Re: re nutrition and autism

January 6, 2011

Hi Jill!

I'm not Jeanne but work close with Jeanne in helping her find articles of

interest to get out for our groups. I am probably the one with the much greater

interest in nutrition and it's links to various conditions -not just autism. I

have written a few articles on possible links at our new fundraising website

http://www.pursuitofresearch.org and what is ironic about the enzyme study is

that the main goal is to help children digest protein as that is viewed as the

root problem for this study.

For that you may want to read

http://pursuitofresearch.org/2010/11/11/added-proteinamino-acids-and-or-enzymes-\

help-those-with-autism/

About yeast we have many members now that have reported the yeast problems

cleared up with NV -and probably due to these properties

http://pursuitofresearch.org/2010/11/29/autism-antivirals-drugs-or-food/

Just because NV is a product that we are promoting through this nonprofit for

this reason

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

autism-apraxia-etc/ doesn't mean any of us, including me, would stand behind it

if we didn't believe in it.

If you are a parent professional who likes to research -I challenge you to do

research- and consult with the best of the best medical doctors who have

knowledge about nutrition about using NV for your child. I can not recommend

any product higher as a food, as a therapy, as a life changer. My next message

will be another Tanner update for those that read The Late Talker book or

otherwise know my now 14 year old son Tanner's ongoing story

=====

January 7, 2011

My son has PDD-NOS and AOS. Thank you for sharing your story. I have tried the

NV and it really hasn't worked at all for him the way it worked for other kids

in this chat room. He still isn't talking. I now believe, which I think is

supported by your email, that he mayt have some other nutritional issues that

other autistic kids have (ie yeast) and this is why he isn't talking on the NV.

We are taking him to a DAN doctor next week to get biomedical testing done.

FYI-I have a clinical chemistry background. I ended up talking to one of the

researchers doing the enzyme study. So far, what they are seeing is the enzyme

is improving the " food variety " that the kids eating, but there hasn't been any

major " breakthroughs " on it like kids starting to talk. I decided not to do the

study for my son. Also, for any of you thinking about doing this study, they

said your child would have to stop fish oils and NV to be in the study.

January 7, 2011

Hi ,

I know we've gone through this before but perhaps you should be specific when

you say " NV hasn't worked at all " as you have written positive updates for your

child in nonverbal areas both here and in BigTent in the archives and to the

survey. From what we are seeing in general the largest surges are in the first

6 months- but then each of us has a choice after that to stop or continue -and

yes those of us that continue to continue to see surges which I believe are

beyond " normal " progression for a child with a disability -but they are not

OMG!!! every day as they are to start. As I also just wrote -it appears that if

you keep the NV going for at least 6 months or so that they won't regress once

taken off -which to me anyway means there must be some sort of neuro repair -and

clearly there is research on the part of protein and essential amino acids and

some of the botanicals to back this up as we have here

http://pursuitofresearch.org/2010/11/01/the-science-nutrition-and-special-needs/

or here

http://pursuitofresearch.org/2010/12/10/mitochondrial-dysfunction-in-autism-and-\

other-disorders-can-diet-help/ for just two examples

The sudden dramatic surges could be like water to a dry plant -the body is

provided nutrients that were either missing or unable to become utilized prior

and it responds.

Is he still able to do the " p " sound? Is he getting oral motor and motor

planning therapy to address his speech impairment (not all speech therapy is

appropriate for an apraxic child and if progress is not being made in 3 months

you should reevaluate therapy, therapist and even diagnosis) There should be

progress. When you stopped the NV did he maintain the " great improvements in

understanding language, eye contact and social interactions " that he got on NV?

While some people stay with one dosage, or lower than recommended -some of us go

higher with consults with our children's doctors and see further surges.

Without knowing your child and his needs and knowing he continues to be

nonverbal- I do hope that you find what he needs to help him find his voice.

But I honestly don't believe that yeast has anything at all to do with keeping

your child from digesting nutriiveda based on the research I've done on the food

ingredients that would fight yeast -and on parents in this group who have

children who's yeast issues are cleared up since being on NV.

Please do continue to share what helps your child -but please don't forget those

things that did help in the past. To me if something has shown it helped at all

-even in a small area, I appreciate that. For my son Tanner therapeutic

listening falls under that. But read my archives -I highly recommend it as

" worth exploring " and to me any progress is a good thing -and that therapy was

expensive for what we saw. So was cranial sacral therapy -but we did that to

-and hippotherapy and I can go on -each little bit of progress however was a

gold light.

I don't know -perhaps because of things like fish oils and NV surges are so

dramatic and easier now that some take them for granted. Not saying you are

-but please don't say NV did " nothing " when you put in writing just months ago

the surges you have seen. Again I am not going to share your survey results

from the survey from this page http://pursuitofresearch.org/pursuit-of-research/

-but you were one of the success stories there based on what you wrote there

-and even what you have written here!!! I will put a note as I find it

interesting that a parent will see progress and in such a short time would

dismiss it to the point of saying it did nothing. How many other parents would

like to know that something can help for turn taking, eye contact, social

interactions, understanding language etc. all the things you wrote it helped

with? I would think there are a few that would find it worth the 40 bucks a

canister to at least give it a try.

And in conclusion if I were you there is NO WAY I would have stopped NV. Again

any progress is good progress. But then again perhaps NV did all it can for

your child at this point -and perhaps what he needs has more to do with

traditional therapy (speech specifically) rather than nutritional at this point.

After all the brain responds to multiple stimuli and I highly suggest that

parents don't depend on fish oils and NV alone to help their child.

Nutritionals will stimulate and in most cases greatly accelerate progress -but

you still need the actual motor planning therapies...and appropriate placement.

And goodness knows -and I can say this for a fact -the world is still clueless

about apraxia for the most part- and until it learns more about it -yes children

will remain nonverbal. You can treat apraxia as if it was autism, you can't use

ABA to get a child to speak that has apraxia -and if you do -you may cause

further problems.

Here are just two of your emails -anyone in this group can archive any other

messages from you regarding this.

may 30th 2010'

I don't check the chat room everyday so i get bits and pieces of what is going

on. My son has been on NV since February. And even though he is made great

improvements in understanding language, eye contact and social interactions, he

still isn't talking.

I know that there is sort of a " regament " that people are doing besides the

NV-fish oil (are people taking 2 different pills)? vitimin E? extra hydration?

Could someone comment on what " should " i be giving my child besides the NV? I

did get some new fish oil from Barleans (Omega-3, 6, 9, EPA/DHA). He won't take

any pills-everything has to be in liquid form so i can squirt it in his mouth

from a syring). Should I be giving him some other vitimins (is what is in the

NV enough)?

Also-what medical tests should i ask my behavioral pediatrician to run for him?

We see her on Wednesday and this will be the first time since starting him on

NV. So far, no one has run any tests on him.

August 15 2010

[ ] NV has kicked in FINALLY

Hello-wanted to give you all the update-

My almost 3 yo has been on NV since February (he has both PDD and Apraxia).

knows that i have been emailing in saying that the NV was helping a great deal

with the PDD, but no help with the Apraxia (he did go from saying nothing to

making noise, but nothing else). About a month ago, i upped his NV dose from 1

scoop a day to 1 1/2 scoops. he also gets 1/2 tsp of fish oil (he won't do the

chewable Nordic products, so we use the Barleans which is close to Nordic

products).

For the past 3 weeks, we have started his summer speech camp days a week, OT and

a new SLT and a chriopractor (he has a droopy mouth). For the past week, he has

actually both for us and the other SLT tried to say the begining sounds of some

words (m for more). Today, I actually got it on video that he mouthed the " p "

sound in " up " for finally after about 15 minutes of trying saying the p sound

which he has never done before. Also, in his music therapy class yesterday, he

totally out of the blue INITIATED TURN TAKING with his therapist with full eye

contact (unheard of with a PDD kid)!!! he is still going on sensory overload (he

is totally craving pressure around his face), but maybe his mouth and body are

waking up!!!

~~~~~~~~~~~~~~~~~

How much I wish for you to see the same hope for your child again soon!

Best,

=====

January 7, 2011

My son's SLP had wanted us to try the listening therapy at a place near us and

we couldn't afford the hundreds of dollars, in all she told us it would have

been close to one thousand dollars. We are so happy now we tried NV and my

son's SLP can't believe that my son is initiating questions, in full sentences

(!) about things in her therapy room that were always there that he never

noticed before. " can I play with that? " He's so aware and I keep hiding to

watch him play because of his sudden imagination with toys. The only reason we

did try NV was because I read from some of you that I feel I know now and even

then we were skeptical -more so my husband. Even if NV only helped a little bit

we would have been happy because neither of us really believed we would be

fortunate enough to see progress. Apraxia has been a great stress on us

financially. So I agree to be clear of when something works or doesn't work.

My son's SLP is looking into recommending NV to her other clients now. I'm glad

to know that the listening therapy didn't create huge surges because at the time

I felt guilty we couldn't afford it. Kate

>

> Hi ,

>

> I know we've gone through this before but perhaps you should be specific when