IMPORTANT info for Apraxia Grant : For those who have tried vit E

October 18, 2007

OK...good news in that Autism Speaks has asked for a full proposal

for an omega 3/vit E placebo control study. But I went through this

process last year, and got to the next tier only to have the project

rejected after all the efforts of putting together a full proposal.

Clear from the reviewer comments that they don't know much about

apraxia...but I will try to address the concerns they brought up and

resubmit the project.

When I first submitted my proposal last year, I had gathered

information on the 1st 50 families who tried vit E and sent me info.

At this point I have no idea how many families have tried or are

using vit E for their apraxic kids. It would be good to get a better

estimate...I believe its over 200, but could be very off.

I put out a questionaire before. Lets try again so we have a better

idea of numbers and % responders. This is not the ideal way to

generate data - but its the best we can do at the moment.

For those responding to this - please respond only if you have info.

I appreciate all the good luck sentiments...but will use

this " subject line " to pool all the data, and there will be many

emails to go through. It took me over a week to get through and

organize data just from the first 50 last time around. For those in

the original 50, please submit info again with updates (and identify

yourself as one of the original families trying vit E between Sept-

December 2006 and posting info for me to collect).

Please respond to the below questions:

Name or initials

Age

gender

Email address:

Data collected by me previously on vit E: yes/no

Diagnoses:

Verbal/oral apraxia (expect all will be yes)

Autism spectrum/PDD/Aspergers: yes/no and specify

Sensory integration dysfunction yes/no

High pain tolerance yes/no

Low tone yes/no

Motor apraxia/poor coordination/develop. coordination disorder yes/no

allergies yes/no Specify: (?especially wheat/gluten/dairy)

Gut issues? Y/N Specify: (ie constipation/ diarrhea/ abd pain etc)

Omega 3 dose (amount and # times/day; total dose):

Vit E dose:

alpha tocopherol

gamma tocopherol

Duration of therapy (in months)

Other treatments using: ( ie ST, OT, other supplements)

Pertinent labs/results: ie carnitine checked? Celiac panel, celiac

HLA, any nutritional labs: normal/abnormal ie vit ADEK etc, stool

fecal fat, albumen?

Effects of Vit E:

Pos: yes/no Give details

Negative: yes/no: details

This will give me a better idea of how many kids are benefitting

and/or responding (and how many are not). I just heard from a

pediatrician friend of mine who started treatment in a 13 year old

with global apraxia with improved speech and coordination...which is

very hopeful that older kids might also still benefit. We had a 15

year old in the original 50. Hopefully we will be able to bring some

science to all this...and with a study - ultimately to publish...will

come a new interest in apraxia in general - which would be good news

for our kids.

Thanks in advance for all those who are going to take the time to

respond to this. I'm hoping the omega/vit E combo is helping alot of

kids out there - I know for sure it has changed the lives of more

than a handful of kids...including mine. If I can get a study funded,

I will be able to bring this info to the level of the general

pediatricians, and apraxic kids will get a more thorough work-up in

the future. Once we figure out WHY our kids have apraxia...better

treatments can be designed to target the mechanism. I still feel like

we are treating the symptoms, while the ultimate cause of this

remains unknown. But need the data to prove that omega 3/vit E helps

to the medical community; anecdotal stories...no matter how

miraculous (like ph's story)...only get us so far. -

October 18, 2007

Not sure if you wanted this responded to on here or to your email but

here goes! (for what its worth we have only been on the natural

source alpha/gamma tocophefol for about a month now, but has

been on synthetic alphatocopherol for 3 years).

Ill put my responses in Caps so its easier to see (im not yelling!)

> Name or initials: BRANDON M

> Age 4 YEARS 10 MONTHS

> gender MALE

> Email address: tig_ger51@...

> Data collected by me previously on vit E: yes/no NO

> Diagnoses: MITOCHONDRIAL ENCEPHALOMYOPATHY (COMPLEX 1 DEFICIENCY) -

BASAL GANGLIA INVOLVEMENT RESULTING IN SEVERE GLOBAL APRAXIA (NON

VERBAL, DYSPHAGIA/ASPIRATION, ATAXIC GAIT, OVERALL SEVERE

UNCOORDINATION)

> Verbal/oral apraxia (expect all will be yes): YES

> Autism spectrum/PDD/Aspergers: yes/no and specify NO

> Sensory integration dysfunction yes/no NONE THATS SIGNIFICANT (SOME

SUSPICION OF MILD SENSORY ISSUES BUT NOTHING EXTREME)

> High pain tolerance yes/no YES ABNORMALLY HIGH (DANGEROUSLY HIGH AT

TIMES - HE DOESNT OFTEN REALISE WHEN HES HURT)

> Low tone yes/no YES - BUT RECENTLY ALSO HIGH TONE/SPACTICITY

STARTING - RELATED TO BASAL GANGLIA DEGENERATION

> Motor apraxia/poor coordination/develop. coordination disorder

yes/no YES SEVERE - WHEELCHAIR DEPENDANT FOR ANY DISTANCE

> allergies yes/no Specify: (?especially wheat/gluten/dairy) YES,

SEASONAL, DAIRY INTOLERANCE, SOY INTOLERANCE, SUSPICION AROUND

GLUTEN - + ANTIBODIES (AGA, EMA, TTG), + HLA MARKER, - BIOPSY.

> Gut issues? Y/N Specify: (ie constipation/ diarrhea/ abd pain etc)

YES - CHRONIC DIARRHEA, ABDOMINAL PAIN, SUSPECTED REFLUX

>

> Omega 3 dose (amount and # times/day; total dose): JUST STARTED

1200 MG DAILY

> Vit E dose: 100IU'S A DAY SINCE JAN '05, 200IU'S A DAY SINCE

SEPTEMBER '07

> alpha tocopherol SINCE JAN '05

> gamma tocopherol ADDED SEPTEMBER '07

>

> Duration of therapy (in months) - ALPHA TOCOPHEROL - 34 MONTHS.

GAMMA TOCOPHEROL - 1 MONTH

> Other treatments using: ( ie ST, OT, other supplements) ST,

OT, 'MITO COCKTAIL' (VIT. C, B1, B2, B50 (B complex), COENZYME

Q10), 'THERATOGS' FOR ATAXIC GAIT (SOME BENEFIT).

> Pertinent labs/results: ie carnitine checked? Celiac panel, celiac

> HLA, any nutritional labs: normal/abnormal ie vit ADEK etc, stool

> fecal fat, albumen?

LOW CARNITINE (MITO RELATED), CELIAC ANTIBODIES ALL POSITIVE AT ONE

TIME OR ANOTHER (NEGATIVE AT OTHERS - FLUCTUATES - NEXT CHECK IN

NOVEMBER), CELIAC HLA POSITIVE, BIOPSY NEGATIVE. LOW IRON.

CHRONICALLY ELEVATED LACTIC ACID, AND CK ENZYMES (MITO RELATED).

>

> Effects of Vit E: PRIOR TO STARTING ALPHA/GAMMA NATURAL SOURCE -

NEGLIGIBLE. - THERE WAS SIGNIFICANT IMPROVEMENT ON THE MITO COCKTAIL,

BUT WE DID NOT SEE ANY MAJOR CHANGE WHEN WE ADDED OR ADJUSTED HIS

VITAMIN E DOSE - IN THE 6 WEEK SINCE STARTING THE ALPHA/GAMMA

NATURAL SOURCE TOCOPHEROL - REMARKABLE. FAR MORE PURPOSEFUL

BABBLING, FAR MORE MOUTH ACTIVITY (CHEWING NAILS, BLOWING MILK

BUBBLES, PUCKERING, ETC), DEFINATE IMPROVEMENT IN DYSPHAGIA - ON

REGULAR FOODS ABOUT 90% OF THE TIME NOW (PRIOR TO THIS IT WAS ABOUT

50%). NO REAL NOTICABLE CHANGE IN GAIT/COORDINATION DIFFICULTIES BUT

ITS HARD TO GAUGE AS THEY FLUCTUATE WILDLY DEPENDING ON HIS ENERGY

STATUS.

IT WAS NOT A MIRACLE CURE, BUT DEFINATELY SEEMS TO BE OFFERING SOME

BENEFIT FOR HIM. WE LOOK FORWARD TO SEEING WHAT THE ADDITION OF THE

OMEGA'S MIGHT BRING!

Hope this helps!

Keely

www.caringbridge.org/visit/brandonandtyler

October 18, 2007

Name Leonard

9 years old

Female

rxflwrs@...

data collected previously yes

verbal apraxia yes

Developmentally delayed PDD/FAS yes

Sensory integration dysfunction yes

Formerly high pain tolerance yes

Low tone yes

Motor apraxia yes

Allergies food no antibiotic omnicef yes

Gut issues no

Omega 3/6/9 4 am 4 pm

Omega EPA xtra 1 am 1 pm

Vit E 400 dry alpha 1 am 1 pm

Vit E gamma 300 1 pm

Speech therapy ongoing since coming to US at age 6 with PROMPT therapy she

made gains along with Omegas.. traditional speech therapies USELESS

OT therapy for approx 8 months some small improvement seemed to teach my

child to argue therapist said she understood apraxia but I saw otherwise

Introduced Vit E saw big improvement with sensory issues and she finally

could alert me if bath water was hot and I no longer catch her putting hot

water on mouth and chin area

Still some fears of black furry items or feathers or if an item is in an

unusual place also loud noises can startle her on some days am wondering if

we should up her E levels

Carnitine levels ckd and found to be low she is on 330mg per day

She was on carbatrol for seizures and now has been switched to depakote to

possibly help her with anxiety issues and stress along with controlling

seizures

_____

From:

[mailto: ] On Behalf Of claudia.morris

Sent: Thursday, October 18, 2007 3:22 PM

Subject: [ ] IMPORTANT info for Apraxia Grant : For those

who have tried vit E