Re: Has anyone had a bad experience when their child came off NV?

[Guest guest]

Hi , I actually just posted an update on my son 's regression after

being off of NV for 4 days due to my running out of the product. It didn't get

any better until he had an NV drink , he started to get back to himself.Just

curious, why did you take your child off of it? He was totally distressed for

those days, very over sensitive to sound where he was actually cringing. Not

even wanting to say any words. My son is off of his seizure meds. now after 9

yrs. and I believe it is due to the NV. He also had a normal EEG for the first

time, so he will be staying on it, besides it being the most healthy thing you

can probably get your hands on to give our kids! If you would like to contact me

privately my # is 631-447-0615 ~~Dawn Falley

>

> Hi All,

>

> Just curious, has anyone experienced regression, or bad temperament when they

took their child off NV? How long did that go on for? Did it get better? or Did

you just put them back on? Any comments would be appreciated.

>

> Thanks!

>

[Guest guest]

We stopped the NV and fish oils on Tuesday temporarily because my son has his

school speech evaluation (for transition to preschool) on Monday. I haven't

really noticed any regression speechwise yet - actually, I had two therapists

tell me on Wednesday how focused he was and how good some of his sounds are

coming in. We have noticed other things. First his stools are really loose and

stinky - this generally was NOT an issue pre NV. Second, his sleeping has

gotten really bad - we've had three bad nights since. This past night was the

worst - he had us up at 3:30 and it took us until 6 to get him back down. I

have to figure being off the fish oils and/or the NV is contributing. My husband

and I are both exhausted, and I'm wondering if we'll make it to Monday still off

them. We'll definitely go back on both, but not sure if we'll go off them again

for his next set of evaluations.

-

>

> Hi All,

>

> Just curious, has anyone experienced regression, or bad temperament when they

took their child off NV? How long did that go on for? Did it get better? or Did

you just put them back on? Any comments would be appreciated.

>

> Thanks!

>

[Guest guest]

There were two times Tanner was off of NV -and both times not my choice. Once

was a shipping delay, and once was a sleepover for the weekend where my husband

didn't pack his NV too. Both were in the early stages prior to us being aware

how life changing NV is. Both times Tanner's speech regressed but he was never

off more than three days -and I again did not choose to take him off either time

as I know NV is beneficial to him beyond just about anything ever. Therapy,

essential fatty acids and essential amino acids and nutrients from whole food

sources to me now are all key.

October 16th will be one year that my now 14 year old son has been on NV -he

again is 100 percent surged just about across the board in all areas. I

probably can look to lower his dosage down to just one serving (2 scoops) a day

as a maintenance dosage -like one protein shake a day -but his school work load

is super tough and honestly I won't even try it until the next summer break.

I'll lower NV but like fish oils I won't try nor want to take my child off of

something that is providing essential nutrients -in this case of NV all of the

essential amino acids and nutrients needed daily from whole food sources as

clearly based on almost across the board results there must be some or a blend

of essential nutrients in NV our children's body's need.

I am again planning on trying to bring it down to where Tanner only needs to

take one protein shake a day as he grows older which is very normal -I've had

them for years now, and take as well his one to three capsules of fish oils a

day as maintenance for both his condition of apraxia and of course good health.

Next summer I'll let all know how that goes.

It may be the way you asked the question- but is there a reason you want to

stop/stopped NV? Here again are some reasons based on theory and science why I

believe NV is working http://pursuitofresearch.org/science.html -and I believe

it will be validated with a double blind clinical trial to prove it's not only

therapeutic, but actually helping our children's brain to rewire -seeing what

I've seen with my own eyes -that is what I and others like me believe in our

hearts. I know it will be proven -it's impossible for it not to be based on

overwhelming reports.

I also want to say I so appreciate the support from this group because I know

prior to actually trying NV it does seem hard to believe -and I'm proud of all

of you for thinking outside the box, and also extremely appreciative for all the

doctors who approve NV which is just about all based on the fact it's just whole

food...it doesn't matter if they say " I don't know if it will help but it looks

like a nutritionally sound product "

Most of the children won't be able to benefit from NV until there is research

and it hits the average parent. Because as we know most verbal disabled

children fall through the cracks and most parents, perhaps due to lack of time,

money, education, either do not know how to or don't know they are even able to

go above and beyond to help their verbal disabled child succeed. In addition

there are numerous misdiagnosed verbal disabled children all over today -I hear

about them every day -teens still unable to talk because they spent most of

their life diagnosed as autistic and they just found out it was apraxia. Check

http://www.apraxia.org and you can read so many stories there as well -and that

group I believe gets out to the general public more. Together we will bring all

the children a smile and a voice!

=====

[Guest guest]

Hi Dawn,

I haven't yet received NV, still waiting for it.Actually I posted this question

after reading your posts. Curious to know about other peoples experiences. A

way to prepare my self for the unknown. I like to be ahead of the game, so that

I'm not scratching my head wondering what the heck is going on. I plan on

putting all 3 of my boys on NV, they all have some oral motor issues, and

thought this would be great for them. I am terrified that if i ever have to

take them off (maybe not having any in the house - like me ordering NV late)

what a mad house it would be with 3 yr old boys!

________________________________

From: Dawn Falley <dawn.falley4@...>

Sent: Fri, September 17, 2010 9:13:50 AM

Subject: [ ] Re: Has anyone had a bad experience when their

child came off NV?

Hi , I actually just posted an update on my son 's regression after

being off of NV for 4 days due to my running out of the product. It didn't get

any better until he had an NV drink , he started to get back to himself.Just

curious, why did you take your child off of it? He was totally distressed for

those days, very over sensitive to sound where he was actually cringing. Not

even wanting to say any words. My son is off of his seizure meds. now after 9

yrs. and I believe it is due to the NV. He also had a normal EEG for the first

time, so he will be staying on it, besides it being the most healthy thing you

can probably get your hands on to give our kids! If you would like to contact me

privately my # is 631-447-0615 ~~Dawn Falley

>

> Hi All,

>

> Just curious, has anyone experienced regression, or bad temperament when they

>took their child off NV? How long did that go on for? Did it get better? or Did

>you just put them back on? Any comments would be appreciated.

>

> Thanks!

>

[Guest guest]

Hi , good luck with the NV, when you get it and if you have any questions

about it, you can call me anytime, my son had a really good week and even did a

few NEW things in school that his PT commented on! ~~Dawn Falley 631-447-0615

> >

> > Hi All,

> >

> > Just curious, has anyone experienced regression, or bad temperament when

they

> >took their child off NV? How long did that go on for? Did it get better? or

Did

> >you just put them back on? Any comments would be appreciated.

> >

> > Thanks!

> >

>

>

>

>

>

[Guest guest]

My son (3 1/2 years) has been on and off NV since March. He had some amazing

initial gains--potty training, sleeping through the night, singing,

articulations, imaginative play, jummping. Then he just refused his NV drink.

Well, he started waking in the night and regressed in pottying, but did not have

horrible behaviors problems. He also lost some smoothness in his speech. I got

him back on it and those things smoothed out. Then several weeks later, we

traveled and he wasn't getting it and the same things happened. His speech was

harder to understand, he was having accidents and not sleeping well. But again

no more toddler than anytime before. Both times he did not lose singing, but

didn't sing as often and didn't lose imaginative play, but seemed to need more

prompting to make up stories. It was like he was dulled, but not broken--if

that makes sense. The last time he was off NV, he regressed in pottying and is

still regressed although he's taking it again in the form of peanut butter

cookies.

So off of NV he's duller and harder to understand, but either he doesn't care

that much or he doesn't notice. Either way he's not lashing out in frustration

or really behaving any worse than normal. And each time he goes off, he doesn't

regress to where we was...just back a few steps and he gains them back within a

few weeks of being on NV again.

Liralen

[Guest guest]

I just read you saw greater surges with fish oils than NV, and I read other

people saw greater surges with NV than fish oil. I was impressed by the surges

you saw on NV that you wrote below but you don't say what you saw on fish oil?

We make sure our son gets his fish oils every day. Do you let your child go on

and off fish oils too? I don't think I'd let my son go off NV if he regressed,

even if I had to hide it in everything he ate. Does it taste that bad there's no

way to hide it in something? Kate

>

> My son (3 1/2 years) has been on and off NV since March. He had some amazing

initial gains--potty training, sleeping through the night, singing,

articulations, imaginative play, jummping. Then he just refused his NV drink.

Well, he started waking in the night and regressed in pottying, but did not have

horrible behaviors problems. He also lost some smoothness in his speech. I got

him back on it and those things smoothed out. Then several weeks later, we

traveled and he wasn't getting it and the same things happened. His speech was

harder to understand, he was having accidents and not sleeping well. But again

no more toddler than anytime before. Both times he did not lose singing, but

didn't sing as often and didn't lose imaginative play, but seemed to need more

prompting to make up stories. It was like he was dulled, but not broken--if

that makes sense. The last time he was off NV, he regressed in pottying and is

still regressed although he's taking it again in the form of peanut butter

cookies.

>

> So off of NV he's duller and harder to understand, but either he doesn't care

that much or he doesn't notice. Either way he's not lashing out in frustration

or really behaving any worse than normal. And each time he goes off, he doesn't

regress to where we was...just back a few steps and he gains them back within a

few weeks of being on NV again.

>

> Liralen

>

[Guest guest]

The surge with fish oil was SO dramatic. He basically went from a child who

babbled constantly but no one understood him and who would refuse to mimic

words, to one that would mimic every word we threw at him. He essentially went

from mostly non-verbal to one who could communicate. He started mimicking words

after 3 days on fish oils and went through a huge language explosion. He also

mouthed everything, went through weeks of temper tantrums and lived with his

hands stuffed in his mouth. It was so dramatic no one (but those not here

day-to-day) doubted that it was the fish oil. I have taken him off the fish oil

for about a week and while he didn't revert, he didn't make any gains either.

there are some days he misses the dosage (I'm pretty absent minded). I think,

from what I have read here, that it takes some time for the EFA's to

deplete...longer than the amino acids int NV

With NV his gains were more global and more subtle. Like fine tuning what the

fish oil had started. He tastes it in ANYTHING I give him, ice cream, chocolate

milk, juice, cereal, oatmeal. He has decided that the peanut butter/NV cookies

are good. I make them differently. 1 Scoop NV to 1 tsp honey and 2 tsp peanut

butter. you have to really work creaming the NV into the peanut butter, but it

makes for a drier non-sticky crumbly cookie. I press it into silicone muffin

cups and push a few chocolate chips into the top and freeze them. Before I

figured this out, we would spend an hour syringing or spooning the NV in with

him sobbing. It got to be too stressful for both of us and I would skip days

just because it broke my heart and finally we took a few weeks break. When he

regresses, it's not all the way back. Just some of the way. Like he still jumps

and sings and talks, but sometimes he reverts to nonsense in the middle of a

sentence when not on NV and we have to listen harder cause he talks so fast and

loses sounds. It's like the NV moderates his thoughts? It was really bad in

therapy. He would talk so fast the therapist thought he was speaking nonsense

and would speak very simply with him. He did not like it at all, like he felt

she was talking down to him. and he HATED drilling on words. It was frustrating

cause she was trying hard and he was distracting her and trying to escape and he

didn't have the words to tell me why he didn't like it.

Does that make it more clear?

Liralen

> >

> > My son (3 1/2 years) has been on and off NV since March. He had some

amazing initial gains--potty training, sleeping through the night, singing,

articulations, imaginative play, jummping. Then he just refused his NV drink.

Well, he started waking in the night and regressed in pottying, but did not have

horrible behaviors problems. He also lost some smoothness in his speech. I got

him back on it and those things smoothed out. Then several weeks later, we

traveled and he wasn't getting it and the same things happened. His speech was

harder to understand, he was having accidents and not sleeping well. But again

no more toddler than anytime before. Both times he did not lose singing, but

didn't sing as often and didn't lose imaginative play, but seemed to need more

prompting to make up stories. It was like he was dulled, but not broken--if

that makes sense. The last time he was off NV, he regressed in pottying and is

still regressed although he's taking it again in the form of peanut butter

cookies.

> >

> > So off of NV he's duller and harder to understand, but either he doesn't

care that much or he doesn't notice. Either way he's not lashing out in

frustration or really behaving any worse than normal. And each time he goes

off, he doesn't regress to where we was...just back a few steps and he gains

them back within a few weeks of being on NV again.

> >

> > Liralen