efa's

[Guest guest]

Sorry to hear that Jennie. I remember reading about you driving to Dr. Friedman

(the trip I mean). What kind of doc is he? We too had a bad visit last month

with a Ped. Neuro. I don't know if you remember reading about it, but I know how

you feel.

Re: [ ] EFA's

very cool Kim! EFA'a was much needed for your child!

We saw Dr Friedman yesterday for my kids,the news wasnt as good.

Jennie

[Guest guest]

Kim this is so exciting! Wow!!

Did Dr. Friedman say what if any link there is between strabismus

and Occular Motor Apraxia/Oculomotor Apraxia/Ocular Motor Apraxia

(what is it with the apraxias that they can never decide on just one

name?!) http://wwweb.org/oma/ Was OMA (to keep it easy) ruled out?

What did Dr. Baquero have to say? If you didn't already -we should

share your great developments with Dr. Altman too since he'll be

helping coordinate research here in Florida. I'm sure Dr. Agin is

thrilled to hear this update as well even though I haven't spoken to

her yet about it. We should also let Kaufman know since she

got to see Blythe at the Apraxia Conference in SC

http://www.cherab.org/news/nc2003-conference.html

Below I have information from a past member named Lynn about

her son Austin who has apraxia and is blind from LCA (Leber's

Congenital Amaurosis)

I know one or two children from our group who have eye problems -but

the parents don't post about it here -either way -doesn't appear to

be enough children with apraxia and eye disorders to do a formal

study yet. I do know that there have been various research studies

on the eye and PUFA (without mention of whether apraxia or other

communication impairments were involved)

For example -here is one that I believe is for the importance of

PUFA (EFAs) on strabismus.

" Birch E, Birch D, Hoffman D, Hale L, Everett M, Uany R. Breast-

feeding and optimal visual development. J Pediatr Ophthalmol

Strabismus 1993;30:33-8. "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=8\

455123 & dopt=Books

I believe this study involved the PUFAs found naturally in breast

milk -not the " magic fish oil " we use from the capsules -but still -

as you will find from many other studies -much of the breast milk

today in most of the world is low in the EFAs, and getting it into

the child is still getting it into the child no matter how you do

it. Here is one paper on the importance of the PUFAs in breast

milk.

http://www.ub.rug.nl/eldoc/dis/medicine/e.n.smit/c3.pdf

Here are just two of the past posts from Lynn -I hope she has

rejoined our group again -she had emailed me awhile back and said

she would. It's important that as a group we share all aspects of

our children, to help all the children. Lynn was the first to

raise the issue of " how do you test a blind child who is also

apraxic using the typical verbal tests that involve pictures? "

Perhaps you will want to share the following with Dr. Friedman as

well. I'll try to email Lynn for a more recent update.

From: Lynn McClendon <mamapudd@...>

Date: Tue Jun 4, 2002 12:18 pm

Subject: 2 wks proEFA update

Hoping this is of interest to someone... : )

I started Austin on EFAs 2 wks and 2 days ago. The biggest changes

are the

attempts at words and actual words that we can figure out coming

out. He's

happier and no longer seems autistic as we were beginning to think

he might be.

Many times we aren't certain of what he is trying to say, but we are

so darn

happy he is getting anything out of his mouth.

Yesterday he said " ama " for mama. He has slurred some sentences,

saying them

almost in a hum. (he's done that before but it's been a very looong

time) He

has put a few words together when they are presented together to

him. He is

displaying sounds and knowledge we saw a really long time ago. For

example in

playing with a phonics desk he was naming a few letters again. Last

time he did

that he was around 13-15 months. He labled N and M and looked for O

and found

it when I asked. Didn't continue to quiz those though. Letters are

pretty much

useless to him as he is blind and will need to learn braille.

(resistant to it

though)

The word lion was one of the first we heard after starting the EFAs.

Yesterday

it became " ianl " . It sounded like lion all mixed up. He is trying to

make word

sounds for his song Twinkle as of last night.

As for his sleep- WOW! You can't even imagine. Austin has not slept

more than

about 8 hours total a day for well over a year, with only exceptions

being

medication for illnesses. If he had extra sleep he would stay awake

longer.

Well, at the exact time I started the EFAs, he began sleeping about

10 hours a

night! He is even occassionally taking a nap of up to 2 hours. (rare

though)

His eyes- not sure. I don't really know that I expect anything will

happen

there but I keep wondering. His disease is characterized by a flat

ERG

(measures rod and cone functioning), dark circles under eyes,

nystagmus and

profound farsightedness. Austin has glasses, but mostly for cosmetic

reasons.

He had begun to refuse them altogether and we were giving up on him

wearing

them any longer. When I put him on the EFAs I decided 2 days into it

to try the

glasses again. He started wearing them. He would throw them off

occassionally,

but was wearing them the majority of the time. Yesterday he ran into

3 big

items. He never does this with or without the glasses. He threw the

glasses

immediately each time. As if he felt they were to blame- which is

very

interesting. The dark circles under his eyes are slightly lessened.

I'm not

sure if that's significant or just puffy eyes in the morning?

Ok- didn't mean to go on so long.

I love hearing updates and hope others will continue to post them.

Lynn

Austin 28 months (LCA)

From: " boosis.geo " <mamapudd@...>

Date: Mon Jul 8, 2002 8:26 am

Subject: Our EFA update...

Austin began getting EFA supplements on May 19th. So he has been on

them for 6 weeks now. The difference they made in him was/is

remarkable. His behavior changed. He appeared to sort of wake up and

become less evasive about everything. The dark circles under his

eyes

are almost non-existant. He began babbling 2 hours after taking

them.

He has babbled some off and on and had words early, but had a loss

and regain pattern. From 18 months he had a complete loss of words.

I

can't remember right this minute if it was the next day, or 2 days

later, but Austin began saying words after EFAs. He would take his

little linguist and say the name of the object or it's sound. He

added some words and could say these few words just about any time

he

wanted. One word he gained was his name. I made a few recordings of

him speaking on our still cameras video setting. I'm hoping to get

his videos from 5 months and these from 28 months, on our horribly

out of date web page. (very busy month so not likely)

Ok, so here is what we have now... he is still sitting at a word

loss. But, I think it may be coming back. Even with his speech loss

yet again, I am floored by the amazing differences that came with

supplementing him with fats. I feel he needs something more

nutritionally and am going to make calls today to see where things

are with all the calls, paper work and such I did prior to the

holiday week. His slurred sentences are coming back occassionally,

but I'm apparently the only one that catches them. ex: " he i are "

all

slurred together for here i are. The interesting thing to me about

these slurred sentences is that he isn't repeating proper sentences

all the time and sometimes he changes the sentences to be proper.

That shows me that we have way underestimated his cognitive skills.

DH and I just got back from a short trip. I'm noticing that Austin

is

now holding food in his mouth forever. Something he has done before

but not recently. He has also apparently picked back up on saying

his

name. Now instead of saying it *Au hin*, it's more of an *Au in*. He

seems to be trying to say mama, but it's very difficult and mixed up

most of the time. He did say *hi mama* once the other day.

So, I still have the same question I did a few weeks ago... Has

anyone that had results of speech so quickly with EFAs, had a loss

after it? It's very apraxic I know, but I am wondering if the

loss/gain/change or words, is still such a prevalent pattern after

starting EFAs?

I should note that he is NOT in therapy at all right now. It's been

very difficult trying to get time coordinated with ECI. And as I

said

I've not heard back from the zillions of calls I made. I was

allowing

for the long weekend, holiday wk and paper work to be processed.

Lynn

Austin 29 months (blind from LCA)

=====

[Guest guest]

Kim,

Just an fyi post on my sons eye problem. He used to wink alot as a baby -

although it was cute I knew it wasn't the norm. He has intermittent exotropia.

" wall eye " turns out and squints in the light or tired, or trying to focus. Both

eyes. He was seen by 2 opto and they both agreed. He is getting surgery - to

tighten outside muscle - Friday 6/27

Yes I am sick over it. I have inquired and researched is this ocular apraxia -

no. He has been on efas since March - speech is going good but eye problem no

change. He also has no vision problems.

Say a pray for my guy,

Lori J.

mother to almost 4 verbal apraxia

[Guest guest]

Hi Lori,

My son sometimes squints 1 or both eyes. usually when he is tired or

stressed. Definitely subsided quite a bit since EFAS and is much less

frequent. Now I can actually say " open your eye " and he will. He too

has been seen by 2 eye ped. dr.s and I guess b/c they aren't turning

surgery was never suggested.

Good luck!

denise

> Kim,

> Just an fyi post on my sons eye problem. He used to wink alot as a

baby - although it was cute I knew it wasn't the norm. He has

intermittent exotropia. " wall eye " turns out and squints in the

light or tired, or trying to focus. Both eyes. He was seen by 2 opto

and they both agreed. He is getting surgery - to tighten outside

muscle - Friday 6/27

> Yes I am sick over it. I have inquired and researched is this

ocular apraxia - no. He has been on efas since March - speech is

going good but eye problem no change. He also has no vision problems.

> Say a pray for my guy,

> Lori J.

> mother to almost 4 verbal apraxia

[Guest guest]

,

Those cravings make it sound like a candida (yeast) issue. You can read more

about this at: http://nationalcandidacenter.com/whatiscandida.htm I don't

recommend any of the products that they sell here - I have no experience

with them whatsoever other than this is an excellent, easy to understand

article on candida overgrowth. From my understanding and experience, the

best way to deal with this is to eliminate carbs and add a probiotic/good

yeast from real yogurt, supplement, etc. Perhaps someone else here might

have some input.

EFA's: You can visit my just updated webpage on apraxia to read about Luke

and EFA supplement. There are links there to a wealth of information on

this. We also do GFCF and have had great results with that too. Amazing

really.

www.breathingroom.faithweb.com/apraxia.html

Homeschooling? Visit our home on the web!

http://www.breathingroom.faithweb.com

https://www.paypal.com/xclick/business=teachingathome%40lycos.com & item_name=

Breathing+Room+Subscription & item_number=BRSUB & no_note=1 & tax=0 & currency_code=

USD

[Guest guest]

I had my son on 1000 mg for one week and he became hyperactive and

out of control - I am glad he did not get seriously hurt....

Tina ( 4)

took him off, ordered children's dha.... the dosage is smaller and

safer.

> Before I get my hopes up about ProEFA, has anybody not had a good

> experience using it? Appreciate any feedback you may have. I am

not

> sure if my daughter has a disorder or is just speech delayed.

[Guest guest]

I noticed in the store that they carry the Ultimate Omega and the

Complete Omega. When I checked the packages, they were different, with

the Ultimate Omega have higher amounts of everything. The Complete Omega

is the same as the ProEFA. Do you perhaps have the Ultimate Omega? Just

a thought! Hope this helps!

Blessings,

On Fri, 24 Sep 2004 07:16:44 -0700 (PDT) Michele Messer

<mpmesser@...> writes:

Has anyone seen a difference using Complete Omega

versus ProEfa?? The company says they are the same

but the complete omega has more omega 3's.

Thanks .

Michele

[Guest guest]

Omega-3 and Omega-6 (n-6) fatty acids constitute the two families of Essential Fatty Acids (EFAs). EFAs are considered "essential" because they are needed throughout the human life cycle, cannot be produced in the human body, and therefore must be provided through the diet.

EFAs aid in the maintenance of cell membrane fluidity and stability, development and function of brain and nerve tissue, oxygen transfer and energy production, immune functions, and conversion into compounds involved in all body functions including local hormones governing inflammatory responses.

Metabolic Pathways of Essential Fatty Acids

A look at the metabolism of and interaction between Linoleic acid (LA) and Alpha-Linolenic acid (ALA) will provide insight for the significance of balancing EFAs.

LA of the Omega-6 family is found in most plant oils (corn, safflower, canola, sunflower), nuts, seeds, and soybeans. ALA of the Omega-3 family is found only in oil from cold water marine animals (cod liver oil, sardines, mackerel, anchovies) and flax oil.

Omega-3 fatty acids from fish is a direct source of EPA and DHA, while flax seed oil yields ALA which then must be converted into EPA and DHA. The human conversion of ALA to EPA and DHA is slow, only a maximum of 15% of ALA (flax seed oil) can convert to EPA and 5%, in any at all, may convert to DHA. Although flax seed has many benefits, it is not recommended as a source of Omega-3 EPA and DHA fatty acids.

Lifestyle and health influences that can inhibit the conversion include:

a diet high in LA (Omega-6), trans-fatty acids, and saturated fats

alcohol intake

deficiency of any of the vitamin and mineral cofactors ( vitamin B3, B6, C, zinc and magnesium)

diabetes

immune dysfunction

Prostaglandin HealthEFAs are the building blocks for prostaglandins, a class of hormones that regulate numerous bodily functions, including governing cellular responses, immune function, and hormone synthesis.

Series 1 and 3 Prostaglandins (PGE-1 & PGE-3) are anti-inflammatory while Series 2 Prostaglandins (PGE-2) are pro-inflammatory. PGE-3 comes from Omega-3 essential fatty acids, PGE-1 comes from medicinal Omega-6 fatty acids and PGE-2 comes from cooking oils.PGE-1 & PGE-3 have the following effects:

Reduce inflammation

Dilate blood vessels

Reduce blood clotting

Lower harmful LDL cholesterol level

Raise beneficial HDL cholesterol level

[Guest guest]

Hi Kiki.

Hope all is well.

Regards,

Tom

----- Original Message -----

From: noclue915@...

low dose naltrexone

Sent: Tuesday, September 28, 2004 4:18 PM

Subject: Re: [low dose naltrexone] efa's

Excellent info, thanks Tom.