Re: N. CA Apraxia Support Group Mtg.--Dr. Guest Speaker--Sept. 6th

[Guest guest]

Wish I could be there.

's risk in presenting her findings to this group is the key to

why my son started talking and we dug deeper to find his stomach

issues, malabsorbtion issues and finally mito disfunction. Go

! When I hit the lottery this year - she is top on my list for

beneficiaries. Hee hee. (, you are on that list too - it was the

EFAs that enabled my son to start signing and made me willing to try

the Vitamin E...I'll let you know when I get my first check...)

>

> Nutritional Supplementation and Apraxia

>

> Fish Oil, Vitamin E, a Gluten-Free Diet…can they help?

>

>

> Exciting news! Dr. of Children's Hospital and

Research

> Center, Oakland, has agreed to address our group about her findings

> in a case study of 186 apraxic children after nutritional

> intervention with fish oil and Vitamin E. She published her

findings

> at The American Academy of Pediatrics Research Society in May 2007

> and 2008.(Abstracts, blood work to consider and parking information

> will be sent with RSVP).

>

> Saturday, September 6th, 9:30 - 11:30 a.m.

> San Leandro Library, Karp Room, 300 Estudillo Street, San Leandro,

> California 94577

>

> The results of Dr. 's case studies are compelling! 97% of the

> apraxic children involved showed anecdotal improvements in the

areas

> of speech, imitation, coordination, eye contact, behavior, and/or

> sensory issues!

>

> Although no recommendations can be made until these promising

> observations are validated through controlled clinical trials, Dr.

> has graciously agreed to share her recent discoveries with

our

> group! She is currently seeking grant funding to complete

controlled

> studies of apraxia treatment and underlying causes.

>

> *RSVP required

>

> If you would like to reserve your spot, please contact Cara

Galleher

> at galleherfam@... or 408-741-1103.

>

> A $4 contribution to cover the cost of the meeting space is

requested

> at the door.

>

> Cara Galleher (Mom to Brennan, 11, apraxia)

> Dawn Boston, M.A., CCC-SLP

> co-organizers, N. CA Apraxia Support Group

> and Debra Robeson, parent volunteer and event coordinator

>

[Guest guest]

Risk is the right word. As my boy continues to improve and my family

heals from things found due to posting here the depth of that

type of generousity hits me. EFAs helped with signing? That is very

interesting. My boy was an atypical EFA responder but responder

nonetheless, more in body than speech. I always assumed at this point

daily efas not needed as speech and more is great. BUT his hand is not

so great and has been problematic. The last big hurdle. Thanks !

and !

>

> Wish I could be there.

> 's risk in presenting her findings to this group is the key to

> why my son started talking and we dug deeper to find his stomach

> issues, malabsorbtion issues and finally mito disfunction. Go

> ! When I hit the lottery this year - she is top on my list for

> beneficiaries. Hee hee. (, you are on that list too - it was the

> EFAs that enabled my son to start signing and made me willing to try

> the Vitamin E...I'll let you know when I get my first check...)

>

>

[Guest guest]

Hey Cara and Debra (and ) and all that attended ( were

you there?)

SO.....How did it go?!!!

=====

[Guest guest]

Very informative and thank you all who helped and attended, especially Debra who

lit the spark at our last meeting and worked very hard to piece it all together.

We need more dedicated moms like you!---I only wish more medical professionals

and SLPs would have been present as they would definitely have had something to

learn and reconsider in their professional practice.

Thank you for your summary.  I'm afraid my handwriting still has me

guessing a lot of what I wrote  so yours is a very succinct review that helps us

all.

For me the presentation reinforced many of the known things and provided new

insights, new directions for testing and protocol tweaking, where it set aside

some of my fears with the higher E dosage.  It also made me realize how

political everything is even when it is about helping kids in need. There are

always different and even opposing interests and agendas.

Funding research such as the one Dr. is proposing will take a lot of

creativity and perhaps more of a grassroots effort since mainstream medical

foundations consider it " out there " and are unwilling to acknowledge the

possibility of a new fatty acid malabsorption, gut/brain phenotype which could

open up a can of worms they've been fighting against for a long time (toxic body

burden) and the alternative / biomedical foundations tend to focus exclusively

on autism and don't want any other disorder or anyone else to get the credit for

what they've been saying and in part at least doing for years--well, more or

less-- but the gut/brain connection is the BIG link here, one that mainstream

clinical practice ignores and opposes with vengeance--in spite of reputable

research that now finally validates it.  So it's very tricky to find enough

common ground to support such work in this early phase when so few dare go out

on a limb the way Dr. has..

I was impressed by her presentation though, she was very professional yet very

vibrant and genuine in describing her experiences with her son and her plight in

searching for answers for her child's disorder and treatment. Apparently even

when you are a physician and are presenting your observations and speculations

about what could be wrong with your child based on known facts in the medical

literature, you're still met with skepticism and " rolling eyes " by incredulous

doctors who are most unwilling to believe anything that is not explained that

way in their text books. 

The neuroscience and nutritional research is all there, however  clinical text

books and practices operate decades behind these newer discoveries which very

often aren't even that new, but finally come to confirm clarify and improve on

much of what alternative health care practitioners have been saying and doing

for decades and even longer.

Dr. is very inspiring, creative and persistent so she has managed

to get a few  mainstream specialists on board at least with her son's treatment

and I am sure she will eventually be able to secure the needed funding for her

clinical trials which we all hope will help establish the gut inflammation -->

fatty acid  + other malabsorptions --> brain inflammation --> neurological

disorders of various type--but mostly affecting motor planning (speech and body)

as a distinct phenotype that exists in multiple established disorders with

various causes and as a result manifests slightly differently in each

individual.  This is the part that makes it so difficult to identify and treat

and will continue to present a challenge even after its acceptance is finally

gained.

Way to go Dr. !! Thank you for your hard work and for your

wonderful presentation.

All the best,

Elena--mom to Ziana age 4, apraxic with neurological soft markers but otherwise

a happy healthy child and improving every day now that appropriate PROMPT

therapy, diet, supplements (we're still tweaking these) have been implemented

From: kiddietalk <kiddietalk@...>

Subject: [ ] Re: N. CA Apraxia Support Group Mtg.--Dr.

Guest Speaker--Sept. 6th

Date: Sunday, September 7, 2008, 12:40 PM

Hey Cara and Debra (and ) and all that attended ( were

you there?)

SO.....How did it go?!!!

=====