Oh Boy! Was Re: increasing EFA's

[Guest guest]

" Garbled...like talking with marbles in the mouth " ...that's EXACTLY how I

described ph when he started to regress off EPA. Its so odd. I'm sorry

you are going through this. Its probably equally difficult for your

daughter. Abilities there yesterday, gone today. My son got very frustrated.

Fortunately all losses seem to be regained with increased doses.

[ ] Oh Boy! Was Re: increasing EFA's

>

Watching for further " clumsiness " or lack

> of cooridination with all aspects of fine and gross motor skills,

as

> well as speech. I can say it took her a very lengthy time yesterday

> to finish a sentence-she got to the last word and stopped. She was

> either thinking of the correct word, or thinking how to motor plan

it out. I'd like to say, she was trying to remember how to motor

plan it

> out. As had once said to me, " why open another can of worms? "

>

> I have many oportunities within the next several day to watch

> closely. Home-based ABA, swimming lesson, riding lessons, OT, and

of

> course good ol' fashion floor time play with dolls, and such.

>

> If I notice the situation regressing further, I will slowly

increase

> watch and document, and let you know. The good thing is, our weekly

> activities include the above mentioned " therapies " So I have LOTS

of

> observing oppurtunities.

>

> Dawn in NJ

>

Well Well Well... Today the ABA therapist said, " I'm having a hard

time understanding her today, she sounds very garbled, almost as if

she has marbles in her mouth " she continued by saying, " it seems as

if she is regressing, she can't say my name today, nor can she answer

questions of her phone number, address, and her school (which is

something she could do for the last month, to 6weeks.)

Afterwards we had a swimming lesson. This is our 2nd lesson so far.

The instructor had said, she seems more confident then last week,

however she can't seem to get it together. She went on to say, she

has her eyes shut, mouth wide open, and her legs are all over. She

went on to say, " she seems to be more unglued this week " . Mind you

last week was far from perfect. Her arms and legs were not perfectly

coordinated. But she was able to keep her eyes open, and mouth shut.

2 hours later we had a riding lesson. Although we couldn't ride due

to impending T-storm that was brewing. However the trainer and I had

an oppurtunity to speak. She said, " 2 weeks ago she seemed a little

scattered, she was doing the skills on command, but was also a

little " inattentive " and " impulisive "

She continued by saying, " Last week that was gone- but couldn't

complete the skill or/task of pulling back on the reigns to stop the

horse. " We'll see what Saturdays lesson brings. (On Friday, she is

supposed to be in her first Lead line class)

With previous EFA increases I've always noticed a short lived

increase in impulsiveness/hyperactivity/inattentiveness. At the same

time she had surges of speech and increased coordination.

It will be interesting to see what the OT has to say tomorrow.

Dawn in NJ

[Guest guest]

Absolutely good advice to check into seizures if that is suspected,

and good thing your child is on an Omega 3/6 formula if he or she

does have epilepsy

http://www.epilepsy.com/articles/ar_1088094124.html

....but Michele I'm curious where you got the stat percentage of

10% " not responding well to EFAs " ? Perhaps I'm not understanding

and confused your point?

It 'may' be as high as 10% that don't respond to EFA

supplementation -but not responding well? No mention of 10% not

responding well to the hundreds of children that used it here and

you'd think that would be something to mention even if there were

" not responding well " results in 2%

http://www.durhamtrial.org/

Not being able to take EFAs has meant rare and typically life

threatening metabolic disorders....and even then those are being

treated with pure DHA

http://www.martinezfoundation.org/

Tanner's SLP Dr. Jonas for example has a patient right now with

Leigh's Disease which is " a rare inherited neurometabolic disorder "

that is degenerative.

http://www.ninds.nih.gov/disorders/leighsdisease/leighsdisease.htm

The child isn't allowed to take fish oils (I told her about Dr.

ez's work to share with these parents) -but was allowed to

take Bolthouse Farms " Green Goodness " and apparently she is

improving! Now that's interesting because she is supposed to be

regressing. She said the ingredients of Green Goodness may help with

DNA. Anyone else use this stuff? I've been buying Green Goodness

for awhile now because I drink it, but no way can I get my family to

drink it...but just figured out I can trick them by adding it to

fruit smoothies! (and add Pom Wondeful too!)

GG's made of polyphenol and phytonutrient-rich plant extracts, and contains

spirulina, open cell chlorella, brocolli, green tea, spinach, barley, wheat

grass, blue green algae, and an array of other healthy ingredients.

http://www.bolthouse.com/html/cs_green_juice_n.html

To find it at a " store near you " http://www.bolthouse.com/store_locator.html

But back to EFAs...When we were interviewed for the PBS documentary

on Omega 3s the directors said that they had been searching all over

for any negative...and couldn't find any. And if anyone will find

the negative the media will and possibly before scientists do. This

is because EFAs are so " hot " right now -any down side would be a

top news feature especially because it's used in infant formula all

over the world!

But talk about a bit creepy EFA news...genetically altered fish oils

in foods and all...now that I bet can lead to people actually not

responding 'well " to EFAs!

Fishy Food

http://www.firstscience.com/site/editor/0147_ramblings_13072006.asp

But as always -don't believe everything you read especially if you

have a child prone to seizures -including what I write here -go

check it out yourself from those who know and from reputable sources

=====

[Guest guest]

In a message dated 7/15/2006 11:07:08 AM Eastern Daylight Time,

Jerzmomof4@... writes:

Thanks for your input. I have a few questions for you?

When your son has his seizures, are they obvious? If not, what were

your clues that he was having them? I know some people have said

their children get that " zoned out " look. I know she has done that,

but ALL my kids have at done that at some point or another.

Well, this is a really good question, because as it turns out my son has

been having seizures since he was an infant, BUT they were not diagnosed until

he was 5 years old, now, I dont want to scare you BUT, he was in early

intervention since he was 2years 2mos, so he's had many many many ST's, OT's,

PT's,

Neuro's, Dev Ped's, ENT's, Regular Ped's, Visiting Nurses, many many many

professionals, but believe it or not, NO ONE PICKED UP THE SEIZURES, when he

was

five I started to see this eye flutter thing, and immediately took him to a

well known Epileptologist on a Monday, and guess what he said? I am going to

quote this too, because I just cant resist " Do not make any plans, he is

having them right now (and all he was doing was blinking, and staring off

slightly)you are going in the hospital for a video EEG on Thursday.We were in

the

hospital until the following Tuesday, and it turns out he was having over 200+

absence seizures per day !!!! Can you freaking believe it !! True Story....I

cant express enough to you, my disappointment, with the medical establishment

at that point in my life....but the seizures truly were not that

obvious...his seizures presented as some frustration and inattention, blinking,

and an

occasional head drop that looked purposeful, from a very early age, and

Epilepsy was not hereditary on mine or my husbands side, so NO ONE EVER THOUGHT

TO

SUGGEST SEIZURES OR AN EEG FOR THAT MATTER !! Can you imagine? He is doing

pretty good now, the seizures seem to be controlled, but the spiking is far

from controlled and weve been through 4 meds to date, and still working on it,

but he is still having a few seizures that only last anywhere from 4-10

seconds each, so its an improvement, he has his good days and bad ! ...as it

turns

out the neuro believes that part of the apraxia is due to the seizures, and

we are just waiting to see....he has made quite a bit of improvment in his

speech, gross motor and fine motor abilities since starting the meds. I am glad

I went with my gut when I saw the strange eye flutters...because this poor

child went on all of that time with CONSTANT INTERRUPTION, its no wonder the

poor kid was so delayed. Can you imagine trying to read a book and someone

turning the light out on you 200+ times per day !!! Fortunately, according to

thorough testing he is cognitively intact, at least that wasnt affected, he is

truly a genius, stuck in a body that does not work! He currently is receiving

all of the therapies ST, OT, PT because due to the seizures being

undiagnosed for such a long period of time, his Speech, Fine and Gross Motor

have been

severely affected, but the good news is, that until the end of the school

year, he was being pulled out with the Enrichment (Gifted/Talented) Teacher

once

a week. So we are very very lucky. He is truly an angel. Hope this helps.

I see you are in NJ. If you want to talk more email me offlist, and I can

give you a call.

Michele