Re: needing some research based information

[Guest guest]

- do you mean sharing where you are located? I need a private

SLT and I have been shopping around lately here in NJ. We have to pay

ourselves because insurance does not cover any speech therapy and I am

completely shocked over the prices such as $60-$125a half hour! I

interviewed a really nice home based therapist that I probably will

hire for our son who charges $135 an hour and is trained in PROMPT and

Moving Across. I need help and advice. April

[Guest guest]

Hi ,

Thank you for your interest in this type of research.  Unfortunately the causes

of apraxia and other neurological conditions are complex and not easy to

identify and fully understand yet. But there is enough research to know that a

variety of metabolic disorders may if not directly cause it, are at least 

somehow implicated in both the causes and treatment for many neurological

disorders and this research is in its infancy but growing everyday.

http://speech-language-pathology-audiology.advanceweb.com/Editorial/Search/AView\

er.aspx?AN=SP_07jun25_spp10.html & AD=06-25-2007

It is very easy to dismiss a lot of the so called " anecdotal " evidence because

there aren't enough clinical trials out there, but the reality is that no two

apraxic or even autistic children manifest exactly alike

and the treatment protocols are tweaked according

to each child's needs.  It's a general pattern that is then adapted to meet

individual needs and it can also vary in terms of supplements used, dosage,

treatment priorities, environmental exposures , it is very complex and I fear

this will delay the acceptance process, but it is the future of health care as

no two individuals are exactly alike. Research methodology will just have to

adapt to take all these factors into consideration and at the same time produce

a credible body of research that will validate certain protocols.  The funding

aspect is another HUGE problem and the fact that biomedicine consits of a

variety of individualized interventions and not just one or two " miracle drugs "

or therapies makes the funding perspective very glum indeed.

Also if you were or are the parent of a special needs child and you read about

alternative therapies like fish oil, carnaitine, vitamin E--which can be

administered without causing harm, particularly when under the care of a good

biomed who has treated many other children with your child's condition

successfully,...well, how many more years are you willing to wait around for

clinical studies to prove efficacy of such treatments--and who exactly are those

studies going to be carried out on so that your child can benefit at some point

in the future?  The truth is there is always experimentation being done, that's

what clinical studies are, only the methodology of such studies very often

focuses on one intervention only and pretends diet/nutrition and all the rest do

not exist. They have to do that but whether the participants are really all

following the same diet, taking the same supplements and doping things exactly

as the protocol dictates it is all

faith based. 

I have a research background and can tell you that research can indeed be useful

and validate many things, but knowing what I know about how so many things are

assumed or skilfully not mentioned or deleted to maintain the " sameness " of the

participants, and all the politics and funding incentives that drive and bias

all research, I would not wait around for my special needs child to benefit only

from proven clinical interventions when she needs help NOW and there is so much

out there that has been proven to a satisfactory degree effective for many

children with her symptoms. Even if no one has bothered or put up the $ to do

the multi million clinical studies for every vitamin, or supplement that cannot

possibly bring in a cost effective return on such research investments, that

does not mean those approaches are not worth considering.  So I'm not waiting

for major research validation here, I'm carefully reading a variety of sources,

filling in the gaps,

listening to other parents who are usually better informed than many doctors

and even researchers and using common sense to make the best treatment decisions

I can given the information I now have available.

 And you know what, I another " anecdotal evidence " on my hands!!!---  since

appropriate diet and supplements have been implemented, my severely apraxic,

gluten/casein + others intolerant daughter went from less than 25 words back in

January of 2008 to over 250 words now most of which are understood by others in

multiple contexts, she is more focused, her behavior has improved dramatically,

she can communicate, negotiate terms and doesn't have to throw a tantrum to let

me know she is not happy or wants something... I have a totally different child

in less than 6 months and the most results were observed after the B12 shots

when she first started mouthing things like she never had during the oral phase

and shortly after began saying more and more.  She had been doing PROMPT

therapy since last June but it wasn't sticking, her behavior was not allowing

her to pay attention, to really focus and build a language.  This has all

changed and the PROMPT has

helped a LOT, but it would have been much less successful without the

appropriate focus and change in her ability to really absorb it and fully engage

and retain and apply and build on what she was dong in therapy.

The reality is that neuroscience has now validated a lot of what biomed

/alternative health care practitioners have been saying for decades. New

laboratory tests are also available to test

for various metabolic disturbances and to monitor improvement which was clearly

observed but could never be quantified before.

Here are some of the links I dug up quickly. Some are journal articles, others

are written for special groups by reputable doctors and researchers in the

field., others yet are pure neuroscience. They all have their merit and after

you read enough of them you realize that there is a lot they have in common and

a lot your doctor should be reading but isn't.  For some you need to scroll as

advertisements take up the better half of the page.  Many but not all focus on

autism because that is the most predominant and most unexplained by mainstream

medical practices. 

But the more you read the more you understand that it is a neurological

disorders continuum that affects the most vulnerable, the young and the old. 

Yes, Autism, apraxia and Alzheimer's and Parkinson have a lot in common than one

might think, and the communality goes beyond the fact that they are all

neurological in nature, you read and you begin to notice that toxicity and

metabolic factors are other commonalities and various alternative treatments,

vitamins, minerals supplements and detoxifying agents work wonders for many of

these diseases.  There are many more links articles etc. and quite recently

there was an excellent article on biomedical interventions and neurological

disorders, posted on the list, but I'm losing track, there are so many

...

http://mindd.org/serendipity/archives.php/48-Biomedical-Treatments.html

http://www.scipub.org/fulltext/ajbb/ajbb42208-217.pdf

http://www.apraxia-kids.org/atf/cf/%7B145BA46F-29A0-4D12-8214-8327DCBAF0A4%7D/ri\

chardson.pdf

http://www.childrensdisabilities.info/allergies/developmentaldisordersprotein7.h\

tml

http://www.nids.net/pdf/myth.pdf

http://phillipholmes.com/autism_info/NATAF2006.pdf

http://www.jci.org/articles/view/17741

http://www.drneubrander.com/Files/Oxidative%20Stress.pdf

http://www.ei-resource.org/articles/autism-articles/mercury-on-the-mind/

http://www.kellydorfman.com/pages/459018/index.htm

http://www.istockanalyst.com/article/viewiStockNews+articleid_2499545.html

http://overcomingcandida.com/autism_biochemical_observations.htm

http://www.alasbimnjournal.cl/revistas/4/goldbergi.htm

http://www.autism.com/medical/research/deth.htm

http://www.emedicine.com/ped/topic321.htm

http://www.freeradicalscience.com/showabstract.php?pmid=10885665

http://www.autism.com/medical/research/jilljames.htm

http://www3.interscience.wiley.com/journal/99018211/abstract?CRETRY=1 & SRETRY=0

http://www.wellnessresources.com/studies/entry/glial_nerve_cell_inflammation_in_\

autism

http://www.wellnessresources.com/studies/entry/inflammatory_changes_in_nerves_ca\

use_autism

http://www.msgtruth.org/autism.htm

http://articles.mercola.com/sites/articles/archive/2001/12/01/immunizations2.asp\

x

http://ghr.nlm.nih.gov/condition=ataxiawithvitaminedeficiency

http://adventuresinautism.blogspot.com/2008/04/wapo-reports-on-mitochondrial-dis\

orders.html

http://www.mitochondrial.net/showabstract.php?pmid=12140745

http://www.gentle-interventions.org/what_are_mitochondrial_diseases.htm

http://neuromuscular.wustl.edu/mitosyn.html#othermito

http://ezinearticles.com/?Negative-Food-Allergy-Testing-Is-Not-The-Same-As-Food-\

Intolerance-And-Food-Sensitivity-Testing & id=757847

http://www.enabling.org/ia/celiac/doc/news0302%20latov%20article.pdf

http://jnnp.bmj.com/cgi/content/extract/72/5/560

http://ezinearticles.com/?Gluten-Free-Diet-Should-Be-Considered-For-Everyone-Wit\

h-Neurological-And-Psychiatric-Symptoms & id=450571 & opt=print

http://dogtorj.tripod.com/id99.html

http://www.uams.edu/celiac/review/GSE1.htm

http://ezinearticles.com/?Brain-And-Neurological-Problems-Affect-Almost-Half-Of-\

Celiacs-Even-With-A-Gluten-Free-Diet & id=904155

http://www3.interscience.wiley.com/journal/119012987/abstract

http://home.cogeco.ca/~allan/mercury.html

There are a few very good articles that offer an overview on how food

intolerances, and viral, bacterial and parasitic infections can contribute to

neurodegeneration and immune system disorders.  80% of our immune system resides

in the gut and that is after all the gateway to the temple.  If something is

amiss, we are more vulnerable to everything in our environment including food

water and air.  I really wish this was all made up and drugs and good old

fashioned therapies was all that was needed to improve our health, but

unfortunately it just isn't so and biomedicine holds the key to our future

health, it's just not going to be easy given the politics and high $ stakes. 

may we all have the open mind to see beyond the boxes we've been molded in and

do the best we can for our children. Anyway hope this helps you to understnand

" research " in a different way and why some of the things we're constantly

drumming about on this list are not that easy to

prove clinically given the individual differences in both genetics and

environmental exposures that we're dealing with. Also ask for Dr. 's

research on Omega 3 and vitamin E --she's a pediatric doctor and mom to a gluten

intolerant apraxic child. Yep, that's what it takes to get the mainstream

medical community on board with alternative treatments--personal experience --

having a child with special needs. All of a sudden common sense kicks in and

it's amazing what you can discover then when you already have the training!

-Elena--mom to Ziana, age 4 severely apraxic but otherwise a happy healthy child

and doing great gaining new words every day now that appropriate PROMPT speech

therapy, diet and supplements have all been implemented. We-re tweaking it all

as needed....

From: lady_lou2003

<ltaylor@...>

Subject: [ ] needing some research based information

Date: Tuesday, August 26, 2008, 8:41 PM

I believe we all (speech pathologist, drs, etc) need to continue to

gain information to be of any actual value. I have been a speech

pathologist for over 20 years, and still feel I need to get more and

more information. My problem, is I feel impelled to have research

based information. While I see many experiences here, I would really

appreciate some actual research studies that back up what you are

seeing. I have no doubt that there are gains to be made in looking at

a variety of interventions, based on a variety of causes, but we are

still in the dark as far as root causes of apraxia and other disorders.

I would be

thrilled to have any information you might have to connect

me to such studies. As many of you have

surely found, there are

plenty of misguided people, who will say that something is working,

when it may have only limited (if any) true results.

Thanks in advance-

------------------------------------

[Guest guest]

Most of the research on this is in the UK. Look at Ataxia studies

since for some reason in the UK, when someone has ataxia it warrants

intervention but when someone has dyspraxia it is a lifestyle

choice???

There are metabolic neuros who do deal with the very things that we

talk about here for multiple neuro disorders. Things like diet, fish

oil, carnitine and the other things mentioned here are not new but

are doled out piecemeal even in the mainstream because as Elena said,

the funding is not there and the treatment is tailored. We do go to a

Metabolic Neuro in Philadelphia because I do like to start in the

mainstream when I can.

Mitochondrial disorder and dysfunction is no easy thing to diagnose

or treat so some of this is up for grabs. Dr. is the vitamin E

pioneer.

In the biomed world I am told of studies by Dr. Stoller and others on

things like HBOT. Chelation for lead poisoning is not new but that is

for folks who come up lead toxic in blood and so far that has not

been correlated to apraxia in that manner.

I can't recall exactly where but I know in the links section Dr.

's abstract is posted.