Re: Gluten and Dairy problems showing apraxic symptoms???

[Guest guest]

we have our daughter OFF gluten and casein.....when she has had dairy or gluten

in the past, she would ALWAYS end up SICK with upper resp infections.....EVERY

time..... i have never been able to tolerate milk myself..... i have problems

when i DO eat/drink it.

From: cassrob224@...

Date: Sat, 8 May 2010 06:03:21 +0000

Subject: [ ] Gluten and Dairy problems showing apraxic

symptoms???

My son was diagnosed with apraxia a couple of months before turning 3. He just

turned 5, and will be entering a transistional kindergarden in the fall. So far

we have not seen anything other then a severe speech delay. But, lately I am

starting to notice some suble things that is starting to perk my attention. I

have him on fish oil, and the improvement was noticable, but he is still very

behind.

I was at his IEP about 3 wks ago. They gave me an article one of them had seen.

It was a small study done at oakland childrens on apraxia. They took 26 children

and gave them a full panal blood test, and found that most had specific vitamin

deficenties, and most shared the cealic desease gene.

Tonight I met a parent of a child who had been diagnosed with sensory processing

disorder. She heard most children with nerological disorders have trouble with

gluten. She said she tried it, and took her child off all gluten and dairy, as

well. She said she started on monday and he was a completely different child by

friday.

When I was telling my mother about this, she's lactose intolerent, she told me

her doc told her gluten and dairy intolerence runs hand in hand. My son's fav

food is cheese. Life would not be the same without it. :-)

Does anyone have any information about gluten and apraxia? And why is gluten and

dairy linked?

Thank you!!!

Crystal

_________________________________________________________________

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail.

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[Guest guest]

I don't have any research to site for you but I do know that many of my clients

w/apraxia have gone to DAN docs & followed that protocol---gluten & casein free.

The great news is that NutriiVeda is gluten and casein free!!!!

Warmest wishes,

Barbara , M.S., CCC-SLP

www.helpmespeak.com

410-442-9791

Ask me about NutriiVeda!

On May 8, 2010, at 2:03 AM, " cassrob224@... "

<cassrob224@...> wrote:

> My son was diagnosed with apraxia a couple of months before turning 3. He just

turned 5, and will be entering a transistional kindergarden in the fall. So far

we have not seen anything other then a severe speech delay. But, lately I am

starting to notice some suble things that is starting to perk my attention. I

have him on fish oil, and the improvement was noticable, but he is still very

behind.

> I was at his IEP about 3 wks ago. They gave me an article one of them had

seen. It was a small study done at oakland childrens on apraxia. They took 26

children and gave them a full panal blood test, and found that most had specific

vitamin deficenties, and most shared the cealic desease gene.

> Tonight I met a parent of a child who had been diagnosed with sensory

processing disorder. She heard most children with nerological disorders have

trouble with gluten. She said she tried it, and took her child off all gluten

and dairy, as well. She said she started on monday and he was a completely

different child by friday.

> When I was telling my mother about this, she's lactose intolerent, she told me

her doc told her gluten and dairy intolerence runs hand in hand. My son's fav

food is cheese. Life would not be the same without it. :-)

> Does anyone have any information about gluten and apraxia? And why is gluten

and dairy linked?

>

> Thank you!!!

> Crystal

>

>

[Guest guest]

There is a book called G.A.P.S.  gut and physcology.  You must read this.  It

does help with what is wrong with gluten and casien.  My daughter is autistic

and the DAN! protocal says to remove these first and for some children that is

all they need.  Not the case for mine but it still has to be gone.  We are

going to abstain for 10 years then slowly give her a tiny bit of each and see if

she can handle it.  Basically it is called leaky gut syndrome and their bodies

leak little bits of food from their intestines because they have autistic

entercolitis.  Then if a leaked out particle of gluten(wheat) or casien(cow's

dairy) is leaked the brain reads them as heroin or morphine because they are

very very simalar in shape.  the gut can handle it just fine but the brain sees

it as an enemy.  Seriously.  If your child has leaky gut this is happening. 

I have seen it in many many kids and it is scary.  For a mom the signs are

subtle because they are

eating these foods everyday so their behavior is the same mostly but if you

take it away (which you have to to really heal the leaky gut) they go through

REAL drug withdrawls.  Some kids will do wierd things to get the gluten when

they are detoxing.  My daughter wants to eat play doh.  Even the little bits

of normal (we use gluten free from glutenfreesoap.com) soap have gluten in them

and some kids suck that gluten out of their fingernails to get a fix.  You

might need to switch your research to autism.  I am not saying your child has

autism but they may respond to biomedical intervention.  Fish oil is also part

of biomedical so most of you here on this site are already doing some of it. 

It is not that scary.  Mydaughter would laugh and get " drunk when she drank

milk before.  I hated it.  She had to have it and then was wierd after she had

it.  Her detox was about 2 weeks.  Then she was fine.  She must still stay

away from it because now

we are doing chelation to heal her body.  Long story.  I wish more people

would talk to moms and dads of kids with apraxia and tell them the link with

autism.  I think it is a nice option.  Your child and family is your choice

but medical doctors will not give you this option.  You see we blame the

vaccines for a lot of our troubles so it causes a big problem.  If you are

curious. . . mac carthy wrote " louder than words " and 9 " healing and

preventing autism "   Those are just 2 of her man good books.  I do not really

like her that much personally but she has become a great advocate for her son

and those books were helpful.  She talked about her son's seizures in the first

book.  Siezures also can be a sing of leaky gut sometimes.  Espeically if you

can not detect them on an EEG.  Anyway if you have anymore questions Let me

know.  I am a rescue angel at Generation resue.com and I have been doing

biomendical for almost 2 years.  My

daughter has an amazing story about talking but that is too long right now. 

Kauffman

daughter nne almost 4 non-verbal until age 3 then after biomed her speech

teacher dropped her for advanced speech for her age!!!!

From: cassrob224@... <cassrob224@...>

Subject: [ ] Gluten and Dairy problems showing apraxic

symptoms???

Date: Saturday, May 8, 2010, 12:03 AM

 

My son was diagnosed with apraxia a couple of months before turning 3. He

just turned 5, and will be entering a transistional kindergarden in the fall. So

far we have not seen anything other then a severe speech delay. But, lately I am

starting to notice some suble things that is starting to perk my attention. I

have him on fish oil, and the improvement was noticable, but he is still very

behind.

I was at his IEP about 3 wks ago. They gave me an article one of them had

seen. It was a small study done at oakland childrens on apraxia. They took 26

children and gave them a full panal blood test, and found that most had specific

vitamin deficenties, and most shared the cealic desease gene.

Tonight I met a parent of a child who had been diagnosed with sensory

processing disorder. She heard most children with nerological disorders have

trouble with gluten. She said she tried it, and took her child off all gluten

and dairy, as well. She said she started on monday and he was a completely

different child by friday.

When I was telling my mother about this, she's lactose intolerent, she told me

her doc told her gluten and dairy intolerence runs hand in hand. My son's fav

food is cheese. Life would not be the same without it. :-)

Does anyone have any information about gluten and apraxia? And why is gluten

and dairy linked?

Thank you!!!

Crystal

[Guest guest]

Crystal back when I was a preschool child diagnosed with celiac disease I can

tell you that I was so sick I was hospitalized and so was my brother. I however

was affected more severely than my brother and almost died. I've gone my entire

life, decades without ever meeting one other person ever who was diagnosed

celiac. My mother said at the time that if my sister was also diagnosed with

celiac that she would be in the Guinness Book of World Records it was that rare.

OK even more funny -in my early twenties I was dating this guy who was still in

medical school...and don't even know how it came up but when he found out that I

had celiac disease as a little girl his eyes bugged out and he kept wanting to

talk about it because he said that he had learned about it in school and had

never met anyone with it.

Cut to (a few) decades later...and now I'm reading here that not only are

children being diagnosed with the gene -which is the ONLY way I'd just put a

child on a strict GFCF diet, but some are assuming all apraxic children should

go this route. Well perhaps because I had the unfortunate opportunity to be a

child raised on this diet I can tell you firsthand how much it sucks. How

horrible it is to go to birthday parties and not be able to eat a piece of my

friend's cake that looked so good. How I used to ask to walk into bakeries just

so I could " mell " the air (the way I said smell) How when at lunch all my

friends would share lunch not only couldn't I, but nobody wanted mine. Granted

I know there are far more options today than there were decades ago -however my

mother is highly sensitive to gluten and casein (celiac? good question) and

when she visits my house I am always searching for good tasting GFCF foods for

her in the form of bake mixes or cakes. I am not keeping track of how much I've

spent and thrown away. How many things my mom who is more recently in her older

age put on a strict GFCF diet eats and says " ugh! " You see, what I was told and

who knows as the facts change in medicine as time goes on...but that if I

outlived celiac I'd outgrow it by the age of 5...but it can come back in my

elder years as something called sprue...I've looked it up and now celiac sprue

are all one in the same. My Aunt who has her PhD in nursing (the one that is

very sick now -who fell again last weekend) years ago told me that if it's not

on the internet it's forgotten. She said there is information, knowledge, that

is in books that is virtually unknown to some medical professionals today due to

this.

So anyway just wanted to give a background why when this whole GFCF thing first

started becoming a " treatment " for autism -back when Tanner was little, and

that's almost 14 years ago now. Most of us with apraxic children didn't put two

and two together to say " oh well if it's for autistic children, then perhaps it

is for apraxic children as well! " And as some of the old timers know I never

jumped to that. Yes I know a GFCF diet saved my life when I was little, but no

I am not on one today. And yes I hate the diet and no neither of my boys were

raised on one. I can tell you that gluten and casein does not affect me at all

today, and I have been tested and apparently today test negative for celiac. Go

figure, I almost died of it when I was a baby, and my brother was in and out of

the hospitals too, and the only things that helped me with the GFCFF diet, but

whatever is around today -perhaps it's different than what I had that is

supposed to be so rare.

The things that make me feel best are fish oils and eating healthy -and I have

never looked or felt better since on nutriiveda and I am not just saying that.

Those of you on facebook that are my friends -you can see the difference if you

check photos. And the fact that my boys responded so rapidly and positively to

both fish oils and nutriiveda- perhaps there is some genetic link there. But

that doesn't explain all the rest of the kids, teens, and adults too seeing the

same thing,

Perhaps as a society it's not that all these children are unable to digest

gluten (for those not tested to need this diet -again if tested you have to

follow it) Perhaps once again this all goes back to essential nutrients, what

is lacking in out diets. Clearly once provided with something like nutriiveda

we are reading over and over how for the " first time " the child's bowels are

normalized, their skin is no longer transparent, they no longer have trouble

eating or gaining weight, or growing. And most importantly -they have no

trouble with digestion of these essential nutrients.

Granted as Barbara just pointed out -yes nutriiveda is GFCF, but clearly that

alone is not the reason it's working for our children. I'm sure this is just

like one big puzzle and knowing that nutriiveda works should make the hair just

stand right up on the back of every researcher's neck...because it's not

anything I've seen before. I have some of my theories here why it may be

working http://pursuitofresearch.org/science.html but don't go into the GFCF

aspect other than stating it is GFCF amongst other things.

But my point to this whole thing is that I never put my boys on this diet

because neither tested to need it -neither of them were sick like me. I was a

toothpick with a belly that made me look a little pregnant as a little girl. I

looked like one of those starving children you see in the photos asking you to

donate money. Once on a special diet I looked beautiful- GFCF did save my life.

I am thankful -but again don't understand why so many just try it. Please know

there are so many things to try first. After appropriate therapy, the right

formula of fish oils (higher EPA to DHA with a small amount of GLA in almost all

cases is the right formula) and based on the past few months with so far a 9 in

10 chance of working -nutriiveda, if you don't see improvement...maybe then.

But keep in mind that our children are already different than most. Please

don't do something that makes them different in another social way. And while

others may just say " try it " again you are hearing from someone that grew up on

this diet because I had to -get your child tested to make sure you do what is

necessary for him or her -but don't just try a diet like GFCF unless needed.

And one other thing in regards to milk. I agree there is a huge problem today

with milk due to the way it's processed, hormones added etc. But milk in itself

in raw form or organic whatever is a very good thing if pure. If you do the

research- out of the desperation and sheep mentality there are so many children

being pulled off a dairy there is a growing amount of children who have weak

brittle bones, short statue that are obese. Those are the side effects of

eliminating milk and I can state all the credible studies if needed. Not a good

thing to have a child with a speech problem, unable to participate in meals with

others, who is short, fat, with weak brittle bones.

Do as much research as you can. Don't just follow the crowd. Question

everything, ask, ask, ask. If a doctor suggests something that doesn't sound

right like electroshock therapy -question it (oh heck I don't even think I'd

question it I'd want to call 911 as I'm running away) But while you are

searching -dig really deep about essential nutrients like the essential fatty

acids and essential amino acids. It's not my theory that it's either a trace

element or a synergistic blend that has been missing not just from our

children's diets- but ours too -that is somehow in nutriiveda together with fish

oils. And if you don't believe me- just try it for a week or so. Yes it is

that fast. And you tell me why just about everyone feels and looks better.

It's not too good to be true -the only logical explanation to me is that it's

providing something essential to humans that has been greatly lacking or

missing.

So is pulling a child off gluten and casein the answer? It may solve a

temporary problem but it doesn't answer the question. To me nutriiveda is not

just GFCF- it's healing our children's brains and gut. Perhaps mine too. They

wanted to remove my mother's gall bladder she had such issues prior to being on

nutriiveda. For the first time she is alert, not falling asleep and as she said

" having normal bowel movements for the first time in my life " (oh she would KILL

me if she knew I wrote this!!!) But I'm writing it for science reasons as we

are a family with a history of celiac. I PRAY I don't ever have to be GFCF

again and hope because I take fish oils and now nutriiveda I won't have to.

there....I said it. And I also want to say- please if you want to just try

something- please just try nutriiveda. Show this to your child's doctor

http://pursuitofresearch.org/NutriiVeda_Information.pdf

http://pursuitofresearch.org/science.html and discuss it -and I'd share Mel's

story too because there is hard proof from neuro scans and doctor's observations

to back this all up -http://littlemermaidmelanie.wordpress.com and if anyone

wants to speak with Robin, Mel's mom or anyone on this page

http://pursuitofresearch.org/testimonials.html email me lisa@...

Got to run!

=====

[Guest guest]

Hi, just to chime in, I put my kids on GF/CF 2.5 years ago - and it made a

HUGE difference for them. Just HUGE. Two months after starting, we saw

significant and measurable improvement in all areas of therapy, including

focus and self-control. That being said, my identical twins (within a set

of triplets) had GI issues -- reflux, colic for months after birth, constant

constipation issues. I've recently looked at pictures of my kids just

before we started the diet -- they really looked awful. Our DAN! doctor did

her testing and determined that they kids should not have gluten or dairy --

and one had to eliminate soy.The good news is that after much

supplementation their guts have healed -- we were able to reintroduce soy to

one and the other may be okay for a little dairy soon. In the long run, we

may get lucky and have them back on regular diets -- but it will take time.

One kid has lost her " diagnosis " (she's had lots of therapy over the years

too) and is a happy Kinder kid. The other has made a lot of improvement but

will likely be in therapy for years, as her (initially profound) severe

global apraxia and SPD has really held her back socially.

With respect to what said about how hard the diet is to do -- happily

it is not that hard at all now. There are thousands of wonderful products

and my kids get everything. Whole Foods has options for everything and my

kids eat pasta, mac & cheese, pizza etc. There are also lots of on-line

options -- I recommend getting " Living Without " magazine which is a great

resource. We do have a great bakery in LA (The Sensitive Baker) that makes

yummy cupcakes and other items that you'd never suspect were GF/CF. I keep

lots of stuff in the freezer and send them with the kids for parties.

I guess my advice is, to some degree, trust your gut. If your kids have had

GI issues, then the diet is really worth looking into. Our kids need to

work really hard and focus to get their language out -- they need all the

help that they can get!

On Sat, May 8, 2010 at 7:46 AM, kiddietalk <kiddietalk@...> wrote:

>

>

> Crystal back when I was a preschool child diagnosed with celiac disease I

> can tell you that I was so sick I was hospitalized and so was my brother. I

> however was affected more severely than my brother and almost died. I've

> gone my entire life, decades without ever meeting one other person ever who

> was diagnosed celiac. My mother said at the time that if my sister was also

> diagnosed with celiac that she would be in the Guinness Book of World

> Records it was that rare. OK even more funny -in my early twenties I was

> dating this guy who was still in medical school...and don't even know how it

> came up but when he found out that I had celiac disease as a little girl his

> eyes bugged out and he kept wanting to talk about it because he said that he

> had learned about it in school and had never met anyone with it.

>

> Cut to (a few) decades later...and now I'm reading here that not only are

> children being diagnosed with the gene -which is the ONLY way I'd just put a

> child on a strict GFCF diet, but some are assuming all apraxic children

> should go this route. Well perhaps because I had the unfortunate opportunity

> to be a child raised on this diet I can tell you firsthand how much it

> sucks. How horrible it is to go to birthday parties and not be able to eat a

> piece of my friend's cake that looked so good. How I used to ask to walk

> into bakeries just so I could " mell " the air (the way I said smell) How when

> at lunch all my friends would share lunch not only couldn't I, but nobody

> wanted mine. Granted I know there are far more options today than there were

> decades ago -however my mother is highly sensitive to gluten and casein

> (celiac? good question) and when she visits my house I am always searching

> for good tasting GFCF foods for her in the form of bake mixes or cakes. I am

> not keeping track of how much I've spent and thrown away. How many things my

> mom who is more recently in her older age put on a strict GFCF diet eats and

> says " ugh! " You see, what I was told and who knows as the facts change in

> medicine as time goes on...but that if I outlived celiac I'd outgrow it by

> the age of 5...but it can come back in my elder years as something called

> sprue...I've looked it up and now celiac sprue are all one in the same. My

> Aunt who has her PhD in nursing (the one that is very sick now -who fell

> again last weekend) years ago told me that if it's not on the internet it's

> forgotten. She said there is information, knowledge, that is in books that

> is virtually unknown to some medical professionals today due to this.

>

> So anyway just wanted to give a background why when this whole GFCF thing

> first started becoming a " treatment " for autism -back when Tanner was

> little, and that's almost 14 years ago now. Most of us with apraxic children

> didn't put two and two together to say " oh well if it's for autistic

> children, then perhaps it is for apraxic children as well! " And as some of

> the old timers know I never jumped to that. Yes I know a GFCF diet saved my

> life when I was little, but no I am not on one today. And yes I hate the

> diet and no neither of my boys were raised on one. I can tell you that

> gluten and casein does not affect me at all today, and I have been tested

> and apparently today test negative for celiac. Go figure, I almost died of

> it when I was a baby, and my brother was in and out of the hospitals too,

> and the only things that helped me with the GFCFF diet, but whatever is

> around today -perhaps it's different than what I had that is supposed to be

> so rare.

>

> The things that make me feel best are fish oils and eating healthy -and I

> have never looked or felt better since on nutriiveda and I am not just

> saying that. Those of you on facebook that are my friends -you can see the

> difference if you check photos. And the fact that my boys responded so

> rapidly and positively to both fish oils and nutriiveda- perhaps there is

> some genetic link there. But that doesn't explain all the rest of the kids,

> teens, and adults too seeing the same thing,

>

> Perhaps as a society it's not that all these children are unable to digest

> gluten (for those not tested to need this diet -again if tested you have to

> follow it) Perhaps once again this all goes back to essential nutrients,

> what is lacking in out diets. Clearly once provided with something like

> nutriiveda we are reading over and over how for the " first time " the child's

> bowels are normalized, their skin is no longer transparent, they no longer

> have trouble eating or gaining weight, or growing. And most importantly

> -they have no trouble with digestion of these essential nutrients.

>

> Granted as Barbara just pointed out -yes nutriiveda is GFCF, but clearly

> that alone is not the reason it's working for our children. I'm sure this is

> just like one big puzzle and knowing that nutriiveda works should make the

> hair just stand right up on the back of every researcher's neck...because

> it's not anything I've seen before. I have some of my theories here why it

> may be working http://pursuitofresearch.org/science.html but don't go into

> the GFCF aspect other than stating it is GFCF amongst other things.

>

> But my point to this whole thing is that I never put my boys on this diet

> because neither tested to need it -neither of them were sick like me. I was

> a toothpick with a belly that made me look a little pregnant as a little

> girl. I looked like one of those starving children you see in the photos

> asking you to donate money. Once on a special diet I looked beautiful- GFCF

> did save my life. I am thankful -but again don't understand why so many just

> try it. Please know there are so many things to try first. After appropriate

> therapy, the right formula of fish oils (higher EPA to DHA with a small

> amount of GLA in almost all cases is the right formula) and based on the

> past few months with so far a 9 in 10 chance of working -nutriiveda, if you

> don't see improvement...maybe then. But keep in mind that our children are

> already different than most. Please don't do something that makes them

> different in another social way. And while others may just say " try it "

> again you are hearing from someone that grew up on this diet because I had

> to -get your child tested to make sure you do what is necessary for him or

> her -but don't just try a diet like GFCF unless needed.

>

> And one other thing in regards to milk. I agree there is a huge problem

> today with milk due to the way it's processed, hormones added etc. But milk

> in itself in raw form or organic whatever is a very good thing if pure. If

> you do the research- out of the desperation and sheep mentality there are so

> many children being pulled off a dairy there is a growing amount of children

> who have weak brittle bones, short statue that are obese. Those are the side

> effects of eliminating milk and I can state all the credible studies if

> needed. Not a good thing to have a child with a speech problem, unable to

> participate in meals with others, who is short, fat, with weak brittle

> bones.

>

> Do as much research as you can. Don't just follow the crowd. Question

> everything, ask, ask, ask. If a doctor suggests something that doesn't sound

> right like electroshock therapy -question it (oh heck I don't even think I'd

> question it I'd want to call 911 as I'm running away) But while you are

> searching -dig really deep about essential nutrients like the essential

> fatty acids and essential amino acids. It's not my theory that it's either a

> trace element or a synergistic blend that has been missing not just from our

> children's diets- but ours too -that is somehow in nutriiveda together with

> fish oils. And if you don't believe me- just try it for a week or so. Yes it

> is that fast. And you tell me why just about everyone feels and looks

> better. It's not too good to be true -the only logical explanation to me is

> that it's providing something essential to humans that has been greatly

> lacking or missing.

>

> So is pulling a child off gluten and casein the answer? It may solve a

> temporary problem but it doesn't answer the question. To me nutriiveda is

> not just GFCF- it's healing our children's brains and gut. Perhaps mine too.

> They wanted to remove my mother's gall bladder she had such issues prior to

> being on nutriiveda. For the first time she is alert, not falling asleep and

> as she said " having normal bowel movements for the first time in my life "

> (oh she would KILL me if she knew I wrote this!!!) But I'm writing it for

> science reasons as we are a family with a history of celiac. I PRAY I don't

> ever have to be GFCF again and hope because I take fish oils and now

> nutriiveda I won't have to. there....I said it. And I also want to say-

> please if you want to just try something- please just try nutriiveda. Show

> this to your child's doctor

> http://pursuitofresearch.org/NutriiVeda_Information.pdf

> http://pursuitofresearch.org/science.html and discuss it -and I'd share

> Mel's story too because there is hard proof from neuro scans and doctor's

> observations to back this all up -

> http://littlemermaidmelanie.wordpress.com and if anyone wants to speak

> with Robin, Mel's mom or anyone on this page

> http://pursuitofresearch.org/testimonials.html email me

lisa@...<lisa%40cherab.org>

>

> Got to run!

>

> =====

>

[Guest guest]

But Lois keep in mind some of what I'm saying is still the kid in me that grew

up on the diet. Of course there are more options today and goodness knows a

child today on a special diet isn't going to be standing out like I did back

then. But I'm just saying if you don't need it which the original poster didn't

know -she's just being encouraged to try it -kind of like the new McRib sandwich

or something. I'm just saying if you want to try things there are other first

options and want to point out the side from the views of a child who grew up on

this diet and hated it. Yes I am thankful for it -but would I be if I knew I

didn't need it? NO.

(insert smile here) And... isn't below your update once on nutriiveda from

about a week ago???

I mean my point is if we don't have to go this route...if we are just going to

try things...if not tested to need GFCF- why not just try nutriiveda? I mean 2

and a half years GFCF (which I know your children needed) vs just a few months

on nutriiveda -even if it wasn't so easy and cool to drink a protein shake a

day- clearly for results we can see the " winner "

" Lois Kalmick Trip's Mom " <lkalmick@...>

lkalmick@...

Hi Everyone,

I am now ready to report on my daughter's progress with Nutriiveda. My

darling E. has severe apraxia (all 3 forms) with SPD and hypotonia. At three

she was " Profound " with no ability to imitate, speak, chew etc. (the

diagnoses we received were frightening). We have been very aggressive in

every way possible with her treatment over the years -- thousands of hours

of behavioral, OT, speech (with an Apraxia specialist - 4 hours a week). She

is in a Gen Ed Kinder class with a full time behaviorist. Full DAN!

protocol -- more than 60 Hyperbaric treatments, GF/CF/No Soy for two years.

She has improved significantly over the years and is now a happy girl most

of the time -- but her communication delays and related social awkwardness

continue to vex her and us.

As a side note, finding CHERUB and reading " The Late Talker " was a Godsend.

For the first time I knew exactly what was going on with my beautiful

daughter. I've literally bought more than 20 copies to give to every doctor,

therapist and teacher that works with her.

Last January we started on 2 scoops a day of Nutriiveda. For the first few

weeks it was a bit hit and miss getting the dosage in. Then, in early

February, she got an ear infection (she is prone to ear problems) and was on

and off antibiotics for a few weeks. Finally, in early March, we got a

system going to get the 2 scoops a day in her, which she has had for over 6

weeks now.

The first change I noted was a couple of weeks in, E. was open to trying new

foods. She wanted to eat strawberries. If I cooked them in egg, she'd eat

cauliflower and broccoli. If you knew her food history you'd know how HUGE

this is -- she never ate anything solid until 4 years old, and then just

very easily to chew stuff like pasta -- nothing with any texture to speak of

(and yes, total terrible history of GI issues, especially constipation).

Last night she ate regular cauliflower. Her entire diet has improved

wonderfully -- she is nearly eating everything her triplet (she's a triplet

and identical twin -- 2 months preemie, born at 3 pounds) sisters eat now.

And she's pooped nearly every day for a week! Woo hoo!

Next was the drawing -- she's had so much trouble with her motor systems

that she never drew, never did playdough -- she started drawing like mad.

Going through tons of white board markers and loads of paper. Animals,

people, lessons from school [me] " what's that? " , [E.], " the wind. "

Okay, but about speech. My SLP is BLOWN AWAY, as are we. HUGE HUGE gains

over the last month. Like nothing we've ever seen. She is making spontaneous

comments. We can understand virtually everything she says (from less than

half a couple of months ago). E. is trying to tell me what happened at

school. Most recently, with a little prodding on my part, we sat for nearly

two hours while I asked her questions about things she liked and she asked

me back the questions. Her eye contact was laser beam good the whole time.

It's important to note that this conversation happened AFTER we spent time

in the pool -- so her sensory stuff was better under control and she could

access her language.

" I'll drink it later. " (avoiding fish oil juice). " She do not understand "

(about a rather clueless nanny). " The Little Mermaid " , " The Cow Book " ,

" Chicken Nuggets " , " the computer " , (etc.) answers to " favorites " questions

-- she also mentioned all of them in the middle of the night last night when

she got up to go to the bathroom -- she wanted to start the discussion about

favorites again. (Funny how E. has always been partial to Ariel too --

sleeps with that doll every night for past 4 years).

Honestly, E. still has a long road ahead -- when you go 6.5 years without

being able to communicate with the world, you have a lot of catching up to

do. But, we are more hopeful than ever that she will make it all the way.

E. is really smart -- though most people look at her and don't think so.

She memorizes everything (she knows every state capitol) I think in part

because she can access memorized information easier.

I really recommend the Nutriiveda. I am having a blast getting to " know " my

daughter better. There's something in this stuff that's working. I'll post

again later. Thanks!

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

=====

[Guest guest]

Definitely easier to start w/ supplementation than GF/CF -- and I don't mean

to be encouraging an all or nothing attitude! And yes that was my update --

we are seeing great surges and I love that we have the Nutriiveda in our

arsenal now -- it's really great stuff. I'm one of the " crazy " moms that

will not give up until my kids are 100% -- and everyone needs to know that

there are options and always real hope!

On Sat, May 8, 2010 at 10:59 AM, kiddietalk <kiddietalk@...> wrote:

>

>

> But Lois keep in mind some of what I'm saying is still the kid in me that

> grew up on the diet. Of course there are more options today and goodness

> knows a child today on a special diet isn't going to be standing out like I

> did back then. But I'm just saying if you don't need it which the original

> poster didn't know -she's just being encouraged to try it -kind of like the

> new McRib sandwich or something. I'm just saying if you want to try things

> there are other first options and want to point out the side from the views

> of a child who grew up on this diet and hated it. Yes I am thankful for it

> -but would I be if I knew I didn't need it? NO.

>

> (insert smile here) And... isn't below your update once on nutriiveda from

> about a week ago???

>

> I mean my point is if we don't have to go this route...if we are just going

> to try things...if not tested to need GFCF- why not just try nutriiveda? I

> mean 2 and a half years GFCF (which I know your children needed) vs just a

> few months on nutriiveda -even if it wasn't so easy and cool to drink a

> protein shake a day- clearly for results we can see the " winner "

>

> " Lois Kalmick Trip's Mom " <lkalmick@... <lkalmick%40gmail.com>>

> lkalmick@... <lkalmick%40gmail.com>

>

> Hi Everyone,

>

> I am now ready to report on my daughter's progress with Nutriiveda. My

> darling E. has severe apraxia (all 3 forms) with SPD and hypotonia. At

> three

> she was " Profound " with no ability to imitate, speak, chew etc. (the

> diagnoses we received were frightening). We have been very aggressive in

> every way possible with her treatment over the years -- thousands of hours

> of behavioral, OT, speech (with an Apraxia specialist - 4 hours a week).

> She

> is in a Gen Ed Kinder class with a full time behaviorist. Full DAN!

> protocol -- more than 60 Hyperbaric treatments, GF/CF/No Soy for two years.

> She has improved significantly over the years and is now a happy girl most

> of the time -- but her communication delays and related social awkwardness

> continue to vex her and us.

>

> As a side note, finding CHERUB and reading " The Late Talker " was a Godsend.

> For the first time I knew exactly what was going on with my beautiful

> daughter. I've literally bought more than 20 copies to give to every

> doctor,

> therapist and teacher that works with her.

>

> Last January we started on 2 scoops a day of Nutriiveda. For the first few

> weeks it was a bit hit and miss getting the dosage in. Then, in early

> February, she got an ear infection (she is prone to ear problems) and was

> on

> and off antibiotics for a few weeks. Finally, in early March, we got a

> system going to get the 2 scoops a day in her, which she has had for over 6

> weeks now.

>

> The first change I noted was a couple of weeks in, E. was open to trying

> new

> foods. She wanted to eat strawberries. If I cooked them in egg, she'd eat

> cauliflower and broccoli. If you knew her food history you'd know how HUGE

> this is -- she never ate anything solid until 4 years old, and then just

> very easily to chew stuff like pasta -- nothing with any texture to speak

> of

> (and yes, total terrible history of GI issues, especially constipation).

>

> Last night she ate regular cauliflower. Her entire diet has improved

> wonderfully -- she is nearly eating everything her triplet (she's a triplet

> and identical twin -- 2 months preemie, born at 3 pounds) sisters eat now.

> And she's pooped nearly every day for a week! Woo hoo!

>

> Next was the drawing -- she's had so much trouble with her motor systems

> that she never drew, never did playdough -- she started drawing like mad.

> Going through tons of white board markers and loads of paper. Animals,

> people, lessons from school [me] " what's that? " , [E.], " the wind. "

>

> Okay, but about speech. My SLP is BLOWN AWAY, as are we. HUGE HUGE gains

> over the last month. Like nothing we've ever seen. She is making

> spontaneous

> comments. We can understand virtually everything she says (from less than

> half a couple of months ago). E. is trying to tell me what happened at

> school. Most recently, with a little prodding on my part, we sat for nearly

> two hours while I asked her questions about things she liked and she asked

> me back the questions. Her eye contact was laser beam good the whole time.

> It's important to note that this conversation happened AFTER we spent time

> in the pool -- so her sensory stuff was better under control and she could

> access her language.

>

> " I'll drink it later. " (avoiding fish oil juice). " She do not understand "

> (about a rather clueless nanny). " The Little Mermaid " , " The Cow Book " ,

> " Chicken Nuggets " , " the computer " , (etc.) answers to " favorites " questions

> -- she also mentioned all of them in the middle of the night last night

> when

> she got up to go to the bathroom -- she wanted to start the discussion

> about

> favorites again. (Funny how E. has always been partial to Ariel too --

> sleeps with that doll every night for past 4 years).

>

> Honestly, E. still has a long road ahead -- when you go 6.5 years without

> being able to communicate with the world, you have a lot of catching up to

> do. But, we are more hopeful than ever that she will make it all the way.

> E. is really smart -- though most people look at her and don't think so.

> She memorizes everything (she knows every state capitol) I think in part

> because she can access memorized information easier.

>

> I really recommend the Nutriiveda. I am having a blast getting to " know " my

> daughter better. There's something in this stuff that's working. I'll post

> again later. Thanks!

>

> ~~~~~~~~~~~~~~~

>

>

> =====

>

[Guest guest]

I think we are all crazy then Lois! LOL Happy mother's day! Kate

>

> >

> >

> > But Lois keep in mind some of what I'm saying is still the kid in me that

> > grew up on the diet. Of course there are more options today and goodness

> > knows a child today on a special diet isn't going to be standing out like I

> > did back then. But I'm just saying if you don't need it which the original

> > poster didn't know -she's just being encouraged to try it -kind of like the

> > new McRib sandwich or something. I'm just saying if you want to try things

> > there are other first options and want to point out the side from the views

> > of a child who grew up on this diet and hated it. Yes I am thankful for it

> > -but would I be if I knew I didn't need it? NO.

> >

> > (insert smile here) And... isn't below your update once on nutriiveda from

> > about a week ago???

> >

> > I mean my point is if we don't have to go this route...if we are just going

> > to try things...if not tested to need GFCF- why not just try nutriiveda? I

> > mean 2 and a half years GFCF (which I know your children needed) vs just a

> > few months on nutriiveda -even if it wasn't so easy and cool to drink a

> > protein shake a day- clearly for results we can see the " winner "

> >

> > " Lois Kalmick Trip's Mom " <lkalmick@... <lkalmick%40gmail.com>>

> > lkalmick@... <lkalmick%40gmail.com>

> >

> > Hi Everyone,

> >

> > I am now ready to report on my daughter's progress with Nutriiveda. My

> > darling E. has severe apraxia (all 3 forms) with SPD and hypotonia. At

> > three

> > she was " Profound " with no ability to imitate, speak, chew etc. (the

> > diagnoses we received were frightening). We have been very aggressive in

> > every way possible with her treatment over the years -- thousands of hours

> > of behavioral, OT, speech (with an Apraxia specialist - 4 hours a week).

> > She

> > is in a Gen Ed Kinder class with a full time behaviorist. Full DAN!

> > protocol -- more than 60 Hyperbaric treatments, GF/CF/No Soy for two years.

> > She has improved significantly over the years and is now a happy girl most

> > of the time -- but her communication delays and related social awkwardness

> > continue to vex her and us.

> >

> > As a side note, finding CHERUB and reading " The Late Talker " was a Godsend.

> > For the first time I knew exactly what was going on with my beautiful

> > daughter. I've literally bought more than 20 copies to give to every

> > doctor,

> > therapist and teacher that works with her.

> >

> > Last January we started on 2 scoops a day of Nutriiveda. For the first few

> > weeks it was a bit hit and miss getting the dosage in. Then, in early

> > February, she got an ear infection (she is prone to ear problems) and was

> > on

> > and off antibiotics for a few weeks. Finally, in early March, we got a

> > system going to get the 2 scoops a day in her, which she has had for over 6

> > weeks now.

> >

> > The first change I noted was a couple of weeks in, E. was open to trying

> > new

> > foods. She wanted to eat strawberries. If I cooked them in egg, she'd eat

> > cauliflower and broccoli. If you knew her food history you'd know how HUGE

> > this is -- she never ate anything solid until 4 years old, and then just

> > very easily to chew stuff like pasta -- nothing with any texture to speak

> > of

> > (and yes, total terrible history of GI issues, especially constipation).

> >

> > Last night she ate regular cauliflower. Her entire diet has improved

> > wonderfully -- she is nearly eating everything her triplet (she's a triplet

> > and identical twin -- 2 months preemie, born at 3 pounds) sisters eat now.

> > And she's pooped nearly every day for a week! Woo hoo!

> >

> > Next was the drawing -- she's had so much trouble with her motor systems

> > that she never drew, never did playdough -- she started drawing like mad.

> > Going through tons of white board markers and loads of paper. Animals,

> > people, lessons from school [me] " what's that? " , [E.], " the wind. "

> >

> > Okay, but about speech. My SLP is BLOWN AWAY, as are we. HUGE HUGE gains

> > over the last month. Like nothing we've ever seen. She is making

> > spontaneous

> > comments. We can understand virtually everything she says (from less than

> > half a couple of months ago). E. is trying to tell me what happened at

> > school. Most recently, with a little prodding on my part, we sat for nearly

> > two hours while I asked her questions about things she liked and she asked

> > me back the questions. Her eye contact was laser beam good the whole time.

> > It's important to note that this conversation happened AFTER we spent time

> > in the pool -- so her sensory stuff was better under control and she could

> > access her language.

> >

> > " I'll drink it later. " (avoiding fish oil juice). " She do not understand "

> > (about a rather clueless nanny). " The Little Mermaid " , " The Cow Book " ,

> > " Chicken Nuggets " , " the computer " , (etc.) answers to " favorites " questions

> > -- she also mentioned all of them in the middle of the night last night

> > when

> > she got up to go to the bathroom -- she wanted to start the discussion

> > about

> > favorites again. (Funny how E. has always been partial to Ariel too --

> > sleeps with that doll every night for past 4 years).

> >

> > Honestly, E. still has a long road ahead -- when you go 6.5 years without

> > being able to communicate with the world, you have a lot of catching up to

> > do. But, we are more hopeful than ever that she will make it all the way.

> > E. is really smart -- though most people look at her and don't think so.

> > She memorizes everything (she knows every state capitol) I think in part

> > because she can access memorized information easier.

> >

> > I really recommend the Nutriiveda. I am having a blast getting to " know " my

> > daughter better. There's something in this stuff that's working. I'll post

> > again later. Thanks!

> >

> > ~~~~~~~~~~~~~~~

> >

> >

> > =====

> >

[Guest guest]

My son had a HUGE improvement on a GFCF diet. We later tested him and he has a

gluten allergy. Please understand that there is a difference between a gluten

allergy test and Celiac test. There are many neurological effects of allergens

and if your child is allergic then it will make a difference. I would also

reccomend McCarthy's book even if your child doesn't have autism, but I

would get Healing and Preventing Autism (her second book) It talks about all of

the different methods that she and others have used. Yeast overgrowth is also a

big one that she saw an improvement with.

>

> My son was diagnosed with apraxia a couple of months before turning 3. He just

turned 5, and will be entering a transistional kindergarden in the fall. So far

we have not seen anything other then a severe speech delay. But, lately I am

starting to notice some suble things that is starting to perk my attention. I

have him on fish oil, and the improvement was noticable, but he is still very

behind.

> I was at his IEP about 3 wks ago. They gave me an article one of them had

seen. It was a small study done at oakland childrens on apraxia. They took 26

children and gave them a full panal blood test, and found that most had specific

vitamin deficenties, and most shared the cealic desease gene.

> Tonight I met a parent of a child who had been diagnosed with sensory

processing disorder. She heard most children with nerological disorders have

trouble with gluten. She said she tried it, and took her child off all gluten

and dairy, as well. She said she started on monday and he was a completely

different child by friday.

> When I was telling my mother about this, she's lactose intolerent, she told

me her doc told her gluten and dairy intolerence runs hand in hand. My son's fav

food is cheese. Life would not be the same without it. :-)

> Does anyone have any information about gluten and apraxia? And why is gluten

and dairy linked?

>

> Thank you!!!

> Crystal

>