Re: NV and Seizure Meds

[Guest guest]

What happened with Mel is that they did lower the meds over the 3 months she was

on it- think 3 times and each time was a bit. So if your child has been on 2

months seizure free and you didn't lower at all yet you are possibly on schedule

for a lower- and from what you are seeing and the blood levels as well as doctor

it's all agreed.

The only problem that happened with Mel is they had thought she had a seizure

which is why the dosage which had been lowered was ordered back up to full

dosage again. Of course all of you guys now know not to do this unless you get

those levels checked because as we now know Mel didn't have seizure activity

-it was pneumonia and who knows if that started with H1N1 because from what I

read that's what is going around in SE Georgia where she is -but either way the

dosage shouldn't have been raised and what was always normal for her prior for

years was now a toxic level.

What is most exciting was after all the extensive neuro tests and being in the

hospital her doctors said that what they are seeing is unexplainable except for

the nutriiveda is healing 's brain somehow and that she'll be off all

meds by later this year. How crazy good is that?!! I just pray she makes it

home soon and have no further updates yet so still send your prayers. What we

now know for a fact is that Mel's actual neuro tests are showing unexplainable

changes -her brain is looking " normal " in comparison to scans 3 years ago and

this is not just observation but hard evidence that nutriiveda is healing in

some way as other than that there have been no other changes or any surges prior

(and again she's now 26 years old)

In my opinion it's probably an ongoing thing that you keep checking. It's also

clear from Mel's case not to just auto raise the dosage or assume there is a

seizure once on Nutriiveda since based on what I'm reading it is appearing to be

helping raise that threshold somehow- and not just raising but again as Mel's

doc says -healing the brain somehow. (glad he said it so I no longer feel like

I shouldn't be using words like " heal " ) When Robin is able to I'm sure she'll

update and probably your doctors can speak to Mel's doctors. But in the

meantime you are doing all the right things. You are working with your child's

doc -checking med levels and your child is seizure free and you were told you

can lower the meds a bit.

Since we are working with a product that is 100 percent certified as a food by

the FDA and we don't know nutritionally how the food is helping naturally we

treat it just as we would any food that is healthy. If this is the longest your

child has been without a seizure to me that is far more important right now then

behaviors since we know from this group that " bad " behavior is par for the

course for fish oils in the early stages too. And who knows what is " normal "

for your child since this is the first time according to what I've read from you

he's been this long without a seizure. You're in a whole new world like many of

us -and one that keeps moving closer and closer to " normal " what ever that may

be. I mean goodness knows that " normal " kids are not all angels!

I don't know if the average person is aware of how profound it is to be able to

get all of the essential amino acids in one food like we are able to get in

nutriiveda. All the essential amino acids are from the protein -100 percent all

natural- and are essential for just about everything in biological function.

Not everyone examines the essential amino acids they consume but most only have

a few of the essential amino acids. Again it's rare to get 'all' of them in one

food as you do in nutriiveda and again we do know today they are linked to neuro

repair in research. In addition the nutrients are all food based and they got

them from the purest forms including the yeast based nutrients (and for those

that don't understand about the yeast based nutrients -the yeast is inactive and

can be used even by one with active candida) Again as always it's best to share

this product with the most knowledgeable doctor of nutrition or medical

professional who is knowledgeable about nutrition -they will be blown away

impressed.

I suspect over time our children will not require a therapeutic dosage and can

take or not take nutriiveda on a maintenance dosage.

To me the younger started the sooner based on even the reports so far. The

question remains however for people into health like me that have used protein

shakes for years, which protein shake am I going to use in another year? To me

no doubt it will still be nutriiveda unless something even better comes along.

Thank you mother nature once again for working in harmony with our bodies in

some way -supplying something essential that was missing that is now helping

with healing in a natural way -then perhaps this is another " magic orange "

http://pursuitofresearch.org/science.html

And one other thing and this is just my thoughts:

I typically in situations like this where parents complain about " bad " behavior-

tell parents to lower the nutriiveda but I honestly don't believe that's a good

idea for based on what is being reported by you and others with the

elimination of seizures over the past 2 months. It's my opinion that if based

on blood testing and his doctor you can lower the meds -that is exactly what I

would choose to lower! I would continue to get those levels checked and perhaps

his behavior is a really good thing because it will give you a head's up when

it's time to check again.

Who knows if it will take a few months, a few years- but what if more and more

children can get off seizure meds like Mel's doc believes she'll be by the end

of this year???

And if you do lower the meds to the amount the doctor said - let us know how his

behavior is! (I suspect it will get better -but just a hunch)

=====

[Guest guest]

Here's a possibility.

-- The center of thinking is subtle interplay of exciting-inhibiting paths.

-- When nerves lose exciting-inhibiting balance one kind self-stimulates.

-- Self-stimulation starts powerful waves. Thought vanishes. Seizure.

-- Electrical imbalance reflects chemical imbalance, e.g. low serotonin.

-- Nutriiveda supplies what slowly restores correct chemical balance.

-- As brain heals, electric connections heal. Ideas form. Mind grows.

-- Anti-seizure medication changes the healing brain and mind unpredictably.

So one possibility is that Nutriiveda is repairing 's chemical

cascades to what's correct. No doctor and no test will be able to say

exactly what's happening.

On Wed, Mar 31, 2010 at 1:50 PM, Alyssa Nagy <aw_nagy@...> wrote:

>

>

> What do you think? I took for blood work yesterday because like I

> stated before his behaviors have been off the charts at school and therapy.

> He is ususally easily re-directed but not latey. When his seizure meds are

> too high we tend to see more OCD and ODD types of behaviors.

> I just heard back from Matt's Neurologist. levels are just

> slightly lower than in November and medication levels are the same. So what

> does this mean? Is NV doing something to the seizure meds? It looks to me

> like my theory is shot? We are going to drop 's Depakote but his

> doctor thinks that the mood stablizer in that medication might be more

> helpful if it was at a higher level. Does any of this make sense?

> Here are the facts.. Seizure have ever been controled for this long before,

> so the NV must be doing something. Is it worth it to drop the meds?

> Please any insight to what NV might be doing to 's body would be

> greatly appericated.

> :-)Alyssa

>

>

[Guest guest]

Hi

We went to see our neuro-psychologist that put my son on Depakote . We started

last Nov. We did a EEG that didn't show any seizures. We did a spect scan and

interpret it as having hot spots which he called kindling seizures. He wants

to get to 1250mg . We went slow and as of last week we only went up to

500mg. I'm not sure if we are seeing much on Depakote maybe a little more

relaxed so I see the mood changes.

However we started Phosphatidylcholine Sp? in IV's and I think this help with

him repeating sentences . We started this in March. So the doctor said to lower

him off Depakote and see if we see any changes. He believes we will see some

changes.I ask him about a 24 hour EEG and he said my son's seizures are deep and

EEG cannot pick them up. The signs I see before we added Depakote is space out

stares and blinking . Some small jerking. I just hate to go up to 1250mg of

Depakote, but then I have this voice in my head, what if you did what would you

see. I also have the same voice saying try NV. I see our DAN doctor to get a

second opinion on May 10th I can not wait. I hope she approves this.

Kathy

>

> What do you think?  I took for blood work yesterday because like I

stated before his behaviors have been off the charts at school and therapy.  He

is ususally easily re-directed but not latey.  When his seizure meds are too

high we tend to see more OCD and ODD types of behaviors. 

> I just heard back from Matt's Neurologist.  levels are just slightly

lower than in November and medication levels are the same.  So what does this

mean?  Is NV doing something to the seizure meds?   It looks to me like my

theory is shot?  We are going to drop 's Depakote but his doctor thinks

that the mood stablizer in that medication might be more helpful if it was at a

higher level.  Does any of this make sense? 

> Here are the facts.. Seizure have ever been controled for this long before, so

the NV must be doing something.  Is it worth it to drop the meds? 

> Please any insight to what NV might be doing to 's body would be

greatly appericated.

> :-)Alyssa

>

>

>

>

>

[Guest guest]

Kathy,

I am not an expert by any means but I can give you my thoughts.  Have you taken

to a Pediatric Neurologist?  And why is he on such a high dosage of

Depakote?  Was he not getting seizure control is that why his dosage keeps

climbing?  It just seems like it is very high.  Have you had blood work done

to check at what range his levels are?

Yes, it is true that is it is hard to pinpoint seizure activity when they are

deep in the brain.  How does this doctor know where they are located and/or

type?  was seeing a Neurologist for a time but he was just happy

increasing meds.  So we switched to a new doctor.    We did have several

EEGs that showed nothing but it wasn't until we had a five day Video EEG done

that we got our information.  It was a long five days but well worth

it.  While he was there he was hooked up to the EEG wires and videoed the

whole time.  The doctor was dropping his meds at a fast rate in hopes to

produce a seizure.  Which Matt did have one seizure while he was there.  This

information has been very helpful to show that is indeed having

seizures.  We also recently had a PET scan done which showed an abnormality in

the same area (rt temporal lobe). 

has been having seizures for just about two years now and any medication

he has tried has not given him control.  I am not a big alternative med person,

I am not against it either.  I have tried many different things over the years

for 's PDD or apraxia, attention etc and nothing has seem to stick for

us.  I do not think anything out of the " norm " should be tried on your own w/o

a doctors help.  So if you want to go that route just find a good doctor. 

That being said none of 's doctors would endorse NV but they are aware

that I am trying it.

I have to say again, that nothing has worked for until we started NV...

Maybe you might want to give it a try?   I am still skeptical but as time

moves on this is the only explanation I have for his seizure control.

 

Good luck,

Alyssa

 

 

________________________________

[Guest guest]

Kathy I just want to jump in and add one other thing to what Alyssa just said

and that is while there is no known overdose for nutriiveda as it's food -I'm

not sure if anyone here read Robin's most recent update

http://littlemermaidmelanie.wordpress.com and how the Depakote dosage she had

been on for years has gone to toxic levels and due to that Mel is now dealing

with myopathies which is quite severe. As you may recall from Robin's last

update Mel was in the hospital and went through a battery of neuro testing and

attempts to trigger seizures as all had thought Mel had a seizure -raised her

meds back up high to where again they had been for years and that's I guess when

they went to toxic levels. But Mel never had a seizure, so she did not need her

levels raised (as perhaps your child doesn't either) -Mel had pneumonia. I'm not

saying your child has pneumonia but the toxic level is a concern.

And there is the beauty of nutriiveda that can't be ignored. Mel's medical

doctor feels due to nutriiveda her " brain is healing " as her brain scans are

different and that she will be " off all meds by later this year " and did you

read this from 2 of the MDs behind nutriiveda?

http://www.facebook.com/topic.php?uid=115029735601 & topic=14199

I can't remember exactly what you wrote but from when I read it quick it sounds

like you are thinking of Depakote as something to help with speech etc. It's a

drug for seizures and one that if you don't need to be on mega levels of you

probably don't want to be even as an adult. No less a child.

Here are some of the side effects I found:

In these studies, some of the most common Depakote side effects included:

•Shakiness (tremors) -- in up to 57 percent of people

•Nausea -- up to 48 percent

•Headaches -- up to 31 percent

•Drowsiness -- up to 30 percent

•Vomiting -- up to 27 percent

•Weakness -- up to 27 percent

•Dizziness -- up to 25 percent.

Some other common side effects, occurring in 5 percent to 24 percent of people,

included:

•Hair loss (see Depakote and Hair Loss)

•Abdominal pain (or stomach pain)

•Diarrhea or constipation

•Flu symptoms, such as a fever or chills

•Infections

•Double vision

•Insomnia (see Depakote and Insomnia)

•Indigestion or heartburn

•Blurred vision

•Nervousness

•Weight gain (see Depakote and Weight Gain)

•Back pain

•Coordination problems

•Uncontrollable eye movements

•Swelling or water retention in the arms, legs, or feet

•Memory loss (amnesia)

•Ringing in the ears (tinnitus)

•Increased appetite or loss of appetite

•A fever

•Emotional problems

•Weight loss.

http://bipolar-disorder.emedtv.com/depakote/depakote-side-effects.html

And that doesn't include overdosage- toxic levels which is what happened to poor

Mel. There are no known overdosages for nutriiveda because again it's a food.

Here's the page direct to Mel's latest update

http://littlemermaidmelanie.wordpress.com/2010/04/08/nutriiveda-to-the-rescue-on\

ce-again-please/

Again nutriiveda is 100 percent food. One could be allergic to a food but you

can be allergic to anything. That's different than a drug side effect which

affects organs -like liver, kidneys etc. I'm bringing that up because I just

met tonight with a TV nutritionist who wants to write some things up for our

pursuit page- another theory as to why this is " working " !!

=====

[Guest guest]

I read Robin's Blog about Mel's myopathies. That is what sticks in my mind so

much . Our doctor wanted us to get to 1250mg of Depakote and we were at 500mg

and really not seeing to much. My son's seizures must be mild because if it

happens its so quick and its mostly space out and blink or most some jerking

moments while asleep. We are weaning him off and he is doing fine so far. This

is ok by the doctor that prescribe it to him. I am going to talk to his DAN

doctor and see if she recommends someone else I feel like I need a second

opinion. I really feel comfortable with the NV . Its the Depakote and what Mel

went through that scares me. I feel so bad for the family and for Mel. Its so

hard to take leaps and bounds progress and then something sets you so back. I

pray that she has a speedy recovery . I feel for what Mel is feeling , I am sure

she is aware of all this set backs and I can't imagine the frustration . I hope

she keeps her spirits up and keep telling herself she can do it. She is a

beautiful women and I know she can do it.

My son is 9 yrs old and I have had so many people write him off and he will not

mount to anything, Well he is getting better slowly but we are going forward. I

am looking forward for NV to keep us goign that direction. My child went from

nonverbal to being verbal repeating what we say . Its like having a toddler

again repeating what you say. I believe he is practicing and his speech sounds

are not bad for someone who is behind . We are working for more spontaneous

language and imagination play and social interaction with peers. I believe we

will get there . Today we are on 2 capsule of Depakote working down . Soon to

start NV.

Kathy

>

> Kathy I just want to jump in and add one other thing to what Alyssa just said

and that is while there is no known overdose for nutriiveda as it's food -I'm

not sure if anyone here read Robin's most recent update

http://littlemermaidmelanie.wordpress.com and how the Depakote dosage she had

been on for years has gone to toxic levels and due to that Mel is now dealing

with myopathies which is quite severe. As you may recall from Robin's last

update Mel was in the hospital and went through a battery of neuro testing and

attempts to trigger seizures as all had thought Mel had a seizure -raised her

meds back up high to where again they had been for years and that's I guess when

they went to toxic levels. But Mel never had a seizure, so she did not need her

levels raised (as perhaps your child doesn't either) -Mel had pneumonia. I'm not

saying your child has pneumonia but the toxic level is a concern.

>

> And there is the beauty of nutriiveda that can't be ignored. Mel's medical

doctor feels due to nutriiveda her " brain is healing " as her brain scans are

different and that she will be " off all meds by later this year " and did you

read this from 2 of the MDs behind nutriiveda?

> http://www.facebook.com/topic.php?uid=115029735601 & topic=14199

>

> I can't remember exactly what you wrote but from when I read it quick it

sounds like you are thinking of Depakote as something to help with speech etc.

It's a drug for seizures and one that if you don't need to be on mega levels of

you probably don't want to be even as an adult. No less a child.

>

> Here are some of the side effects I found:

>

> In these studies, some of the most common Depakote side effects included:

>

> •Shakiness (tremors) -- in up to 57 percent of people

> •Nausea -- up to 48 percent

> •Headaches -- up to 31 percent

> •Drowsiness -- up to 30 percent

> •Vomiting -- up to 27 percent

> •Weakness -- up to 27 percent

> •Dizziness -- up to 25 percent.

>

> Some other common side effects, occurring in 5 percent to 24 percent of

people, included:

>

> •Hair loss (see Depakote and Hair Loss)

> •Abdominal pain (or stomach pain)

> •Diarrhea or constipation

> •Flu symptoms, such as a fever or chills

> •Infections

> •Double vision

> •Insomnia (see Depakote and Insomnia)

> •Indigestion or heartburn

> •Blurred vision

> •Nervousness

> •Weight gain (see Depakote and Weight Gain)

> •Back pain

> •Coordination problems

> •Uncontrollable eye movements

> •Swelling or water retention in the arms, legs, or feet

> •Memory loss (amnesia)

> •Ringing in the ears (tinnitus)

> •Increased appetite or loss of appetite

> •A fever

> •Emotional problems

> •Weight loss.

> http://bipolar-disorder.emedtv.com/depakote/depakote-side-effects.html

>

> And that doesn't include overdosage- toxic levels which is what happened to

poor Mel. There are no known overdosages for nutriiveda because again it's a

food.

>

> Here's the page direct to Mel's latest update

>

http://littlemermaidmelanie.wordpress.com/2010/04/08/nutriiveda-to-the-rescue-on\

ce-again-please/

>

> Again nutriiveda is 100 percent food. One could be allergic to a food but you

can be allergic to anything. That's different than a drug side effect which

affects organs -like liver, kidneys etc. I'm bringing that up because I just

met tonight with a TV nutritionist who wants to write some things up for our

pursuit page- another theory as to why this is " working " !!

>

> =====

>

[Guest guest]

Kathy I am glad to hear you are working your way down on depakote. It sounds

like your son is having absent seizures. I highly recomend going to a Ped.

Neurologist to figure this out. Different seizure meds work for different types

if seizures. A DAN doc I am sure will help you with many valuable things but

seizures is not one of them.

Good luck

Alyssa

On Apr 10, 2010, at 9:02 AM, " Dean " <dvsdean@...> wrote:

I read Robin's Blog about Mel's myopathies. That is what sticks in my mind so

much . Our doctor wanted us to get to 1250mg of Depakote and we were at 500mg

and really not seeing to much. My son's seizures must be mild because if it

happens its so quick and its mostly space out and blink or most some jerking

moments while asleep. We are weaning him off and he is doing fine so far. This

is ok by the doctor that prescribe it to him. I am going to talk to his DAN

doctor and see if she recommends someone else I feel like I need a second

opinion. I really feel comfortable with the NV . Its the Depakote and what Mel

went through that scares me. I feel so bad for the family and for Mel. Its so

hard to take leaps and bounds progress and then something sets you so back. I

pray that she has a speedy recovery . I feel for what Mel is feeling , I am sure

she is aware of all this set backs and I can't imagine the frustration . I hope

she keeps her spirits up and keep

telling herself she can do it. She is a beautiful women and I know she can do

it.

My son is 9 yrs old and I have had so many people write him off and he will not

mount to anything, Well he is getting better slowly but we are going forward. I

am looking forward for NV to keep us goign that direction. My child went from

nonverbal to being verbal repeating what we say . Its like having a toddler

again repeating what you say. I believe he is practicing and his speech sounds

are not bad for someone who is behind . We are working for more spontaneous

language and imagination play and social interaction with peers. I believe we

will get there . Today we are on 2 capsule of Depakote working down . Soon to

start NV.

Kathy

>

> Kathy I just want to jump in and add one other thing to what Alyssa just said

and that is while there is no known overdose for nutriiveda as it's food -I'm

not sure if anyone here read Robin's most recent update

http://littlemermaidmelanie.wordpress.com and how the Depakote dosage she had

been on for years has gone to toxic levels and due to that Mel is now dealing

with myopathies which is quite severe. As you may recall from Robin's last

update Mel was in the hospital and went through a battery of neuro testing and

attempts to trigger seizures as all had thought Mel had a seizure -raised her

meds back up high to where again they had been for years and that's I guess when

they went to toxic levels. But Mel never had a seizure, so she did not need her

levels raised (as perhaps your child doesn't either) -Mel had pneumonia. I'm not

saying your child has pneumonia but the toxic level is a concern.

>

> And there is the beauty of nutriiveda that can't be ignored. Mel's medical

doctor feels due to nutriiveda her " brain is healing " as her brain scans are

different and that she will be " off all meds by later this year " and did you

read this from 2 of the MDs behind nutriiveda?

> http://www.facebook.com/topic.php?uid=115029735601 & topic=14199

>

> I can't remember exactly what you wrote but from when I read it quick it

sounds like you are thinking of Depakote as something to help with speech etc.

It's a drug for seizures and one that if you don't need to be on mega levels of

you probably don't want to be even as an adult. No less a child.

>

> Here are some of the side effects I found:

>

> In these studies, some of the most common Depakote side effects included:

>

> •Shakiness (tremors) -- in up to 57 percent of people

> •Nausea -- up to 48 percent

> •Headaches -- up to 31 percent

> •Drowsiness -- up to 30 percent

> •Vomiting -- up to 27 percent

> •Weakness -- up to 27 percent

> •Dizziness -- up to 25 percent.

>

> Some other common side effects, occurring in 5 percent to 24 percent of

people, included:

>

> •Hair loss (see Depakote and Hair Loss)

> •Abdominal pain (or stomach pain)

> •Diarrhea or constipation

> •Flu symptoms, such as a fever or chills

> •Infections

> •Double vision

> •Insomnia (see Depakote and Insomnia)

> •Indigestion or heartburn

> •Blurred vision

> •Nervousness

> •Weight gain (see Depakote and Weight Gain)

> •Back pain

> •Coordination problems

> •Uncontrollable eye movements

> •Swelling or water retention in the arms, legs, or feet

> •Memory loss (amnesia)

> •Ringing in the ears (tinnitus)

> •Increased appetite or loss of appetite

> •A fever

> •Emotional problems

> •Weight loss.

> http://bipolar-disorder.emedtv.com/depakote/depakote-side-effects.html

>

> And that doesn't include overdosage- toxic levels which is what happened to

poor Mel. There are no known overdosages for nutriiveda because again it's a

food.

>

> Here's the page direct to Mel's latest update

>

http://littlemermaidmelanie.wordpress.com/2010/04/08/nutriiveda-to-the-rescue-on\

ce-again-please/

>

> Again nutriiveda is 100 percent food. One could be allergic to a food but you

can be allergic to anything. That's different than a drug side effect which

affects organs -like liver, kidneys etc. I'm bringing that up because I just met

tonight with a TV nutritionist who wants to write some things up for our pursuit

page- another theory as to why this is " working " !!

>

> =====

>