I am new to the group

[Guest guest]

Hi,

When I received my protocol package from natural healing solutions,

he included a four ounce sample of MSM lotion with emu oil and a few

other goodies. You may want to look into that because it is all

natural and has no preservatives, additives, etc. The ingredients

will all be listed on www.naturalhealingsolutions.com.

Also, perhaps some tea tree oil may help you with your skin as well.

> I have just started the diet plan with the pro biotics and anti

> fungals etc . I have suffered with constipation irritable bowel

> thrush lethargy etc , My main concern though is my skin Iam

> hypersensitive to most perfumes and household chemicals My skin

burns

> up a lot and I get blisters on my hands from chopping veg and other

> food. Ihave been using betnovate cream on my skin for years , I

have

> tried to stop gradually but have severe reactions when I do . Since

i

> started the diet some of my symptoms have improved but I am still

> using the betnovate . Does any one have advice on what to do next

as

> I have tried saying this to doctors but they seem to think its all

in

> my head .

[Guest guest]

I am very new to this group but am very glad to be a part of it. I have a

soon to be 3 year old boy (3 yrs next week) who has a severe speech delay

and a little behind in some other select areas. He has about 10 words now

after a lot of speech therapy and recent OT. In reading some of the email

coming through can anyone explain “lot tone?” I keep hearing this but don’

t totally understand it. Can anyone explain the low tone to me? One of our

doctors has said that our son has a carnitine deficiency which we are trying

to address. We have tried both oral meds and suppositories, but his body is

rejecting both forms.

Thanks, Ann

[Guest guest]

Hi Ann!

Where was your child prior to February in regards to speech? How

long did it take your child to learn new sounds or words and does it

appear as if he's learning faster? Years ago not many were doing the

fish oils so it was easier to tell the difference and people weren't

expecting the child to get to sentences in a month or two -but at

least to start saying words -learning more. Apraxia as many of us

know can be painfully slow in progress which is why many of us count

things as words that many others may not. Prior to EFAs it was not

unusual to have apraxic children after even a year or years of

therapy that were still essentially nonverbal -and I'm sure you've

read some of emails from newer members who have children that are

school age and nonverbal. We aren't seeing that as much today. I

checked your archives and you had your child on cod liver oils prior

to the ProEFA -and your child also has a carnitine deficiency which

needs to be addressed. Once you do figure out with the metabolic

specialist the best way to supplement your child with carnitine you

may notice surges as well. Unlike the fish oils however in your

child's case the carnitine with or without surges is necessary and

can be life saving.

I would stop the oils...wait a few weeks...and then start again.

Observe each time and if you do not notice any regression when off

nor any surge when put back on -you can probably stop the oils unless

you want to continue for health reasons. I believe with the

carnitine deficiency this is all linked together so you may want to

speak with your child's geneticist who specializes in metabolic

disorders since they may come to think of it want you to continue

supplements. Also are you doing the mixture of ProEFA/ProEPA and

vitamin E? Dr. ' son and many others who were tested

to be carnitine deficient (which is historically rare -but not in our

group) in almost all cases had surges on the oil therapy.

Here's some information from an archive as to how you can tell the

difference between a child who is having a mild surge vs. no response

at all. For sure those of us that had children with moderate to

dramatic surges -there's no question!

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

In my experience -the difference between a word being said with an

apraxic child on and off the right formula of EFAs is that on the

right formula -you will get them not only to repeat what was said

again and again -but they will grow and continue to surge from where

they are -just like most kids -just not quite as fast. A typical

apraxic child not on EFAs should in most cases not be put on the spot

and asked to repeat -and will mostly show frustration when you do ask

since they typically can't recall how they moved their mouth to say

it right the first time.

When taken off the EFAs -the children don't always regress all the

way back -however it does appear that not only do we -the parents and

professionals that work with them notice the regression -it does

appear that the children notice they no longer are able to do what

they were doing. For those children that don't appear to regress at

all when taken off -almost all have a second " surge " when put back

on -again within a day to three weeks. You can tell that the kids

that have surges on the EFAs are just as amazed and proud of their

speech as we are. So pull out the camera -pick up the phone -doesn't

appear to matter. And it is very cool.

Just one thing -you can 'buy' brand name if you want -don't just go

only 'by' brand name -it's all in the formula...There are formula's

out there named ProEFA that are not the correct formula -this isn't

like Tylenol or anything and I guess nobody thought trademarking the

name for ProEFA was important at the time. Yes ProEFA from Nordic

appears to be a formula that works best for most of our kids so far -

however Efalex and Eye Q and here and we hear about other formula as

well.

The only two that I've personally seen lots of us try in comparison

is Efalex vs. ProEFA and almost all of us for some reason found the

ProEFA to work better at a lower dosage. Again I suspect it's the

higher EPA in the ProEFA. It would be interesting to see the

difference between EyeQ and ProEFA. So far I've only heard from a

handful -and it appears not much difference overall.

Here is the formula again. Start slow and you can see if a bit more

EPA or DHA is better for your child. Most of us found the higher EPA

to be better.

Omega 3

DHA (from fish) about 100 mg

EPA (from fish) about 150 to 200 mg

Omega 6

GLA (from borage or primrose oil) around 30 -50 mg

(Ann ProEFA contains DHA, EPA and GLA)

Here is some basic information on EFAs

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

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

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

Here are some other websites about EFAs:

http://efaeducation.nih.gov/

http://efaeducation.nih.gov/sig/food.html

http://www.durhamtrial.org/

http://www.medscape.com/viewarticle/550051

http://www.martinezfoundation.org/Foundation/historyen.aspx

From what most of us have seen and reported here -the changes on EFAs

again will be typically first be seen from one day to three weeks

(give or take) even though most of the PhD's say up to 3 months to

notice the change. Within that time you will just like you reported

hear spontaneous speech -the first word, " break throughs " more focus,

eye contact and attempts etc. There probably was an increase in

babbling or facial movements before that you may not have noticed.

Again in my experience -in 3 to 5 months most of the nonverbal

children are attempting 2 to 3 word sentences. Each word alone may be

clear -but when put into the sentence -at first they may break down a

bit again -however with a model they can typically get it right!

Tanner's first sentence without a model? " Ah Of Oooh " (I love you!)

You can hear Tanner and other apraxic children from our group at

http://www.debtsmart.com/talk

One other thing -I always say apraxic since apraxia can overlap or be

misdiagnosed -however parents of children that range from undiagnosed

late talkers -to mild to moderate autistic (not as often severe) -to

those with genetic or myelin disorders or syndromes, to even those

with ADD and other language disorders - have also reported the same

types of results. The EFAs do appear to stimulate the communication

area of the brain somehow.

=====

[Guest guest]

, what is the recommended dosage of ProEFA/ProEPA and Vitamin E?

Ann

[ ] Re: I am new to the group

Hi Ann!

Where was your child prior to February in regards to speech? How

long did it take your child to learn new sounds or words and does it

appear as if he's learning faster? Years ago not many were doing the

fish oils so it was easier to tell the difference and people weren't

expecting the child to get to sentences in a month or two -but at

least to start saying words -learning more. Apraxia as many of us

know can be painfully slow in progress which is why many of us count

things as words that many others may not. Prior to EFAs it was not

unusual to have apraxic children after even a year or years of

therapy that were still essentially nonverbal -and I'm sure you've

read some of emails from newer members who have children that are

school age and nonverbal. We aren't seeing that as much today. I

checked your archives and you had your child on cod liver oils prior

to the ProEFA -and your child also has a carnitine deficiency which

needs to be addressed. Once you do figure out with the metabolic

specialist the best way to supplement your child with carnitine you

may notice surges as well. Unlike the fish oils however in your

child's case the carnitine with or without surges is necessary and

can be life saving.

I would stop the oils...wait a few weeks...and then start again.

Observe each time and if you do not notice any regression when off

nor any surge when put back on -you can probably stop the oils unless

you want to continue for health reasons. I believe with the

carnitine deficiency this is all linked together so you may want to

speak with your child's geneticist who specializes in metabolic

disorders since they may come to think of it want you to continue

supplements. Also are you doing the mixture of ProEFA/ProEPA and

vitamin E? Dr. ' son and many others who were tested

to be carnitine deficient (which is historically rare -but not in our

group) in almost all cases had surges on the oil therapy.

Here's some information from an archive as to how you can tell the

difference between a child who is having a mild surge vs. no response

at all. For sure those of us that had children with moderate to

dramatic surges -there's no question!

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

In my experience -the difference between a word being said with an

apraxic child on and off the right formula of EFAs is that on the

right formula -you will get them not only to repeat what was said

again and again -but they will grow and continue to surge from where

they are -just like most kids -just not quite as fast. A typical

apraxic child not on EFAs should in most cases not be put on the spot

and asked to repeat -and will mostly show frustration when you do ask

since they typically can't recall how they moved their mouth to say

it right the first time.

When taken off the EFAs -the children don't always regress all the

way back -however it does appear that not only do we -the parents and

professionals that work with them notice the regression -it does

appear that the children notice they no longer are able to do what

they were doing. For those children that don't appear to regress at

all when taken off -almost all have a second " surge " when put back

on -again within a day to three weeks. You can tell that the kids

that have surges on the EFAs are just as amazed and proud of their

speech as we are. So pull out the camera -pick up the phone -doesn't

appear to matter. And it is very cool.

Just one thing -you can 'buy' brand name if you want -don't just go

only 'by' brand name -it's all in the formula...There are formula's

out there named ProEFA that are not the correct formula -this isn't

like Tylenol or anything and I guess nobody thought trademarking the

name for ProEFA was important at the time. Yes ProEFA from Nordic

appears to be a formula that works best for most of our kids so far -

however Efalex and Eye Q and here and we hear about other formula as

well.

The only two that I've personally seen lots of us try in comparison

is Efalex vs. ProEFA and almost all of us for some reason found the

ProEFA to work better at a lower dosage. Again I suspect it's the

higher EPA in the ProEFA. It would be interesting to see the

difference between EyeQ and ProEFA. So far I've only heard from a

handful -and it appears not much difference overall.

Here is the formula again. Start slow and you can see if a bit more

EPA or DHA is better for your child. Most of us found the higher EPA

to be better.

Omega 3

DHA (from fish) about 100 mg

EPA (from fish) about 150 to 200 mg

Omega 6

GLA (from borage or primrose oil) around 30 -50 mg

(Ann ProEFA contains DHA, EPA and GLA)

Here is some basic information on EFAs

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

<http://www.cherab.org/information/dietaryeffects/efawhatsthat.html>

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

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

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

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

Here are some other websites about EFAs:

http://efaeducation.nih.gov/ <http://efaeducation.nih.gov/>

http://efaeducation.nih.gov/sig/food.html

<http://efaeducation.nih.gov/sig/food.html>

http://www.durhamtrial.org/ <http://www.durhamtrial.org/>

http://www.medscape.com/viewarticle/550051

<http://www.medscape.com/viewarticle/550051>

http://www.martinezfoundation.org/Foundation/historyen.aspx

<http://www.martinezfoundation.org/Foundation/historyen.aspx>

From what most of us have seen and reported here -the changes on EFAs

again will be typically first be seen from one day to three weeks

(give or take) even though most of the PhD's say up to 3 months to

notice the change. Within that time you will just like you reported

hear spontaneous speech -the first word, " break throughs " more focus,

eye contact and attempts etc. There probably was an increase in

babbling or facial movements before that you may not have noticed.

Again in my experience -in 3 to 5 months most of the nonverbal

children are attempting 2 to 3 word sentences. Each word alone may be

clear -but when put into the sentence -at first they may break down a

bit again -however with a model they can typically get it right!

Tanner's first sentence without a model? " Ah Of Oooh " (I love you!)

You can hear Tanner and other apraxic children from our group at

http://www.debtsmart.com/talk <http://www.debtsmart.com/talk>

One other thing -I always say apraxic since apraxia can overlap or be

misdiagnosed -however parents of children that range from undiagnosed

late talkers -to mild to moderate autistic (not as often severe) -to

those with genetic or myelin disorders or syndromes, to even those

with ADD and other language disorders - have also reported the same

types of results. The EFAs do appear to stimulate the communication

area of the brain somehow.

=====

[Guest guest]

Hi Ann! Pretty funny when I went to find an archive about stopping

the cod liver oil I found yours! I already told you to stop the cod

liver oil on the 16th. You probably missed this message -but it

covers the protocol as well and explains why you won't have a surge

when you have your child on cod liver oil together with ProEFA.

You are getting fish oil with the ProEFA -the only thing that the cod

liver oil is adding (other than DHA and raising the Omega 3) is

vitamin A. If you want to raise the Omega 3 -in almost all cases you

need to raise EPA not DHA. More is not always better.

History as to how we learned high DHA Omega 3 didn't " work "

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

What type of doctor is telling you to give your child cod liver oil

fish oil while on ProEFA fish oil? In the archives you'll find most

see the surges once they stop the cod liver oil. Even if you 'just'

use one ProEFA a day (with no cod liver oil) you should notice

something. If you want to add extra fish oil to the fish oil -make

sure it's one that's high in EPA or you'll change the formula and it

won't " work "

~~~~~~~~~~~~~~~~archive from the 16th

Re: New to Group - 10 year old apraxic and autism

Hi Ann and Becky and welcome! Just a side note about cod liver oil.

Cod liver

oil is healthy -but what we've use is both healthy and found for

years to be

much more effective in " working "

You would want to stop the cod liver oil and replace that with the

following

fish oils. The CLO is higher in DHA and a pure Omega 3 -we found a

higher EPA

(another Omega 3) to be more effective if you are going to raise the

Omega 3.

Also we found that we need some Omega 6 for best results. Fish oil

not made

from the liver of the fish doesn't contain vitamin A. You can't do

higher

dosages of CLO without caution of overdose of vitamin A. Fish oil not

made from

the liver of the fish does not contain vitamin A. If you continue to

give the

CLO with the following you change the formula and dosage -and not in

a good way.

You raised the Omega 3 DHA and changed the ratio of Omega 3 to Omega

6.

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

Hope that's not too confusing -as I always say however the good news

is that you

don't have to understand it for it to " work " and it appears to work

in a day to

three weeks for almost all! Here's the " protocol " from the archives:

Classic formula/dosage we used for years is below. Even if you start

at low dosages of the " right " formula you should notice surges in a

day to three weeks almost across the board. Today, due to Dr.

' findings – many proceed a bit faster and have seen even more

accelerated gains. Most go quickly up to give their child 2 capsules

of ProEFA to one capsule of ProEPA –start at once a day and some give

that up to three times a day (I always gave them all to my son in one

dosage in the AM.. always increase the ProEFA prior to the ProEPA

due to ratio) The vitamin E needs to be natural and not synthetic

form and you want both alpha and gamma E. Try to give each addition

a few weeks to months in between so you see what's needed. If your

child is one of the few were the therapy and the fish oils/vitamin E

doesn't work there are other options –so don't despair!

Here's clips from the archive that may be most important

" 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

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

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 "

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. Here's the dosage

and brand many here find success with:

vitamin E dosage around = 400 IU alpha, 400 mg

gamma

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

High Gamma Tocopherol (E), Vitamin Shoppe brand 200 mg gamma 200 IU

alpha per capsule.

400 IU vitamin E (alpha)

400 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).

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

significant gains with additional Vitamin E supplementation,

especially with high gamma:

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.

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,

[Guest guest]

,

I may know how to help you through high-pH therapy.

Dr. Dan, PhD Researcer

On Sun, Sep 13, 2009 at 7:10 PM, denisesjon <denisesjon@...> wrote:

>

>

> Hello All,

>

> I am dealing with allergies/sensitivity to fragrance/chemicals. I cant find

> a doctor in Michigan that takes insurance , that will help with my problem.

> I need testing done to see if I have parasites, or any other underlying

> problem that can be causing my sensitivity.

>

> I was curious if anyone on here had problems with chemical sensitivity and

> if so what caused it if you know and what has helped?

>

> Thanks

>

>

>

>

[Guest guest]

>

> Hello All,

>

> I am dealing with allergies/sensitivity to fragrance/chemicals. I cant find a

doctor in Michigan that takes insurance , that will help with my problem. I need

testing done to see if I have parasites, or any other underlying problem that

can be causing my sensitivity.

>

> I was curious if anyone on here had problems with chemical sensitivity and if

so what caused it if you know and what has helped?

>

> Thanks

>

>

After all these replies I would be more confused than enlightened. So what is

the answer. There is no single simple answer to detoxing. So much depends on

your body's chemistry, your preferences, your time constraints, etc.

As far as testing goes, they are not always accurate. Go by your symptoms. So

slow and learn as you go.

I would start with a simple bowel cleanse and proceed from there. See how you

feel after each step and then go forth.

I hope this helps.

Propaul