RE: Ped. Neuro Appointment

[Guest guest]

Hi ! I have my son scheduled to see a Pediatric Neurologist for the first

time on March 1st. Do you think I should stop the Nutriiveda so that the

Neurologist sees him as he would be without it?

I guess I have two goals in mind for this visit. I would like for him to do a

total metabolic blood work-up (as we have never had any blood work done) and I

would like to keep the neurologist's diagnoses and recommendations for my son's

IEP meeting (in hopes that it will help to convince the IEP Group to give him

the appropriate therapy.)

Any thoughts?

Best Regards,

________________________________

[Guest guest]

Hi ,

Did you have a chance to take a look at my question below? Do you have any

recommendations? Or does anyone else?

Best Regards,

From: Stahl,

Sent: Monday, February 15, 2010 4:25 PM

' '

Subject: RE: [ ] Ped. Neuro Appointment

Hi ! I have my son scheduled to see a Pediatric Neurologist for the first

time on March 1st. Do you think I should stop the Nutriiveda so that the

Neurologist sees him as he would be without it?

I guess I have two goals in mind for this visit. I would like for him to do a

total metabolic blood work-up (as we have never had any blood work done) and I

would like to keep the neurologist's diagnoses and recommendations for my son's

IEP meeting (in hopes that it will help to convince the IEP Group to give him

the appropriate therapy.)

Any thoughts?

Best Regards,

________________________________

[Guest guest]

you may have missed my last message to you (I have it posted again below)

but it's clear that

-even your own husband and mother doubt the surges from 12 months to 21 months

after 2 weeks on the nutriiveda is from the nutriiveda

-even your child's doctor is thrilled but doubts your child's remarkable surges

are from the nutriiveda and just humored you with " just keep doing whatever you

are doing "

-even some people here who haven't tried it yet doubt what we are seeing

It is hard to believe but fortunate we see the proof in it seems just about all

cases on this product in DAYS. In the metabolic work up the most important test

in my opinion is the carnitine. Based on where you son is now -I'd say you have

little else to worry about.

In my opinion you HAVE to stop the nutriiveda to get an accurate diagnosis and

evaluation because the only explanation to a doctor at this point without

research will be that your son was misdiagnosed with apraxia -which perhaps he

was. Only one way to know for sure and that's to stop it. I mean it does

appear to be highly coincedental in the surges were in days and just 2 weeks so

dramatic just as they are for all our children of all ages from little to in

their twenties like Mel. But outside of doctors that know about nutriiveda from

this group even the doctors that formulated and endorsed it are shocked at what

we are seeing. Some are just crediting the isolate protein and/or amino acids

and forgetting there is also a synergistic blend of ayurvedic botanicals that

include turmeric which is now well known for it's help in neuro repair -and

that's just one of them.

For most of us the regression didn't take that long, just days- but we don't

know how long till there is neuro repair if that is what is going on which I

suspect is happening and the younger the quicker I know from other research. So

I think you should stop now -and not start until after the appointment. From

what we have seen it's like the fish oils- once back on he'll surge again -but

if just like the fish oils be prepared for frustration at losing the skills he

just mastered.

It's clear we need research on this sooner rather than later.

~here's my last message to you -and do tell...did your husband and mom doubt the

diagnosis of apraxia anyway?

Re: 25month old son on NutriiVeda update

I understand that too. It's funny with this one the Dads do appear to be

more skeptical than the Moms -at least to start. Most are believers once they

see all your husband has -but your child again is so young. Your husband

probably never quite accepted that there is anything but a speech delay going on

anyway at 25 months old -and just thinks this is good the craziness is all over

and others are seeing what he's suspected all along -that his son was just a

late talker. Am I right? And come to think of it -your mom probably falls into

that same " he is just a late talker " boat- right?

There is only one way to prove it's from the nutriiveda. Stop it. At least for

a few days. No harm in stopping it and it will be the only way to prove that

it's what made the difference. I do know with fish oils the younger the better

in helping to get the brain to rewire and it could be the same with the

nutriiveda -but still it's only been 2 weeks. If the surges you are seeing

which are so dramatic were just coincidental than certainly stopping the

nutriiveda won't make any difference.

Let us know! (and like the fish oils once you start again the surges come back

-so don't worry about that)

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[Guest guest]

Hi !

OK. I will take your advice and stop the Nutriiveda at the end of the week.

I thought that was going to be what I would have to do. That will give him

one week off of it before his appointment. We are going on a mini vacation next

week, so I hope that will distract him some. To answer your question, yes, my

husband was in denial about the Apraxia. He admits that in the back of his mind

he was thinking (and hoping) that it was just a delay and that Jack would just

start talking in his own time. He also resisted reading the information about

apraxia that I provided to him. (I think ignorance was bliss for him on this

one.) Now that we have the diagnoses, he is starting to accept it and has begun

to work more diligently on Jack's homework with him when I am not able too. My

Mom on the other hand didn't really have an opinion one way or the other (or at

least she never voiced it to me.) Jack receives some of his therapy at her

house since I have to work, so through hearing what the speech therapist had to

say and reading through the many articles and websites that I have sent her over

the past 8 months, I think she believed me when I told her I thought Jack had

CAS. She did not seem surprised when I told her he was diagnosed with it.

I also wanted to report that yesterday Jack was saying " doe, doe, doe. " I am

not really sure what he was referring too. I think he was just making a funny

sound. The reason I want to report it is because he has never made the " d "

sound before! I even got him to repeat it several more times! Another thing I

noticed yesterday is that he was saying " Woogie Bu " It took me a second to

figure it out, but he was showing me the Woody and Buzz characters on his PJ's!

He has never had so many spontaneous word approximations and rarely does he say

two word approximations together! He also was saying " wan moe. " He wanted ONE

MORE ride on his truck before bedtime! He is also saying " Mommy " whenever he

wants me now, which just makes me feel so good! I hate to stop the NutriiVeda

only to see this disappear, but I know I have too to reach our long term goals

with him.

I will let you know if (or more likely when) Jack begins to regress once I stop

the NutriiVeda. (I wish there was a face with a tear. That would more

accurately describe how I feel about it.)

Thanks for all of your help!

IL

________________________________

[Guest guest]

I had to hide the fish oils from Glenn when I took Tanner off of them. You have

to be strong because you know as well as anyone that your doctor isn't going to

believe the surges are from anything but developmental reasons or misdiagnosis

anyway- and then where will he be in securing appropriate therapies. Don't

worry about doing something like this for a good cause . It is so hard

though -and not just on us but for our children.

About the regression I see it one of two ways. Either your son will regress and

then have the evaluation and then you put him back on again and all is golden as

it is right now...and then all knows he really is apraxic and you have secured

the appropriate therapies....or you take him off -he doesn't regress one bit

-the surge was coincidental...and the questions of misdiagnosis has to be looked

at. Based on the fact that he also has low tone I'd lean towards he probably

was not misdiagnosed -but time will tell- and either way it's good news because

even if he is apraxic clearly based on feedback we found something that is

working for the greater majority of our children in days -and continuing to work

more and more as time goes on. And being your son is only 25 months old -he has

plenty of time to probably at this point either way be mainstreamed and " normal "

by kindergarten based on what you are reporting already!!! I mean 12 months to

21 months in like 2 weeks -that's incredible!!!!

About the " doe doe doe " to me that means that Jack was trying to say a sentence

and blocking. For example Tanner would point outside and say " die die die " so

the doe could be a sound on the front or back end of one of the words in the

sentence -if that provides you with any clues. I'll never forget when Tanner

through a fit because we didn't know what " Bo Bo Bobo? " meant -it was before we

knew he decided to call Dakota " Bobo " for I guess brother vs saying the whole

word Dakota -and he was saying " where is my brother? " We have to be so good at

interpreting at times early one.

So far is the only parent video taping their child Gretchen Walsh? (who happens

to be a producer for the TV news so that's why she's so good) I mean to watch

the before and after videos of her son - amazing. maybe once you

take Jack off if/when he regresses -take video -and then video again once back

on since in all the other cases the surges and regressions are in days.

I feel for you -this is going to be tough -but think of the bigger picture

-you have to do this just in case he really is apraxic -because based on where

he is right now there is no way that he'll be able to secure all the appropriate

services you would want for a child with apraxia...and again -until research no

doctor that doesn't know what's going on in this group will think the surge is

from anything but developmental...or misdiagnosis. I mean there are some close

minded professionals today that still don't acknowledge fish oils effect on

speech and motor planning!!!!

Big picture -it will be great either way if you take him off for a bit!!!

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