Re: NV update

February 24, 2011

OK that makes more sense now! I probably would say the same as your doctor then,

but I just have a few questions first.

1. Has your child been regular in bowel movements?

2. Are you using any other supplements or meds and if so what?

3. Have you seen 'any' even subtle changes in any of the areas listed on this

page? http://pursuitofresearch.org/pursuit-of-research

Let me know when you can. It is possible that your best bet would be to stop NV

at least for a few months and try it again down the road. What's pretty cool

about NV is that unlike most things where the younger the better to start, it

doesn't appear to matter with NV as we have quite a few seeing surges in teens

-and even in Teri's 89 year old father with Alzheimer's Disease!! Either

videotape your child or keep a journal if you do stop the next time you start.

All children should progress with or without NV, but if you take a child off and

put them back on and monitor both ways what you should see is a mild to dramatic

acceleration of progress in both areas that he's receiving therapy for as well

as areas that are a bit more abstract to therapy that are on the list. But even

prior to fish oils and NV kids progressed with therapy alone.

But before we assume he's a non-responder, first let me know the answers to the

questions above.

And don't worry it will work out either way!

=====

February 24, 2011

- Are you saying I should maybe wait before starting NV again? YES, bowels

are fine. Sometimes occasional pellet poops in the past, but not huge and fixed.

AS far as the list, my son goes up and down, whether i give something or

not..the growth, the super happy moods,the good jargon, the approximations,

sensory issues, fine and gross motor, sense of humor..focus..All go up and

down..NO rhyme or reason really.

He started walking up the stairs alone a month ago, just on homeopathy then, yet

some days he still wants hand held, then others he will go up and down. So

nothing is co sistant and I cannot say what helps or doesn't.

Wr are back doing hippotherapy, always do speech 2x a week and OT 1x a week. We

will do PROMPT certified again starting next week 2x a week and stick with it

for rest of year, i hope .

My son has gotten 340+ hrs of speech therapy (not anal, i added it for first

time a few wks back) and is not saying anything. I do have viseo of him a year

ago making great word approximations..he was on his way, i thought, some time

ago, all to go to a halt.

we started speech therapy with my son at age 21 months. He had a DI wking speech

before that even as we waited for speech therapist via EI. When we got one, it

was 2x a week, she was PROMPT trained, did Kaufman cards and some oral motor. We

supple,emted speech so he received it up to 6x a week. We had PT briefly and had

OT, and still do.

My son does not have autism, dx'd with verbal apraxia, global apraxia and

sensory issues. Also dx at one time w hypotonia and OT we wk with now says still

has. He may have oral motor issues as well, these elude me, DLP does Beckman,

PROMPT, cueing and various things with him now.

Unusual issues are no tears that overflow, checked with best ped neuro docs, he

doesnt have alacrima, has tears that cover eyes, yet doesnt do the typical

" cry " . He also doesnt laugh. I hear that is not an apraxia thing, he knows when

something is funny and screams loudly smiling, we tickle him like crazy and you

get a wee bit of a laugh, but not even near how other children giggle or laugh!

He goes to a typical preschool and looks typical the teachers report. he is

super sweet, likes to play w kids, shares, pretend plays well, all very

early..and has no behavioral issues, and great attention span for his age when

he has one on one therapy!

He has a hard time using signing, i sign all day, he will do a few of them,

otherwise, gets what he needs himself or takes one over.

Anyways, we have Done loads of biomed. Fish oils since birth, varied brands and

dosing to see if at age one would help speech (i knew he had CAS at very early

age)..To make it a short list: AC chelation one year, carnitine, liverlife,

cytoflora,herbs for lyme, kinsiology, NAET, GF/cf, corn free, soy free, for a

year, dmg, adressed the bowel tests,several CSTs, SPEAK, MB12 shots, COQ10 and

dozens of supps, did AMy Yasko genetic test, went through the supplements to

mend genetic supp needs one by one..trials of Pcholine, piracetam,vinpocetine,

LDN..to name a few...Oh and homeopathy now, second one.

I did so each logging everything and under notice and informed okays with

several of our doctors..so please dont think i over did anything..it wasnt all

at once!!

We have gotten many evals, seen quite a mnay docs and SLPs, so I am burned out

and they keep saying and write on reports to do as we are.

I MAY see a ped neuro dev in MD now or layer..not sure. Money is tight and I

alwaus wonder whether to save the out of pocket eval money for therapy....

I am in northern NJ.

ANY suggestions would be awesome and appreciated!

I have to run, family trip in few minutes, sorry if sentences/thoughts not

complete!!

Thank you for the discussion, all ears here, Ivy

On Feb 24, 2011, at 8:14 AM, " kiddietalk " <kiddietalk@...> wrote:

> OK that makes more sense now! I probably would say the same as your doctor

then, but I just have a few questions first.

>

> 1. Has your child been regular in bowel movements?

> 2. Are you using any other supplements or meds and if so what?

> 3. Have you seen 'any' even subtle changes in any of the areas listed on this

page? http://pursuitofresearch.org/pursuit-of-research

>

> Let me know when you can. It is possible that your best bet would be to stop

NV at least for a few months and try it again down the road. What's pretty cool

about NV is that unlike most things where the younger the better to start, it

doesn't appear to matter with NV as we have quite a few seeing surges in teens

-and even in Teri's 89 year old father with Alzheimer's Disease!! Either

videotape your child or keep a journal if you do stop the next time you start.

>

> All children should progress with or without NV, but if you take a child off

and put them back on and monitor both ways what you should see is a mild to

dramatic acceleration of progress in both areas that he's receiving therapy for

as well as areas that are a bit more abstract to therapy that are on the list.

But even prior to fish oils and NV kids progressed with therapy alone.

>

> But before we assume he's a non-responder, first let me know the answers to

the questions above.

>

> And don't worry it will work out either way!

>

> =====

>

February 24, 2011

Barbara- how long to see improvements in speech area? And at what dosing is

typical for your clients?

PS, I wrote a long message and didnt note that my son is 3.5 years old now..just

in case anyone was reading our history..thanks for all,

Ivy

On Feb 24, 2011, at 8:00 AM, Barbara <helpmespeak@...> wrote:

> Of my clients who have tried NV, 100% have had positive changes. I have 1

client who hasn't been successful in getting her dtr to drink it because her dtr

is a picky eater. IF she were to drink it consistently, I bet she would improve

too.

>

> Warmest wishes,

> Barbara A , M.S.,CCC-SLP

> CEO,

> Help Me Speak, LLC

> www.helpmespeak.com

> 2500 Wallington Way

> Suite 103

> Marriottsville, MD 21104

> 410-442-9791

>

> Ask me about NutriiVeda!

>

> On Feb 24, 2011, at 7:26 AM, Ivy <ivygreene88@...> wrote:

>

> > - I LOVE that you say that if fish oils did not work on children, it

does not mean that NV won't, and that it has an even higher success rate!!

> >

> > I think we all jave learned that WE as parents sometimes have to take

initiative and teach docs what works..lol, sad but true!

> >

> > The ped I speak of is huge here, alternative, and totally understands many

biomed treatments, the effects of mercury, the benefits of fish-oils...etc etc.

I hardly had to mention any alternative supplements to him, he seemed up to date

on all. He is almost a DAN doctor, without actually being one.

> >

> > I think he was just trying to be helpful when he said if it didnt work for

us in our trial stage (which i have to admit was only 2months, slightly more to

wk up to 2scoops) as he held the container, familiar with NV, that we should

stop and not continue. He was saying it has helped a few. Yet, many things that

help children w/apraxia, just have not helped my little guy.

> >

> > I on the other hand,always second guess doctors ,even thought i may be

fond of the many we see.

> > i have done plenty for my son to try to help his severe verbal apraxia, and

i do want NV to work. Believe me, when he does start speaking, all will hear

what worked..all of our SLPs, all OTs, all ped docs, all dev peds..etc. Oooo,

and do i want that day to come...i will continue to be hopeful!!!

> >

> > We start on NV this AM again.

> > Question is..do i switch to vanilla flavor when finished with chocolate? Are

two scoops enough for at 30lb child, two scoops for a long period of time OR

move up to three or more, since we didnt see anything on two scoops during two

month trial???

> >

> > Thank you, Ivy

> >

> > On Feb 24, 2011, at 12:54 AM, " kiddietalk " <kiddietalk@...> wrote:

> >

> > > Ivy honestly the only time I heard of any pediatrician not approving NV

was when we first started and we didn't have the information up on the site to

explain it http://pursuitofresearch.org/find-a-professional/ Knowledgeable about

nutrition medical doctors are those that are able to look at the ingredients and

determine it's OK even without the info above...which is why I encourage you to

seek a second opinion. We've heard from one of the country's top medical doctors

in neurology " this is a very impressive good product and I can see why it's

working based on the ingredients " And while it's recommended by every top

medical organization, there are still those pediatricians who don't recommend

giving a child fish oil. I mean sure you could give that preschool child a

bottle of baby formula instead to get about the same dosage of EFAs as a capsule

of ProEFA -but I just don't see that happening.

> > >

> > > As all nutrients in NV are from foods that have been used for thousands of

years with no known side effects and hundreds of clinical studies to validate

the importance of each, I am curious exactly which food in NV your pediatrician

doesn't approve of? Call him back and ask him if it's OK if you give your child

Carnation Instant Breakfast. Just curious if that would be fine.

> > >

> > > The theories in the blogs at http://www.pursuitofresearch.org are based on

cutting edge research where leading scientists today are learning and validating

the links between good health and good nutrition. There is the trickle down

effect that eventually all doctors will learn what the leading ones are

teaching.

> > >

> > > As far as percentage of kids this works for I'd like to hear from you

Barbara too! What percentage of your clients does NV work for?

> > >

> > > I wish other SLPs would write here as well more. There are other SLPs that

have written here about their clients as well, some of those professional

reports are up on this page

http://pursuitofresearch.com/2010/11/22/is-nutriiveda-creating-a-paradigm-shift-\

in-treatment-of-speech-impairments/ But Sharon's SLP has yet to write about her

experience and I know that Sharon's son alone was one of her clients before

Sharon moved...and speaking of Sharon (if you are reading this!!)

> > >

> > > I put the videos of that amazing 5 year old on my fb page saying " if only

all children could speak this well " and put a mock warning that those of younger

apraxic children are not allowed to watch this

> > > http://www.youtube.com/watch?v=0rbMHLDY1pA & feature=player_embedded

> > > and

> > >

http://www.youtube.com/watch?annotation_id=annotation_525660 & v=oVoR_ZMPgVE & featu\

re=iv

> > >

> > > Sharon from our group commented -and I said " Sharon you weren't supposed

to watch this! Or is it getting closer with NV progress? "

> > >

> > > And Sharon answered " Hey ! I know, but I couldn't help myself. IS

getting closer with NV progress. I've got some more footage that I'll be posting

soon. We're finally feeling settled and I am due with baby #3 in 6 weeks so just

when we get things under control we'll be out of control again, but such is

life.

> > >

> > > is doing INCREDIBLE. No one here in CO even knows he has apraxia or a

speech disorder. When I told our newer friends they were shocked. We definitely

still have a ways to go with ST, but he's not standing out among his peers. He's

probably one of the more social kids in class even. It's just crazy. We really

have no major worries at this point in life, in regards to Ry.

> > >

> > > Hope to chat soon! "

> > >

> > > So Sharon we are all looking forward to seeing the new video updates of

!!

> > >

> > > There are a handful that report NV didn't work -but it seems pretty rare.

Based on feedback through our survey it appears that NV is working on a

multitude of conditions, ages and areas

http://pursuitofresearch.org/pursuit-of-research/ which tells me it's linked to

some essential nutrient or nutrients that is filling in a blank. In comparison

to fish oils -another essential nutrient, some experts like Dr. Stordy who I

heard at one conference put fish oil's effectiveness at around 80 percent. We

know that NV is effective in some of those that had no results on fish oils and

it seems almost always it works. I'd say somewhere between 80 and 100 percent

chance it will work -and most likely dramatic.

> > >

> > > Barbara what the success rate you are noting in your clients?

> > >

> > > And even though most of us see dramatic surges in days, there are some who

note improvements over months. , who's message is below was at first upset

because she didn't believe they were seeing the same surges in her son that

others were writing about here.

> > >

> > > - your message about your son in this regard is such a well written

example it's the perfect archive to show there is more than one way to have an

amazing surge!

> > >

> > > Progress in 9 months time..... AMAZING

> > > <>

> > > luvmykids8233

> > >

> > > Hi all-

> > > A 4 day holiday weekend.... that included a break in all activities,

school, and

> > > even my Son's Speech therapy, has caused me to have extra time to go

through a

> > > huge pile of old " Mini DV Tapes " from our camcorder- to simply label what

was on

> > > each of them. The pile of " non labelled tapes was really bothering me....

it

> > > was nice to finally take the time to label what was on them!

> > >

> > > I found the old tape, where I recoreded my son BEFORE NV last Feb..... I

also

> > > saw the numerous videos of him that I recorded of him in the next few

weeks. My

> > > Son was 35 months old when he started NV.... he is now 44 months old. I

tried to

> > > take time to post these videos on You Tube.... but was not able to have

> > > success... the tapes were stored... but not forgotten!

> > >

> > > I wanted to discuss some of my feelings/observations after seeing these

videos

> > > as follows:

> > >

> > > 1. My Son has a diagnosis of moderate to severe Apraxia.... (I feel that

he

> > > leans more toward the Severe end).. When we started NV, I think that I

expected

> > > a MIRACLE.... and it did not occur....I was too emotional with worry over

my

> > > son's condition to even notice the small changes that occurred within 2

weeks

> > > after NV! Looking at all of these videos with a CLEARER MIND made me see

that

> > > there WERE CLEAR DIFFERENCES! My parents even noticed the differences when

> > > watching the videos! My son seemed much more focused after the second week

of

> > > NV. He also went through the typical " hyper stage " that some of our kids

do--

> > > but not in a bad way..... he simply was babbling more.... and trying

harder to

> > > use " word approximations " ... which was good! (He barely made any sounds at

all

> > > prior to NV.....to even get him to TRY to verbalize a " word approximation "

was

> > > very hard back then). The increase in babbling was a GOOD thing.... think

about

> > > it..... he had delays.... and he HAD to go through the babbling stage

before

> > > attempting to master actual words. The NV helped him with this... and more

and

> > > more " word approximations " started to emerge in the next few months!

> > >

> > > 2. Last year, I was so consumed with worry- my son had clear delays... he

was in

> > > EI--- he soon would be turning age 3....(which to me, meant that he would

be

> > > transitioning from EI to a Special Needs Pre K).... all of my energy was

taken

> > > up with worry about how my son did not speak.... and how I had to FIND A

WAY to

> > > FIGHT the " Special Needs PK School who did NOT believe in 1:1 pull out

ST.... I

> > > was too distraught to SEE the changes in my own child! I feel that I had

" high

> > > hopes " that he would have an increase in speech abilities (meaning ,to me,

the

> > > use of WORDS).... which he did not during the start of NV.... As mentioned

in

> > > #1.... the NV assisted with the babbling... which assisted in the

development of

> > > " word approximations " and so on....

> > >

> > > 3. After looking at all of the old videos... and comparing them to even 1

week,

> > > 1 month after NV.... all the way up to the present..... it is CLEAR that

> > > SOMETHING DID CHANGE.... FOR THE BETTER! I CAN recall feeling really upset

> > > inside in the past.... because some of the moms who took the time to post

> > > " before and after videos of their children on NV " seemed to have kids who

> > > " seemed to have better Speech abilities than my Son on their BEFORE NV

> > > Videos " ... I was happy for them....(their kid's progress AFTER NV was very

> > > obvious)! I also, felt sad when I compared my son to these other kids....

when

> > > I compared him to them, he seemed to be even more behind in speech to

me.... I

> > > can recall feeling quite depressed about this.

> > >

> > > 4. Months later..... with a clearer mind..... (more time to internally

ACCEPT my

> > > Son's Speech Delays- and deal with them from a point of strength)... and

also

> > > due to the fact that I DID obtain 1:1 pull out ST at the PK level in my

> > > State.... (Thanks again - for empowering me to achieve this).... I CAN

now

> > > see differences.. and will describe them as follows... (Again, We just

looked

> > > at a bunch of old videos of our Son.... the differences were CLEAR to

us... and

> > > also to our Family Members who watched these with us)....

> > >

> > > 5). BEFORE NV

> > > - all Baby videos of Tyler show hardly any babbling other than MUM MUM

MUM... he

> > > WAS able to create some pretty powerful Raspberries though!

> > > - older videos show clear Sensory Issues starting at age 5 months old....

Ty was

> > > screaming every time he was placed on grass in bare feet, He also had huge

> > > sensory issues at bath time..(it took awhile to get him used to the

sensation of

> > > being in water). there were feeding issues (gagging on certain textures)

that

> > > continue to this day as well.

> > >

> > > SHORTLY BEFORE START OF NV... (age 2 forward).... I seemed to ALWAYS be

trying

> > > to get

> > > Tyler to point out his body parts on old videos.... He REALLY could point

to his

> > > nose, his mouth, etc.... he just never did it on a video.... I sounded so

> > > pathetic on these videos... I kept asking him to show me his nose.... I

kept

> > > asking him to talk to me.... and he appeared to have a blank look on his

face as

> > > I did this. He would smile from time to time.... but he also always seemed

to

> > > have a " BLANK " expression on his face... and his mouth used to hang

open....

> > > His eyes often, had no sparkle.... (my dad used to tell me that he thought

> > > Tyler was autistic during these days).... Tyler always TRIED to be social

with

> > > others.... he also loved to hug others.... and he DID know where his nose

and

> > > mouth, etc were.... he had " no words " .... but his smiles and hand/arm

" gestures "

> > > made up for this. If I asked him " how big are you " ... he would raise his

arms

> > > up in the air with a huge grin and say OOO eee (so big). Looking back, it

almost

> > > seems like Tyler did not like " being put on the spot " to " talk " ..... in

these

> > > old videos..... Tyler was a smart little kid... he started ST with EI at

age 20

> > > months.... he used to smile, and place his fingers in his ears when the

> > > therapist tried to work with him. He KNEW that " this speech stuff " was

HARD!

> > >

> > > - I have a video of Tyler the day before we started NV..... we were going

> > > through home-made " Flash Cards " together (laminated pictures of family

members,

> > > favorite toys and pets).... He was very distracted.. and became upset

> > > quickly... He continued to have a " blank expression " .

> > >

> > > AFTER NV....

> > > The blank look on his face was gone by the second month after NV.... his

FOCUS

> > > improved.... which caused his attention span during his ST sessions to

> > > improve... Speech abilities transitioned from babbling to more word

> > > approximations. the increase in his attention span helped him to get more

out of

> > > his ST Sessions! He was able to follow directions better-- and he was more

> > > willing to TRY! We have always loved a " Fun Class for kids " called

> > > Kindermusik.... these classes are offered in most states- and they are

awesome!

> > > Prior to NV, Tyler spent his Kindermusik class times trying to crawl

toward to

> > > exit door.... NOW- he is engaged, follows directions... and LOVES IT! His

> > > " Words " have increased to the point where he can put together 3 word

> > > sentences..... such as " MUH OWE ON " (My show on)... He started to have an

> > > increased interest in singing this past July for the first time..... If I

" sing

> > > simple songs slowly " .... he can follow me! This is the child who seemed to

have

> > > zero interest in simple Nursery Rhymes at age 2 and age 3! He will be age

4 in

> > > March.... and, starting about 2 months ago, he is " catching up " to

learning all

> > > of those Nursery Rhymes! (He can't sing them like " typical kids do " )....

BUT HE

> > > IS SINGING! It is beautiful!

> > >

> > > Have to include this.... Ty's version of " Twinkle Twinkle Little Star "

.....

> > > EE OHL EE OHL EE- EE ARE... (Twinkle, twinkle little star)

> > > OW AYE WUH OO OW OO ARE. ( how I wondor what you are).. W's are hard- he

has

> > > learned to put his hand over his mouth to " make the windy sound " when he

> > > attempts " W's "

> > > U-PAH uh uh WHHH-ole oh AYE! (S sounds are also hard)..

> > >

> > > He can spell his name to ther tune of the song " Bingo " now as well... He

says

> > > T- AYE - luh - E- R-uh. He can count out objects up to 6.... he can

identify

> > > colors... he DANCES! He is drawing the letter " T " correctly-- and often

does it

> > > all over my walls in crayon! (I do not like this- but he is so cute.... I

ask

> > > " who did this " .... he proudly, responds " ME " .

> > >

> > > We are very busy with all of his therapies... and also have a very

advanced

> > > older daughter who is a firecracker.... (involved in dancing and acting

> > > classes.. and is doing an amazing job at it at only age 5.8 yrs old)- she

talked

> > > early, knew her ABCs early... EVERYTHING she did and still does is EARLY.

It is

> > > a CHALLENGE to balance our lives/schedules to meet the needs of these 2

> > > children! We never " pushed " " potty training with Tyler " .... yet, he

> > > essentially, figured it all out on his own by simply trying to copy his

older

> > > sister!

> > >

> > > In conclusion, I feel that Tyler has come very far in a short time.... and

I

> > > BELIEVE that NV has assisted him to do this. We also are giving him the NN

Fish

> > > Oils... he takes 2 Pro EFA, and one Pro EPA per day.... (These are huge

gel

> > > caps--- I pierce them with a pin- and squirt them into his mouth). HE

LOVES

> > > THEM!

> > >

> > > PLEASE-- to any of you who doubt NV-- DO NOT GIVE UP if it does not seem

to

> > > create " instant miracles " .... MOST people do see immediate changes.... and

some

> > > do not... (I fell into this category in my son's case), but if you had the

> > > patience to read my detailed descriptions of how my son was " Prior to

NV " ... you

> > > can see that he had SIGNIFICANT Speech Delays! I feel that the NV assisted

my

> > > Son to " go through the normal process of achieving developmental

milestones that

> > > he was not able to achieve " ...... and CHILDREN MUST go through these

milestones,

> > > as part of their development! YES- we all want our children to SPEAK at an

age

> > > appropriate level...... when we have kids affected by Apraxia- this DOES

NOT

> > > OCCUR! I feel confidant that NV assisted my son to " catch up " .... Yes- his

> > > Speech remains delayed.... but he improves every week! My child is a SMART

> > > kid--- now that he is more focused, and more confidant-- he WANTS to try

to talk

> > > MORE! He learned and memorized the entire song " BINGO " during a short

drive in

> > > the car (when his older sister, who interrupts him was not present)!

> > >

> > > He also has a diagnosis of Hypotonia.... and wore DAFOs (Orthotic Braces)

from

> > > age 20 months on to assist with ankle pronation. His braces have been cut

down

> > > in size! He can RUN, he can climb!

> > > NV IS HELPING HIM!

> > >

> > > =====

> > >

February 24, 2011

We can't wait to see what happens in the next few months on NV!

Thanks!

Sent from my Verizon Wireless BlackBerry

[ ] NV update

We have been giving my 2 1/2 year old son, Logan, NV for just about one

month now. We give him one very heaping scoop per day. I mix a good amount

of it with his oatmeal in the morning and the rest in his milk cups

throughout the day. He will only tolerate a little in his milk at a time, so

I spread it out.

We have seen some changes in his ability to imitate movement. He dances

along with The Wiggles songs. It is so cute and amazing to see!! He is also

climbing in his Gymboree class with a little more confidence. He would

rarely even attempt to climb before and now he is more interested. He still

needs help but at least he is trying!!

We have not seen any changes in speech or any other areas. He is still

nonverbal.

So we are now going to start ProEFA, one capsule per day. I was considering

increasing his NV dosage, but since he is only 2 1/2 I'm not sure how much

more NV we can actually give him??

Overall we are thrilled and hoping speech comes next!

Sent from my Verizon Wireless BlackBerry

February 24, 2011

so interesting!!

My son also had wet eyes, but his tears never came in. He does laugh though.

What do the doctors say about no tears?

> Unusual issues are no tears that overflow, checked with best ped neuro docs,

he doesnt have alacrima, has tears that cover eyes, yet doesnt do the typical

" cry " . He also doesnt laugh. I hear that is not an apraxia thing, he knows when

something is funny and screams loudly smiling, we tickle him like crazy and you

get a wee bit of a laugh, but not even near how other children giggle or laugh!

> He goes to a typical preschool and looks typical the teachers report. he is

super sweet, likes to play w kids, shares, pretend plays well, all very

early..and has no behavioral issues, and great attention span for his age when

he has one on one therapy!

>

> > OK that makes more sense now! I probably would say the same as your doctor

then, but I just have a few questions first.

> >

> > 1. Has your child been regular in bowel movements?

> > 2. Are you using any other supplements or meds and if so what?

> > 3. Have you seen 'any' even subtle changes in any of the areas listed on

this page? http://pursuitofresearch.org/pursuit-of-research

> >

> > Let me know when you can. It is possible that your best bet would be to stop

NV at least for a few months and try it again down the road. What's pretty cool

about NV is that unlike most things where the younger the better to start, it

doesn't appear to matter with NV as we have quite a few seeing surges in teens

-and even in Teri's 89 year old father with Alzheimer's Disease!! Either

videotape your child or keep a journal if you do stop the next time you start.

> >

> > All children should progress with or without NV, but if you take a child off

and put them back on and monitor both ways what you should see is a mild to

dramatic acceleration of progress in both areas that he's receiving therapy for

as well as areas that are a bit more abstract to therapy that are on the list.

But even prior to fish oils and NV kids progressed with therapy alone.

> >

> > But before we assume he's a non-responder, first let me know the answers to

the questions above.

> >

> > And don't worry it will work out either way!

> >

> > =====

> >

February 24, 2011

Hi Ivy,

I want to see if I can help you make sense of what is going on first. NV aside

for the moment - you live in northern Jersey -tons and tons of apraxic children

so lots of very knowledgeable therapists and doctors and appears from the

archives that even though your child is only 3 and a half you've already tried

far more professionals and therapies than most at that age.

I went through the archives which you don't go far back in..but you state your

child was speaking and then regressed 2 years ago. Since your child is now 3

and a half he was talking at a year and a half? Please let's start there -tell

us more about how your child was prior to the regression.

How well was he speaking at that age- babble or actual words? Can you be more

specific and did something happen that you can recall that may have caused a

regression? Any type of fall? Fever? About the eyes and lack of tears

It sounds like you have been on it with therapy -PROMPT everthing and have tried

every biomed out there will no success that can be mentioned.

Please if you can take the time to let us know a bit more of the specific

history as below I have some of the treatments with no success.

You talk about lack of overflow of tears. Has your child been to an eye doctor?

Has your child gone for any genetic testing? Prior to the regression in speech

did your child ever have tears overflow?

OK and back to NV which I can't answer until I am clear on your answers. The

bowel movements were good on NV. While using NV were you using any other

supplements or meds? Specifically while on NV were there any improvements in

any of the following areas on this list on this page?

http://pursuitofresearch.org/pursuit-of-research

You asked Anni a question below who has had great success on NV with a history

of heavy biomed that didn't work. I don't know why she didn't answer but there

are so many messages and she may not check her emails much -but please email her

direct at annaliisajansson@... annaliisajansson at hotmail.com I know

she will want to help.

Two other questions...how is his growth? Does his tongue look unusual -smooth

and pale?

As far as helping with goals let us know a few of his IEP goals. Does he have 3

month goals as well as 6 month goals? Who helped set them up?

OK here to fill in more blanks is some of your background emails which covers

your exploration of traditional and biomed approaches.

~~~~~~~~~~~~~~~~~~~~~Ivy some of your archives thus far from here

Hi. How fast should we see PROMPT work if done with certified SLP, with awesome

reputation?

My son has been in speech therapy since he was 21 months old. He is 3.5yrs old

now. He has gotten various methods of speech. 320 hours of speech therapy to be

exact, to date. He is age appropriate in listening,attention, social, play

skills. He loves therapy and his therapists. We have had to change a few times

DX is verbal apraxia, mod to severe by several SLP evals amd global apraxia, esp

sign language is difficult for him. No autism.

He got speech 4-6 x a week until now. Actually, his first slp was PROMPT trained

and my son was moving ahead, so i thought. Yet, since then, she quit EI and we

have been using quite a few PROMPT-nearly certified SLPs. We have always done

private speech on top of the EI.

Since my son has regressed with speech, i am wondering if PROMPT is not

something he may have been ready for. BUT then i thought, maybe we didn' t give

PROMPT a total try, since these SLPs were not certified, so that is why we now

see the cert one and then another one who does Beckman and is rounded in many

different methods. We also did talk tools in the past.

Nowadays has no spontaneous daily consistant words except buh buh..sometimes a

closer bye bye. He used to have much more spontaneous words and popouts..and

even better approximations. Even the popout words are not around as much as

before, you know, those clear lovely wows. We have started working with a

wonderful certified PROMPT therapist 2x a week, yet i do not want to continue if

that is not what he needs.

I know, you may tell me to ask our private speech therapist..well i have and

have heard it all. Last year we worked one SLP and she said PROMPT is not for

him.Yet, she wasn't certified, and i felt she didn't want us to leave her. Then

the PROMPT therapists will say it will definately help him.

I don't know how to help my son..i want to give him what is going to help. We

have limited money and cannot do speech nonstop...

Thank you for helping me out,

Ivy

Re: When does PROMPT work? When is it appropriate type of therapy?

Barbara- thank you for your post!

My son had many many more pop-out words and approximations 2yrs ago and much

less last year..he has had speech since he was 21 months old average 5x a week

until now- he is 3.5yrs old. We still don't have many sounds, nor spontaneous

words besides buh buh, sometimes a good bye bye. We used to have juice, up,

down, mo(re), help..in his daily words..now we cannot get that out of him

He has no medical conditions. We have tried many many biomed interventions, had

genetic testing, he has been on fish oils since birth really, and recently we

tried NV for two months at two scoops a day without ANY difference. We are

taking a break from it and trying perhaps again later.

He is a typical child with severe verbal apraxia and various global apraxia and

some sensory issues,(we see an OT.)

Why he hasn't made progress is a HUGE MYSTERY!!!

Any other suggestions would be wonderful.

We are working with an SLP who knows Beckman, Kaufman and is PROMPT level II..so

thank you for saying well rounded is good!

So the well-rounded is better than JUST solely doing PROMPT, correct? Is this my

understanding?

Since our current OT is doing so much I thought focusing on only PROMPT during a

session would be helpful- I don't know if it will be!!

I was considering adding a PROMPT only session also during the week with a

PROMPT cert SLP. She is also great with oral motor/feeding, that way I can rule

out any issues there.

Any issues, suggestions would be great.

thank you, Ivy

Re: When does PROMPT work? When is it appropriate type of therapy?

Barbara- I live in northern NJ, an area where we have quite a selection a great

SLPs. I think I have talked with and given everyone of them a trial..lol! One

even does hippotnerapy and we did that for a while.

I am fortunate I don't have to drive hours to get to an SLP as some parents do.

I would also think my son would have had some progress.

Ivy

Re: [ ] My NV story

Anni- How wonderful the gains your son is having on NV!! I also had reservations

regarding tne whey, even though it was reported to be safe for those allergic.

Can i ask how mich you give daily-how many scoops? What flavor? Thank you.

How long should one try NV to see if it works? We did two months on two scoops

and didnt note anything different. I am willing to do another trial.

Sent from my iPad

On Feb 19, 2011, at 5:38 PM, " anna_liisajansson " <annaliisajansson@...>

wrote:

> Hi All,

> It has been a long time since I have posted. I felt that I must post now I a

lot has changed.

>

> About a year ago I started my son on NV, he did great and was having major

gains in speech, digestion and cognition. About 2 weeks in I got an allergy

report back, it said that my son was allergic to whey. So, I took him off of NV.

The gains left us and we were back to the tedious grind stone.

>

> I have tried everything. My little buddy is not autistic but did have some

autistic like quirks. I have done homeopathy, hyperbarics, methyl B12

injections, scd diet, everything!

>

> We have a new DAN doc who wanted us to do a MORA allergy test. It is kind of

like a muscle test for those familiar. The lady who preformed it said I could

bring some individual items that she could test on him. I brought the NV. She

tested 3 time as she couldn't beleive it. He had a strong reaction to whey but

not NV.

>

> I put him back on that day. That was 2 1/2 weeks ago. I am so mad that I ever

took hoim off of it!

>

> He is doing amazing. We have crossed 3 goals off the list this week. He can

now jump with 2 feet off the bottom stair, he can kick a soccer ball and he

finger painted! (huge sensory thing, could not stand to have messy fingers)

>

> I had an IPP meeting on Friday and all his therapists agreed that the last 2

weeks have been huge. I didn't share with them About NV. From a speech stand

point, much more vocalizations. He had been putting 3 words together befor, now

he is now doing this without prompting. He is like a little parrot as well,

trying to repeat things that I say.

>

> The other thing I noticed was facial expression changes. He smirked the other

day? He has always had the big expressions, the big smile, the big pout but

nothing in between. OMG, as I am writing this I just remembered, we started

potty training on Monday. No problems. He is 3.5 years old. He is not great at

self initiating, but all thing considered we are pleased.

>

> I am just so excited. He is really appearing more and more like a typical

little boy. Some things are hard to put into words, he is just different.

>

> When we would go to his gym class before he would look around in amazement and

not focus on anything,I took him yesterday and he focused on what ever the task

was. No gazing around. He even tried to talk to another little boy!

>

> I am so thankful for this product. I am looking forward to future gains. I am

hopeful again.

>

> For those who haven't yet tried it, just try. You never know? For those who

tried it the past and gave up, try it again? I really feel like there is some

amazing healing properties to this product!

>

> Thanks,

> Anni

>

=====

February 24, 2011

- I havebeen on this list for over 2yrs..i just dontwant to makemy name

normy son's & nbsp;namepublic.hopeu can appreciate that and understand.i am at

iinlawsandmy story & nbsp;islong.soto makeit short,dont get mewrong,i appreciate

you talking w meand helping..i didanswer the NV listlink gains..they are his

gains UP and DOWN, nomatterwhat we use..surehismood wasgood on NV and it was

bad..andhisgrosswasgood, and bad..etc..i listed itearlier.

What I meant when isaid he lost words was that my child with few pop out words

and getting great approximations a year and half ago..even saying please, juice,

this, gimmeit, bus and doing good approxon Kaufman cards..wefindtodayjust

abuhbuh jargon. He always jargoned. Inthe past you could hear things sometimes

in it, now notreally. Popouts arenit nearlyas

before..we & nbsp;hardlyhearthem.approximations are fewer than before.

I am happy to send you our Dave Hammer and two other recent SLP evals we have if

that helps

I dontmind doing that. I wouldreally like light shed on my son's condition

because he doesn't seem to be making progressas all other children withCAS.

The eyes..idid see a Columbiaped neuro opt and he saidmy son wasfine,wrotea

report and that was it. We saw another eyedoc andsaid same thing.

Sorry about crowdedletters!! Phone is tough!!

Ohand myson'sbowelswere alwaysfine. Ithink manykids get constipation sometimes

andhiswasnt badnor often. & nbsp;

- you may know all the SLPs I have used around my area andwho I amusing now.

My son doesn't havean IEP. 3hey have enclosed classroomhere to offer only..that

is a long story in itself ..i amstill thinking about that shocker..esp since I

know I have learned from this group and friendsof mine that our children

dobetterinmixed,least restrictive environments..i agree.

Ivy

-- Sent from my Palm Pre

On Feb 24, 2011 5:06 PM, kiddietalk & lt;kiddietalk@... & gt; wrote:

& nbsp;