Dr and Apraxia/Nutrition

[Guest guest]

kiddietalk wrote:

>

>

> Also the following speaks about DHA -but I believe it was momresearch

> who just posted about Dr. AJ and she is the one that

> taught me about the importance of the other Omega 3 -EPA at the First

> Apraxia Conference back in 2001. http://www.cherab.org/news/scientific.html

> (and many of us found this out ourselves)

Yep that was me :-)

It's nice to hear that she played an important part in the start of the

Apraxia conferences way back when.

I hope that you had a chance to peruse the articles where Dr ,

from the 2001-2002 period, in addition discussing all of the Omegas,

also talked about how MILK is a problem for some of these kids and also

the importance of the rest of elimination diet for problem foods,

nutrition, as well as vitamin/mineral supplementation. From what I've

continue to read she is still active in all of these things for our

kids, including pushing and doing research specific to apraxia. She

seems to be a very well-rounded expert on all these topics.

[Guest guest]

Hi momresearch (can I call you Mom for short? )

We continue to learn so don't throw out the baby with the bath

water. There may be an issue with pasteurized milk, so perhaps as we

continue to learn we should not blanket statements about all MILK (OK so

perhaps it's my imagination but it's just missing the IS EVIL part...

I mean why bold the word MILK) There are amazing benefits to raw milk

and I doubt any of the studies had the children on raw milk as it's

not even always legal ... but ahhh -the problem is the fear and the

risks..so if the risks are so high then why are so many educated

people like me buying raw milk for our families? Perhaps the more

you learn about raw vs pasteurized milk you'll understand there may be

reasons for what we are seeing pro and con. (we still do use organtic milk

as well in our home since I can't always get the raw milk)

Here's Dr. Mercola and some of his videos on raw milk:

http://www.youtube.com/watch?v=uHcyAH0rOPE & feature=related

(and no I don't eat raw

eggs - " I have not gotten to that point yet " as the woman says!)

And from the Foundation for raw milk

http://www.realmilk.com/

And a pro raw milk fan J. Getoff, CCN, CTN, FAAIM, Vice President of

Price-Pottenger Nutrition on ADHD

http://www.youtube.com/watch?v=erYzsDVeeEk & feature=user

and on raw milk " the truth about milk "

http://www.youtube.com/watch?v=Yr5pl6lgjJ8 & NR=1

I wonder what he would say about that study just posted? Nah I guess I don't

-it's too obvious.

=====

[Guest guest]

kiddietalk wrote:

> Hi momresearch (can I call you Mom for short? )

>

> We continue to learn so don't throw out the baby with the bath

> water.

Actually, the point of my email regarding Dr.'s respected work

was NOT intended for you to reopen the milk vs non-milk/pasteurized vs

raw milk discussions...but to point out that there ARE researchers out

there looking at the whole picture of nutrition and how it relates to

neurological impairments (which apraxia/dyspraxia ARE)...and that there

is this well-reknown researcher who includes APRAXIA/DYSPRAXIA in her

area of study....a person to whom you credit helping open your world to

the wonders of omegas. It's a shame that the enlightening stopped

there....Dr obviously has the holistic outlook (and had it

back in 2001) on how to better help our apraxic children with global

nutritional strategies. She also discusses how stand-alone apraxia is

quite rare and how a much higher percentage of apraxia occurs along with

other medical conditions.

Even for the milk debate...as for any topic on this list which are quite

varied...for some people milk is bad, for some people milk is tolerable;

for some people Nordic Naturals ProEFA, Complete Omega 3-6-9, ProEPA

work - for other people these products don't and they have to search

alternative sources of omegas. I think even you would agree about that

statement. Some people have to use flax oil because of fish oil

allergies, some people get better results with Efalex or Eye-Q or

CLO. That doesn't make the alternatives black magic, condemned

options. It only reflects that each person has individual nutritional

needs and individual reactions to individual combinations.

My kids, for example, cannot take a multi-vitamin or multi-mineral

all-in-one formula because we have to often adjust the individual

vitamins and minerals based on their individual needs at the time (under

medical supervision and very close collaboration with me). You have

often advised the masses that it is not the BRAND of high-grade fish

oils but the percentage of the omegas that appear to make the difference

and that people can even " construct " their own omega using separate

omega oils, if needed.

Based on anectdotal accounts on this forum, we know that some people

have to start at minute doses of fish oil while others can jump right in

at a full capsule - everyone reacts differently. We know there is not a

standard dose by age/weight, there is no minimum or maximum dose

scientifically documented. Can we guarantee to any parent of an

apraxic child that fish oils will be the " magic pill " to help their

child speak? Honestly, no we can't and it isn't a magic fix. Can we

presuppose that it COULD improve coordination and muscle control?

Yes, but it doesn't always.

For what in recent years on this forum have been the " mainstream "

nutritional supports talked about (the omega supplementation, the

carnitine and carnosine supplementation, the vitamin E supplementation)

which we are seeing help some individuals improve their apraxic

condition, do all apraxic kids need all of these supplements to get

better? No. Is there a magic dose or combo of these supplements that

is a one-size-fits-all? No. How does one decide which ones to use?

Try and see if the child reacts positively or negatively - i.e. TRIAL

AND ERROR

Are these trial and errors with the fish oil combos, the carnitine, the

carnosine, the vitamin E criticized on this list? Not really. Are

they judged to be irresponsible experimenting with one's child with

products that are not guaranteed or scientifically proven to be

treatments for apraxia/dyspraxia? I haven't seen that to be the case

within the confines of this discussion group, and I am guessing that is

because we are parents who ARE experimenting with our children and many

(not all) are seeing improvements, therefore we believe that what we are

trial and erroring is valid and okay. My hunch is that outside this

group who is actually trying these " alternative " treatments, we are seen

as a bit wacky for trying treatments as such when there are no

peer-reviewed journal studies published " proving " their efficacy.

Does that deter us from moving ahead with what we find works for our

child (in the case that our child is a responder, of course)? No.

What if your child does not have a positive experience trying the fish

oils? Do you stop the oils? Do you increase the dose? Do you change

the formula? Do you investigate WHY the omegas are not having an

effect? (malabsorption issues maybe? not deficient?) Do you decide that

it was a waste of time and money?

If your child does respond well to the fish oils, you probably will keep

giving them and not pursue other options...and that is ok, too.

Are the omegas, carnitine, carnasine, vit E the ONLY

" nutritional " -related treatments that MAY work to alleviate apraxia

conditions? No. Are they considered " biomed " treatments? Yes,

technically...since they are non-pharmaceutical, and work on the body's

metabolic imbalances. Can they be expanded to include other helpful

nutritional supports? I don't see why not.

Do the same " rules " and " outlook " about " try and it and see, if it

doesn't work try something else " apply to other biomedical, nutritional

remedies? They should. Do we need to be careful about what we make an

educated decision to try? Yes...research it well first and know the

pros and cons...and potential side effects.

If you have an infection, does your M.D. guarantee that the first

antibiotic he gives you first will work at 100%? or do you sometimes

have to go back and get a different antibiotic because the first one

didn't work as effectively or caused you side effects? Isn't this same

allopathic " trial and error " where the M.D. gives you a cure that he

hopes " should work " but it may not - try it and see, if not he'll give

you something else to " try " . (I had that happen to a friend of mine

who had an MRSA infection last year and it took who knows how many

different " attempts " of " trial and error " until they found a cure that

" worked " ).

All of these " treatments " are very much dependent on parent observations

and open communication/active collaboration with the medical

professionals, along with lots independent research and consulting other

parents in similar situations. Can the same be said of the

omega-carnitine-carnosine-vit E treatments promoted on this discussion

list to date? Yes. Do we discount anectdotal accounts from learned

parents who have researched, already tried and had or did not have

positive experiences? No, we read them and learn the options and

possibilities.

Is giving fish oil without risks? No. Do we inform ourselves of the

risks then decide to move forward or modify the game plan? I hope so.

(I'll send a separate email with some links to fish oil " dangers " - just

for awareness).

Now when we, as informed and edcuated parents, discover through

research, medical testing and talking to other parents about additional

nutritional support possibilities that can help our children's

neurological and muscular impairments and improve their quality of life

in general, want to try (with the appropriate professional guidance, of

course) elimination of simple bad stuff in our kids diets: food dyes,

aspartame, msg, foods that truly cause them physical distress, look at

how their neurotransmitter situation is (neurotransmitters work with the

neurons, and synpases etc to allow nerve impulse two-way communication

between brain and muscles) and fix it if it's out of whack -- we get

whammed with an almost " double-standard " judgement about how dare we do

any " trial and error experimenting " with these additional natural

treatment options. Even the leading researchers of omegas for

treating many developmental disorders, almost all now include the

complete nutritional components and do not focus on just a fraction of it.

Are there additional biomed treatments that are considered more " heavy

hitter " ? Yes, and it is good to know what they are, why they are and

their pros and cons. The NEED to do them may not be warranted if you

child does not have symptoms or lab tests showing that the additional

biomed treatments. If they are necessary, work with an experienced,

trained professional (which does not have to be a " DAN! MD " but anyone

with the holistic knowledge to test, prescribe, and follow adequately

our child on his healing journey...but remember that many - not all- MDs

are not up-to-date on all treatments).

Changing current a tiny bit....is doing vestibular therapy via NACD (or

other neurological organization provider) really more " out there " than

taking your kids to Disneyland to do rollercoaster " vestibular "

therapy? (I admit going to Disneyworld to get the rollercoaster fix

does sound more fun than the vestibular exercises we do at home but it's

a bit far to go to get the daily benefit.) I mention this only because

you have often told us how well your kids have done after your trips

specifically to do that fun activity which did bring a big BANG in their

language abilities. Both my children talk more after they've been

swinging, as another example of how vestibular stimulation helps promote

expressive language....still all tied to the neurological aspect though.

Apraxia is apraxia....stand alone or co-existing with other medical

conditions. We are all here searching for all possibilities to improve

the quality of life for our children who have or may have

Apraxia/Dyspraxia in any of it's many forms. Stand-alone verbal

apraxia probably requires less extra nutritional interventions and

perhaps even " traditional " OT/Speech therapies programs are designed in

a different manner which are individualized for the " less complex "

situation. That does not mean that stand-alone Apraxia is any less

difficult to overcome or that it requires less time and dedicated

efforts across the board.

Since Apraxia/Dyspraxia IS affected by metabolic interferences of

various kinds and since it does co-exist with other conditions in a

higher percentage of cases than stand-alone Apraxia, it makes sense to

at least be aware of this co-existence and know what additional medical

aspects to investigate exist and evaluate and decide if they may be

applicable to your own child's unique state of being.

Apraxic/dyspraxic kids are on a spectrum of severity - but that does not

mean they are the Autism spectrum. We do need to take into

consideration all the issues of our children: seizures, prematurity,

feeding issues, health concerns.

I've again used more examples of the nutritional aspects of treating

Apraxia BUT the same discussions could be expanded to cover Augmentative

Communication options, Speech Therapy Strategies, Occupational

Therapies, Behavioral therapies - not every style of therapy works for

or is needed for every child...and how do we know what works and

doesn't? TRIAL AND ERROR and readjusted the game plan based on the

child's needs and abilities. Do we rely on other parents' opinions

about which of these therapies might work better? Yes. Does the fact

that one of these therapies worked great for one kid mean it will work

great for for mine? Maybe. And I'd rather hear first-hand experience

than just read the marketing presentation of a single therapy.

I believe each of us parents comes to this discussion group with varying

levels of knowledge on the various subjects and definitely unique

personal, first-hand experience with all the different facets of this

problem in common amongst us all - APRAXIA (dyspraxia). , your

family has been " lucky " to have more " true stand-alone " Apraxia issues -

I'm happy for you all, if one can be " happy " about having apraxia to

overcome. In our case, we have two kids with apraxia/dyspraxia who as

time has passed we discovered had more issues (different issues between

them, too) and for whom we've successfully enacted dietary and

nutritional supplement and neurodevelopmental therapies to help them

progress quite nicely... Each of us brings extra knowledge to the

table based on our real-life experiences...and I believe that we all

learn and continue to learn from each other's ever-growing knowledge

base. That does not mean that we have to (or should)follow the lead on

every potential therapy (traditional or otherwise) but I think the

options need to be put out there in a non-defensive, balanced and

respectful way. Do I think everyone needs to follow the path my

family has chosen? No - but I believe they do need to know what valid

options are out there (pros and cons included) and decide for themselves

what may work best for their unique situation.

Like it or not, Apraxia/Dyspraxia IS a COMPLEX problem to have and to

treat with varying degrees of severity and varying related difficulties

from listening problems, to speech production, to word retrieval, to

feeding issues and oral hypersensitivity, to not being able to write or

draw, to not being able to coordinate the hands or other body parts on

command or in a coordinated manner to communicate, not being able to

imitate. Identifying and choosing the " right " treatment combinations

that may work best for a single child is not easy, as we all know.

None of the vast number of therapies which are regularly discussed here

are stand-alone therapies but together they complement each other -

which is a good thing. If one works on nutrition and neurological

deficits, then the rehab therapies like speech, OT, etc. will usually be

much more effective -IMHO....it's a whole body solution.

I'm not against sharing information pro and con on any of the topics

that come up on this discussion group - it's healthy to put all the

cards on the table and then discuss even further why the cited

information may or may not be so valid...I do prefer to see it done

responsibly and respectfully without undertones which result in

additional messages that deter us from our primary goal which should be

helping each other help our children and remain calm and sane in our

already turbulent, complex lives.

[Guest guest]

Thank you for sharing your thoughts.

The double standard has been apparent and very troubling to me for

some time now. In my reading, it appears not only in response to

alternatives other than fish oil and vitamin E, but also with

respect to what evidence of success, validity, and/or " scientific "

support is needed to render theories or experiences " credible " and

worthy of consideration.

More troubling at times for me, though, is the " form and style "

of " debate, " if you will. I firmly believe that productive,

intelligent, educated discussions can be had without being overly

defensive and condescending to opposing theories or to those

advocating differing experiences or views. In fact, that is, in my

view, the only way that productive, intelligent, educated

discussions can be had.

Again, thank you for your well researched :-), well thought out, and

well stated thoughts. I very much appreciate your consistently

helpful, informative, and comprehensive contributions to our journey.

[Guest guest]

WONDERFUL POST!!! Very well said, thank you for taking the time to write it.

The metabolic aspects of dyspraxia are so varied, so complex and so individual

that each time I believe that I have gotten my head wrapped around it; yet

another diverse problem presents itself to me!

It really illustrates the need for open mindedness and the realization that our

children are uniquely individual. There is simply no 'one size fits all'

approach.

Janice

Mother of Mark, 13