More First emails around 3/99 -discovery of Efalex!!!!

[Guest guest]

Tanner was diagnosed March 9th -I bought and started Efalex about a

week or so later. At that point I had not seen Dr. Agin and the

pediatricians I did take him to at the practice we went to were not

concerned about him not talking -and did not know what apraxia was to

point it out to me, or what it was when I told them that's what the

SLP said he had. And to make it more confusing and frustrating for

us - Tanner's SLP at the time didn't know much either about apraxia

except it was rare and " it depends " if he'll ever talk...so who would

I ask about using fish oil? This is why I laugh when I read so many

questions now -at least there are some answers online now -something -

back then my source for info on EFAs was this one site (amazingly

it's still there!)

http://www.altonweb.com/cs/downsyndrome/epofacts.html That was it.

ProEFA was not around then and those few of us with apraxic children

that used EFAs that worked used the Efalex for the most part. At

that time Efalex was made by Efamol -Efalex is now owned by Nutricia

(who also owns GNC) so the information in the following old emails is

in some cases no longer valid -like order phone numbers.

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Subject: Re: [APRAX] Help for Tanner!

Date: Wed, 17 Mar 1999 00:28:56 -0500

From: & Glenn <shop-in-service@...>

St

References: 1 , 2 , 3 , 4

Hi ,

I just purchased the Efalex at a Rite Aid in NYC today. It was with

the vitamins, and it says it promotes healthy brain and eye

function. I can let you know if we see a difference. Right now,

Tanner is not speaking, except for basic sounds and " Mama " Things

like that. I'll keep you posted though if he starts reciting War and

Peace next week!

Yeah, it is to bad you live so far. There is not that many of us out

there.

Mom to Dakota 4.8 and Tanner 2.9 (apraxia)

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There are some interesting posts that went out on the list that I

have that are not in my sent box. For now I'm just posting my

personal emails. The one for example is a week after we start Efalex

and Tanner's going into corners and whispering babble sounds to

himself and I'm asking the group if this is normal for an apraxic

child -he never had done that before. At that time I did not relate

the " whisper babble " to the addition of EFAs. I know now that was

one of the first signs. Then there was my " lellow " post -Tanner's

first real word!! When I wrote my part for The LCP Solution book I

said 3 weeks till " lellow " but in going over old emails -it was

closer to 2 weeks!!! Prior to this as you read in the last first

emails -nothing after 4 (or 5) months of private one on one therapy.

Amazing...In the previous email I was as a joke saying " I'll keep you

posted though if he starts reciting War and Peace next week! " It's

not War and Peace -but you guys know as parents -the following is

music to our ears!! The only change is the addition of Efalex, an

Omega 3 and Omega 6 EFA. The following is just two of the emails I

sent out...We are now just about a few days from being told we are talking

about this too much and that it's OFF TOPIC and to find another place to talk

about it. (check the date the

Speech Diet list started...Apr 15, 1999 -took some time to find the place -and I

never got into the new list because I wanted to talk about it where I was -I

never thought it was off topic -how could it be?)

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Subject: Re: EFA

Date: Sat, 27 Mar 1999 14:12:58 -0500

From: & Glenn <shop-in-service@...>

" APRAXIA-KIDS@... " <APRAXIA-KIDS@...>

References: 1

Hi. Everyone,

Since asked us, I thought other parents would want to hear this

answer as well. Do you know what EFA stands for? Jeff just

mentioned it on his post to the list. Is it Eflax?...

Efalex is spelled EFALEX, but I don't know why Jeff would call it EFA.

I think it's the same thing though. Anyway, we have noticed

improvements in Tanner-he tries to say I LOVE YOU, (sounds like " ah,

ayf, ooo' " ) and tries to imitate us now, and it has only been about 2

weeks. Since he wasn't doing anything like that before, I would say

we have definitely noticed improvements already! The only thing that

isn't good is that Tanner doesn't like the taste of it. It smells

like lemon-I guess I should try it. Sometimes when I mix it in his

drinks, he spills them out! By the way, we bought Efalex at a Rite

Aid in NYC and it was also $18. (We agree it's worth it too!)

How do other parents give the Efalex to their children?

Mom to Dakota 4.8 and Tanner 2.9 (pure apraxia)

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Subject: Efalex Q & A

Date: Wed, 31 Mar 1999 19:18:36 -0500

From: & Glenn <shop-in-service@...>

" APRAXIA-KIDS@... " <APRAXIA-KIDS@...>

Hi all,

Bobbie had asked about where to find Efalex, as well as if she should

ask her doctor first. Here is our answer. When we went into the

Rite Aid to buy the Efalex a person in the pharmacy told us that they

didn't carry it either! We looked anyway, and then got the help of a

real nice pharmacist, who I think was interested in finding it

herself after I told her what we had heard about it. She found it in

the vitamin/health food isle of the store.

It was $18, but we've heard Walmart carries it for $14.95. You can

call back your Walmart and ask if they can get it in from another

store. Or ask to speak to someone from their vitamin/health food

section.

It's not a drug. It's similar to giving your child flax seed oil, it

has essential fatty acids in it. I believe the Efalex contains

evening primrose oil, but I would have to check the bottle. Also,

you can call Efomol's toll free number 888.332. 6651 and ask them.

You can check with your doctor, but there is a great chance that

he/she doesn't know much about it in relationship to apraxia. Our

speech therapist, who is excellent, and who is with the largest

hospital system in NJ, had never even heard of Efalex.

Glenn and I decided to take a leap of faith by following our own

research. In this case, for us, with great results. Just one

question for the list. Has the results from other EFA products, like

flax seed oil been as incredible as Tanner's results from the Efalex?

Best,

and Glenn Parents to Dakota 4.8 and Tanner 2.9(apraxia

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Private corrospondance about my excited post to the list that I

called " lellow!!!! " where Tanner said lellow for the first time!

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Subject: Re: lellow!!!!

Date: Wed, 31 Mar 1999 23:32:13 -0500

From: & Glenn <shop-in-service@...>

Phil & <PSHa

References: 1

Remember in the movie Bambi when he is first learning to talk and he

learns a word, than calls everything that one word until he is

corrected-That is Tanner now! He's walking around for almost 24

hours now saying lellow over and over. But, he is trying so hard!

When you say a new word, he tries to say it too! Efalex really works

!

Hey, how are the little ones feeling today? Are we still on for next

Wednesday? Someone named who lives close to me from the other

apraxia network (the one from Hawaii) wants to get together too. I

told her about next Wednesday. I was wondering if maybe my house

would be good, if I'm in the middle. Am I? Where does Debi live

again? It doesn't matter though, Dakota doesn't have school next

week.

Thanks for the cheer! I'm still in shock at how well this stuff is

working. People on this list probably think I work for Enfomal or

something! LOL

Talk to you later!

Phil & wrote:

Wow Tanner!!!!!!!!!!! That's FANTASTIC!!!!!!!!!!!! Guess I'll have

to run out and buy this stuff!!!!!!! I am so happy for you, &

Glenn, and for you Tanner!!!! This just made my day!!!!!!!!!

Thanks for sharing.... go Tanner!!!!!!!!!

YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Then I start to question the fevers -and Tanner's loss of language

from them. Soon all of you will be able to view online the video of

Tanner that will be on PBS this Fall from after the fevers. I have

before the fevers to show that there is a visable neurological change

in Tanner from the fevers in addition to loss of language that no

professional in his early years noticed. Here is email

corrospondance with an SLP that emailed me privately -we are now less

than one month from diagnosis and I am online at neurology websites

up to the wee hours every day (can you tell from the following?!)

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Subject: Re: [APRAX] Aphasia vs. Apraxia

Date: Thu, 01 Apr 1999 00:06:28 -0500

From: & Glenn <shop-in-service@...>

Ru

References: 1 , 2

Hi Ruth,

Actually your response is the only one we got on this topic! Thank

you so much for taking the time to further educate us on the

apraxia/aphasia topic. I don't know if you read our post about

Tanner, in that he was speaking more at 10 months (Ma Ma, Da Da, and

constant babbling) than he did at 2 and a half. (Quiet, only word was

Ma, or mmmmm, never again said Da Da until he was 2.8)

This was noticed by everyone because not only did his speech stop,

but he lost most of his facial expressions. He stopped smiling, and

rarely moved any part of his face, except his eyes. Our families and

friends thought he looked sad, and he did. Everyone would try to

make him smile. He would smile so rarely that it's hard to recall

his face at that time with a smile. Every time we would take

pictures, photographers, family, no one could make him smile...But

we have pictures of him looking like the Gerber Baby smiling before a

year old. (He smiles now too, thank God!) Have you ever heard of

something like this?

This whole thing is so new for us and it is scary that so many people

don't know what it is! If Tanner did acquire the apraxia, is it

possible that like aphasia it could be from damage to the brain?

Other than the very high fevers he had, he never had any head

injuries. Has anyone ever done studies on fevers in infants/and

apraxia? Being that Tanner is so young still, we are hoping that we

have that " window " until the age of four, since the brain is still

growing to do what ever we can to help him to overcome this

challenge. He really has come so far already, especially within the

past 2 weeks. (Since the Efalex-maybe a coincidence, but we'll keep

giving that to him just in case!)

Any information will of course be greatly appreciated!

Thanks so much for helping!

and Glenn Parents of Dakota 4.8 and Tanner 2.9 (apraxia)

Ruth... wrote:

> Hi & Glenn,

> I haven't seen postings and wondered if you had gotten responses on

this note

> > Hi I thought the definition of Apraxia was oral skills delay only

and that you

> > do not have to have delays in receptive skills or speech that was

lost and then came back. i think this new definition would change

alot of peoples diagnosis.

> >

> > Their definition of aphasia is, " It is a disorder of communication

> > resulting from various kinds of damage to the brain which impairs

a

> > person's ability to speak, comprehend speech and possibly to read

and

> > write. "

> What that definition of aphasia is lacking is specifying that the

impaired

> ability to speak is due to disruption in language areas of the

brain as

> opposed to a motor problem. Some adults with aphasia also have

apraxia

> and/or dysarthria, just as we see in children. Aphasias (there are

several

> subvariants) are generally considered language-based disorders,

while

> apraxia and dysarthria are motor-based disorders.

> What they say about treatment of children with " developmental

language

> delay " , " dysphasia " , etc. is true---children's " aphasia " is usually

not an

> acquired problem, but one of slow or disrupted development of

language,

> while an adult has experienced competence in language use and

therefore has

> a whole different background to work with in terms of prior

knowledge that

> children do not have.

>

> hope this helps some

>

> ru... (slp)

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Change the definition? Now there was a thought considering back then

the adult neurology sites were more relatable to describe what my son

had than the pediatric sites on apraxia I read. At this point

Tanner's still not quite three and as amazed as I am by his progress -

somewhere in the back of my mind wants to believe he'll " just start

talking at three like Aunt Betty " in spite of all the other signs.

And about EFAs -why isn't people taking this seriouslly?!! My family

is amazed -his therapists are amazed. Nobody else has a clue what

I'm talking about.

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

Subject: Efalex update

Date: Mon, 05 Apr 1999 00:10:09 -0400

From: & Glenn <shop-in-service@...>

" APRAXIA-KIDS@... " <APRAXIA-KIDS@...>

Hi All and Happy Holidays!

Many of you may have read that Tanner, who is 2.9 years old and has

verbal apraxia, has been taking the liquid Efalex for the past 2 and a

half weeks. Other than an expressive language delay, Tanner has no

other issues. A month ago Tanner was evaluated twice to have the

expressive language ability of a 12 month old both by his therapist,

and Early Intervention, who just accepted him in.

Could there be a deficiency in children with apraxia? In layman's

terms, could Efalex to an apraxic child be similar to Vitamin C to

someone with Scurvy? Of course there may not be such a thing as a

" miracle " pill, but we are so convinced that the changes are from the

Efalex, that Glenn and I don't want to try the Flax Seed Oil just yet,

even though we've heard from so many of you how wonderful it is.

Tanner has been in speech therapy twice a week for the past 5 months,

and both Glenn and I work with him consistently at home. However,

within the past 2 weeks we have seen such dramatic changes that we

both believe it to be as a result of the Efalex. We don't know if

anyone else experienced the changes as soon as we did with Tanner.

Within 2 weeks he attempted to say I love you, " I, ahh, ooo " (Before

then, most of the time Tanner would say, " mmmm " in the right tones

and point, he didn't attempt speech even with prompting. This is a

child that was saying little more than " Ma Ma " three weeks ago, and

wasn't even able to put the sound " ch " together with the

sound " oo " He wasn't even saying " Da Da " !) The other day, Tanner

pointed to the color yellow without any prompting and

said, " lellow " . Tanner is now saying quite a few more words, and he

is being consistent with what words he learns! He's trying to talk

all the time now, something he wasn't doing at all before. As a

matter of fact, before 3 weeks ago most of the time if you tried to

get Tanner to say a word, he would stamp his foot and say, " mmm " in

the tone of NO! Now, he loves pointing to, and saying colors.

(Purple! Blue! etc.) His therapist is thrilled with his progress in

the past week, it's really been a remarkable improvement! Coincidence?

Maybe, but we are hoping to see more improvements just as rapidly.

(Putting 2 words together, etc.)Right now, Tanner still is unable to

lift his tongue from the bottom of his mouth except by accident. One

thing we try is putting peanut butter on the on the outside of his

mouth on top of his lip and make a game of it that he has to lick it

off. He tries to use his bottom lip to push his tongue up, but he

still can't raise it enough to lick it off. We are curious to see if

that changes soon too. It's only been two and a half weeks for us,

but we have not seen any negative side effects from giving Tanner the

Efalex other than he still hates the taste. We have found cooking it

in his eggs or letting it soak into his cereal or pancakes is the

only way we can give it to him without any problems.

Does anyone know about cooking with Efalex? Any suggestion on how to

have him swallow the pills if we buy them next? Just one other note

for those of you who asked how to respond to people that say, " Oh,

he'll be talking soon " (We ran into that lots this weekend with the

Holiday, especially because Tanner is starting to " talk! " ) Maybe

it's us, but Glenn and I never get mad at people for saying this. We

feel it's coming from love, not maliciousness. We usually say, " We

really hope that happens, but we are doing whatever therapy we can

just in case. " They usually then say, " Oh, of course...So what is

this called again that he has? " We then give them a brief

description of what Apraxia is and how well Tanner is doing with

therapy.

Anyway, for anyone who cares to know, we give Efalex two thumbs up.

We'll keep you updated with what happens in the weeks ahead!

and Glenn, Parents to Dakota, 4.8 and Tanner 2.9 (apraxia)

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Yet another sum up of just where he was and where he is in...one to

three weeks -and of course this isn't all the emails.

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

Subject: Re: [APRAX] efalex

Date: Fri, 09 Apr 1999 21:58:50 -0400

From: & Glenn <shop-in-service@...>

" APRAXIA-KIDS@... " <APRAXIA-KIDS@...>

References: 1

wrote:

> Lynn,

> " I have tried the Efalex with my son (21 months and apraxic)

for

> three days now. ... We're praying that this will help him as it has

> helped

> others! Good luck and let me know if you find something good to

hide it

> in:) "

We found a great way to give the liquid Efalex to our son Tanner. We

put a teaspoon or so, not to much, on his dry cereal, wait for it to

soak in a bit, then add the milk. We do this with other foods as

well, so far, so great! If you add the liquid Efalex to liquids, our

experience is that it just floats on the top since it's an oil. So

it doesn't " mix " in. With the food it does! Someone privately told

us that disguising the Efalex in " liquid malt " is wonderful, but we

haven't found it yet. We just found out it's sold in health food

stores.

By the way, Tanner, the one evaluated with a " 12 " month old

vocabulary about 3 weeks ago (before Efalex) by Early Intervention,

just tried to say a three word sentence the other day!! He can say

with prompting " Ah, Ahn (he does the sign for want), more " That of

course is " I want more " This is in addition to all the new words he

has added to his vocabulary. He tries to say everything now,

something he didn't do before. We are thrilled to say the least!

Maybe this is greedy, but we just wish they would do the studies on

apraxia in children already, and develop a more " child friendly "

way of dispensing this product!

and Glenn, Parents to Dakota 4.9 and Tanner 2.10 (apraxia)

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We are now up to about one month after diagnosis and just about 2 or

three weeks on EFAs...I was told I was talking about it too much and

that this was off topic? A possible cure is how I saw it -how is

that off topic? I wanted to scream it from the roof tops for

everyone to try it and to know about this. So many more children

would have been helped so much sooner if people took this seriouslly

back then... So many more need to know even today. Do you guys want

to see more or is this enough " first " emails?

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