Re: Prayers to both Alyssa and Matt!!!

[Guest guest]

,

No I didn't take Matt off of NV because of you or anything in particular. I was

just lazy!  So last week I started to give it back to him and I quickly noticed

an improvement in his temperament.  I never once thought about him having a

seizure.  Today took me by complete surprise.  I remember that I started him on

NV on Jan 24, 2010 and his last seizure was Feb. 4, 2010. So it seems it might

take two weeks or so to build up in his system?  I don't know, I hoping it could

be as easy as that.  My comfort level with letting Matt go out and play without

being a helicopter mom was feeling really good. 

Okay time to go watch a movie with my honey

Good night

From: kiddietalk <kiddietalk@...>

Subject: [ ] Prayers to both Alyssa and Matt!!!

Date: Friday, February 18, 2011, 8:23 PM

Oh Alyssa I'm so sorry!!!

When you say take a break from NV- is there a reason? Tanner now loves his NV-

is Matt sick of it? Well the good news is that if it worked for Matt and all the

others that stopped having seizures and went off meds due to it- it should work

again.

Please keep us posted and if you are low on NV I'm sure you can get some from

Barbara. Does she know (well I guess now she does!)

While I know for kids with apraxia and autism if we take them off after 6 months

to a year in some cases now there is no harm in regression for autism or

apraxia- other than regression. But stopping NV or even reducing dosage after

years on multiple medications where Matt still had seizures and the doctor was

going to remove part of his front temporal lobe...nobody has that answer and the

risk is great from where he was prior. Please don't tell me you stopped it

because of this blog I wrote!!

http://pursuitofresearch.org/2011/01/19/one-year-later-a-possible-cure-through-e\

ssential-nutrition-for-autism-apraxia-etc/

Again I really only meant it for the apraxia and autism -as it seems the goal

for most parents is to use something and be able to stop it. But as we know we

can't stop essentials of air, water, or nutrients- all are needed one way or

another and all NV is would be essential nutrients- so if whatever essential

nutrients are in it aren't consumed in other foods one would need it for life.

I just know it's going to be OK again Alyssa! Do you think we should update

your page now for seizures and report this so others know?

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

in-treatment-of-seizures/ There is no way to know if he had the seizure because

he stopped NV for 2 weeks -but we can just document exactly what happened.

I do plan on bringing Tanner down to maintenance at some point which would be a

scoop or two a day vs any more than that, but as I wrote on that page I'm one of

those parents that wants Tanner to take fish oils for life -and now that I see

what NV does -I think having a protein shake a day as a snack or a meal even is

healthy- so why not? ....weren't you giving Matt a half dosage just 2 scoops a

day and yet he still didn't have a seizure...or did you go back to the 4 a day?

When you started him back up was it on the full or half dosage for his age?

Until research we won't know and thus we are years off from the answer. Did you

speak with his doctor yet? If you did what did he say?

I do honestly believe the reason for the seizure was the lack of NV for 2 weeks

and that he'll be fine again once back on -and I would give him the 4 scoops a

day again.

I'm praying for you and Matt that NV is the answer again for now!!!

=====

[Guest guest]

Alyssa, ( & group)

Oh my! Poor Matt!! YES! I feel strongly that the reason for Matt's seizure was

that he was off of the NV 2 weeks. I would recommend putting him back on 4

scoops per day ASAP! I know he's been on the half dosage for his age of 2 scoops

a day but when did that start? I can't remember.

It seems that Matt was doing well on 2 scoops a day--maintenance but that's it.

When he was on 4 scoops a day last spring/summer is when I remember more

speech-language gains. I am betting that he needs 4 scoops a day to make

therapeutic gains. Let's see how he does back on 4 scoops a day. If you have to

doctor the shakes again with Nestle's choc syrup or peanut butter, etc, do it. I

would recommend treating the NV shakes like medicine--gotta take it;

non-negotiable.

Keep me posted!! Call or txt me.

Warmest wishes,

Barbara A , M.S.,CCC-SLP

CEO,

Help Me Speak, LLC

www.helpmespeak.com

2500 Wallington Way

Suite 103

Marriottsville, MD 21104

410-442-9791

Ask me about NutriiVeda!

On Feb 18, 2011, at 8:53 PM, Alyssa Nagy <aw_nagy@...> wrote:

> ,

> No I didn't take Matt off of NV because of you or anything in particular. I

was just lazy! So last week I started to give it back to him and I quickly

noticed an improvement in his temperament. I never once thought about him

having a seizure. Today took me by complete surprise. I remember that I

started him on NV on Jan 24, 2010 and his last seizure was Feb. 4, 2010. So it

seems it might take two weeks or so to build up in his system? I don't know, I

hoping it could be as easy as that. My comfort level with letting Matt go out

and play without being a helicopter mom was feeling really good.

>

> Okay time to go watch a movie with my honey

> Good night

>

>

>

> From: kiddietalk <kiddietalk@...>

> Subject: [ ] Prayers to both Alyssa and Matt!!!

>

> Date: Friday, February 18, 2011, 8:23 PM

>

> Oh Alyssa I'm so sorry!!!

>

> When you say take a break from NV- is there a reason? Tanner now loves his NV-

is Matt sick of it? Well the good news is that if it worked for Matt and all the

others that stopped having seizures and went off meds due to it- it should work

again.

>

> Please keep us posted and if you are low on NV I'm sure you can get some from

Barbara. Does she know (well I guess now she does!)

>

> While I know for kids with apraxia and autism if we take them off after 6

months to a year in some cases now there is no harm in regression for autism or

apraxia- other than regression. But stopping NV or even reducing dosage after

years on multiple medications where Matt still had seizures and the doctor was

going to remove part of his front temporal lobe...nobody has that answer and the

risk is great from where he was prior. Please don't tell me you stopped it

because of this blog I wrote!!

>

>

http://pursuitofresearch.org/2011/01/19/one-year-later-a-possible-cure-through-e\

ssential-nutrition-for-autism-apraxia-etc/

>

> Again I really only meant it for the apraxia and autism -as it seems the goal

for most parents is to use something and be able to stop it. But as we know we

can't stop essentials of air, water, or nutrients- all are needed one way or

another and all NV is would be essential nutrients- so if whatever essential

nutrients are in it aren't consumed in other foods one would need it for life.

>

> I just know it's going to be OK again Alyssa! Do you think we should update

your page now for seizures and report this so others know?

>

>

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

in-treatment-of-seizures/ There is no way to know if he had the seizure because

he stopped NV for 2 weeks -but we can just document exactly what happened.

>

> I do plan on bringing Tanner down to maintenance at some point which would be

a scoop or two a day vs any more than that, but as I wrote on that page I'm one

of those parents that wants Tanner to take fish oils for life -and now that I

see what NV does -I think having a protein shake a day as a snack or a meal even

is healthy- so why not? ....weren't you giving Matt a half dosage just 2 scoops

a day and yet he still didn't have a seizure...or did you go back to the 4 a

day? When you started him back up was it on the full or half dosage for his age?

>

> Until research we won't know and thus we are years off from the answer. Did

you speak with his doctor yet? If you did what did he say?

>

> I do honestly believe the reason for the seizure was the lack of NV for 2

weeks and that he'll be fine again once back on -and I would give him the 4

scoops a day again.

>

> I'm praying for you and Matt that NV is the answer again for now!!!

>

> =====

>

>

[Guest guest]

Before I forget, thank you to everyone for your prayers.  The support  means a

lot.

Barbara,  has been drinking his milk shake again starting early last

week.  He has no trouble drinking it I was just lazy about it and maybe over

confident on our success so far?  I know this is about Matt but I feel so

beaten!  This year has been a hug challenge for me fighting for Matt's rights

and not coming up with the best out come!  At the moment I am having a hard time

picking myself up and moving on but you know me I will!

Need to go inject some coffee so we can take our beautiful boy out on a train

ride today.

Alyssa

>

> From: kiddietalk <kiddietalk@...>

> Subject: [ ] Prayers to both Alyssa and Matt!!!

>

> Date: Friday, February 18, 2011, 8:23 PM

>

> Oh Alyssa I'm so sorry!!!

>

> When you say take a break from NV- is there a reason? Tanner now loves his NV-

is Matt sick of it? Well the good news is that if it worked for Matt and all the

others that stopped having seizures and went off meds due to it- it should work

again.

>

> Please keep us posted and if you are low on NV I'm sure you can get some from

Barbara. Does she know (well I guess now she does!)

>

> While I know for kids with apraxia and autism if we take them off after 6

months to a year in some cases now there is no harm in regression for autism or

apraxia- other than regression. But stopping NV or even reducing dosage after

years on multiple medications where Matt still had seizures and the doctor was

going to remove part of his front temporal lobe...nobody has that answer and the

risk is great from where he was prior. Please don't tell me you stopped it

because of this blog I wrote!!

http://pursuitofresearch.org/2011/01/19/one-year-later-a-possible-cure-through-e\

ssential-nutrition-for-autism-apraxia-etc/

>

> Again I really only meant it for the apraxia and autism -as it seems the goal

for most parents is to use something and be able to stop it. But as we know we

can't stop essentials of air, water, or nutrients- all are needed one way or

another and all NV is would be essential nutrients- so if whatever essential

nutrients are in it aren't consumed in other foods one would need it for life.

>

> I just know it's going to be OK again Alyssa! Do you think we should update

your page now for seizures and report this so others know?

>

>

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

in-treatment-of-seizures/ There is no way to know if he had the seizure because

he stopped NV for 2 weeks -but we can just document exactly what happened.

>

> I do plan on bringing Tanner down to maintenance at some point which would be

a scoop or two a day vs any more than that, but as I wrote on that page I'm one

of those parents that wants Tanner to take fish oils for life -and now that I

see what NV does -I think having a protein shake a day as a snack or a meal even

is healthy- so why not? ....weren't you giving Matt a half dosage just 2 scoops

a day and yet he still didn't have a seizure...or did you go back to the 4 a

day? When you started him back up was it on the full or half dosage for his age?

>

> Until research we won't know and thus we are years off from the answer. Did

you speak with his doctor yet? If you did what did he say?

>

> I do honestly believe the reason for the seizure was the lack of NV for 2

weeks and that he'll be fine again once back on -and I would give him the 4

scoops a day again.

>

> I'm praying for you and Matt that NV is the answer again for now!!!

>

> =====

>

>

[Guest guest]

Sending prayers to you and Matt. Jeanne

> >

> > From: kiddietalk <kiddietalk@...>

> > Subject: [ ] Prayers to both Alyssa and Matt!!!

> >

> > Date: Friday, February 18, 2011, 8:23 PM

> >

> > Oh Alyssa I'm so sorry!!!

> >

> > When you say take a break from NV- is there a reason? Tanner now loves his

NV- is Matt sick of it? Well the good news is that if it worked for Matt and all

the others that stopped having seizures and went off meds due to it- it should

work again.

> >

> > Please keep us posted and if you are low on NV I'm sure you can get some

from Barbara. Does she know (well I guess now she does!)

> >

> > While I know for kids with apraxia and autism if we take them off after 6

months to a year in some cases now there is no harm in regression for autism or

apraxia- other than regression. But stopping NV or even reducing dosage after

years on multiple medications where Matt still had seizures and the doctor was

going to remove part of his front temporal lobe...nobody has that answer and the

risk is great from where he was prior. Please don't tell me you stopped it

because of this blog I wrote!!

> >

> >

http://pursuitofresearch.org/2011/01/19/one-year-later-a-possible-cure-through-e\

ssential-nutrition-for-autism-apraxia-etc/

> >

> > Again I really only meant it for the apraxia and autism -as it seems the

goal for most parents is to use something and be able to stop it. But as we know

we can't stop essentials of air, water, or nutrients- all are needed one way or

another and all NV is would be essential nutrients- so if whatever essential

nutrients are in it aren't consumed in other foods one would need it for life.

> >

> > I just know it's going to be OK again Alyssa! Do you think we should update

your page now for seizures and report this so others know?

> >

> >

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

in-treatment-of-seizures/ There is no way to know if he had the seizure because

he stopped NV for 2 weeks -but we can just document exactly what happened.

> >

> > I do plan on bringing Tanner down to maintenance at some point which would

be a scoop or two a day vs any more than that, but as I wrote on that page I'm

one of those parents that wants Tanner to take fish oils for life -and now that

I see what NV does -I think having a protein shake a day as a snack or a meal

even is healthy- so why not? ....weren't you giving Matt a half dosage just 2

scoops a day and yet he still didn't have a seizure...or did you go back to the

4 a day? When you started him back up was it on the full or half dosage for his

age?

> >

> > Until research we won't know and thus we are years off from the answer. Did

you speak with his doctor yet? If you did what did he say?

> >

> > I do honestly believe the reason for the seizure was the lack of NV for 2

weeks and that he'll be fine again once back on -and I would give him the 4

scoops a day again.

> >

> > I'm praying for you and Matt that NV is the answer again for now!!!

> >

> > =====

> >

> >