NV Update

[Guest guest]

Kate,

I have a 5 yo with no words yet. How do you teach someone to read who can't

speak? I know it is done all the time, but I'm not sure exactly how to mark

progress. Can you share a little about your son's progress?

[ ] Re: NV update

Not one professional ever suggested that my son should be tested for a

learning disability just because he has apraxia and is 6 year old. He is in

a mainstream kindergarten and his teacher wrote recently that he has made

" remarkable " progress, he's starting to read books! Are you saying we are

supposed to test our children at 6? Kate

[Guest guest]

I'm sorry Kate you must have misunderstood my message, I wasn't saying that a

child should be tested for a learning disability when they turn 6 -I was

responding to the messages below it where there was a bit of confusion about a 3

year old that had a regression and since then wasn't progressing in speech.

Unless the child is struggling in school I see no reason to take them for any

type of testing to search for a learning disability or to assume one will have

to ever do that. In this group many of the children are mainstreamed and good

students.

OH!! and BTW when you say your child has made " remarkable " progress and he's

starting to read books now...is that since he's been on NV?

Below is a message you sent early February

My son's NV update and thank you!

Sat Feb 5, 2011 3:45 pm

I just had to update everyone that we have continued to see some really

unbelievable improvements with my son's speech since we have added NV to his

fish oil at Christmas. I know that others that see changes from day one too, but

even still we are amazed. He's not just repeating words, he's saying sentences,

I would even say he's become conversational! And his imagination continues to

grow. I wrote how I listen to him play now and it's music to my ears. The

other day he was playing iwth a toy bus, loading the all the kids on and off and

talking to them, and having them talk back and to each other. Last night we

watched Beverly Hills Chihawhua 2 and he asked me if we could " make popcorn for

the movie " It's not that his speech is super clear and perfect but he's

talking and we can understand him much of the time. Now he tells us when he

wants to do something or not and his tantrums have virtually disappeared. I

NEVER thought this day would come, certainly not this quickly. I remember just

a few months ago reading all the NV updates and thought " yea, right, that will

never happen for us " My husband asked me last night if we know how long our son

has to take the NV for. I know there was something written about this for 6

months or a year? I could not find it at http://www.pursuitofresearch.org Also

we have been pretty much letting my son have whatever he wants now that he can

actually ask for it. How do others handle saying no when their child first

starts talking? This is all happening so quickly and I feel like I went from

beginner to advanced in the verbal area. From the bottom of my heart I want to

thank all of you here for being here. If it wasn't for this group my son would

never be where he is today. Thank you!!!! Kate

~~~~~~~~~~~

Academics is for sure one of the areas of surge we see pretty quick -may want to

read this update from from his son's kindergarten teacher

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

in-treatment-of-speech-impairments/

=====

[Guest guest]

To put it simply, I dont even know of he knows colors , and prob cannot identify

letters either..at age 3.5!! Sure sometimes he points to a blue car..but nothing

consistant and concrete...PLUS my hubby's side has dyslexia, so this MAY put my

little guy into a higher 'alert' category to watch out for.

My older one had some issues w reading, I had to tutor him (school didnt have

proper services). He is smart yet still has spelling issues.

I have to make sure my 3.5 yr is introduced very early to sounds of letters and

gains phonological awareness..since preschools and then the elemtary school's

teachings of these is NOT good for children who need more than whole word

teachings as to look at the pictures on the page to guess at the word..that just

doeant work for my kids.

My other HUGE issue is my little one HATES to learn and follow through even with

speech assignments with me. He used to work well with me..now he wont even

color, draw circles, try to do puzzles or learn letters with me. Another BIG

part of his learning block is that if he knows something is hate for him..he

shuts down and wants to do something else.

So these are some reasons I have to stay aware of what is happening, yet I am

NOT an educator and need someone to back me and tell me where he needs help.

This is another reason I am considering the IEP. He is in a regular private

preschool, yet they placed him early on in the younger class..so he is the

oldest in his class..which upped his confidence level..the other class may have

brought out issues..he was behind in art skills and couldnt keep up, and played

and related more to the younger group..so I guess it is okay the school placed

him where he is.

Since I suck and 'teaching' him..of course everyday he learns indirectly with

me..we go to fun play centers with tubble gyms, ball pits...this morning I am

going to look for a gymnastics class I can register him for, maybe even

swimming.

He IS looking forward to hippotherapy, he loves the horses!! We do that with our

SLP, then he gets OT and speech therapy 2x a week.

Any cool suggestions or tips And heads up..kwim..I am all ears!!

I just ordered a bunch of movement books and dyspraxia books to read (again), i

read a lot.

Thanks, Ivy

On Mar 1, 2011, at 11:08 AM, " kiddietalk " <kiddietalk@...> wrote:

> Ivy, there could have been a misunderstanding, but a learning disability is

not typically diagnosed until at least 6 years old. You have a very unusual

situation where your 3 year old child was speaking and then had a dramatic

regression in speech, and since then in spite of numerous well qualified

therapists appears to have an inability to progress at all in speech. You just

posted about your child being on pharma omega speak which has the mega amounts

of vitamin e and k at around 2 years old, around the time of your son's

regression. As you said as that was so long ago you didn't think of it at first

but you have all the notes of how your son lost the ability to say the words he

said prior.

>

> I introduced you via email to Cheryl, who's daughter Shae developed psychotic

episodes and little progress in speech after mega amounts of vitamin e per the

doctor behind pharma omega speak's protocol years ago. And you know my son

Tanner's story which I don't go into details but have some of it up here

http://pursuitofresearch.org/the-history-why-nutriiveda-for-therapeutic-use-for-\

autism-apraxia-etc/ The regression did not go away in spite of the years that

passed- until NV. While my son had much quicker and dramatic responses as most

-Tanner was also 11 years old and the dosage of the vitamin E wasn't nearly as

high for him as it was for Shae who was 4, or your son who was only 2. I know

you are in contact with some professionals as well and I would stay focused on

this.

>

> When you are part of an in person support group you also get to know much

more. One thing we learned as a large group in meeting for years is that apraxia

is NOT linked in any way to a learning disability. Just the opposite as many

have phenomenal recall and can actually excel in certain areas due to this. Yes

expect (without NV) some lags in language as they are late to talk -but that is

different than a language disorder. Again most with apraxia that start

kindergarten at 6 years old start in the mainstream stay there.

>

> Is it possible that down the road your child may be diagnosed with a learning

disability -as much as it's possible for any child. But again based on your

child's history learning disabilities shouldn't even be something you are at all

concerned about at this point. We need to find out why your child was speaking

and lost not only words, but the ability to progress at all in speech in spite

of so much help. As parents and professionals we can only advise so much here.

And again you are dealing with a situation that is outside the norm of this

group. That's why I put you in touch with Cheryl because at least here was a

similar type situation. I again highly suspect this is from your son getting

mega mega amounts of vitamin e -that so far is the only thing that makes any

sense.

>

> Don't worry -I know this will work out. You are doing all the right things and

seeing all the best medical doctors and therapists -just stick with that path.

>

> =====

>

[Guest guest]

I've been waiting to write this update, because it's a little disappointing

to me. I'm not sure what we were doing during that time frame, but that day

of talking was a one-day event. It has not repeated. I'm glad someone wrote

out their observations that the chocolate NV seemed to work better because I

suspect that is what is going on. Let me explain.

The few days leading up to that event, we were out of vanilla NV so we were

strictly on chocolate. I had also just gotten up to 2 scoops a day. That was

when she began talking. Then we ran out of chocolate, so I bought a can of

NV from someone, but it was vanilla. I am waiting on my autoship order to

arrive that has chocolate in it. I thought about adding a couple of

teaspoons of cocoa powder to make it chocolate, but I'm not sure that would

help.

All that to say, I think the chocolate is going to be the trick for us, but

I have to wait for it to be sure. I'll keep you posted.

[Guest guest]

Hi ! I went back and read the last message again as there were

suddenly quite a few words and even 2 word sentences 10 days ago. I have a few

thoughts on it and it may not be the vanilla isn't working as well. Just a few

thoughts.

Her history prior to the NV surge is that she's 5 years old, and correct me if

I'm wrong essentially nonverbal and used alternative means of communication. A

few consistent and many inconsistent sounds -no words?

You then started NV early February -were inconsistent serving it probably

because she's a picky eater/was able to detect even small traces of NV

miraculously as many of our kids seem to be able to do (!!) and you were only

getting in a scoop which would be a half dosage -and we know she may not have

even consumed the entire scoop.

Then because you are officially our super creative NV chef here for real!!

(LOVE the new NV s'mores -that is crazy awesome!!!) you figured out some ways to

get her to eat the 2 scoops a day. So prior to that -February was a wash

because you only got in half dosage -ran out of product, inconsistent in serving

it etc.

We have found in almost all of our children NV is highly dosage dependent even a

1/2 scoop can mean the difference of it working or not....and when raised even a

half scoop can mean the difference between surges and OMG surges. Probably this

is due to the individual's needs of some nutrient or nutrient that is easily

digestible in NV and was lacking or unable to be utilized prior as I cover here

http://pursuitofresearch.org/getting-started/ So to translate and keep it simple

-she just wasn't getting enough NV..and just perhaps didn't get enough of the

vanilla in this past week?

But back to prior to the remarkable surge...

So while February was a wash for the reasons above- you get more NV in after

running out on March 16th. You figure out with your creative ways to get your

daughter onto a schedule of 2 scoops a day...and 10 days later (Mar 26, 2011)

you shared an amazing update with the subject " My daughter is starting to

approximate words! " and put a list of not just words but even sentences she

attempted. Will put that below because there's something else in it of interest.

You also mentioned breath control...and I sent you back a HUGE archive on this.

If she is 5 and was essentially nonverbal outside of a few sounds up to that

point -as I wrote in the archive her breathing issue can be a problem that needs

to be addressed as well. Tanner used to say his " breath hurt " when he first

started reading out loud long sentences from books, and as I wrote a doctor

friend had to have throat surgery and when I ran into him at a restaurant he

clearly was having trouble speaking -this was months after the surgery. He did

have to relearn how to talk and I noticed his breath when he did speak- so I

told him what Tanner said that his " breath hurts " and this man -this medical

doctor who runs a large practice here in Florida -his eyes lit up and got really

wide like he's shocked and I'm serious it's like I hit a nail on the head and he

said " yes he's right my breath does hurt " as well as he could.

Thing is it's only been about a week since you posted your message and you did

write she was attempting to say more. I don't think you should ask her -but

somehow see if you can find out if her breath is hurting her too when she talks.

Because honestly -to go from where she was (and I'll put the archive below but

take out the breath archive as it was so huge) to not speaking at all...yes

could be she wasn't getting as much of something in the vanilla, maybe she ate

or drank more with the chocolate???

Chocolate and vanilla NV have all the exact same food ingredients other than the

chocolate has cayenne pepper and the vanilla has cinnamon. Even the vanilla NV

has cocoa in it if you check the ingredients here

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-ingredients/

So far other than your message the only other message was from a back in

January 2011 -and even though she asks it and since then this question has come

up a few more times -it hasn't been answered so honestly we don't know. Also

did have improvements with vanilla as you'll read -but the difference was

moderate vs " HUGE " surges with chocolate. Is it also possible the child likes

the chocolate more and consumes more?

Keep in mind when I ask this question there's even a difference again with 1/2

scoop -so again is it possible she was getting more of a heaping scoop of

chocolate and less than that of vanilla as she's a picky eater? I mean if she

doesn't finish her s'mores and dad and brother do, did she get her full serving?

Do you make extra to make up for what she didn't consume?

~~~~only message from the archives about flavor-result difference;

" " <lisad529@...>

Sent: Thursday, January 06, 2011 1:42 PM

Subject: [ ] differences between NV -- chocolate vs.vanilla?

We were using the vanilla and then decided to use the chocolate and we are

seeing HUGE surges within days... we had a bunch of improvements with the

vanilla but WHOA! Has anyone seen any differences between the flavors with

RESULTS?

~~~~~~~~~~~~~~~Your message regarding the surge

My daughter is starting to approximate words!

S Buckwalter

Sat Mar 26, 2011 1:12 pm

We've been off and on NV since early February. We ran out of product once,

and were only on 1 scoop a day until we got more on the 16th of this month.

She is 5 years old and was completely nonverbal--no consistent words, no

initiation of words, some individual phonogram sounds, mostly sign language

if she wanted something. On Wednesday, I thought I heard some

approximations, but I wasn't sure. On Thursday, she had a lot of word

approximations, and some clearer. Her list for that day included:

iPad - sounded out by letter--she got all four sounds in, but it took about

20-30 seconds each time

upstairs backwards - she got all 4 vowel sounds

basketball Daddy - When Dad got home from work, she gave me the sign for

outside, then stood by the door and said what sounded like basketball and

Daddy. When I asked if that's what she said, she gave me her happy dance.

thank you - At dinner, she gave the sign for thank you and said the two

words fairly distinctly under her hand.

various flashcard words - I had recently downloaded a flashcard app on her

iPad where you have to rub your finger across the screen to reveal the

picture beneath. When it is revealed, the word appears and a voice says the

word. She was doing that and trying to say the word each time.

We were so excited! Of course, that was the day we say the OT and she was

impressed, so I couldn't wait to get to speech on Friday. Wouldn't you know

it was an off day and my daughter had decided to make almost every syllable

the H sound. LOL But the speech therapist still could hear many more sounds

and much more sound production.

My daughter holds her breath a lot as she tries to speak. Today she is

constantly trying to talk, and in very long sentences. I am encouraging her

to do that so she can work on building up her breathing. I have noticed that

on some words she stutters, but the final sounds are the word she is trying

for. I also notice that some words she speaks in syllables, others she

sounds out by phonogram. That might be because a couple of my boys are still

learning to read and she hears us sounding out words all the time.

It's so nice to hear her thoughts after all this time. Saying she wanted to

play basketball with her dad was a great first!

Buckwalter

~~~~~~~~~~~~~~~end of archive

you are the perfect person to document this. Please let me know if

you think the answer is flavor, dosage, or breath control. Any one of them is

possible. But I find it highly unlikely that it's that NV worked for a magical

few days and then stopped -there has to be a reason and as it's only been

(coincidentally) 10 days since your last update....I'd say your history shows 10

days from now we should know the answer from you!!! I can't remember -did you

say you were video taping to do something like what Gretchen did for

http://pursuitofresearch.org/2010/11/22/apraxia-road-to-recovery-before-and-afte\

r-videos/ ??? Let me know!

=====

[Guest guest]

Are there any websites to learn more about breath hurting, is it a diagnosis?

If my son is already talking in sentences (he is 6 years old and just started

recently since being on NV) does that mean this won't be a problem for him since

he hasn't complained? Kate

>

> Hi ! I went back and read the last message again as there were

suddenly quite a few words and even 2 word sentences 10 days ago. I have a few

thoughts on it and it may not be the vanilla isn't working as well. Just a few

thoughts.

>

> Her history prior to the NV surge is that she's 5 years old, and correct me if

I'm wrong essentially nonverbal and used alternative means of communication. A

few consistent and many inconsistent sounds -no words?

>

> You then started NV early February -were inconsistent serving it probably

because she's a picky eater/was able to detect even small traces of NV

miraculously as many of our kids seem to be able to do (!!) and you were only

getting in a scoop which would be a half dosage -and we know she may not have

even consumed the entire scoop.

>

> Then because you are officially our super creative NV chef here for real!!

(LOVE the new NV s'mores -that is crazy awesome!!!) you figured out some ways to

get her to eat the 2 scoops a day. So prior to that -February was a wash

because you only got in half dosage -ran out of product, inconsistent in serving

it etc.

>

> We have found in almost all of our children NV is highly dosage dependent even

a 1/2 scoop can mean the difference of it working or not....and when raised even

a half scoop can mean the difference between surges and OMG surges. Probably

this is due to the individual's needs of some nutrient or nutrient that is

easily digestible in NV and was lacking or unable to be utilized prior as I

cover here http://pursuitofresearch.org/getting-started/ So to translate and

keep it simple -she just wasn't getting enough NV..and just perhaps didn't get

enough of the vanilla in this past week?

>

> But back to prior to the remarkable surge...

>

> So while February was a wash for the reasons above- you get more NV in after

running out on March 16th. You figure out with your creative ways to get your

daughter onto a schedule of 2 scoops a day...and 10 days later (Mar 26, 2011)

you shared an amazing update with the subject " My daughter is starting to

approximate words! " and put a list of not just words but even sentences she

attempted. Will put that below because there's something else in it of interest.

>

> You also mentioned breath control...and I sent you back a HUGE archive on

this. If she is 5 and was essentially nonverbal outside of a few sounds up to

that point -as I wrote in the archive her breathing issue can be a problem that

needs to be addressed as well. Tanner used to say his " breath hurt " when he

first started reading out loud long sentences from books, and as I wrote a

doctor friend had to have throat surgery and when I ran into him at a restaurant

he clearly was having trouble speaking -this was months after the surgery. He

did have to relearn how to talk and I noticed his breath when he did speak- so I

told him what Tanner said that his " breath hurts " and this man -this medical

doctor who runs a large practice here in Florida -his eyes lit up and got really

wide like he's shocked and I'm serious it's like I hit a nail on the head and he

said " yes he's right my breath does hurt " as well as he could.

>

> Thing is it's only been about a week since you posted your message and you did

write she was attempting to say more. I don't think you should ask her -but

somehow see if you can find out if her breath is hurting her too when she talks.

Because honestly -to go from where she was (and I'll put the archive below but

take out the breath archive as it was so huge) to not speaking at all...yes

could be she wasn't getting as much of something in the vanilla, maybe she ate

or drank more with the chocolate???

>

> Chocolate and vanilla NV have all the exact same food ingredients other than

the chocolate has cayenne pepper and the vanilla has cinnamon. Even the vanilla

NV has cocoa in it if you check the ingredients here

http://pursuitofresearch.org/products/nutriiveda/nutriiveda-ingredients/

>

> So far other than your message the only other message was from a back in

January 2011 -and even though she asks it and since then this question has come

up a few more times -it hasn't been answered so honestly we don't know. Also

did have improvements with vanilla as you'll read -but the difference was

moderate vs " HUGE " surges with chocolate. Is it also possible the child likes

the chocolate more and consumes more?

>

> Keep in mind when I ask this question there's even a difference again with 1/2

scoop -so again is it possible she was getting more of a heaping scoop of

chocolate and less than that of vanilla as she's a picky eater? I mean if she

doesn't finish her s'mores and dad and brother do, did she get her full serving?

Do you make extra to make up for what she didn't consume?

>

> ~~~~only message from the archives about flavor-result difference;

>

> " " <lisad529@>

> Sent: Thursday, January 06, 2011 1:42 PM

>

> Subject: [ ] differences between NV -- chocolate vs.vanilla?

>

> We were using the vanilla and then decided to use the chocolate and we are

seeing HUGE surges within days... we had a bunch of improvements with the

vanilla but WHOA! Has anyone seen any differences between the flavors with

RESULTS?

>

> ~~~~~~~~~~~~~~~Your message regarding the surge

>

> My daughter is starting to approximate words!

> S Buckwalter

> Sat Mar 26, 2011 1:12 pm

>

> We've been off and on NV since early February. We ran out of product once,

> and were only on 1 scoop a day until we got more on the 16th of this month.

> She is 5 years old and was completely nonverbal--no consistent words, no

> initiation of words, some individual phonogram sounds, mostly sign language

> if she wanted something. On Wednesday, I thought I heard some

> approximations, but I wasn't sure. On Thursday, she had a lot of word

> approximations, and some clearer. Her list for that day included:

>

> iPad - sounded out by letter--she got all four sounds in, but it took about

> 20-30 seconds each time

> upstairs backwards - she got all 4 vowel sounds

> basketball Daddy - When Dad got home from work, she gave me the sign for

> outside, then stood by the door and said what sounded like basketball and

> Daddy. When I asked if that's what she said, she gave me her happy dance.

> thank you - At dinner, she gave the sign for thank you and said the two

> words fairly distinctly under her hand.

> various flashcard words - I had recently downloaded a flashcard app on her

> iPad where you have to rub your finger across the screen to reveal the

> picture beneath. When it is revealed, the word appears and a voice says the

> word. She was doing that and trying to say the word each time.

>

> We were so excited! Of course, that was the day we say the OT and she was

> impressed, so I couldn't wait to get to speech on Friday. Wouldn't you know

> it was an off day and my daughter had decided to make almost every syllable

> the H sound. LOL But the speech therapist still could hear many more sounds

> and much more sound production.

>

> My daughter holds her breath a lot as she tries to speak. Today she is

> constantly trying to talk, and in very long sentences. I am encouraging her

> to do that so she can work on building up her breathing. I have noticed that

> on some words she stutters, but the final sounds are the word she is trying

> for. I also notice that some words she speaks in syllables, others she

> sounds out by phonogram. That might be because a couple of my boys are still

> learning to read and she hears us sounding out words all the time.

>

> It's so nice to hear her thoughts after all this time. Saying she wanted to

> play basketball with her dad was a great first!

>

> Buckwalter

> ~~~~~~~~~~~~~~~end of archive

>

> you are the perfect person to document this. Please let me know if

you think the answer is flavor, dosage, or breath control. Any one of them is

possible. But I find it highly unlikely that it's that NV worked for a magical

few days and then stopped -there has to be a reason and as it's only been

(coincidentally) 10 days since your last update....I'd say your history shows 10

days from now we should know the answer from you!!! I can't remember -did you

say you were video taping to do something like what Gretchen did for

http://pursuitofresearch.org/2010/11/22/apraxia-road-to-recovery-before-and-afte\

r-videos/ ??? Let me know!

>

>

> =====

>