Seizures and NV

[Guest guest]

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. "

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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

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