s so exciting! He even responded to something that was said over the loud speaker!!”

Vincent~Age 15

Vincent has now been off his medication for 1 yr and 1 month and seizure free!! He continues to have rapid progress in cognition and speech.

For example about his physical strength. Prior to being on NV original even as a teenager, Vincent didn’t have the strength to pull open the refrigerator door by himself. Shortly after us starting him on NV original, he was able to open the refrigerator door by himself with no help, and pull out a carton of milk (even if it was full!) and again without any help from me or my husband! This may not sound like a big deal for a 13 year old, but Vincent had severe weakness issues and just didn’t have the strength.

Prior to being on NV original, as a teenager Vincent was not able or carry out more than a 1-step direction. Now he can follow multipart directions!

Prior to taking NV original Vincent wasn’t able to walk and carry anything as he had extremely poor coordination and balance issues. Quickly after being on NV the fact that Vincent was able to walk and carry his toys or other objects was noted by all!

Improved focus, which was noted by his school professionals as well.

Also, I also noticed that my son Vincent started to multitask after a few months on NV original. For example, he used to drink something and sit or stand in one place, but now he walks around with drinks or finger foods, also holding something in one hand and throwing something out with the other.  He used to put down the one thing first and then do the second thing. Not anymore! Now he is doing more than one thing at a time and it’s wonderful!

But it’s funny out of all the remarkable progress Vincent has made, what makes him the most proud is that for the first time in his life, he can jump slightly and lift BOTH his feet off the ground!

About my daughter Lily who is now 10 years old

When Vincent was 4 yrs. Old we were blessed with a daughter, Lilymarie. She was full term and a normal pregnancy. We had all the testing done including genetics and MRI, nothing was found. We breathed a sigh of relief.

But at 3 months old she had to have eye surgery for Exotopia in both eyes. At age 1 she was not

hitting her milestones, so evaluations were done and she was put into early intervention. Also she had a second eye surgery for Esotropia in both eyes.

Lily was also globally delayed in physical and cognitive areas. She also was a tiny little

Lilymarie Age 1 year

girl. She had no words and did not walk until after 2 years old. She started in a special needs pre-school program where there was limited progress of any sort.

At age 5 she was diagnosed with apraxia, PDD-NOS and Epilepsy. She was having 20 plus absence seizures a day and was put on Depakote.

After Lily was put on seizure medication, she then went into what I call “ the fog” What I mean by this is that Lily could be in the room with you, but it was as if she wasn’t there outside of her body. She wasn’t even following 1 part commands..

In spite of the doctors being aware of Lily’s fog, she was left on Depakote for about two years. At age 7 finally Lily was taken off Depakote and put on another seizure medication called Keppra. On Keppra, Lily she was slightly more aware, but still not right and still unable to follow a 1 part command..

A year later at 8 years old, Lily developed a sleep disorder where she was waking up 5 & 6 times a night, every night for almot 8 months! Lily’s tiny little body was put on yet another medication Clonodine. The Clonodine didn’t help much as she went from waking 5 to 6 times a night to 2 to 3 times a night. It was not an easy time for anyone in our home!

Like our son Vincent, in February 2010 we started Lily on NV and again didn’t know what to expect but hoped for the best.

Lilymarie~ Age 11

The FIRST night Lily slept through, the ENTIRE NIGHT!! In the morning, my husband and I were up and in shock that she wasn’t. Thankfully once the doctor was aware of this, he took her off the sleep medication Clonodine within a week.

Before NV, like Vincent, Lily was essentially nonverbal, and in her case non responsive. Just 1 week of taking NV, Lily said “Pop-Pop”, “pretty”, “my brudda” in school and the therapists were noting increased focus and awareness.

Lily’s teacher who was aware that Lily wasn’t following even 1 part commands prior, and who didn’t know that we were giving Lily NV original, was shocked that all of a sudden Lily started not only following mulit part commands, but as she wrote to me in the communbication book that “I would be saying something to an class aide and asking her to do something for me, would turn around and Lily would be doing what I asked.” This was incredible!

“The fog” has been lifted. She is so observant that she knows what’s going on in the next room now! Her receptive language skills have surged as well. We are so excited about the dramatic changes in our beautiful daughter.

My daughter Lily, can now for the first time in her life hold her cereal bowl up in the air and eat her cereal while watching TV! (well the TV part is not that great but they have to have some vices too!)

Both our children have met goals in their IEP and new goals have to keep being set for them which they are meeting. It’s very exciting for my husband and I to finally see such leaps of progress in our children.

We are aware that Vincent and Lilymarie still have a long road ahead of them due to their various diagnosis and profound global delays for the but the progress they have both made in this past year and a half far surpasses the progress all the years before combined!!! It is quite amazing.

I have to admit I am jealous of the parents who get to use NV original early in their child’s journey. I wish it was around ten years ago when my children were younger but I am thankful that at least I discovered it for my children when we did over a year ago. I truly believe that this will continue to help them reach their goals.

So in conclusion, my husband and I just want to express our gratitude for Nutriiveda original, it’s helped our children dramatically, and changed our lives!

I hope by me sharing our journey, that this helps your family too, and Happy Thanksgiving to you and your family!

Dawn Falley (feel free to email me with any questions)

Video Updates

I’ve been wanting to give Vincent Fish oils for the longest time now since he’s been on NV.  We had not been able to get any fish oils into Vincent and we just tried ProAlgen which is an algae Omega 3 formula that is supposed to have no smell or taste.

Sorry for all the laughing in the video but we knew we were hiding the algae in his drink and we thought we knew what was coming -that he wouldn’t drink it. Unfortunately, I have a collection of bottles of all kid friendly & other types of fish oils in my cabinet that he will just not take.

1. He does not swallow capsules &

2. He has bionic taste buds & detects it in everything I try to put it in. So then I am also wasting food as well!

IT WORKED!!!  

Also, at the end of the video you can hear Lily say “Turn Off” as she is pointing to the video camera! She has never said that before!

Vincent has come a long way from where he was before Nutriiveda. He had a heart & kidney defect at birth & has a congenital brain defect (Agenesis Corpus Collosum ) Also had seizures from age 5, but is seizure free & went off his medication over a year ago. Also, he had a normal EEG for the first time after being on NV. We, teachers & therapists and neurologist note the improvements in areas of speech (use of more words & length of utterance) Comprehension, focus on tasks & following directions, sense of humor, Coordination & Physical strength.

If you want to congratulate or have any questions for Dawn Falley, either leave a comment below or email Dawn

See also 

IS NUTRITION SOLVING THE AUTISM PUZZLE?

IS NUTRIIVEDA CREATING A PARADIGM SHIFT IN TREATMENT OF SEIZURES?

NUTRITION A PARADIGM SHIFT IN THE TREATMENT OF CHROMOSOMAL DISORDERS?

AUTISM APRAXIA ROAD TO RECOVERY BEFORE AND AFTER VIDEOS 

EPIGENICS THROUGH DIET HOLDS PROMISE FOR HEALTH, TREATMENT FOR AUTISM, APRAXIA AND OTHER CONDITIONS

BASIC INFORMATION ABOUT NUTRIIVEDA ORIGINAL 

Christopher, a real champ, will be 7 November 4th 2011

Christopher is going to be 7 years old Nov. 4th. We have struggled with his speech since he was a toddler.

We were told from age 3-5 that he just had delayed speech because of being the youngest of 4 children. Then I was able to get him into his current SLP in May 2, 2011

After seeing him a number of times and testing him he finally came up with the diagnosis of apraxia of speech.

When I started to read everything I could get my hands on, this made perfect sense.   It was very hard for me when he was finally diagnosed. I felt so much sadness and guilt, even though I struggled for three years to find answers for what I felt was so much more than developmental delayed speeech. Now I can look back and there were so many signs….. but I just couldn’t find anyone that had the experience that could find the correct diagnosis.

We still do not have schools in our area that have any experience with apraxia, they all think he can learn like all the other children and he was going to be held back in kindergarten. Up to that point he has never acted or felt “different”, but as he kept falling behind the other children in his class he started not wanting to go to school and became very angry all the time. So I made the committment to homeschool him, he is doing a mixture of kindergarten and first grade work. He loves being homeschooled and is doing wonderful!!

Since his diagnosis of apraxia in May of 2011, I started him on fish oil and was amazed at the difference I saw in him! Then in  I started NV original on September 10th, 2011, and felt so blessed by the positive changes that we have seen, and continue to see.  Below is a diary of the progress we’ve seen so far, as well as the regression when we ran out of NV original (but mainly the progress!!)

September 12 2011

Day #2 with success taking NV!! WooHoo!! We went to speech therapy today and I swear he was much better at paying attention, maybe I am imagining it?? But I swear I can feel wonderful things in our future.

I do not have a video recorder, unfortunately. But I am seriously thinking about getting one, even though I didn’t get him on video prior to NV am sure the changes will still be so obvious.

September 19 2011

Day 9 on NV, we just moved up to 3 scoops yesterday. Today during our homeschooling time I gave Christopher a page to look at about short vowels and told him I would be right back as I was getting a drink. I came back in the room started to explain what he needed to do…. he immediately handed me the paper which was completely done (front and back) and done 100% correct!!!

He also worked on some single digit additilon, which he has been doing for a couple of weeks now, but this was different as it was layed out horizontally instead of vertically. He took the paper and had it done in about 2 minutes!!! No giving up or being upset because it was a new or different way to do it…. he just did it and again got it all correct!!

We made our first lap book, he went to a fair last Thursday and we made it based on that. I could not believe the detail in the pictures he drew. His coloring is amazing and neat. Just as recent as this last May it was extremely messy. He never stayed inside the lines and hated coloring. I think it was just so hard for him that he didn’t like it. I always had to ask him (tactfully of course) what he had drawn….

now there is no doubt at all. AMAZING is all I can keep saying!!

I also have 3 other children at home son-12, daughter-11, son-9. They all go to a private school due to our public school being TERRIBLE to say the least. They are way ahead of the public school systems, my 12 year old scored college level in some areas on his standardized testing.

My daughter scored high school level in many areas, and my 9 year old also scored 8th grade level in many areas. But I have always worked with them as well and we do about 1-2 hours of homework each nite!!!

Leap Frog videos are an excellent source as well as doing simple addition with rocks, blocks etc. I also always worked with them early on site words and found it gave them an edge when they started reading. And as silly as it may sound…. some of our songs we sing are the vowels, days of the week, and months lol.  Kids are so good at memorizing things.

Christopher hasn’t really been able to do most of these things like the others,.. until now.

But I kept doing it with and around him all the time. I guess it really was sinking in, he just couldn’t share what he knew. I can’t even begin to imagine how frustrating that must have been for him. I can’t wait until he is able to go back to school and totally amaze them!!

I must admit I really enjoy working with him and seeing all of the amazing things he is able to do every single day now!

September 20 2011

Day 10 on NV Today we got home after taking the other kids to school, and Christopher asked if we could learn about the “Eiffle Tower and that other big building in New York”, “which one is bigger mommy?” “who made them?” So I asked him which “other big building” he meant. Then he said “I know the name mommy it is the Chriser Building” “can we look on the internet?” I finally figured out he meant the Chrysler Building! Well who am I to hold up such progress?!?! LOL

I didn’t even know he knew about these buildings, and he kept amazing me by asking questions about the Statue of Liberty too. So we changed what our history lesson was going to be for the day…..George Wasington will have to wait for another day. LOL  We went on the internet and found all the answers to his questions and more.

He  asked if he could mix his own NV and pudding this morning. Since it was such a struggle to get him to take it, and now he reminds me sometimes, I told him he sure could. I measured it out for him (1 1/2 scoops in the morning and another 1 1/2 scoops in the evening) and he mixed it into his pudding and ate all of it. Then put his dish in the sink and filled it with water.

I know that sounds silly, but some days it used to be such a struggle to get him to help pick up after himself at all. He didn’t even get himself dressed until about a month ago, we are working on tying shoes since that one was something he wouldn’t even ever try or listen to. He now goes in and washes up, brushes his teeth, and even gets in a chair and looks in the mirror and brushes his own hair!! I go to bed nights now and can’t help but wonder what tomorrow will bring.

 October 12 2011

Day 32…. I feel like I am so out of touch, my computer hasn’t been working. But I am back and have SO much to share!!

Since my last update on Sept 20th Chrstopher has advanced in leaps and bounds with his speech therapy as well as the amount he has learned while homeschooling!! He now can read approximately 60 SIXTY words and is doing wonderful in math and science. We went to his speech therapy today and were told by his therapist that he felt he really couldn’t reasonably find a reason to keep in in speech for much longer!!!

He believes if I keep working with him like I have been that he will be just fine!!!! I am so very happy, but also a little apprehensive. I am afraid that I will not provide him wite needs….. then I stop and think of how he has onlly been getting therapy (long horrible insurance story) once a week and I have been doing the rest with him. Every day I see more and more confidence in him, it is such a wonderful experience!!

I think it will be a while before he is ready to enter back into the school system, at least the rest of this school year. We will just keep taking it day by day, but we now have the taste of success and are we ever going to eat it up!!! I can’t say enough for all of the help I have rec’d from Lisa and am so grateful for what NV and fish oil have done for our little man. It is truly amazing!! We will definately continue to give Christopher both. Now my two other sons are asking if they can start taking it as well.

 October 13 2011

Day 33: Today we were driving home after our two older children had finished football practice, it was quite foggy out and the lights from a couple of larger school parking lots gave off a rose colored hue. Christopher asked me “mom is it technically day or night? what is making the sky that color? is it the sun or the moon that is doing it?” I couldn’t get a word in he had so many questions!

We have been studying weather for science and Christopher is doing really well. So next he says “mom we really need to study more about the sun and the moon, would that be okay?” Okay? It would be wonderful! Especially since such a short time ago he couldn’t have ever even asked me all of those questions. Especially without me asking him numerous times to repeat himself because I couldn’t understand him, and then he would have gotten frustrated and just waved his hands and said neburmine. I notice that other children are rarely asking him to repeat himself, this must seem like such a relief to him!

Along with reading all of the words that he has learned, he now will try to sound words out and spell them if I ask him to. He really does a wonderful job

We were in the grocery store the other night and he looked at the name tag on the baggers shirt, he then looked at me and said “hey mom his name says Jon just like my brother Jon, it says (and he read the letters to me) J-O-N” I imagine the cashier and bagger thought I was a little strange, when I got all teared up and had a huge silly smile on my face as I told Christopher “you are absolutely right!”

We had a family member visit, she came up to me and said “this has to be the first time that I was able to sit down with Christopher and actually understand every word he said to me!”

Also we went to our chiropractor  and when he asked who wanted to be first Christopher stepped forward and said “me please” This is a child that would not have ever done that before, he even did the same thing when I took all four children to get their flu shots!!

Those are the things that you just can’t ignore!!

October 13 to 26th OUT OF NV original!  Regression!

I started him back on 1.5 scoops for a dqy, increasing back up to 3 scoops a day with 1/2 scoop increases per day. Since we were out for apx 8-9 days I started back slowly. The first time he started NV he had tummy aches, no problems this time. I did notice while we were out he seemed to constantly have the sniffles, he also chewed on everything in site! His shirt, toys, pillows, fingers etc. and that has stopped since being back on NV.

He also didn’t want to do his school work, he didn’t want to go anywhere (just wanted to stay home all the time) while off NV. His speech was definately not as clear as it had gotten to be while on the NV and his attention span was really down. At speech it was impossible to keep him focused and things that he had really mastered seemed to once again be hard for him.

Since running out it is amazing to see the changes that had actually taken place, I mean I knew he had significant improvement in numerous areas, but you really are made aware of it when it starts regressing!

October 26 2011

Day 46:  NV is BACK!!  We will see how this weeks speech therapy goes. I am sure it will be better. Now that he is back on the NV his speech is becoming clearer again.

Today I gave Christopher 6 SIX pages of math, single digit addition, and I said just do what you can but at least one page. In 10 minutes he came back over to me and handed me the papers, I figured he needed help and asked him what I could help him with.. lol he stated “nothing mom, I am done and am going to make a picture now.”

I looked at the papers to see how far he had gotten, he completed all of them and got all o them correct!!!! He is learning to add without using his adding stones (little colord stones that can be added to vases etc. that he loves to keep in a container and use for math), this was a choice that he has made all by himself.

He is learning to count up now. He has retained all of the words that he has learned to read and he is learning more every day. As well as starting t be really good at sounding out words verbally without even seeing them on paper!! He is starting to recognize patterns in numerous things; math, colors, shapes, etc.

When somehing connects he will look at me with such a huge smile and is so excited! It just tugs my heart strings and makes me so happy to see his sense of pride and accomplishment!!!

October 27 2011

Day 47:..He is a asking also back to asking hundreds of questions again, I love it! He did go through the emotional roller coaster again once we started NV back up, but it wasn’t nearly as intense as it was when we first started it and it didn’t last very long at all. I also noticed a significant difference in his sleep, it is much better when he is on the NV.

Now we are even more sure he has apraxia.  Prior to NV, he never spoke he always made noises and pointed. His frustration level was very high. And to know even now, when we ran out of NV, waiting for a shipment and only for a few days and noticing the regression I mention. His speech wasn’t as clear, he started to chew on his shirts and pillows etc., as well as his moods.

“WE WILL NEVER RUN OUT AGAIN (if I can help it)!!!”~ Christopher’s mom Cindy

October 28th 2011

Day 48:  Christopher just finished a science unit today on weather. We reviewed the chapter and then he took his test… he got a 100! He is so funny, as we are driving around he never stops talking about everything he learned.

One of his questions on his test was “what is does the weather man use to tell us how hot or cold it is outside?” The expected answer according to the text book was “a thermometer” But my little man says “well mom the book says a fermometor but I think they use computers too”

HAHAHAHA I was laughing so hard that he started laughing too. When I stopped he asked me “mom what was so funny?” PRICELESS

If you want to congratulate Christopher and his mom Cindy on how well Christopher is doing you can send an Email or provide feedback below!

 Learn more as to how nutrition may be providing a paradigm shift to improvements in academics as well as speech

Original NV is in preclinical research; Learn more

Apraxia Road to Recovery, Before and After Videos

Autism Apraxia Road to Recovery, Before and After Videos

Speech Disorder Road to Recovery, Before and After Videos

Is Nutriiveda Creating a Paradigm Shift in Treatment of Speech Impairments?

Is Nutrition Solving The Autism Puzzle?

Nutrition A Paradigm Shift In The Treatment Of Chromosomal Disorders?

The Late Talker

by Marilyn Agin MD, Lisa Geng, and Malcolm J. Nicholl

The first book to show parents how to tell whether a child has a speech delay or a more serious speech disorder.

Every parent eagerly awaits the day his or her child will speak for the fist time. For millions of mothers and fathers, however, anticipation turns to anxiety when those initial, all-important words are a long time coming. Many worried parents are reassured that their child is “just a late talker,” but unfortunately, that is not always the case. Co-author Lisa Geng was one of those parents and she discovered that her children had serious speech disorders.

Balanced with a mother”s perspective and an acclaimed doctor”s experience, this book gives parents needed guidance on:

• The warning signs of a serious speech disorder
• Finding the right therapist for their child
• Negotiating with school boards, teachers, and service providers
• Exercises to do at home with a child.

Marilyn Agin MD is the medical director of the Early Intervention Program in New York City.

Lisa Geng is the founder and president of Cherab, a nonprofit organizations dedicated to children with speech difficulties, and co-founder of Speechville. She lives in Florida.

Malcolm J Nicholl is a former international journalist, and co-author of The LCP Solution. He lives in Del Mar, California.

Reviews

References in Other Works

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The Late Talker 
What to Do if Your Child Isn’t Talking Yet 

Marilyn Agin MD, Lisa Geng, and Malcolm J. Nicholl

“Full of terrifically practical and encouraging information . . . Everyone on the team helping your late-talking child will benefit from reading this book.”

–Martha R. Herbert, M.D., Ph.D., Pediatric Neurologist, Massachusetts General Hospital and Harvard Medical School

“A definitive book for parents and professionals alike. I hope everyone involved with children reads this.”

–Theresa Cavanaugh, M.Ed., LDT-C, Co-President, Learning Disabilities Association of New Jersey , LDA Teacher of the Year, 2000

One of the most important milestones in an infant’s life is the uttering of the first recognizable word. Obviously, not all children develop at the same pace, but most infants can be expected to say “mama” and “dada” sometime between the ages of twelve and fifteen months. As these dates pass and months go by, a child who remains silent can turn eager anticipation to anxiety and fear for the parents. More often than not, the child is simply a “late talker,” but in some instances the child may suffer from a speech disorder such as apraxia, a neurologically-based impairment that needs to be identified and treated as early as possible.

The Late Talker : What to Do if Your Child Isn’t Talking Yet ( St. Martin ’s Press/April 2003/Hardcover/256 pages/$23.95) by Marilyn Agin, M.D., Lisa Geng and Malcolm J. Nicholl is a book for all parents concerned about their child’s ability to speak. The Late Talker addresses the key question: Is she/he just truly a late talker, or does she/he have a communication disorder that requires early and intensive therapy? Inside The Late Talker :

• A review of the developmental milestones and what to do if expectations are not met.

**More** 

• 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.

• A detailed review of an intriguing nutritional supplement that has achieved promising results in helping late talking children.

• 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.

The Late Talker approaches the problem from the perspectives of a mother and a doctor. Lisa Geng’s son suffered from apraxia, and this led her to Dr. Marilyn Agin. Together, they present a balanced book, filled with resources, easy-to-read charts, a glossary and an index. The Late Talker is the first book to show parents how to tell if a child has a speech-delay—or a more serious disorder—and just what to do about it.

About the Authors: 
Please see attached bios.

THE LATE TALKER 
What to Do if Your Child Isn’t Talking Yet 

Marilyn C. Agin, M.D., Lisa F. Geng & Malcolm J. Nicholl
April 28, 2003
St. Martin ’s Press
Hardcover/288 pages
$23.95
0-312-28754-2 

Please Send Two Tearsheets Of Any Review or Mention.

The Definition 

Late Talker: Term used to describe children who are:

• Eighteen to twenty months old and have fewer than ten words

• Twenty-one to thirty months old with fewer than fifty words and no two-word combinations such as “mommy-car”

• Age-appropriate (or close to it) in other areas of development, including comprehension, play, motor or cognitive skills, yet not speech

The Facts

.

• Speech and language disorders are the number one developmental impairment in children under the age of five.

• Fourteen million Americans have a speech or language disorder. An estimated 15 to 25 percent of young children and approximately 46 million Americans have some kind of communication disorder (including hearing problems).

• Speech and language disorders are the leading cause of academic failure and emotional distress.

• Communication disorders cost the United States $30 billion a year in lost productivity, special education, and medical expenses.

More Praise For The Late Talker

“Oral language—the ability to communicate needs, feelings and opinions via verbal speech—is the coin-of-the-realm in today’s society. One must be able to interact verbally with others and an inability to do so, can greatly hamper a child’s development and independence.

For most children, oral language develops quite naturally. As the child’s vocabulary and syntax emerges, he becomes better able to communicate with others and gains control of his environment. A child’s failure to develop normal verbal language can create great angst for his parents and caregivers.

When a parent has concerns about the child’s language development, she often turns to family members or neighbors for ‘expert’ advice. The counsel that is provided generally ranges from unwarranted panic to laissez-faire advice that the child ‘will grow out of it.’ Neither of these reactions is particularly helpful or effective.

However, The Late Talker by Agin, Geng and Nicholl provides useful, field tested advice for parents who are concerned about their child’s language development. This gem of a book provides an immensely readable overview of normal language development and a thorough review of the cause of language delays and disabilities. The material offers comfort and counsel for the anxious parents.

The great strength of The Late Talker is its transdisciplinary approach to the topic. Dr. Agin offers a thoughtful medical perspective on the problem and translates the related research into understandable and useful terms. Co-author Lisa Geng provides an invaluable parental perspective on the issue by discussing the emotional reactions of the family to the child with delayed speech.

The Late Talker provides an unparalleled overview of a problem faced by families throughout America. But beyond merely defining the problems, the book offers practical advice and strategies that the reader can put into action . . . today.This book belongs in every pediatrician’s office and in the bookshelf of every early childhood center in the country.” 

–Richard D. Lavoie, M.S., M.Ed., Visiting Professor at Simmons College , Former Director of Riverview School , ProducerThe F.A.T. City Video 

More Rave Reviews For “The Late Talker”

.. are coming in from the people who matter most–parents and grandparents of children with speech disorders.

Here are highlights from the first five reviews posted on the amazon.com web site:

Tricia Morin of the St. Louis Parent Extension for Apraxic Kids (SPEAK), at Scott Air Force Base, in Illinois, exclaimed, “This book is outstanding! I
started it today and have already read 100 pages. I have NUMEROUS ear marks of excerpts that I can copy for the school, therapists, doctors, family, etc. Once word gets out about this, it is going to be the ‘bible’ for the speech-impaired population. Thanks to the all the folks who contributed to this masterpiece!”

Kristopher Dylan Andrews, from Bremerton, Washington, wrote, “I ordered ‘The Late Talker’ from Amazon along with a book my developmental pediatrician
recommended to me. I received both today and after reading a bit of each I realized I only need ‘The Late Talker’ and am going to return the other and get my money back! This book has already answered so many questions and will be my best ‘friend’ during my journey to helping my son to speak. This book
covers all aspects of having a late talker including activities you can do at home to help stimulate speech. This is a must read for all parents and professionals who work with children!”

Tamara Hill from Lennox, California, president and co-founder of VOICES Association, described ‘The Late Talker’ as “a very well written, easy to understand guide for parents who are concerned about their child’s speech development.” And she went on, “I recommend this book wholeheartedly, both as an interesting read and an invaluable resource for parents who are starting their journey towards evaluating, diagnosing and treating their child’s [possible] speech disorder. Because of this book, parents will be equipped with the knowledge to be effective advocates for their late talker.”

Another reviewer from Manalapan, New Jersey, commented, “A must read for parents with children who are behind in developing speech. Early intervention, therapeutic approaches, dealing with insurance companies and school systems are all included. A wonderful book which provides numerous resources on where parents can go to get help for their children.”

And Glynda Gros, of Houston, Texas, whose granddaughter has apraxia, wrote:
“This book is a must for anyone who believes that a child ‘should be talking,’ even though people around you say, ‘She’ll catch up, she’s just a late talker.’ Everything you need to know is condensed in a wonderful, easy to read format. If you are reading this review your instincts and intuitions are working for you. This is the book you need to read first and then you
need to act.”

.

Marilyn Agin, M.D . 

Prior to medical school, Dr. Marilyn Agin received her master’s degree in Communication Disorders and was a practicing speech pathologist treating children and adults.  She then went on to medical school, and completed a combined residency in Pediatrics and Physical Medicine and Rehabilitation at New York University Medical Center and the Rusk Institute. She is board certified in both fields, and in neurodevelopmental disabilities.

After residency, Dr. Agin worked at Children’s Specialized Hospital, a premier children’s rehabilitation center, in Mountainside, NJ. There she was in charge of the pediatric spinal cord injury program and performed neurodevelopmental evaluations for infants and children with developmental disorders.

After several years at the Hospital, Dr. Agin left to join a private practice in General Pediatrics and to continue performing neurodevelopmental evaluations.  As a practicing pediatrician, Dr. Agin was a keen observer of normal development during the well visits for young patients. She would often identify children with speech and language disorders, including apraxia of speech, neuromotor delays, sensorimotor dysfunction, and children on the autistic spectrum.

She currently is the Medical Director of the Early Intervention Program in New York City, maintains a private practice. She is passionate about early referral for developmental delays and disorders and has lectured to pediatricians and participated in numerous workshops on developmental surveillance, screening and assessment.  She is a member of the New York City Chapter of the Committee on Children with Disabilities and a member of the of the Executive Council of the American Academy of Pediatrics.

In November, 1998, Dr. Agin was cited as a “Top Doc” in Physical Medicine and Rehabilitation by New Jersey Monthly.

Dr. Agin is married and is the mother of teenaged twins.

Lisa F. Geng

Malcolm J. Nicholl

Malcolm J. Nicholl is a former international journalist whose career included a two-year stint as Belfast bureau chief for the London Daily Mirror. He has written extensively on nutrition and education subjects. His most recent book, The LCP Solution: The Remarkable Nutritional Treatment for ADHD, Dyslexia and Dyspraxia , co-authored with Jacqueline Stordy, Ph.D., was published in September 2000.

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