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

“Liberty is now 10 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, GAPS, 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

Update July 7 2012

Liberty’s SLP no longer sees any signs of autism and all she sees are signs of apraxia.  Was he misdiagnosed all these years?  I don’t know but his professionals don’t believe so.  Either way I can’t focus on that now.  The great news is now Liberty is saying words and the NV continues to do GOOD for him.   Our main focus now is to help improve his speech.  It’s the best feeling in the world that I can now have a conversation with my son for the first time.

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

Some more documentation for those with autism, genetic disorders, seizures who responded to similar nutritional strategies as the research

• Is Nutrition Solving The Autism Puzzle? Two case reports of children diagnosed with severe autism who were put on NV original who are making progress for the first time.  The one child previous in addition to severe autism also had medication resistant epilepsy.  His seizures reduced and then stopped completely and he was taken off all three medications and remains seizure free.
• Antivirals Drugs or Food?  The Answer & Before and After Videos  Children diagnosed with autism previous put onto mega amounts of antibiotics which have side effects were now put on just NV original and in most cases fish oils as well, and in some cases initially showing signs of viral die off -but this is just through a nutritional strategy.
• Is Nutriiveda Creating a Paradigm Shift in Treatment of Speech Impairments?  Professional anecdotal
• Brothers With Autism Respond to Nutritional Treatment-Is This Rare? Brothers both diagnosed with autism both respond to specific nutritional methods, but only one has a rare chromosomal disorder.
• Apraxia Road to Recovery Before and After Videos
• Autism Apraxia Road to Recovery, Before and After Videos  Two children in the family, one diagnosed with autism and one diagnosed with apraxia both respond to NV original and fish oils.
• Is Nutriiveda Creating a Paradigm Shift in Treatment of Seizures?  Various case reports of children, teens and adults, most with medication resistant epilepsy, who once put onto NV original their seizures reduced and then stopped, medications were lowered and then eliminated in almost all cases.   Once NV original was stopped, even after being seizure free for a year, the seizures would return typically in about a week to three weeks off.   This is the only case where you don’t want to stop NV original, but in most cases with autism and apraxia, some can stop after 6 months to a year with no regression, just lack of progression which becomes apparent in most cases after around 5 months off.
• Nutrition A Paradigm Shift In The Treatment Of Chromosomal Disorders More Before and After Videos   “Mason has a very rare chromosomal duplication on Chromosome 19. They only have 8 documented cases in the world. All but one of the 8 cases had severe physical (such as heart, kidney, liver problems, etc) and developmental disabilities. Most had severe cognitive impairment.”
• More about original Nutriiveda (NV)  A functional food protein powder that contains per serving all the essential amino acids found in this study.  The protein is mixed with well known healthy botanicals so it’s a blend of nutrients.  NV original is all natural and all ingredients are certified as foods.  All nutrients are from the food ingredients and there are no drugs, stimulants, supplements, and tested free of all heavy metals, pesticides, synthetics etc. *Original Nutriiveda (NV) had only been available through this group for about 2 years.  More info on our order page here
• Letter of Thanks from the Parent of Two Children With Profound Special Needs  Teenage children both diagnosed with autism and both with seizure disorders both respond to NV original and fish oils.
• Make A Wish That Nutriiveda Original Will Help My Teenage Daughter With HSAN type 2  18 year old with rare chromosomal disorder, seizures and severe gut disorders on central lines has remarkable improvements for an unexplained reason when put onto NV original.
• Before and After videos of another little boy, Connor, who is 3 and a half and has a rare chromosomal deletion and is missing part of the brains frontal lobe. 
• Epigenics Through Diet Holds Promise For Health, Treatment For Autism, Apraxia And Other Conditions

Why is nutrition important?  A talk by Dr. Martha Herbert