Adult onset dyspraxia? Please help

[Guest guest]

" The neurologist thinks he has a neurological disorder that is

progressive but he doesn't know which one "

OMG that is such a horrible thing to say to a parent even if he or

she was thinking this! Especially since what you wrote there is

nothing pointing to this assumption. I would seek a second opinion

with a different neurologist for starters!

Do the testing -but don't say all the reasons why?!!!

You say he's clumsy- is this only recently and if not when did you

first notice it? How is his eye gaze? Can he follow your finger if

you move it around in front of his eyes? Do you have any other

children? Since he was homeschooled and you say he has no friends -

did he ever? How long has his speech been " mushy " ? You say you

noticed it when he had braces on and most have braces during early

teen years -so years ago? Did you ever take him for a speech

evaluation by an SLP? I would highly recommend that in addition to

finding another neurologist for a second opinion.

There could be many reasons for slurry speech -not just progressive

neurological disorders!

http://www.cureresearch.com/sym/slurred_speech.htm And there could be

many reasons for adult onset dyspraxia- we are currently helping

someone with this right now who previously was a TV personality who

was diagnosed with apraxia due to a stroke. We are planned on using

the same methods we use to help children with apraxia -this is what

this person wants to try. According to this article all ages make

the same errors

http://www.ncbi.nlm.nih.gov/pubmed/9127059 Also we don't know for

sure if children that are diagnosed with apraxia are born with it. I

feel strongly that my son's apraxia and many others have acquired

apraxia. Not all acquired apraxia is from a stroke -but in adults

that is what you hear about most.

You say your son is on fish oil. What dosage and formula as they are

not all the same. We do have quite a few older individuals with

apraxia in this group but most don't post often. I hope some do

notice this and reach out to help as well.

Please let us know the answer to those few questions when you can.

Don't give up hope!!!

Below is an archive on fish oils/vitamin E you can discuss with your

son's (new?) neurologist

Re: EFA archives

Here's a page on " how to get fish oil into the child "

(for the person that asked do you use a pin...yup)

http://www.cherab.org/information/dietaryeffects/efatips.html#My

Much more below:

Re: New To Board/long EFA and E archive

here's a pretty long archive on this which covers fish oils

dosage

and the newer vitamin E info as well as suggested blood draws your

child's pediatrician can order which should be covered by insurance.

Good news is that you don't have to do the following all at once and

shouldn't. You want to know what's worth doing and what may not be

needed so add things one at a time and give a few weeks to a few

months at least in between. And -it doesn't matter if you understand

it all to start because most of us didn't either. Just start with

one capsule of the ProEFA (or Efalex or EyeQ or like Omega 3/6

formula) and give us the good news a day to three weeks from now. If

it works -it works pretty quick!

Lot's more info at

http://www.cherab.org/information/indexinformation.html#diet

The following is an old EFA archive from this group which has worked

in this group for years so it's up on the Speechville message

board.

Recently there are a few members who are staying with the same

formula -but raising the dosage to multi dosing two to three times a

day and anecdotally they are observing even more dramatic and

accelerated surges. Due to recent messages I want to clarify that

the following was for the average new member who in the majority

will have a child that is 2 to 4 years old. If your child is around

5 or older you will probably want to start at one a day just for a

week or so and then increase right away to two. Not that you won't

see any changes on the lower dosage but for older children the one a

day (which is comparable to the dosage in infant formula) may not be

enough. Most see the first surges in a day to three weeks almost

across the board. If following a low dose program -most see the

first plateau somewhere between 3-6 months and the second somewhere

between 6 months to a year following the lower dosage way. We don't

know yet as a group if and when plateaus are reached with higher

dosage supplementation. If however you hit a plateau at any point -

you probably want to look to increase dosage -especially if you are

at one a day with a 4 year old say.

After the fish oils -you may want to explore vitamin E

supplementation. That information is below as well.

You can run by your child's MD -start with the basic and observe and

go from there. With fish oils typically the changes are within one

day to three weeks almost across the board -so you'll know pretty

soon whether it's " working " ! Let us know the good news!

~~~~~~~~~~~~~~~~~~~~

What fish oil should I give to my baby or child?

The confusion is more the brand names than the formulas. In

actuality there really is no such thing as a " children's EFA "

perfect for all children yet. However fish oils can be marketed to

children by making fun flavorings and smaller capsules. Most of

the parents I know squeeze the oil out of the capsule anyway -so

that's besides the point for most of our group.

EFAs are now in baby formula and food, and EFAs come and are used in

a variety of formulas for children for various reasons. Mainly we

hear about the use of them for healthy brain development in regards

to children and they are even proven to help with asthma!

Dosage that was used for years (again today it's a bit higher faster)

" I will use the following examples with the brand name ProEFA since

that's the formula/dosage that seems to work the best for most of us

(Efalex and EyeQ are similar Omega 3/6 formulas that also have good

reports) For any brand name of Omega 3/6 formula -you could make

the same formula by mixing together fish oil and either primrose or

borage seed oil if you prefer -or as found -another brand

name with a similar formula (and I hope also a good quality)

If you mix two fish oils together which is fine if you know why you

are doing that: Look at the amount of DHA, EPA (Omega 3) and the

amount of GLA (Omega 6) and then add them all together to see what

formula and dosage you now have is. So for those of you that ask -

you can mix any brand names together you would like -however what

you could change is the three things above (dosage, formula and

*quality (*if one of the companies you start using has rancid oils

which is not uncommon when it comes to fish oils -so make sure all

brands you use are pure) Keep in mind in anecdotal feedback done by

parents from all over through CHERAB -that pure Omega 3 or pure

Omega 6 either showed no results -or very little results in almost

all cases. Pure Omega 3 would include pure cod liver oil, fish oil,

flax seed oil without any Omega 6. So even though there is only a

small amount of GLA (Omega 6) in the formulas we found to be

successful -GLA appears to be important to be there for some

reason. GLA has anti-inflammatory properties which perhaps enable

to DHA and EPA to get to where it's needed in the brain?

Dosage of one capsule a day ProEFA that at the lowest dosage appears

to be the best -

148 mg EPA

99 mg DHA

40 mg GLA

Here is what many of us have found to be the best plan

anecdotally:

....start with the basic formula, one ProEFA a day, we

saw surges in a few days to three weeks which continued for months -

we then reached a plateau after around 6 months.

At this point we raised the dosage to two capsules of ProEFA a day

and once again had those surges which lasted again for months.

When we reached the next plateau after around a year, instead of

going to three a day - we squeezed 1/2 to one capsule of ProEPA into

the 2 capsules of ProEFA and for almost all of us that try -that

created another surge.

Over time -you may raise the dosage up higher -and you may slightly

change the formula to raise the Omega 3 over the Omega 6 ratio.

Most found raising the EPA vs. the DHA or GLA to be best -but

you need to know your own child, keep track of his progress through

both your own observations and that of the professionals -with the

advice of your child's doctor -to know what is best for him/her.

There is much more in the archives both here -as well as more

information at

http://www.cherab.org/information/indexinformation.html#diet

Oil vs. capsules

....Around just 1/4 a teaspoon of ProEFA oil will be around the same

as 'one' capsule of ProEFA since " 1/2 teaspoon of ProEFA oil is

close to the equivalent of about 2 capsules of ProEFA "

In our group we have found ProEFA -Efalex and EyeQ to be the three

best Omega 3 -6 oils, with ProEFA being the best so far overall due

to " it works best at low dosage " . With ProEFA -here is the dosage

which we as a group have found to be effective over the past number

of years with hundreds and thousands of children, and that has been

posted over and over at the CHERAB list. If any of you can figure

out a great way to translate this to the use of straight oil without

the capsules as a guide -please let us all know. In the meantime -

will one of the pharmaceutical R & D people in this group design an

EFA patch already so we can just slap that on our children instead

of all of this?!!

To start:

DHA -around 100 mg

EPA -around 150 -250 mg

GLA -around 30-50 mg

The only dosage we as a group know to be effective is to start with

one capsule of ProEFA a day -then go to two capsules of ProEFA a day

when you see a plateau in about 6 months to a year -then instead of

going to three capsules of ProEFA a day when you see a plateau again

in a year or more -you stay with the two ProEFA capsules a day and

add one capsule of ProEPA.

Just a reminder that the ProEFA oil needs to be refrigerated once

opened. Also once opened it has a shelf life of 2 months. ProEFA

capsules have a shelf life of almost 4 years -do not have to be

refrigerated once opened -and can be carried in your pocket if you

want. You can do this with the oil but you will smell funny.

I chose the ProEFA capsules over the liquid. As always -they work

the best at the lowest dosage. "

Higher dosage fish oil protocol many are doing today with special

thanks to Platenberg for putting this together for us!

Hi ,

First of all, thanks for the group and for the valuable information

you provide. I'm relatively new and was also somewhat confused about

the fish oil dosage. I think i've summarized the latest information

below and thought it might be useful. Let me know if you see any

problems and feel free to post.

First, information on the most commonly used supplements:

Nordic Naturals ProEFA (aka Nordic Naturals Omega 3-6-9)

per gel (weight)

135 mg EPA

90 mg DHA

33 mg GLA (Omega 6)

15 IU vitamin E (alpha)

Nordic Naturals ProEPA (aka Nordic Naturals EPA)

per gel (weight)

425 mg EPA

100 mg DHA

15 IU vitamin E (alpha)

Coromega

1 packet (weight)

290 mg EPA (350 mg EPA by area)

190 mg DHA (230 mg DHA by area)

3 IU vitamin E (alpha)

Next, the dosage that has shown to be most effective for the group:

dosage = 2 gels ProEFA and 1 gel proEPA

695 mg EPA

280 mg DHA

66 mg GLA

135 IU E (alpha)

If you can get the same dosage using different combinations of

supplements then thats ok, the important thing is the ratio. For

example, substituting Coromega for ProEPA approximates the above:

alternate dosage = 2 gels NN ProEFA and 1 packet Coromega

560 mg EPA

370 mg DHA

66 mg GLA

33 IU E (alpha)

If you dont have any GLA because you dont use ProEFA (and the

supplement you use doesnt have GLA), you can supplement with evening

primrose oil or borage seed oil (please research the pros and cons of

these).

Note that higher doses at the same ratio has shown to benefit.

*high-dosage protocol is this amount at up to 3 times per day, which

when totalled up for that day would be (assuming ProEFA and ProEPA):

2085 mg EPA

840 mg DHA

198 mg GLA

135 IU E (alpha)

Finally, Dr. , in her role as concerned mother, observed

significant gains with additional Vitamin E supplementation,

especially with high gamma:

vitamin E dosage = 400 IU alpha, 300 mg gamma

The local vitamin store carries this brand, which seems ok:

High Gamma E, Vitamin Shoppe brand

400 IU vitamin E (alpha)

440 mg vitamin E (gamma)

157 mg vitamin E (beta, delta)

Make sure that the E is not from synthetic sources, which if they were

would be indicated by 'dl-alpha' (synthetic) instead of 'd-alpha'

(natural).

If you'd like to add a disclaimer or whatever you think is necessary

please do, i know that there are concerns about using the words 'dose'

and 'dosage'.

Hope this helps.

-

EFA information

http://www.cherab.org/information/indexinformation.html#diet

EFA tips and sources

http://www.cherab.org/information/dietaryeffects/efatips.html

http://www.cherab.org/information/dietaryeffects/efabasics.html

About mercury and fish oil (vs. eating fish)

" Fish oils have been tested for various heavy metals like mercury

and there has been enough preliminary proof through studies, as well

as theory from reputable sources, that as I've posted many times

I've heard that the oils from fish may be the safest way to get the

benefits of the EFAs without the toxins due to the fact that mercury

etc. binds to the proteins/muscles of the fish. " Measurement of

mercury levels in concentrated over-the-counter fish oil

preparations: is fish oil healthier than fish? "

" CONCLUSIONS: Fish are rich in omega-3 fatty acids, and their

consumption is recommended to decrease the risk of coronary artery

disease. However, fish such as swordfish and shark are also a source

of exposure to the heavy metal toxin, mercury. The fish oil brands

examined in this manuscript have negligible amounts of mercury and

may provide a safer alternative to fish consumption. "

Division of Laboratory Medicine, Department of Pathology,

Massachusetts General Hospital and Harvard Medical School, Boston,

Mass 02114, USA.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=1\

4632570 & dopt=Abstract

And one other thing to keep in mind for those like me who do eat

both fish and take fish oil, there are toxins in the fish you eat

that won't be in the oil For example while mercury etc. binds to

the protein (muscle of the fish) so it's not in the oil of the

fish. From what I've read -the largest problem with fish oil itself

is rancidity. Oxygen and fish oil doesn't mix well. Pharmaceutical

brands of fish oil are typically tested low in peroxide

levels/rancidity. Consumer Reports had this to say (most likely

because toxins in many cases bind to the protein and most oils are

not tested for rancidity)

" Consumer Reports tested 16 top-selling fish-oil pills which, like

other supplements, aren't closely regulated by the FDA.

Consumer Reports' Metcalf says the test results are

reassuring, " We found that all 16 brands that we tested had the

amount of Omega-3s that they said they did, which is good news. And,

we don't always find that with supplements. "

Since fish can contain toxins, Metcalf says Consumer Reports also

checked the supplements for purity, " We tested for three kinds of

toxins that often appear in fish - mercury, dioxin, and PCBs. "

Testers didn't find significant levels of toxins in any of the pills

tested, so you don't have to worry about contaminants. "

http://abclocal.go.com/kfsn/features/consumerwatch/consumer_070303_ome

ga3.html

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

" I had the wonderful opportunity to hear ph Hibbeln, M.D.,

Chief, Outpatient Clinic National Institute of Alcoholism and Alcohol

Abuse, NIH, Bethesda, land at the First Apraxia Conference

http://www.cherab.org/news/scientific.htm lecture about the

importance of PUFA -especially during pregnancy when you are growing

a brain inside you. If you don't consume enough PUFAs while

pregnant -the babies body will pull it from the mother's body. It's

his theory and research as to why so many mom's experience post

partum depression. http://www.beachpsych.com/pages/cc46.html In

additionit is proven that the PUFAs are important for cognitive

ability. http://neuroscience.nih.gov/Lab.asp?Org_ID=352

Here is a quote from the US Department of Agriculture,

Environmental Chemistry Laboratory, Agricultural Research Service,

20705, Beltsville, MD, USA

Brain-specific lipids from marine, lacustrine, or terrestrial food

resources: potential impact on early African Homo sapiens. The

polyunsaturated fatty acid (PUFA) composition of the mammalian

central nervous system is almost wholly composed of two long-chain

polyunsaturated fatty acids (LC-PUFA), docosahexaenoic acid (DHA)

and arachidonic acid (AA). PUFA are dietarily essential, thus normal

infant/neonatal brain, intellectual growth and development cannot be

accomplished if they are deficient during pregnancy and lactation.

Uniquely in the human species, the fetal brain consumes 70% of the

energy delivered to it by mother. DHA and AA are needed to construct

placental and fetal tissues for cell membrane growth, structure and

function. Contemporary evidence shows that the maternal circulation

is depleted of AA and DHA during fetal growth. Sustaining normal

adult human brain function also requires LC-PUFA.Homo sapiens is

unlikely to have evolved a large, complex, metabolically expensive

brain in an environment which did not provide abundant dietary LC-

PUFA.

http://www.unl.ac.uk/ibchn/e_Link/cbpbbmb2002.htm

Since I receive lots of calls about this -I wanted to list the most

common changes in an apraxic or other speech disordered child on

EFAs from what I've read and heard and seen.

1. Increase in babbling or attempts at sounds.

2. Increase in imitation.

Changes also can be looked for in (what you see as positive or

negative)

sleep

attention

appetite

focus

behavior

stools

Next will come a breakthrough of something you were probably working

on for a bit -so you will be excited but will think " Well -I don't

want to get my hopes up we were working on that for awhile now -

maybe it's just a coincidence " However after the second or third

surge in a short period of time -and then another - you are pretty

sure things are different and it's at this point the professionals

and the rest of the family and your friends are noticing it too -

maybe about two to three weeks now.

OK -the next stage is pure elation and hope -you see the light and

no longer feel as desperate and want to share this new information

with everyone and anyone. As the months go by and your child

continues to progress at a much more rapid rate -you may even start

to doubt the original diagnosis -especially if you started EFA

supplementation at two -and perhaps the SLP that diagnosed the

apraxia who also was at first excited is starting to second guess if

the original diagnosis was correct as well.

Unless you have to stop the ProEFA (or other Essential Fatty Acids)

and literally have the chance to see the regression of acquired

speech and language skills, attempts, and changes in behavior like

we did with Tanner (and/or have a chance to again witness the second

surge when your child is put back on the EFAs) -that doubt will

probably remain somewhere in your mind and in others around your

child. So the " I told you that he would start talking when he was

ready " comments should be expected of course.

Up to this point is understandable to me -it's the point after this

that is confusing to me, and perhaps not the best stage for our

children and for raising awareness or having research done to find

out what is happening to our children and why. Perhaps because we

have truly hit a paradigm shift...

As Dr. Agin states the EFAs actually appear to be in some

ways " curing " the apraxic child -even those diagnosed with severe

oral and verbal apraxia, hypotonia, sensory and behavioral issues.

Especially those started at younger ages.

The child on ProEFA or some other EFA formula's like it no longer

fits the criteria of the classic definition of apraxia -and yet

doesn't fit the classic perception of what a late talker is

either...

Some of the parents become more focused on other everyday activities

with their child and start to drift away from the support sources.

Problem with this attitude is that unless your child is really up to

speed on all aspects of speech and language, the support sources

that helped in the beginning will still benefit your child today.

ProEFA alone is not the only answer and until we know how and why it

works (or why in a handful of children it doesn't) we can't improve

on it "

Difference between Omega 3/6 oils and other types of oils like CLO

ProEFA is an Omega 3 (DHA and higher EPA) formula with a small

amount of Omega 6 (GLA) The Omega 3 in the ProEFA is from fish oil -

not from the liver of the fish -so no vitamin A. Only fish oil made

from the liver of the fish contain vitamin A.

Children's DHA is cod liver oil which since it's from the liver of

the cod fish, it naturally contains Vitamin A. Cod liver oil only

contains Omega 3 (DHA and EPA) Here's some information from the

professional anecdotal feedback which is part of the history of this

group http://www.cherab.org/information/historyEFA.html

" Most of our experience is with one, 1.0 gram capsule of ProEFA

(Complete Omega) that contains 144 mg EPA, 99 mg DHA and 40 mg of

GLA. We know that this combination appeared to work well. There

were some other supplements used but we could not conclude anything

about them. I can only say that both EPA and DHA are important and

GLA appears to have an additional positive effect on speech.

ALA, linoleic and oleic acids in " The Total Omega " contribute very

little to the EPA, DHA, and GLA effect.

I see at least 2 possibilities that you could use if you decide to

make the transition from short-chain omega-3s in plants (flax seed

oil containing alpha-linolenic acid or ALA, C18:2n-3) to the long-

chain mixture of EPA (C20:5n-3) and DHA (C22:6n-3). These are DHA

Jr. (30 mg DHA and 20 mg EPA in a serving unit) and Coromega (350 mg

EPA and 230 mg DHA). Both of these have been anecdotally successful

in the past.

Coromega can be divided in two and taken one half in the morning the

other in the evening. If you choose this mode you will provide your

son with the equivalent EPA+DHA of 2 ProEFA capsules per day without

the GLA.

Flax seed oil or freshly ground flax seeds are an excellent source

of the essential omega-3 alpha-linolenic acid (ALA or LNA) which is

the quintessential parent member of the omega-3 family of essential

fatty acids (EFAs). The body transforms it into EPA and the EPA

into DHA. This transformation is very inefficient (the yield is

about 10%) and is further inhibited by over consumption of omega-6

fatty acids from most vegetable oils or certain disease states.

Therefore, it is advisable to independently consume also ready made

EPA and DHA from good quality fish of from high quality fish oil

supplements. Some recommended intakes are listed on the

Introductory lecture on EFAs that I gave at the First Conference on

Therapy of Verbal Apraxia, July 23-24, 2001, town, NJ. (

http://www.cherab.org/news/scientific.html )

The CHERAB Foundation's positive research results on potential

improvement in speech following EFA supplementation are based

on the use of ProEFA (Complete Omega) and that contains also

another essential fatty acid, GLA which is an omega-6 fatty acid.

The latter appears to be beneficial to children with apraxia. It is

not present in flax seed/flaxseed oil.

None of these materials present with any known side effects or

known toxicity in an otherwise healthy person. Nevertheless, we

advise every user of supplements to use them under medical

supervision. We don't know your child and we cannot provide you

with medical advice.

Sincerely,

Katz, Ph.D. "

~~~~~~~~~~~~~

Information about vitamin E and blood draws you may want to consider

with your child's pediatrician from Dr. who is a

pediatrician and mom to an apraxic preschooler

R. , MD

Attending Physician

Director of Fellowship Research

Department of Emergency Medicine

Children's Hospital & Research Center at Oakland

747 52nd Street

Oakland, CA 94609

I really can't " advice " anyone. A lot of this new info is just that -

very new, and totally anecdotal. Your child is very young to make the

diagnosis of apraxia - so it is important for you to get a good

neurodevelopmental ped eval to help you set off in the right

direction, since intervention does differ depending on the diagnosis.

But just because the info isn't published...it doesn't make it

invalid. But all this needs to be confirmed in a clinical trial

before there will be broader applications and true recommendations

made.

What I can tell you that we have learned:

1. Gluten-sensitivity is common in apraxia as well as in kids with

autism spectrum disorder. Whether this is true celiac or some non-

celiac gluten-sensitivity with neurological complications remains

unknown.

2. Carnitine deficiency is common among our kids with apraxia. This

is also reported in the autism literature as common in ASD. If a

child has low tone, part of the work-up should include plasma

carnitine (total and free), and acetyl-carnitine, and a complete

metabolic panel, CBC (basic labs).

3. Vit E deficiency symptoms overlap those of global apraxia. However

when apraxic kids were tested, levels were all over the place, from

truly low (and important to identify) to very high even before

supplementation. If testing for Vit E, a good idea to screen for all

the fat soluble vits: ADEK. 2 children with apraxia and rickets were

also identified. Pre-treatment levels of vit E did not reflect

response to vit E supplementation.

4. If there are lots of GI symptoms, perhaps a malabsorption work-up

is indicated? Stinky poop that float, chronic diarrhea, abdominal

pain (all reasons to screen for celiac)...suggest possible

malabsorption. Screening stool studies include stool for pH,

reducing substances, and fecal fat. So far, ph is the only

apraxic kid I know that has had this done, and it is preliminarily

positive. He needs a bigger malabsorption work-up.

Malabsorption does not explain everything. I suspect this is going to

be a multifactorial problem. There is underlying inflammation in at

least all the " allergic " kids. This is likely also contributing to

increased consumption of antioxidants. But there may be even more to

the story, like abnormal transport of vit E or carnitine into cells

etc. We have alot to learn. Gluten-sensitivity is very common in

apraxic children. Of the children who reported bloodwork, 13/14 had

pos antigliadin antibodies. The 1/14 who was negative was actually my

son ph - gluten free since age 3 weeks, an negative celiac panel,

definitely gluten/wheat allergic clinically, and carries the genetic

HLA for gluten-sensitivity/celiac disease. So basically everyone who

tested and reported, had gluten-sensitivity. Clearly you can have a

negative screen and still be gluten-sensitive...like my boy,

especially if gluten free. But with a negative celiac panel...going

gluten-free would not be the first thing on my list to try. Other

allergens (like milk for example)...can also cause gut inflammation

if you are allergic to it. There are no really good allergy tests.

One can try RAST and skin testing...but its an imperfect science.

Best to be coordinated with a good pediatric allergist.

Print out the abstract below and give to your pediatrician. At least

they will know why you are asking for these things.

Presented as an oral presentation at the Annual Meeting of the

Pediatric Academy Societies, (Late-Breaking Platform Session)

Toronto, Cananda May 2007.

Title: Impact Of Vitamin E And Omega 3 Supplementation In Children

With Verbal Apraxia R , MD1 and Marilyn C Agin, MD.

1Emergency Medicine, Children's Hospital & Research Center Oakland,

Oakland, CA, United States.

I posted the abstract so people can print it out and give it to their

pediatricians. Our job as docs is to " do no harm " and there's a lot of

misinformation out there on every topic imaginable, with lots of

potential side effects. This is why evidence based medicine is such an

important topic. And when there is a new discovery - it should be

tested and published for the benefit of everyone...or it remains

anecdotal and will illicit skepticism. I don't fault your physician. I

am also skeptical of anecdotal treatments that don't get tested. If

its such a great new intervention - then it should make its way into a

clinical trial. Many " claims " are just not true, or fail to show

benefit in a clinical trial. When I first heard about omegas...I did

my homework. Although anecdotal in the apraxia world (like thousands

of families)...there is very good science behind its use in similar

conditions in the medical literature. Its not an unsupported idea.

Up until this point there really has been very little in the medical

literature on apraxia. But there is a ton of info out there on the

benefits of omega 3 for many illnesses, and in particular many

neurodevelopmental conditions like dyslexia, dyspraxia and ADHD. Dr.

MD has been a leader in this work. Vit E is a totally

new discovery as of August 2006. Therefore no one has heard about it

outside this group, and we are taught as physicians to be cautious

with fat-soluble vitamins....and that vitamin E is rarely deficient.

That notion will likely be changing over the next few years.

The abstract was peer reviewed and accepted in a very

competitive " Late-Breaking " oral platform session at the Pediatric

Academy Society meetings (your pediatrician should be familiar with

the American Academy of Pediatrics and the society for pediatric

research) in Toronto this May 2007. This is a scientific meeting, so

it's not something worth any non-medical person's time and energy to

go to. But from the science perspective of nutritional approaches to

apraxia...this is a major pediatric meeting, and is an excellent 1st

step in getting this info out to the medical community. In addition 5

boys with apraxia have been genetically (HLA) tested, and ALL 5 carry

the gene for gluten-sensitivity. This is much higher than one would

expect by chance. Somehow gluten-sensitivity is associated with this

syndrome in some of these kids. Hopefully the attention the topic

gets at the pediatric meetings will help me get funding for a trial.

Here is the abstract again for those who missed it. (Many of you

contributed to the data - and I thank you for that!).

Late-Breaker Abstract Presentations Monday, May 7 2007 Pediatric

Academic Societies' Annual Meeting 5570.8 Presentation Time 2:31 PM

Impact of Vitamin E and Omega 3 Supplementation in Children with

Verbal Apraxia R. , Marilyn C. Agin. Emergency

Medicine, Children's Hospital & Research Center Oakland, Oakland, CA.

BACKGROUND: Verbal apraxia (VA) is a neurologically-based motor

planning disorder of unknown etiology common in autism spectrum

disorders (ASD) that anecdotally responds to omega 3 polyunsaturated

fatty acid (PUFA) supplementation. Vitamin (vit) E deficiency causes

symptoms that overlap those of VA. PUFAs in the cell membrane are

vulnerable to lipid peroxidation & early destruction if vit E is not

readily available, potentially leading to neurological sequelae.

Inflammation of the gastrointestinal tract and gluten sensitivity may

contribute to malabsorption of nutrients such as vit E and carnitine,

contributing to fatty acid metabolism dysfunction and neurological

abnormalities. OBJECTIVE: Determine efficacy of vit E and

PUFA supplementation in children with VA.DESIGN/METHODS: 50 children

diagnosed with VA were treated with vit E + PUFA. 10 of these

children were known to have ASD. A celiac panel, fat soluable

vitamins, & carnitine level was obtained in patients having blood

analyzed. RESULTS: Age ranged from 2- 13 years, (majority < 5 yrs), &

38/50 were boys. A history of gastrointestinal symptoms, sensory

integration dysfunction, low muscle tone & coordination difficulties

(dyspraxia) was commonly reported. 48 families (96%) anecdotally

reported dramatic improvements in a number of areas including speech,

imitation, coordination, eye contact, behavior, sensory issues & the

development of pain sensation. 2 children experienced new tearful or

aggressive behavior within 3 days of initiating vit E (400 IU/d)

without apparent benefits in speech, & therapy was withdraw within a

week. No other adverse effects were reported. Plasma alpha tocopherol

levels varied in children tested (low in 2, high in 4 and normal in

4), however pre-treatment levels did not reflect clinical response.

Low plasma carnitine was identified in 13/14 (93%) children.

Antigliadin IgG antibodies were high in 9/11 (82%) children tested. 2

children reported vit D deficiency & early signs of rickets.

CONCLUSIONS: We describe a new disease paradigm of abnormal vit E &

fatty acid metabolism causing neurological dysfunction in VA that

responds to a safe nutritional intervention. The association of

carnitine deficiency & gluten sensitivity with VA is a novel

observation, suggesting that these children deserve a more

comprehensive metabolic work-up than what is current standard

practice. Larger controlled trials in apraxia & autism are warranted

Title: Syndrome of Allergy, Apraxia Malabsorption: Characterization

of a Neurodevelopmental Condition that Responds to Omega 3 Vitamin E

supplementation R , MD1,