Re: Fwd: [cherab_archive] Re: Re: Seizures and NV - Ref#41213320

[Guest guest]

New to NIDs. What is is NV?

________________________________

From: LH <lrkhmomx3@...>

Sent: Sun, October 10, 2010 3:41:42 PM

Subject: Fwd: [cherab_archive] Re: [ ] Re: Seizures and

NV - Ref#41213320

 

The only part is the whey. We recently started the protocol and were told

no dairy. Otherwise, I have heard good things about NV.

>

> Hi all! Am looking to put together informal " case studies " showing how NV

> has

> become a viable part of helping those with seizures. We know it's helping

> many

> other conditions as well but unlike others -this is something concrete that

> nobody can say is wishful thinking. I know there are many lurkers in the

> group

> -please know that just like the following we will not use any names or any

> way

> for anyone to know who you are. The following 3 parents did agree to speak

> with

> professionals however- and you may or may not wish to speak with other

> parents.

> I'm sure some of you will recognize 2 of the 3 parents in the case studies

> below. If you have a story you'd like to share in this as well which is

> being

> passed on to the doctors please email me at lisa@ (lisa at cherab.org)

>

> And...if you have not yet done so...PLEASE take the survey

> http://pursuitofresearch.org/survey.html

>

> 10 YEAR OLD MALE WITH APRAXIA, AUTISM AND SEIZURE DISORDERS. LAST SEIZURE

> WAS

> DURING FIRST WEEK ON NV AND CHILD REMAINS SEIZURE FREE TO THIS DAY GOING ON

> 10

> MONTHS AS OF OCTOBER 2010, 3 MONTHS NOW OFF MEDICATION. PRIOR TO NV HE ON 2

> MEDICATIONS AND SCHEDULED FOR A PARTIAL LOBOTOMY AT KENNEDY KRIEGER …CHILD

> NEVER

> NEEDED NOR HAD THE SURGERY ONCE ON NV. IN ADDITION TO ELIMINATION OF

> SEIZURES

> AND INCREASES TO SPEECH AND LANGUAGE, AND NO MORE OF SON COMPLAINING HIS

> HEAD

> HURTS.

>

> Note from parent about 4 months into putting her son on NV; " I was told

> about

> it back in January and of course I was thinking it was like a million other

> products out there that parents with special needs children try. However,

> being

> skeptical I did order it and started my son (9yrs) on it once a day (2

> scoops).

> Shortly after he started it I noticed very slight differences. He seemed to

> have a healthy look or glow to him; his temper seemed to have leveled off

> instead of extreme highs and lows. My son seemed to be grasping or

> understanding language a bit more too. The most drastic of all the changes

> is

> that as of today my son remains seizure free!! My son has been having

> uncontrolled seizures for three years now despite whatever medications we

> have

> tried. He has gone through many types of testing procedures and we were on

> the

> road to have a surgery consult to remove the portion of his right temporal

> lobe

> where his seizures were occurring. Today my son is drinking NV twice a day

> (4

> scoops) and is seizure free going on 15 weeks! We have dropped his seizure

> medications twice now and still remain seizure free. I remain optimistic

> that

> when we hit the six months marker my son's neurologist will help us to

> slowly

> remove all seizure medications. I am in awe of NV and what it has done for

> our

> family. "

>

> Note from parent right after 6 months seizure free from NV " I am very

> skeptical about most things. I do think out of the box but for us we do not

> do

> any special diets or minerals. With that being said there is not one thing

> in NV

> that would be harmful so I put (my then 9 year old son) on it back on Jan.

> 2010.

> My son is very verbal but struggles with speech/Lang and a whole other host

> of

> issues. My biggest concern back in Jan. was my 9 year old's uncontrolled

> seizures, which were ever two weeks at best. As of last week has hit

> SIX

> months seizure free!!!! And I type that with tears in my eyes. So if you ask

> me

> is it worth trying NV I would have to say hell ya!!!!

>

> 6 AND A HALF YEAR OLD WITH SEVERE AUTISM, MENTAL RETARDATION, AND SEIZURES.

> CHILD WAS PREVIOUS ON A MEDICATION FOR SEIZURES AND ANOTHER FOR SLEEP. DUE

> TO

> NV BOTH MEDICATION HAVE BEEN ELIMINATED. PROFESSIONALS THAT WORK WITH THE

> CHILD

> HAVE NOTED CHANGES. IN ADDITION TO ELIMINATION OF MEDICATIONS, IMPROVEMENTS

> IN

> MOTOR PLANNING, MUSCLE TONE, AND MOOD ARE NOTED.

>

> Parent notes " The biggest thing for us was that we stopped giving Logan the

> Topomax we'd been giving him for seizures and the Clonadine (sp?) we'd give

> him

> to aid his sleep. NV has completely controlled his seizures and his sleep is

> better than it's ever been. Once we took him off the other meds his eyes

> began

> to twinkle again. We had just not noticed how much the meds had " dulled "

> him. He

> has returned to doing things like playing with certain toys, babbling and

> playing catch that he used to do before the meds but had given up. He

> exhibited

> much more ability to entertain himself and was more patient when he needed

> something. "

>

> 14 YEARS OLD WITH AUTISM, APRAXIA WITH SEIZURES. TEEN WAS ON SEIZURE

> MEDICATION FOR 9 YEARS TO TRY TO PREVENT HIS GRAND MAL SEIZURES. PRIOR TO NV

> HE

> HAD NEVER HAD A NORMAL EEG. SINCE NV TEEN HAS BEEN SEIZURE FREE GOING ON 8

> MONTHS AND OFF ALL SEIZURE MEDICATION. IN ADDITION, FOR THE FIRST TIME IN

> HIS

> LIFE, SINCE NV TEEN NOW HAS A NORMAL EEG. NUMEROUS OTHER IMPROVEMENTS ARE

> NOTED

> (SEE NOTE FROM PARENT BELOW WHICH WAS FROM RIGHT BEFORE MEDICATION WAS

> STOPPED)

> IMPORTANT TO NOTE: 14 YEAR OLD'S 10 YEAR OLD SISTER ALSO DIAGNOSED WITH

> AUTISM,

> APRAXIA AND SEIZURES HAS SIMILAR AND OTHER IMPROVEMENTS ON NV (SEE BELOW).

>

> Note from parent " Hi Everyone, My children have had an incredible week!

> First

> off, (my 14 year old son) will be off his seizure medication Tegretol in 3

> weeks! He has been on this med. for 9 years.

> I am thrilled for him to be off of medication since I am not a BIG fan of

> any

> meds. and their host of side effects.

>

> This week he went on a school field trip to ____ Marine _____. He was with

> his

> teacher and speech therapist most of time. They were ecstatic that he was

> talking the whole day, saying " what's that " and pointing, " come over here "

> " where

> we going " . He even responded to something that was said over the loud

> speaker!!

>

> I spoke to the neurologist about NV when both of my children were on it for

> 3

> wks already, and he told me to keep giving it to them, because he saw a

> change

> in them from the previous apt

>

> I also noticed that my 14 year old son does multitask more. For example, he

> used to drink something and sit or stand in one place, but now he walks

> around

> with drinks or finger foods, also holding something in one hand and throwing

> something out with the other. He used to put down the one thing first and

> then

> do the 2nd thing. I think this is another positive result. Also my 10 year

> old

> daughter can now hold her cereal bowl up in the air and eat her cereal while

> watching TV! ( well the TV part is not that great but they have to have some

> vices too!)

>

> Also they had their Special Olympic horseback riding lesson yesterday and

> it

> was the first day that the instructor was teaching them left and right

> turns.

> Well, (my 10 year old daughter) was pulling on the correct reins when the

> instructor called out and I didn't even know that she knew her left from her

> right!! (my 14 year old son) did this as well!

>

> They have been on NV since February and it's not that I see something new

> every day but it's consistent and they are definitely changing. We are even

> seeing improvements in the toileting area which is HUGE (you saw how old

> they

> are) in cooperation and success.

>

> My daughter had a terrible sleep issue last year and it lasted about 8

> months,

> she was waking up to 5 times a night, we were sleeping in there, it was a

> nightmare, finally her neuro. dr. put her on Clonidine, which is a blood

> pressure med. that they use on kids because 1. they don't like to use

> sedatives

> on kids and 2. the main side effect is sleep. So we did that and behavioral.

> Well, we got her to the point of only waking up 1 time a night and this

> lasted

> for a couple of months, so I told the Dr. that I wanted her off the

> Clonidine,

> and I was just going to accept the fact that she (and I) would be waking up

> every night. Well guess what, back in February when she started NV, she

> slept

> through the night after being on it 1 DAY!!! My husband and I were in shock,

> she

> is still sleeping through the night. "

>

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

>

> Again if you have an update you'd like to share in confidence you can do so

> by

> emailing me lisa@ or by filling in the survey here

> http://pursuitofresearch.org/survey.html

>

> =====

>