Pro-EFA

[Guest guest]

I am a lurker for about 3 months and started my daughter on Pro-EFA a week ago.

I was curious about those of you who DID see results from them, how long did it

take?

Any input whould be appreciated!

Thanks, Sara in GA

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[Guest guest]

Karin,

TriCare was paying for speech after age 3 but has stopped. The new rule is

no speech after age 3 unless there is a diagnosis that " they " feel qualifies

for speech therapy. They want you to take your child to the school district at

age three and have them evaluated. Our school here said there was a HUGE leap

suddenly of kids coming in that had TriCare. Technically Phoebe is not

suposed to be getting speech but we have fought with them and they have agreed

to

one day a week. They have turned us down for 2 days a week.

We were in Pensacola for 8 months. My DH is also Navy. My biggest advice is

go out and get some surge protectors. The weather is wacky there! We had our

house hit several times by lightening and it would fry the tv, dishwasher etc.

Finally a repair man clued us into the surge protector. At least that will

save the expensive stuff like tv's.

Good luck!

Kathy

[Guest guest]

>Phoebe went from having a hand full of words we could pretty much

>make out. She was saying one word at a time. Now she is saying 3 word

>sentences. However we really were expecting her to take and if it worked

>for her to

>just start talking and it to be clear.

This happened to my son. His verbal attempts increased, but the more words

he suddenly had the more garbled all the motor planning was. In that sense

my dad in particular was claiming fish oil regressed him initially. Then

he realized, no, he was talking more, but less clear. We made a list of

all his words and then in speech and at home we started working on taking

the words he had and increasing the function. His vocabulary (expressive)

has not increased much over the last 6 months, but his clarity on those

~200 words he has has greatly improved. The only new words we've given him

have been have been carrier phrases such as " I want " and " I need " and " Come

see. " Things that he can add to to help get his ideas across

better. While this happened his receptive (he also has delays, but not as

great as expressive) has really improved. Now we're at the point again

where we're adding more words since the consistency of his current

vocabulary has really improved. He still makes a ton of errors, but now

strangers can understand a lot more of what he says, and familiar listeners

get maybe 80%! On many words he's gotten them down so the errors are

just phonological (r's are w's, final consonant deletion and subbing g for

d - " fwock=frog, soga=soda, etc.) He's not switching vowels in famliar

words as much anymore either! Hat is now almost always hat and no

longer sometimes hot and sometimes het!

I just thought I'd share what has helped with us to get him on track after

an initial surge in language after starting ProEFA. Unfortunately after

that first surge proEFA doesn't seem to have continued the surge. We

haven't stopped it, in fact his slp and pediatrician thought it was a great

idea! But he's definitely hit a plateau.

Miche

[Guest guest]

I don't think the omega-3 is an apraxia cure. What you are describing is

still classic for apraxic children, and the longer the sentence the more

distorted the words become. We are seeing the same sort of progress (but a

few months of fish oil ahead). But a good ST can work with the

mispronunciations...its the silence that is so difficult to work with. The

omegas seem to jump-start their attempts at communication with words, while

making things a little more clear. ph couldn't pucker or stick his

tongue out prior to omega-3. He started to give real kisses a week into it.

I'm sure the improved movement of tongue and lips helped. What you are

describing is still great progress. You must be thrilled. For the 6 months

prior to starting fish oil we saw no progress in this area, and no attempts

to EVER repeat sounds, no less words. Where we are now, many of the 2 word

phrases are intelligible to people even outside our home (although no one

would be able to understand his " conversations " ). So I expect you will

continue to see progress. Our last big leap (ie the move from 2 word to 4

and 5 word sentences) came when we added EPA. Something to think about in

the next few weeks. -

[ ] Re: Pro-EFA

We noticed a difference after 1 week. We told the speech therapist and the

developmental pediatrician. We were told no we didn't..lol It's been about 3

weeks now. Phoebe went from having a hand full of words we could pretty much

make out. She was saying one word at a time. Now she is saying 3 word

sentences. However we really were expecting her to take and if it worked

for her to

just start talking and it to be clear. With Phoebe she instead is talking

more

but the words are not real clear. However she went from being able to sign

water, milk and soda pop and eat to being able now to say " I ull " (I'm

full),

" me no " (I don't want that or I don't like that), " aw ight mom " (alright

mom).

My husband before could not understand anything she said. She would not go

to him for anything. I could make out what she wanted by her ton, facial

expression etc. Now he after a couple attempts can make out what she is

saying.

Our speech therapist after Phoebe went in one day and asked the therapist

her

first question, a couple times told her she had something at home, used

some

three word sentences, she finally admitted " OMG there is a HUGE leap in her

speech! " Still doesn't want to admit it's the ProEFA though. The

pediatrician

said her study only showed that the fish oil would help with attention. She

now however is going to recommend it to some of her patients after seeing

Phoebe.

Phoebe does get speech therapy once a week with a private therapist. We

have

been denied two days by our insurance (TriCare). She also has SID and they

are refusing any sort of treatment for that. She gets 30 minutes a week at a

special ed preschool that she attends for 3 hours a day. She went one year

in

therapy with basically no advancement until she started the PROEFA.

Hope this helps.

Kathy 38

DH Rob 35

DS 17

DS Zackary 11

DD Abigail 5

DD Phoebe 3

DD 2

Starting paperchase for Saoirse!

>

> I am a lurker for about 3 months and started my daughter on Pro-EFA a week

ago. I was curious about those of you who DID see results from them, how

long did it take?

>

> Any input whould be appreciated!

>

> Thanks, Sara in GA

[Guest guest]

Lucas has been on it a week and within a couple of days we noticed a

difference. But he also started intensive (4 days instead of 1) ST

the week before he started ProEFA, so who knows!

What we notice is that he has a lot more variety in his

vocalizations, and has said a *few* more words....or at least I can

recognize a few more words! (bu-bu for booger instead of uu-uu)

>

> I am a lurker for about 3 months and started my daughter on Pro-

EFA a week ago. I was curious about those of you who DID see results

from them, how long did it take?

>

> Any input whould be appreciated!

>

> Thanks, Sara in GA

>

>

> ---------------------------------

> Brings words and photos together (easily) with

> PhotoMail - it's free and works with .

>

>

[Guest guest]

Another thought. Although it is difficult to get insurance to cover speech

therapy, getting OT covered for at least 1X a week is not so difficult.

Probably not for SID, but does your child have hypotonia as well? Since many

of the apraxia kids have both SID and low tone, you may want to target that

diagnosis for therapy. My son's low tone was not obvious to his pediatrician

or to me (except when he almost fell off my husbands shoulders at 13 months

when first put up there do to the inability to support his weight like

that - made me realize he had weakness at his trunk - common in apraxia -

and why all his motor skills were delayed). A developmental pediatrician

should be able to make the diagnosis, but a referral from your pediatrician

for evaluation for low tone will at least get you a covered OT evaluation.

(Out-of-pocket an OT evaluation by someone with experience is $1200 -

without any therapy). We went the insurance route. -

[Guest guest]

You guys are probably getting tired of hearing me suggest this, but if

you've reached a plateau and want to see another surge, try twice a day

dosing, or go up to 3 x a day if you are at twice a day. Also, adding

pro-EPA really does make a difference too - at least if you have a kiddo

that is responding. It really is pretty safe and the worst thing that

happens is nothing...and you go back to a lower dose. But for those who saw

a surge in the beginning - omegas are doing " something " - and your kid is a

responder. I'm hoping that our " experimenting " in attempts to find the best

dosing and dose with our son will also help some others out there with

apraxic kids who respond to omega-3. And if you see an improvement - let me

know! At this point I don't know how much higher we can go...since we are

at 3 time a day already. I cringe at the thought of still being at only 3

word approximations at this point if I hadn't read 's book, knowing that

the potential to improve this condition - at least for my boy, exists with a

simple dietary supplement. -

[Guest guest]

Hi ,

I have to disagree. My son has been on 2 capsules a day for years. At

1 point I tried the Pro-epa and it was a disaster. Very moody and some

weird behaviours emerged. I stopped and tried again in 3 months same

thing. Dr. AGin indicated that he couldn't handle the high amounts of

EPA which are huge compared to what is in Pro-efa. I am not the only

one who has seen this.

Though I do think Pro-efa helped my son it isn't a cure and it isn't

magic. I do think too much of anything isn't good and we should all

proceed with caution with any supplements.

>

> You guys are probably getting tired of hearing me suggest this, but

if

> you've reached a plateau and want to see another surge, try twice a

day

> dosing, or go up to 3 x a day if you are at twice a day. Also, adding

> pro-EPA really does make a difference too - at least if you have a

kiddo

> that is responding. It really is pretty safe and the worst thing that

> happens is nothing...and you go back to a lower dose.

[Guest guest]

I totally agree with you. At the same time, I can only report what I am

seeing. Because the potential to make him " even better " seems to be there, I

don't think we've found the perfect dose, schedule or mixture.

Its interesting that you mention the moodiness. ph is clearly more

" moody " and whinier than he had been before we added pro-EPA. But stepping

back what we are seeing is such typical 2.5 year old behaviour - his

behaviour was actually " unusual " for a 2 year old before, when he was

angelic and never exerted his own opinion and wishes...making him SUCH an

easy baby. He's not so " easy " anymore, but acting like a normal 2 year old.

I do suspect, though, that the EPA is causing some of this. Just like when

we started on cod liver oil - obsessive/compulsive behaviour, lining things

up, cleaning constantly- emerged and the SID (which was mild originally) got

exaggerated to such an extent that we couldn't touch him/pick him up or

tickle/kiss him without crying. We stopped the CLO when the SID got so bad -

and the SID and obsessive/compulsive behavior quickly disappeared, but then

witnessed a complete regression of all the progress he made in speech and

coordination at the same time. When we started the pro-EFA, fortunately the

obsessive stuff hasn't returned, but a mild increase in SID appeared about a

week after we went to twice a day. It hasn't gotten much worse, and after

working with OT, brushing/joint compression etc - its actually almost

completely gone again.

I just talked to my husband last night about the moody/crankiness in our

child who now - still clumbsy, is not falling down several times an hour, is

able to climb (more safely) play structures at the playground (new this

month), and is talking up a storm and is actually starting to look more and

more like a normal 2 year old. Its all relative. We decided that - assuming

the change in disposition is a result of EPA and not normal 2 year old,

we'll take this in exchange. I'll take a more oppositional 2 year old who

will tell me why he's complaining - rather than the silent, frustrated

grunter.

What does this all mean? To me it means that obsessive compulsive behavior

and SID can be induced or unmasked by modification in fatty acids. It means

that apraxia issues - ability to pucker, tongue movement, etc - are also

effected by alterations in fatty acids. It also means that there are means

to help at least some of these kids through supplementation - and we will

only be able to improve on it when good research reveals why they work and

what the underlying dysregulation is. I don't have the answer. We've been

able to push improvements in speech and coordination in my son through

increased doses. At this point, for us, the benefits are so overwhelming

(though not a cure - as I said in a previous post as well), that we are

willing to take the behavior changes - that may or may not be at all

related.

Everyone's child is different. All we can do is get the information out

there. Those not seeing benefit, or worse seeing adverse effects should

stop. But those whose children are getting better will be forever grateful

that this information was circulated, that took the time to write her

book, and that this website exists. -

[ ] Re: Pro-EFA

Hi ,

I have to disagree. My son has been on 2 capsules a day for years. At

1 point I tried the Pro-epa and it was a disaster. Very moody and some

weird behaviours emerged. I stopped and tried again in 3 months same

thing. Dr. AGin indicated that he couldn't handle the high amounts of

EPA which are huge compared to what is in Pro-efa. I am not the only

one who has seen this.

Though I do think Pro-efa helped my son it isn't a cure and it isn't

magic. I do think too much of anything isn't good and we should all

proceed with caution with any supplements.

>

> You guys are probably getting tired of hearing me suggest this, but

if

> you've reached a plateau and want to see another surge, try twice a

day

> dosing, or go up to 3 x a day if you are at twice a day. Also, adding

> pro-EPA really does make a difference too - at least if you have a

kiddo

> that is responding. It really is pretty safe and the worst thing that

> happens is nothing...and you go back to a lower dose.

[Guest guest]

Just wanted to add my two cents in here. We saw very dramatic

results with our 2 year old when we started PRO-EFA (initally

started Cod liver oil then switched to Pro-Efa). It wasn't

overnight, but she just began steadily making progress after 8

MONTHS of no progress whatsoever. She began puckering, rounding

lips, blowing out of her mouth (as opposed to her nose), the " o "

sound came out (because of puckered lips) and her attempts at

communication and babbling skyrocketed.

Interestingly, for those who remember, she also began having

steadily worsening diahrrea that just would not go away. After

taking her off the fish oil and fiddling slightly with her diet (she

is gluten and casein free, so we were trying to see if something

else was causing it) her bowels did normalize. Her BEHAVIOR on the

other hand, totally went downhill. Within a week we were seeing

meltdown tantrums like never before, kicking, angry, flopping on the

ground, trying to hit mommy, etc. Stuff we had never seen before in

her. Her activity level has also gone up so much that she seems

almost ADHD. She also has started " getting stuck " (our word for the

very mild stimming she occasionally did, ) on certain things again.

Now, she is starting to potty train (her idea, we aren't pushing it)

and is frustrated because she hasn't been having much success. AND,

like mentioned in her last post, our daughter never went

through the typical tantrumy two's asserting her opinion stage

(which she is majorly doing now and is normal to an extent). So, my

point is, some negative behavior is normal, but that still doesn't

explain all of it and so suddenly after stopping the Pro-EFA.

Since stopping the Pro-EFA she is still babbling and talking up a

storm, but her articulation seems to not be so clear.

So, now that her bowels have stabilized, we decided to add back in

1/2 capsule (we put in apple sauce) a day and she has been

tolerating that well. (no tummy trouble so far). We are hoping to

add another 1/2 at night to get back to our previous level of 1 per

day. We will keep you all posted on what happens with that. It is

interesting that we have a friend who's son is NOT apraxic but has

SID and food sensitivities that cause diahrrea like Izabella and his

mother has told me his stomach cannot tolerate Omega 3's or many

other oils and oily foods. So, we are REALLY hoping that this 1/2

dosing idea will be the key for us and that the Omega 3's will help

Izabella's hyperactivity and her speech.

> >

> > You guys are probably getting tired of hearing me suggest this,

but

> if

> > you've reached a plateau and want to see another surge, try

twice a

> day

> > dosing, or go up to 3 x a day if you are at twice a day. Also,

adding

> > pro-EPA really does make a difference too - at least if you have

a

> kiddo

> > that is responding. It really is pretty safe and the worst thing

that

> > happens is nothing...and you go back to a lower dose.

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi: I don't post much but I have a question. I have been giving my

daughter one capsule of the proefa. She is active. I am grateful that

her speech has begun to emerge but so has her activity level. Is

this possible? She will be four in May?

She has been taking it since October. As an experiment.

I stopped giving it to her and she seems more calm. I don't want her

to regress any further t what do I do?

jackie