Re: New Fish Oil Combination for Jonah, Finally a Huge Surge. *UPDATE*

[Guest guest]

What fantastic news for your family. Just some good old fashioned " never give

up " working miracles for sweet Jonah.

Kudos to you and your wife. Congrats on the discovery and thanks for sharing!

Sharon

>

>

> HI Everyone, after a year and a half of adjusting our son Jonah's

> diet, supplements and fish oils, our son Jonah who will be 4 in November

> finally experienced a massive surge in speech. By surge I mean a

> plethora of words just coming out of nowhere. In addition 4-5+ words

> phrases like, " daddy want to go outside, " or " daddy can I

> have num nums. " He said to my wife, " oh no, daddy's gone.

> Where did he go? " There are so many more and each one is like

> beautiful music. On the scale of clarity from 1 to 10, the clarity range

> is mostly 6-7 range. If he speaks slowly more like 7-8 and more often

> full 9 to 10's. His recent success is just mind blowing to my wife

> and I and just hearing our son speak has so often brought us to tears.

> His CAS and dyspraxia are still very much there as evident in his motor

> planning issues but for me this success is nothing short of a miracle

> for us. My wife and I have always had hope for our beautiful boy though

> the fear of our son never speaking always loomed in the distance.

>

> I wanted to make sure I came back here to post this success because so

> many people with their touching personal experiences, great advice, and

> words of hope were a shining light to my wife and me when the SLP

> diagnosed him two years ago and we didn't know which direction to

> turn having never heard of CAS. Since that day I have been researching

> endlessly like so many others here in an effort to help my son in any

> way possible. Jonah has been in speech therapy and OT ever since and it

> has been invaluable. My wife's dedication to continuing what he

> learns in speech and integrating it into our home has given him the

> verbal building blocks which he is now using today. I marvel at her

> dedication and she is an amazing mom, one that any child would be

> blessed to have.

>

> Our son was diagnosed PDD NOS with CAS and Dyspraxia and his journey is

> still long but for the first time several of the locks that have

> hindered him have been blasted open with a sledgehammer. Our son is

> there. It's amazing to finally see him say what he has been thinking

> all this time. There are still so many more locks to unlock but together

> we'll tackle those too. I will be writing more soon with all the

> therapy we have been using to get him to this point but I want to share

> with everyone now the combination of fish oils that worked for us so for

> anyone else in this group who hasn't seen a surge with their

> children on fish oils can perhaps try this combination too.

>

> The fish oil protocol that was suggested by was the original

> combination we used. Though we never experienced a surge in speech that

> so many wrote about it definitely seemed to help him in relation to his

> behavior. He seemed less anxious and calmer so I knew it was making a

> difference. We made slight adjustments to his Nordic Natural 3 6 9's

> every 3 to 4 weeks by increasing the dosage little by little and noting

> any changes. The maximum amount Jonah was given was 4500 mg. Next we

> tried the Fish oil vitamin E protocol for a few months but there was no

> change so we stopped and went back to the Nordic naturals without the

> vitamin E. We tried Jonah on the NN cod liver oil, no change after a

> month, so back to the 3 6 9. Next we switched brands to New Chapter

> Wholemega since my wife and I was already taking these and thought

> we'd give it a try for him. We notice subtle changes but

> couldn't attribute it to the fish oils. We switched Jonah back to

> the NN 369's and no change. So we left him on the NN. For the last 5

> months we settled on 2000 mg NN 369 in the morning and 1000 mg NN 369

> before bedtime.

>

> Well the change in the fish oils came when I was doing research for my

> parents who recently had heart issues. I read about a how some drugs

> they were taking had a synergistic effect on each other. Alone they were

> not effective, but together they worked. That idea got me thinking

> through all the various fish oil adjustments I had been using for Jonah;

> I started thinking about the fish. NN use sardines and anchovies and

> Wholemega uses wild salmon. The other NN uses cod. A light clicked on

> and I started doing research on the wild fish themselves. I noticed that

> even though the NN 369's and Wholemega both had a balance of

> 369's, they each had different sources thus each fish gave different

> fat combinations. Would that really make a difference? I decided to mix

> the NN and Wholemega. Literally the next day, Jonah surged. I have to

> admit it was hard to believe. I gave Jonah 1000 mg (2 capsules) of NN

> 369 and 2000 mg (2 capsules) of Wholemega in the morning and the next

> day out came these 3 -4 word sentences. OMG!!!! We were in shock. It was

> amazing.

>

> We continued with this combination, I was afraid to adjust the dosage

> since it was working and each day Jonah seemed to say a new word or

> little phrase. His imaginary play exploded too and he was giving voices

> to all his cars or stuffed animals. It was amazing. So how do I know it

> was the fish oils? Unfortunately I had orders Jonah's Wholemega

> fish oils through amazon since I was running low. His wholemega ran out

> before they could come in and literally the next day, Jonah started to

> stutter. Within the next three days he was no longer surging and

> starting to regress. On day 4 his oils came in and I gave him the

> combination immediately. It took a few weeks for his stuttering to

> completely subside but sure enough Jonah was surging again.

>

> Wholemega's alone…no surge. Nordic Naturals alone…no surge.

> Both of these brands together…Surge.

>

> For whatever reason, this is the combination that works for Jonah's

> body chemistry. If you haven't experienced a surge with your child

> it doesn't hurt to try. Recently we took Jonah to see a DAN doctor

> in our area and he was amazed with this latest success. I explained to

> him all my logs and research and he couldn't wait to share it with

> some of the other parents who were on NN 369's or cod liver oil. I

> discussed with him that it could be the synergistic effect of the oils

> together in addition to their fish source and he was in agreement that

> it appeared to be this particular combination. I really do hope this

> information might help someone. I really tried to keep this article from

> getting too long so I hope I didn't lose anyone in my lengthy

> explanation. I'll check back to this post soon in case anyone has

> any questions.

>

> Oh forgot to mention…I have added 50 mg of ubiquinol coq10 to

> Jonah's diet each day. It acts as a neuro-protectant and it has

> anti-inflammatory properties. The DAN doctor was fine with this dosage.

> I added Ubiquinol to his supplements because this type of coQ10

> doesn't require a large dose and it also provides the energy for all

> cells especially for your heart, brain and eyes. It's like premium

> unleaded fuel for your car. It keeps the cells running efficiently and

> charged at maximum productivity. As with any advice, whether it is here

> or in anywhere, if your not sure always check with your doctor first.

>

>

>

>

>

> Here is Jonah's supplement breakdown:

>

> I open all softgels into a spoon and he takes them all in the morning

> before his breakfast.

>

> New Chapter WholeMega (2 Softgels)

>

> Total fat: 2000 mg

>

> Omega 3: EPA-180 mg, DHA-220 mg, OTHER Omega 3-100 mg

>

> Omega 5: 1 mg

>

> Omega 6: 140 mg

>

> Omega 7: 100 mg

>

> Omega 9: 660 mg

>

> Astaxanthin (ANTIOXIDANT): 6 mcg Found in all wild salmon

>

> Vitamin D3: 100 iu

>

> Ubiquinol COQ10: 50 mg (1 softgel)

>

> NN Complete 3 6 9 (2 Softgels)

>

> Total fat: 1000 mg

>

> Omega 3: EPA-270 mg, DHA-180 mg, OTHER Omega 3-115 mg

>

> Omega 6: 224 mg GLA-66 mg

>

> Omega 9: 244 mg OA-160mg

>

> Vitamin E: 30 iu

>

> Jonah is on a GFCF diet . (1 yr 1/2 ongoing). Upon diagnosis, Jonah knew

> no words, only grunts. He could not blow out of his mouth as if to blow

> out a candle, and was unable to jump. He fit the classic CAS

> description.

>

>

>

> I will be adding Vitamin D as well as probiotics per his DAN Doctor

> soon. I'll update it it makes a difference.

>

>

>

>

[Guest guest]

Thanks so much! I will try this with my son.

Sent from my iPhone

[Guest guest]

WOOHOO Congratulations to little Jonah and his " mommy and daddy " (from your

email name A quick question I have is when you give dosage of the ProEFA in

the archives you state number of capsules- and now you are using the mg instead

(which each 1000 is one capsule) So in short, is it that instead of using 2

ProEFA and 1 ProEPA a day which is the formula I share with this group -you were

using 3 ProEFA (which is the same as NN 369) a day? (which is one of the brand

names I recommend but not the final formula I recommend which also has to be

mixed) Did you ever add ProEPA and if you did how many ProEFA per ProEPA (I

recommend a 2 ProEFA to 1 ProEPA ratio)

I had never heard of Wholemega but looks like a really good formula from the

website. The Wholemega formula however is not only a pure Omega 3 but one that

is just slightly higher in DHA than EPA, so close however they are almost one to

one. http://www.newchapter.com/products/wholemega I mean at first when I read

your email I was thinking you found an Omega 3 fish oil higher in EPA than DHA

so like the ProEPA because again name brand doesn't matter -just formula, dosage

and quality of the oil. And if I confused anyone with saying ProEFA and Omega

369 - NN Omega 369 is Nordic Natural's commercial line of ProEFA (from the

Nordic Professional line

http://nordicnaturals.com/en/Doctors_Medical/Products_for_your_practice/21/ or

http://www.speech411.com But again when you say you played around with the

formula for the past year and a half- let us know if it was the formula- or just

the dosage from one to three capsules. Again did you ever try 2 capsules of

ProEFA (an Omega 3/6 formula that is higher in the Omega 3 EPA than the Omega 3

DHA but with a bit of GLA which is Omega 6 from primrose or borage seed oil) to

one capsule of ProEPA (Like Wholemega ProEPA is a pure Omega 3 formula except

the Omega 3 EPA is WAY higher than the Omega 3 DHA and with zero Omega 6 or GLA

from primrose or borage seed oil -see link above)

Wholemega is a pure Omega 3/about one to one for DHA and EPA - 90 of EPA and 110

of DHA...ProEPA is also a pure Omega 3 but much higher in EPA to DHA. 425 of EPA

to 100 of DHA but per capsule. Again ProEFA or Omega 369 (same exact formula

just marketed different ways) is an Omega 3 and 6 formula where the EPA is

higher than DHA with a small amount of Omega 6 from GLA.

So I have to say I am perplexed. I'm not saying we haven't had parents who have

children who fit outside the norm. We do have at least one parent that has

found a higher DHA to EPA to be better, we also have a few who have found a

higher EPA to DHA with no GLA to be best...but the two formulas you mixed

together -the ProEFA and the Wholemega if you look at them raised the Omega 3

just a tiny bit over the small amount of Omega 6 -and ever so slightly raised

the DHA higher than the EPA -which probably with the ProEFA/Omega 369 gave your

child a one to one balance of DHA and EPA with a tiny bit of GLA? So again

basically a ProEFA formula...and...with fish oil surges the speech progress is

accelerated- but typically not to full sentences. So that does leave it open

that what you are experiencing is a...developmental surge in speech as your

child is 3? If you ever stop the oils for any reason- you run out, forget,

sickness with vomiting which is the one time I don't give the oils -PLEASE do

update here if there is any regression.

The type of surge you report, going to full sentences and one after the other

-is something we are hearing about for the first time with NV -if you check the

archives fish oil surges are to all of us a Godsend and show progress -but not

from nonverbal to sentences just like that.

Here from the well known Fish Oils 101 are the typical progress report on EFAs

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.

And again unlike fish oils here are the surges on NV in days

http://pursuitofresearch.org/testimonials.html

http://pursuitofresearch.org/pursuit.html

So are you sure nobody is sneaking in some NV too?!!!

Below are some of your other emails here that I looked at to try to figure this

out. Again please let me know if you ever used the ProEPA...but mystery or not

-CONGRATULATIONS!!!! Either way essential fatty acids are essential and healthy

as you already clearly know for all -and to have surges on top of that -

priceless!

Re: " Backtalking " ? SLP said my son was speaking from the throat

Thu Apr 16, 2009 1:15 pm

My 2 year old son also " talks " from the back of his throat. He tries so hard to

say sounds without moving his mouth or lips.So you are not alone.

I know its hard to complete the checklist and see all the things that your child

can't say or do, but think of the things that he can do, smile, laugh, blow

kisses, ect. I still can't get my son to pucker for a kiss, but he can blow

kisses. The good news is you have some help for your child and that is a step

in the right direction. Hang in there!

Liz

Re: somewhat new to apraxia

Thursday, April 9, 2009 5:41:39 PM

Hi there,

I read your post and I can complete relate. My 28 month old son has severe

apraxia and I am also a first grade teacher. I also start to panic when I think

about my little one in school, but we just have to take it one day at a time.

It's hard, I know but you don't know where what stage he is going to be in 3

years from now. So try to focus on

the present.

Take care,

Liz

Ideas and Activities that you have used?

Sun Mar 29, 2009 2:29 am

Hi there,

I am new to the boards and new to the world of apraxia. I have a 2 year old

amazing little boy who I thought was speech delayed until a month ago when his

speech teacher told me otherwise. Since finding out he has apraxia both my

husband and I have done a ton of research and here is what we are doing so far:

1 on 1 speech therapy once a week

1 on 1 OT therapy once

1 softgel pill of EFA daily

Watches Baby Babble, he LOVES these DVDs and it has helped him so much

Any other thoughts or ideas on what else we should be doing?

He has 6 words that he can say when prompted, 4 letter sounds and can sign

around 6 words.

Here are the following activites that we have been doing to help him:

I bought some musical instruments at Toys R Us that require him to blow,

something he can't really do and he loves it.

He loves laying with bubbles, we work on the b and p sound, b

for bubbles and p for pop.

He blows through a straw to make an object move, most of the time a feather.

Any other activities that you have that has worked for your child?

Thanks so much,

Liz

=====

[Guest guest]

Thank you Sharon, I know you understand how hard this journey is and to find a

piece to that puzzle is just amazing for us. As parents we keep fighting for

answers for our children and I am just so greateful. My wife and I are just in

awe of the changes we are seeing. If this can help anyone by at least just

encouraging them to continue to keep trying that's the least I can do since so

many here gave us that same encouragement with every story we read and every

different therapy that worked for someone. Even though most didn't work for

Jonah, the fact that they were working for others is a blessing in itself.

>

> What fantastic news for your family. Just some good old fashioned " never give

up " working miracles for sweet Jonah.

>

> Kudos to you and your wife. Congrats on the discovery and thanks for sharing!

>

> Sharon

[Guest guest]

Well this would be new to me Shane. I never heard of the actual source of the

PUFA creating any difference if the formula is the same formula. ProEFA which

you started with is a fish oil formula that is higher in EPA than DHA which in

our group and repeatedly in PUFA research is found to be a better formula, and

for our group the formula that " works " . And again- the two brands you mixed

together just raised the Omega 3 slightly- and probably brought the EPA and DHA

to a one to one ratio. so lowered the EPA which hasn't worked for most -but not

sure if most of us mixed with salmon and not tuna. I know I tried salmon for

Tanner at one point -think it was from Canada- but it wasn't mixed with ProEFA

at the time. But to see the surges you are seeing with what you did still

perplexes me -even with the two formulas together as the Wholemega is not super

high in DHA or EPA -it's not a dramatically different formula by adding it to

the ProEFA than ProEFA alone.

EPA is a more expensive and difficult oil to process than DHA. Many of the

cheaper oils out there are just DHA or higher in DHA. Again looks like the

formula of salmon oil you are using looks like a good quality -but it is higher

in DHA than EPA which typically for my son Tanner =regression not surge. Then

again I always do a search for " FDA recall " for any company -and New Chapter who

makes Wholemega did have a product recalled by the FDA April 2010 due to

" Product may be contaminated with E.coli. "

http://www.fda.gov/Safety/Recalls/EnforcementReports/ucm210587.htm

Nordic themselves compares their fish oil to various types of PUFA oils

-including oils from salmon here

http://www.nordicnaturals.com/en/FAQ%27s/FAQs/385 (and again ProEFA and Omega

369 are one in the same from this company -same exact formula -just marketed

different ways -one for commercial like stores -and the " Pro " line is for

professionals)

Again most that try a higher DHA over EPA do not experience surges, but either

nothing if using for the first time -or regression if coming from a higher EPA

formula. For over a decade the higher EPA consistently is the formula that has

worked for most as I have in the history

http://www.cherabfoundation.org/2002/answers-about-proefa-and-history-of-how-it-\

came-to-be-known/

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

In addition again with fish oils even when there are surges it's typically

starting with sounds, then words, then sentences over a period of months. It's

quite rare if you check the archives for fish oils to take a child from

nonverbal to sentences. In fact so rare I can recall the parents who reported

spontaneous speech -like one child who I think it was in days of starting fish

oils walked into his parents bedroom and attempted a 3 word sentence about the

rain. And there are children including mine who within a few months attempted

to say I love you -but it would come out " I ah ooh " ....not at all clear

sentences but a huge gain from not being able to make a variety of sounds or put

any together. (then again years ago we started with just one ProEFA and very

very gradually worked up to two and it could be a year before adding that extra

ProEPA -and today parents go to the 2 to 1 combo at times to start- so yes the

surges are accelerated from the past -but still not from nonverbal to sentences

in days as again that's more of an NV type surge, not fish oil) It will be

extremely interesting to see if others that try this combo report the same

thing. Will LOVE to hear updates from others that try this. If my son Tanner

wasn't doing so amazing and in a very tough school with a large amount of work

I'd try it -but just can't risk a regression of any sort, speech, language,

academics, focus, or any of his motor planning/reflex type surges as this school

has all the sports he loves (and NV has changed my child's life) as in many ways

today Tanner is even above average in areas. Actually even if it was still the

summer I doubt I'd do anything to mess up what we are seeing in any way- I have

to pinch myself most days. But the one thing for sure is the essential

nutrients are key.

We are raising monies for research with the PUFAs and I am in contact with some

of the world's experts in this area. I will ask if there is any data showing

source of PUFA/the type of fish even if it's the same formula- if that is known

to make a difference in research. Again from what I know all that matters if

formula dosage and quality of the oils.

The reason the more expensive brands typically use the small fish like anchovies

and sardines is because they are lower on the food chain so less chance of

mercury (and what is written on the Nordic site but I hear many things from some

of the experts that you can't always find online) -but again formula is formula

-if in fact the formula is the same....I still don't see how it's at all

possible that the DHA from a tuna or salmon is different than DHA from a sardine

if the formula is the same formula. That is what perplexes me- unless there is

something outside of the DHA, EPA in the salmon oil that is helping together

with the ProEFA?

In a way I'd be sad to learn that a type of fish makes a difference- especially

if it needed (which I still highly doubt) had to be a fish like a salmon and not

an anchovy or sardine. There is no issue with the amounts of anchovies and

sardines but there is with some of the larger fish. The fish supplies are being

depleted and I was kind of hoping that the new trends towards getting the PUFAs

from algae can continue so that can be another option. Right now there are

mainly DHA formulas from the algae -but there is one formula

http://www.v-pure.com/ I've had my eyes on- even when it was in the research

stage in some other country (yes do keep my eyes open for stuff like this

....but the EPA is still quite low. But in the baby stage still in comparison to

fish oils.

By the way forgot to ask you about the mild signs of oral apraxia you (or your

wife) speaks about in one of your old messages- did that resolve too? Again

congratulations -and looking forward to learning more about your journey in

hopes you did uncover a new way to help. Thank you so much for sharing -and

please continue to do so -very interesting and exciting update!!

=====

[Guest guest]

Hi ,

I have been reding this e mail very carefully and I have to tell you it is very

attempting to try the combination they have provided. But

again I really like the NN 2:1 ratio, but my daughter never surge out of the

blue like some of the parents have experienced with their child.

I am currently on 2 EFA : 1 EPA and my daughter is currently 32 lb, 3 and half

years old. My question to you is, when is the best time or weight for us

to increase her dosage to 4 EFA : 2 EPA?? I want see if she will surge on this

combo or not, but I don't want to try if it will cause any harm to her little

body. I desperately wanted to know your suggestion since you get e mail's

around the world and have seen so many cases like mine.

Sent from my iPod

On Sep 7, 2010, at 2:56 AM, " kiddietalk " <kiddietalk@...> wrote:

> Well this would be new to me Shane. I never heard of the actual source of the

PUFA creating any difference if the formula is the same formula. ProEFA which

you started with is a fish oil formula that is higher in EPA than DHA which in

our group and repeatedly in PUFA research is found to be a better formula, and

for our group the formula that " works " . And again- the two brands you mixed

together just raised the Omega 3 slightly- and probably brought the EPA and DHA

to a one to one ratio. so lowered the EPA which hasn't worked for most -but not

sure if most of us mixed with salmon and not tuna. I know I tried salmon for

Tanner at one point -think it was from Canada- but it wasn't mixed with ProEFA

at the time. But to see the surges you are seeing with what you did still

perplexes me -even with the two formulas together as the Wholemega is not super

high in DHA or EPA -it's not a dramatically different formula by adding it to

the ProEFA than ProEFA alone.

>

> EPA is a more expensive and difficult oil to process than DHA. Many of the

cheaper oils out there are just DHA or higher in DHA. Again looks like the

formula of salmon oil you are using looks like a good quality -but it is higher

in DHA than EPA which typically for my son Tanner =regression not surge. Then

again I always do a search for " FDA recall " for any company -and New Chapter who

makes Wholemega did have a product recalled by the FDA April 2010 due to

" Product may be contaminated with E.coli. "

http://www.fda.gov/Safety/Recalls/EnforcementReports/ucm210587.htm

>

> Nordic themselves compares their fish oil to various types of PUFA oils

-including oils from salmon here

http://www.nordicnaturals.com/en/FAQ%27s/FAQs/385 (and again ProEFA and Omega

369 are one in the same from this company -same exact formula -just marketed

different ways -one for commercial like stores -and the " Pro " line is for

professionals)

>

> Again most that try a higher DHA over EPA do not experience surges, but either

nothing if using for the first time -or regression if coming from a higher EPA

formula. For over a decade the higher EPA consistently is the formula that has

worked for most as I have in the history

http://www.cherabfoundation.org/2002/answers-about-proefa-and-history-of-how-it-\

came-to-be-known/

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

>

> In addition again with fish oils even when there are surges it's typically

starting with sounds, then words, then sentences over a period of months. It's

quite rare if you check the archives for fish oils to take a child from

nonverbal to sentences. In fact so rare I can recall the parents who reported

spontaneous speech -like one child who I think it was in days of starting fish

oils walked into his parents bedroom and attempted a 3 word sentence about the

rain. And there are children including mine who within a few months attempted to

say I love you -but it would come out " I ah ooh " ....not at all clear sentences

but a huge gain from not being able to make a variety of sounds or put any

together. (then again years ago we started with just one ProEFA and very very

gradually worked up to two and it could be a year before adding that extra

ProEPA -and today parents go to the 2 to 1 combo at times to start- so yes the

surges are accelerated from the past -but still not from nonverbal to sentences

in days as again that's more of an NV type surge, not fish oil) It will be

extremely interesting to see if others that try this combo report the same

thing. Will LOVE to hear updates from others that try this. If my son Tanner

wasn't doing so amazing and in a very tough school with a large amount of work

I'd try it -but just can't risk a regression of any sort, speech, language,

academics, focus, or any of his motor planning/reflex type surges as this school

has all the sports he loves (and NV has changed my child's life) as in many ways

today Tanner is even above average in areas. Actually even if it was still the

summer I doubt I'd do anything to mess up what we are seeing in any way- I have

to pinch myself most days. But the one thing for sure is the essential nutrients

are key.

>

> We are raising monies for research with the PUFAs and I am in contact with

some of the world's experts in this area. I will ask if there is any data

showing source of PUFA/the type of fish even if it's the same formula- if that

is known to make a difference in research. Again from what I know all that

matters if formula dosage and quality of the oils.

>

> The reason the more expensive brands typically use the small fish like

anchovies and sardines is because they are lower on the food chain so less

chance of mercury (and what is written on the Nordic site but I hear many things

from some of the experts that you can't always find online) -but again formula

is formula -if in fact the formula is the same....I still don't see how it's at

all possible that the DHA from a tuna or salmon is different than DHA from a

sardine if the formula is the same formula. That is what perplexes me- unless

there is something outside of the DHA, EPA in the salmon oil that is helping

together with the ProEFA?

>

> In a way I'd be sad to learn that a type of fish makes a difference-

especially if it needed (which I still highly doubt) had to be a fish like a

salmon and not an anchovy or sardine. There is no issue with the amounts of

anchovies and sardines but there is with some of the larger fish. The fish

supplies are being depleted and I was kind of hoping that the new trends towards

getting the PUFAs from algae can continue so that can be another option. Right

now there are mainly DHA formulas from the algae -but there is one formula

http://www.v-pure.com/ I've had my eyes on- even when it was in the research

stage in some other country (yes do keep my eyes open for stuff like this

....but the EPA is still quite low. But in the baby stage still in comparison to

fish oils.

>

> By the way forgot to ask you about the mild signs of oral apraxia you (or your

wife) speaks about in one of your old messages- did that resolve too? Again

congratulations -and looking forward to learning more about your journey in

hopes you did uncover a new way to help. Thank you so much for sharing -and

please continue to do so -very interesting and exciting update!!

>

> =====

>

[Guest guest]

Hi , I completely understand your skeptism regarding how this is working for

my Jonah especially since you mentioned that you highly doubt the PUFA source as

making a difference given all your experience with fish oils and their ratios,

but for me, given all the time we have spent adjusting formulas and for this

combination to make such a huge difference, something is definitely in there

that is working wonders for him. I know the same can be said for so many parents

who use holistic methods and see improvements versus the advice of mainstream

pediatricians who just can't understand how this could be working so it must be

something else. I'm sure so many parents who have their children on NV

especially those who are seeing gains; it just doesn't make sense to many

physicians out there from the feedback I was reading. I mean NV stopping

seizures versus all the medication out there. How can this be? It can't be that

simple right? To several Doctors even specialists, I am sure some are quick to

dismiss it. Just like what is happening to Jonah, it just seems too good to be

true. Yet it is true for him.

As parents, we know our children the best and I truly believe every child is

different and thus requires a specific nutritional combinations specific to his

or her needs. CAS, Autism, etc. they are so broad and no one knows completely

why so many children have them so if the cause is broad, I must assume the

treatment is going to be as well. Our DAN Doctor was in complete agreement and

he stated that might explain why none of the other combinations I tried never

worked. I just hadn't found the right one. This formula works for Jonah. Might

it work for others, Liz and I hope so, but I just wanted other parents out there

to know that this worked for our son. It may or may not work for anyone trying

it, but if nothing seems to help at the moment, it doesn't hurt to give it a

try. As parents looking for answers, we just have to keep pressing forward.

If it isn't just the ratios, it leads me to believe that it certainly could be

something outside of the DHA/EPA in the salmon oil that is helping together with

the NN. In addition to the DHA/EPA ratios, is it the Astaxanthin, the D3 with

the Vita E from the NN, all of them together working in synergy, it is more than

just the fatty acid ratios, I don't know? Is it the 50 mg of ubiquinol that is

pushing the gains further? Like I said before …using the same ratios… the NN

alone,no surge. The Wholemega alone,no surge. Together…a huge surge. Words and

small phrases and make believe play that just seem like it came out of nowhere.

It couldn't have been another supplement he was taking since he was only on fish

oils and as soon as the wholemega ran out, he began to stutter and regress only

to recover once he started them again. Again I don't know why or how…it just

works for him. Since it is working so well, I don't want to mess with this

particular formula since I don't want to risk him losing his surge but I will

continue to add to his fish oils as his DAN doctor has suggested.

I know that all Jonah's speech therapy and OT and all our hard work working with

him every day has been huge in creating his foundation for speech but for Jonah

as well as so many other children, I'm sure he has always been thinking what he

wanted to say, he just couldn't. Jonah would just point and throw out a word if

he couldn't sign what he was trying to say, or a grunt with a word, or a jumble

of mixed sounds that sounds like he is trying to say something with a word

thrown in here and there. With this latest combination, it's as if those verbal

pathways just connected almost literally over night. I wish I knew exactly how

it is working for him but I don't. I wish I could say it will work for every

child out there, but I can't. I just pray that it does offer some improvement

for others. I just know one thing for a fact…that this formula is doing

something amazing for our son. We still have a hard time believing that it's

really happening. Jonah's DAN doctor is perplexed but he is eager to discuss it

with his colleagues. When something is working for one child, it certainly might

help with another. We just don't understand how it is working…yet. I hope that

we'll figure out what it is at some point. Like I said before I am just beside

myself, that it has made such a huge improvement for Jonah.

In regards to what you were saying about being sad if it is particular type of

fish that makes a difference. I completely understand what you are

saying…pollution and over fishing are huge global problems for all fish types,

but some are better than others like you mentioned. The fish used in NN and

Wholemega are considered sustainable. According to the Monterey Bay Aquarium

Seafood watch for sustainable seafood, wild Alaska salmon which is used is in

Wholemega and sardines which are used in NN are considered some of the best

choices. I really wish that we could get all our nutrients from plant-based

sources as well to ease over fishing but at the very least, they are using

sustainable fish in their products.

As for your last question as to Jonah's mild oral apraxia, that has improved

significantly but he does have some lingering issues. His therapy and OT helped

with that immensely, but with Jonah's speech surge and creative play, we did

recently notice the ease at which he was able to blow. Keep in mind when Jonah

was diagnosed this was a very difficult problem for him. As an example, about 2

½ months ago when you asked him to blow, he would blow through his teeth. He

also didn't have much thrust in the blow either.

Two weeks ago my brother turned 41 and everyone sang happy birthday and he blew

out his candles. My brother turned 41 but he had six candles. Jonah was so

excited, he yelled out, " my turn, Jonah's turn, Jonah blow out candles. " My mom

relit them, we sang happy birthday again for Jonah and when the song was done we

told Jonah to blow out the candles. In one breath, Jonah blew out all six, like

it was nothing. Liz and I made immediate eye contact with one another amazed at

what we just saw. He had never been able to that so easily.

Jonah also had very poor control moving his tongue by direction. Before bed time

we would brush his teeth and when were done, we always did this exercise in the

mirror of moving our tongues up and down and from sided to side. Jonah could

follow but was a bit slow. You could see him thinking about the movement as he

struggled. Along with his speech surge, I could see that his tongue movement

increased greatly. One night as I began the exercise, he actually stopped me. He

said " No daddy, Jonah's turn. " He then proceeded to tell me how to move my

tongue as he moved his. He was giving me direction. " Daddy move up…down… udder

side… udder side. All round. " It just blew me away.

Just an FYI, one thing we did notice with Jonah's surge is his attention, or

lack of. It appeared to worsen quite a bit recently. It's like he is surging so

much his mind can't keep up with it so he is all over the place sometimes. We

mentioned it to his DAN doctor and we are just continuing to monitor it.

[Guest guest]

Oh forgot to answer the following question...

" So are you sure nobody is sneaking in some NV too?!!! "

No NV being used. Like I mentioned before, I need to wait to layer it in at some

point, so this surge definitely cannot be attributed to NV. I'll post later if

it generates any improvement or not with Jonah when his DAN doctor and ourselves

feel its a good time to add it to his current diet. Again, glad to hear it is

working for so many.

[Guest guest]

Hi Shane,

I question even what I see in my son, so don't feel I'm questioning what you

saw- I believe you and it's fantastic. And yes perhaps it is something else

outside the PUFAs- I said that as well. I'm probably most careful now with

adding extra supplements due to what happened in this group with adding extra

vitamin E and the product Speak

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/ sometimes things can seem innocent -the

pediatrician/parent that shared this with our group told us it's " benign " and

yet if you read the above link while her own son perhaps surged on dosages of

vitamin e that were above upper tolerable levels -many of us watched in horror

as our children regressed or had seizures on the same formula. So no -I am not

nor have never been even prior to speak if you check the archives a huge fan of

just adding multiple supplements as you need to know how some of these things

affect our population of children, some if not many who may have digestive

and/or other metabolic issues -and why I gravitate to whole food nutrition

whenever possible as that's the most easily digestible, balanced and purest.

And...even when a doctor recommends something to me for my children- I question

that and seek second opinions -so again don't feel my being skeptical is

anything other than what it is -keeping the possibility open based on current

knowledge after running this group for over a decade.

Over the years if I notice something in Tanner, I share it with others offlist

prior to even sharing it here. For example the ProEPA added to the ProEFA -that

was six months before I shared it here (see archived message from our group

below- and there are many instances of this the most recent being NV). I am not

as conservative as I used to be as I now have seen over and over over the years

that my son Tanner is pretty typical of the majority of this group -but it

still took me a few months and sharing NV with others outside of the group to

see reactions in others before sharing it here. I knew about NV since early

September 2009 but my first message here was November 30th, 3 months later.

Over the years I have learned that Tanner's reactions are pretty typical for the

majority..in other words if something works for him it will for the majority of

others. There are other children who are outside of the norm. As your child is

just 3 and this is the first discovery you are sharing- time will tell as I

said. I'm sure others will try your discovery, and will report here what they

find. As a parent it really doesn't matter if it's coincidence, developmental,

or therapeutic, as progress is progress and should be celebrated. But on the

other hand if a new parent was to ask me what fish oil formula- I'm not going to

at this point waver from what we have seen time after time after time over a

decade in thousands. I will keep my mind open to possibilities but when I

answer parents I answer on probability rather than possibility. Skepticism is a

friend of this group and a sign of intelligence. If on the other hand one is

shown time after time after time that something is working and is still doubtful

-then that's no longer as much skepticism as stupidity. At this point I thanked

you for sharing, am happy for your child's success for your family, said it's an

exciting update, am wanting to hear more, but yes am still skeptical.

Of course will dig more if it works for another, but without knowing about side

effects of this or that supplement added to your child I wouldn't myself

recommend them. And yes I question even those things I introduce here. And as

you can tell by my ever growing theory page

http://pursuitofresearch.org/science.html I find it perfectly acceptable to

question everything, everyone, and that includes me.

I again would be sad, honestly, if there was a difference from source of PUFA as

again my hope for environmental reasons is that we can harvest the needed EPA

and DHA from algae instead of having to depend on depleting fish supplies -again

especially with salmon vs say sardines and anchovies- I'm sure all know about

the issues but if not http://www.nwr.noaa.gov/ESA-Salmon-Listings/ - so I have

reasons even beyond my knowledge, and belief- and it's called the future. And

again -no matter what I say to you as a parent- to hear your child's voice for

whatever reason is a beautiful thing. And about the lack of attention you are

noticing recently, as your child is only 3 years old I wouldn't assume yet there

it's an issue of learning too much too fast. I never cared for doctors who are

alarmists and quick to add a diagnosis when what it could be is developmental

still. For example here is just one article on lack of listening in 3 year olds

http://www.babycenter.com/0_getting-your-toddler-to-listen_11531.bc Questioning

everything, including asking " why? " with an open mind to the fact there are so

many possibilities is just the way I am and have been since I was a child -and

that includes diagnosis and why I am a full believer in second opinions.

The following is an archived message from June of 2002- almost exactly three

years after I first started my son Tanner on the fish oils in 1999 (now going on

my 11th year of continuing to learn more about fish oils -I've learned more

about fish oils and PUFAs than most people would ever want to know -trust me -I

wish it were chocolate!...perhaps why I like the chocolate NV?!!)

From the archives from me 6/4/2002

Using both Pro-EFA and Pro-EPA- would the mom that is doing this please email

me. Thanks

Hi Donna! There are a few of us using the Pro-EFA and Pro-EPA mix for awhile now

-I've been using this mix with my two boys (both late talkers - one with apraxia

and one with ADHD) since January -and after sharing our results with others off

list -it appears that others had the same results which is why I recently felt

comfortable with posting it here. The following is part of a recent archive

which explains why I tried mixing these two together in the first place (Not

that part of it isn't the inventor in me that says " if it's working, maybe we

can get it to work better! "

I have information in the archives about the SLI or speech language impairment

signs that Tanner was having -that are now gone since doing this: " ...I actually

had purchased the ProEPA to up the EPA for my son Dakota who has been diagnosed

by every neuro doctor and teacher since preschool with ADHD and we are avoiding

meds still because he is excelling in school since we started the fish oils - we

have been trying various formula's of the EFAs to find the best for him to help

his attention still which the fish oils still don't help as much - however for

some reason, he too does better with an Omega 3/6 combo formula which we didn't

know until this year.

Dakota was given all the many bottles of fish oil that didn't work for Tanner

when I thought they were all the same -not realizing back then that most were

just DHA and EPA alone. This year I started to give Dakota the higher EPA Omega

3/6 mix based on the stuff I read at http://www.equazen.com before I just found

out that the research on ADHD was with Efalex -I thought it was with EyeQ and

the higher EPA. So I started giving Dakota a ProEFA/ProEPA mix -not Tanner.

Anyway, not knowing, my husband started to give the ProEFA and ProEPA mix to

Tanner as well when Glenn and the boys went to Boston to visit my new niece for

the weekend when I couldn't go this past January as I was working on The Late

Talker book. When they came home, Glenn was saying how my relatives were all

commenting on how well Tanner was talking, and in just that one weekend I too

noticed he was talking a bit faster and more clear.

Once I found out that Glenn gave the mixture to both I kept it up, shared it

with Dr. Agin, and watched, and keep in mind that Tanner was not in any private

therapy at that time. What we saw was a surge in about a week in speed, recall

and great improvement on syntax -he was no longer " talking like a baby " and

mixing up past and present and leaving out the little words. I was very quiet

here about because I wanted to see if this was just unique to Tanner. So I told

a few other parents and the doctors about it, let them hear Tanner over the

phone I was so proud of him, and I again shared this news with Rhonda to share

with the ECHO Canadian group (can't wait to see you guys - and no it's not

bean-o I'm bringing for you!!) and I waited to see if others also saw a surge

-which it's OK now -you guys can start posting what you saw.

I still think it's best to start with just the one ProEFA capsule a day.

Increase to two only after the surge isn't that great anymore. Than after you

hit the second plateau again sometime after a few months-that's when it's good

to try upping the EPA a bit by squeezing a bit in to the mix. If you do it

gradual like this then you can see what is working best for your child... "

=====

[Guest guest]

By no means do I not welcome people to be skeptical, I actually encourage

everyone to be skeptical. They should be extremely skeptical of all things they

put in their child's bodies from fish oils to nutriiveda, to gluten, to caesin,

etc. Just because it works for some, it may not work for others especially

considering allergic reactions and inflamation. Your right some things may work

for a typical child with CAS, but typical in itself is hard to establish since

children are contsantly changing and growing. I understand you waited first with

fish oils, then you waited with nutriiveda to share it with the group as you

mentioned and I understand your reasons. For me, time is of the essence since

Jonah is growing so fast and the stages keep coming since he is so young. My

wife is a tenured teacher with 14+ yrs of experience especially with autistic

children and she has taught from k to 5. I lean heavily on her expertise when it

comes to Jonah's stages and timing is extremely important in a childs

development, CAS or no CAS. Early intervention is everything especially with

therapy and nutrition.

From our perspective, any help someone has to offer, its up to me to research it

and determine if its safe for my son. As soon as I verfied this with Jonah's

doctor he encourage me to share it here as well...I immediately thought of these

boards and wanted to share Jonah's amazing success with everyone here as a

possible adjustment if they so chose to try it, just in case like us, they

hadn't seen any improvements with the fish oils or ratios they were using. I

could have waited, but if a parent reads what were doing, researches the fish

oils and ubiquinol for themselves and perhaps refers to a professional for

reassurance...why wait. Again as parents we should be extremely responsible, we

are their advocates and we should always research anything we put in children's

bodies. Again I don't know how or why this works so well for Jonah, it just

does. I am not telling anyone here that they must do this if they want to see

success, I am just making this information available if someone wants to try,

just as they did for me reading these boards when Jonah was first diagnosed.

I read in prior posts about NourishLife speak a long time ago and I am sorry

that product was so damaging to so many children here. Actually I was reading

these posts at the time including yours and Jonah was accepted into their

program as a case study and we chose to pass due to the high Vitamin E and K

levels. Everything I researched about the danger of levels that high sent up a

huge red flag concering speak so we didn't do it. We did try some mixed vitamin

E adjustments at low levels but since we saw no improvment we stopped as well.

As parents it is so important we use trust our common sense and educate

ourselves. Your right, I actualy never posted any discoveries before because

nothing had really worked up to this point.

The combinations you suggested, the combinations from the autism sites I follow,

nothing worked so drastically until this last combination. The fact that it was

so dramatic even though it appeared to be a bit out of the box made me want to

come here and share it. It's the same excitement you mentioned with nutriiveda

when it was so huge for tanner. Again it's up to us idividually as parents

whether we want to try any of the supplements or protocols, I just want to share

and inform. I'm not being paid by anyone, I'm not selling anything, I have no

motivation to post here other than to share my son's amazing surge with the site

that helped us when we were scared and had no idea what CAS was. All I wanted to

do was inform everyone with what we are using with the hopes that if they chose

to try it that it might help in some way.

Liz and I wish everyone here the best of success with their children and We

really hope every parent here at some point gets to experience the miracle of

what we are experiencing with Jonah. I encourage everyone here to keep educating

themselves, be open yet skeptical, do a lot of research, talk to professionals

you trust, and most importantly don't give up trying. I never would have

believed we'd ever have the success we are seeing with Jonah, but like every

amazing parent here we just keep exhausting every effort to help our son. As we

all know " every child deserves a voice, " and as parents we all will never stop

working until we can give them that voice for themselves.

>

> Hi Shane,

>

> I question even what I see in my son, so don't feel I'm questioning what you

saw- I believe you and it's fantastic. And yes perhaps it is something else

outside the PUFAs- I said that as well. I'm probably most careful now with

adding extra supplements due to what happened in this group with adding extra

vitamin E and the product Speak

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/ sometimes things can seem innocent -the

pediatrician/parent that shared this with our group told us it's " benign " and

yet if you read the above link while her own son perhaps surged on dosages of

vitamin e that were above upper tolerable levels -many of us watched in horror

as our children regressed or had seizures on the same formula. So no -I am not

nor have never been even prior to speak if you check the archives a huge fan of

just adding multiple supplements as you need to know how some of these things

affect our population of children, some if not many who may have digestive

and/or other metabolic issues -and why I gravitate to whole food nutrition

whenever possible as that's the most easily digestible, balanced and purest.

And...even when a doctor recommends something to me for my children- I question

that and seek second opinions -so again don't feel my being skeptical is

anything other than what it is -keeping the possibility open based on current

knowledge after running this group for over a decade.

>

> Over the years if I notice something in Tanner, I share it with others offlist

prior to even sharing it here. For example the ProEPA added to the ProEFA -that

was six months before I shared it here (see archived message from our group

below- and there are many instances of this the most recent being NV). I am not

as conservative as I used to be as I now have seen over and over over the years

that my son Tanner is pretty typical of the majority of this group -but it

still took me a few months and sharing NV with others outside of the group to

see reactions in others before sharing it here. I knew about NV since early

September 2009 but my first message here was November 30th, 3 months later.

>

> Over the years I have learned that Tanner's reactions are pretty typical for

the majority..in other words if something works for him it will for the majority

of others. There are other children who are outside of the norm. As your child

is just 3 and this is the first discovery you are sharing- time will tell as I

said. I'm sure others will try your discovery, and will report here what they

find. As a parent it really doesn't matter if it's coincidence, developmental,

or therapeutic, as progress is progress and should be celebrated. But on the

other hand if a new parent was to ask me what fish oil formula- I'm not going to

at this point waver from what we have seen time after time after time over a

decade in thousands. I will keep my mind open to possibilities but when I

answer parents I answer on probability rather than possibility. Skepticism is a

friend of this group and a sign of intelligence. If on the other hand one is

shown time after time after time that something is working and is still doubtful

-then that's no longer as much skepticism as stupidity. At this point I thanked

you for sharing, am happy for your child's success for your family, said it's an

exciting update, am wanting to hear more, but yes am still skeptical.

>

> Of course will dig more if it works for another, but without knowing about

side effects of this or that supplement added to your child I wouldn't myself

recommend them. And yes I question even those things I introduce here. And as

you can tell by my ever growing theory page

http://pursuitofresearch.org/science.html I find it perfectly acceptable to

question everything, everyone, and that includes me.

>

> I again would be sad, honestly, if there was a difference from source of PUFA

as again my hope for environmental reasons is that we can harvest the needed EPA

and DHA from algae instead of having to depend on depleting fish supplies -again

especially with salmon vs say sardines and anchovies- I'm sure all know about

the issues but if not http://www.nwr.noaa.gov/ESA-Salmon-Listings/ - so I have

reasons even beyond my knowledge, and belief- and it's called the future. And

again -no matter what I say to you as a parent- to hear your child's voice for

whatever reason is a beautiful thing. And about the lack of attention you are

noticing recently, as your child is only 3 years old I wouldn't assume yet there

it's an issue of learning too much too fast. I never cared for doctors who are

alarmists and quick to add a diagnosis when what it could be is developmental

still. For example here is just one article on lack of listening in 3 year olds

http://www.babycenter.com/0_getting-your-toddler-to-listen_11531.bc Questioning

everything, including asking " why? " with an open mind to the fact there are so

many possibilities is just the way I am and have been since I was a child -and

that includes diagnosis and why I am a full believer in second opinions.

>

> The following is an archived message from June of 2002- almost exactly three

years after I first started my son Tanner on the fish oils in 1999 (now going on

my 11th year of continuing to learn more about fish oils -I've learned more

about fish oils and PUFAs than most people would ever want to know -trust me -I

wish it were chocolate!...perhaps why I like the chocolate NV?!!)

>

> From the archives from me 6/4/2002

> Using both Pro-EFA and Pro-EPA- would the mom that is doing this please email

me. Thanks

>

> Hi Donna! There are a few of us using the Pro-EFA and Pro-EPA mix for awhile

now -I've been using this mix with my two boys (both late talkers - one with

apraxia and one with ADHD) since January -and after sharing our results with

others off list -it appears that others had the same results which is why I

recently felt comfortable with posting it here. The following is part of a

recent archive which explains why I tried mixing these two together in the first

place (Not that part of it isn't the inventor in me that says " if it's working,

maybe we can get it to work better! "

>

> I have information in the archives about the SLI or speech language impairment

signs that Tanner was having -that are now gone since doing this: " ...I actually

had purchased the ProEPA to up the EPA for my son Dakota who has been diagnosed

by every neuro doctor and teacher since preschool with ADHD and we are avoiding

meds still because he is excelling in school since we started the fish oils - we

have been trying various formula's of the EFAs to find the best for him to help

his attention still which the fish oils still don't help as much - however for

some reason, he too does better with an Omega 3/6 combo formula which we didn't

know until this year.

>

> Dakota was given all the many bottles of fish oil that didn't work for Tanner

when I thought they were all the same -not realizing back then that most were

just DHA and EPA alone. This year I started to give Dakota the higher EPA Omega

3/6 mix based on the stuff I read at http://www.equazen.com before I just found

out that the research on ADHD was with Efalex -I thought it was with EyeQ and

the higher EPA. So I started giving Dakota a ProEFA/ProEPA mix -not Tanner.

Anyway, not knowing, my husband started to give the ProEFA and ProEPA mix to

Tanner as well when Glenn and the boys went to Boston to visit my new niece for

the weekend when I couldn't go this past January as I was working on The Late

Talker book. When they came home, Glenn was saying how my relatives were all

commenting on how well Tanner was talking, and in just that one weekend I too

noticed he was talking a bit faster and more clear.

>

> Once I found out that Glenn gave the mixture to both I kept it up, shared it

with Dr. Agin, and watched, and keep in mind that Tanner was not in any private

therapy at that time. What we saw was a surge in about a week in speed, recall

and great improvement on syntax -he was no longer " talking like a baby " and

mixing up past and present and leaving out the little words. I was very quiet

here about because I wanted to see if this was just unique to Tanner. So I told

a few other parents and the doctors about it, let them hear Tanner over the

phone I was so proud of him, and I again shared this news with Rhonda to share

with the ECHO Canadian group (can't wait to see you guys - and no it's not

bean-o I'm bringing for you!!) and I waited to see if others also saw a surge

-which it's OK now -you guys can start posting what you saw.

>

> I still think it's best to start with just the one ProEFA capsule a day.

Increase to two only after the surge isn't that great anymore. Than after you

hit the second plateau again sometime after a few months-that's when it's good

to try upping the EPA a bit by squeezing a bit in to the mix. If you do it

gradual like this then you can see what is working best for your child... "

>

> =====

[Guest guest]

Thank you so much for getting back to me, and I wanted to add that I am so

excited for your family and this breakthrough for Jonah.

I spoke to our pediatrician, and he wasn't up to date with the effects of CoQ10

on children, so he's asked me to do further research on it (which is what I will

do) My son is 3 yrs old, and 41 lbs. Please continue to update us on Jonah's

changes.....great job, and it's parents like you that inspire me!

________________________________

From: jonahsmommyanddaddy <jonahsmommyanddaddy@...>

Sent: Wed, September 8, 2010 12:51:37 AM

Subject: [ ] Re: New Fish Oil Combination for Jonah, Finally a

Huge Surge. *UPDATE*

Hi ,

Jonah is almost 4 and is 44 lbs. His DAN doctor(Defeat Autism Now) said 50 mg of

ubiquinol was well within safe levels for Jonah. Though there is limited

research with children, parent's of autistic children were taking greater

amounts of ubiquinone coq10 without side effects. I chose ubiquinol COQ10 since

you get better results with a much smaller dosage. If you would like to know why

Ubiquinol COQ10 is so important for cells, google Ubiquinol and wikipedia to

start. I encourage you to speak to your pediatrician or nutritionist if you feel

unsure about the doseage.

" Ubiquinol and CoQ10 are very closely related. Ubiquinone, or CoQ10, is the

oxidized form of the molecule. This means it has to be converted to a

non-oxidized form before it can perform its work. Ubiquinol is the active form

of this nutrient. Our bodies convert CoQ10 to ubiquinol – which is the form

needed to produce cellular energy. "

I hope this helps.

>

> I'd like to know more about the Ubiquinol COQ10: 50 mg (1 softgel)...is it

safe

> for children??

>

>

>

>

>

> ________________________________

> From: " clairezheng99@... " <clairezheng99@...>

> " "

< >

> Sent: Tue, September 7, 2010 2:03:39 PM

> Subject: Re: [ ] Re: New Fish Oil Combination for Jonah,

> Finally a Huge Surge. *UPDATE*

>

>

> Hi ,

>

> I have been reding this e mail very carefully and I have to tell you it is

very

> attempting to try the combination they have provided. But

> again I really like the NN 2:1 ratio, but my daughter never surge out of the

> blue like some of the parents have experienced with their child.

>

> I am currently on 2 EFA : 1 EPA and my daughter is currently 32 lb, 3 and

half

> years old. My question to you is, when is the best time or weight for

>us

> to increase her dosage to 4 EFA : 2 EPA?? I want see if she will surge on

this

> combo or not, but I don't want to try if it will cause any harm to her little

> body. I desperately wanted to know your suggestion since you get e mail's

> around the world and have seen so many cases like mine.

>

>

>

> Sent from my iPod

>

[Guest guest]

My Aunt took Co Q 10 and a few months later started having insomnia. Her doctor

finally figured out it was from the Co Q 10 and once she stopped taking it she

no longer had insomnia. She was exhausted and they almost put her on drugs for

the insomnia. I don't know how common that is. I don't know where you would

find out if it is safe for kids but I would not trust wikepedia for my child.

Kate

--- In ,

If you would like to know why

> Ubiquinol COQ10 is so important for cells, google Ubiquinol and wikipedia to

> start.

[Guest guest]

I wasn't implying that you use wikepedia as the reason to use Ubiquinol.

" If you would like to know why Ubiquinol COQ10 is so important for cells, google

Ubiquinol and wikipedia to start. "

Where in that statement do I say use wikipedia as proof as to why its safe? I

said research was limited and Jonah's DAN doctor said it was well within safe

levels for HIM. Furthermore I suggested it to as a place to begin in

learning about what ubiquinol coq10 is. Taken out of context inplies the advice

I gave her was iresponsible, which I am not. you left out the part...

" I encourage you to speak to your pediatrician or nutritionist if you feel

unsure about the doseage. "

Like I said in my previous posts, parents need to be responsible and research

everything they are putting in their children's bodys and not take to take

advice from anyone here as proof of safety. Always check with a professional if

your unsure. I thought that was common sense. I researched ubiquinol coq10 at

great length before I made the choice to give it to my son. I corresponded with

several autism groups concerning any side effects they might be experiencing, I

emailed the doctors who were in an autism study I was followng with questions

about safety. I would expect everyone here to do the same, to not do so would be

irresponsible and wreckless.

To make a point, my mom can't take fish oils because it lowers her blood

pressure and affects her diabetes adversely. Should I then assume it is

dangerous for everyone in the same way. No, it means that it isn't right for

her. Fortunately, after lot of research, doctor supervision and a lot of trial

and error, fish oils gave my son a voice.

There could be several reason why the coq10 gave your aunt insomnia...she could

be sensitive to it, she could have been using a cheap source, she could be on

statins, it could have counteracted with something else she was taking, the

reasons could be endless. I hope she checked with her doctor before she decided

to take it but it doesn't sound like she did.

>

> My Aunt took Co Q 10 and a few months later started having insomnia. Her

doctor finally figured out it was from the Co Q 10 and once she stopped taking

it she no longer had insomnia. She was exhausted and they almost put her on

drugs for the insomnia. I don't know how common that is. I don't know where you

would find out if it is safe for kids but I would not trust wikepedia for my

child. Kate

>

> --- In ,

>

> If you would like to know why

> > Ubiquinol COQ10 is so important for cells, google Ubiquinol and wikipedia to

> > start.

>

[Guest guest]

From what I know all that are involved in this conversation are parents of

special needs children. From my experience if you are part of this group you

are probably well educated and above average in making sure you do what is best

for your child. I appreciate the .ooooo2 percent of you that share here as most

just read and lurk -and don't want to lose anyone because they feel they can't

share a story say...about their Aunt. It's OK to debate, it's OK to disagree,

it's OK to not always get along -but just remember that the person you are

writing to is probably a parent just like you, or perhaps a professional who

works with children and thank goodness is here in off time to learn more how to

help the children...and also trying to reach out and share something they think

may be of interest.

When I ran in person support group meetings which we did for years...honestly -I

only recall one debate ever -and it was between SLPs who were debating the

existence of apraxia. (yes...really) I don't believe anyone knows much about

CoQ10 for children and it's probably going to be a rare few that try it due to

that. From what I read Kate said she didn't know how common it is for someone

to develop insomnia from CoQ10 like her Aunt did. That would probably be the

better question to ask or look for an answer for then 'why' someone's Aunt had a

side effect. I mean insomnia is either a side effect of CoQ10 or not -and if it

is how common in adults? At what dosage? Would it be more or less common in

children? Those of you trying this may be able to answer. If there are not set

dosages or upper tolerable levels and as you say little research... you don't

know when you cross the line.

As far as where to search -I kind of like Google Scholar -I like the following

PDF I found on CoQ10 http://www.longwoodherbal.org/coq10/coq10.PDF It is not

something that would interest me for my boys, but I do want all that try this or

anything else they feel is good for their child, or that could be bad for a

child... to feel free to share.

....and because I think we all need a laugh right about now

http://www.youtube.com/watch?v=Y0ai42UZQic

=====

[Guest guest]

Thank you that really means a lot to me right now. I'm feeling a bit sad on

these boards right now and your comments are really good to hear. I didn't

expect to feel this way when I came back here to post a few days ago. My wife

and I have worked extremely hard to get Jonah to this point, researching,

consulting with experts, therapy scessions, nutritional adjustments, supplement

adjustments.... After going through so much and being blown away by his surge, I

was excited and just wanted to post Jonah's amazing success, share the

combinations of supplements that gave us his incredible surge and let parents

decide for themselves if the information regarding Jonah's supplements would be

of benefit to them or not. I'm not trying to prove anything to anyone, we know

for a fact it is helping our son. If his supplements could help another child we

would be even more blessed.

I am really glad to hear you are doing research on ubiquinol before you decide

to implement it or not. After your research, whatever supplements you decide to

have your child use, take good notes of dosages and note any changes every time

you make adjustments. That's what I did over and over again since Jonah's

diagnosis until I got to this last successful combination of fish oils and

ubiquinol.

I really believe every child is unique and requires specific supplements for

their individual needs and current developmental stages. Opinions vary as I'm

sure you have read, but its the only reason that makes sense to us as to why

some supplements work for some children with CAS or Autism and others don't or

why some dosages work and others don't.

I have to remember there is a reason why thousands of professionals and parents

know so little about Autism and CAS. Though there are so many experts out there,

they still know very little since the spectrum is so broad and the causes are

unclear. This is why us as parents are the ultimate advocates and healers for

our children. We know our children the best which is why Liz and I rely on our

intuition more than anything. Without that intuition Jonah would have lost more

than 1/2 a year of therapy since his peditrician said there was nothing to worry

about, wait til he is 3. Thank God my wife pushed the issue and had him tested

despite what everyone else was saying. We really do have to educate ourselves

and be proactive.

I am really glad you contacted your child's doctor. Jonah's current pediatrician

didn't know too much about ubiquinol or the fish oils, but his DAN doctor was

very knowledgable. If you have a DAN doctor in your area, I highly recomend at

least a consultation to see of he or she can benefit your child. I felt really

good in knowing that everything Jonah's DAN doctor told me about his current

supplements, I had actually read from all my previous research regarding

possible side effects, benefits and dosage. He has great ideas backed by good

research that we are going to try and he also has provided me with lots of

additional resources to research.

If you have any questions, please ask or send an email. If my wife or I can help

you in anyway in regards to all the things we have done for him regarding his

supplements, his therapy (speech or ot), his gluten free/caesin free diet, the

learing material we have been using, the DVD's that we used that helped jonah

with his basic sounds, all the toys and equipment that continue to help his

dyspraxia or the books he loves that encourage his mimicking, please email me

and we will try to help you any way we can. So many people have helped us

through this process and any way we can pay it forward is truely our pleasure.

My wife as a teacher especially with her experience in autism is a huge source

of information and she would be glad to help you in any way she can as well. She

also has a lot of resources that she can refer to. As a teacher she has access

to alot of speech/autism professionals who have been instrumental in guiding our

various therapies for Jonah.

At the very least, I hope Jonah's success offer just a little bit of HOPE and

encouragement to keep trying. Thank you again for your very kind words and its

parents like you and all the other parents out there that work tirelessly to

help our beautiful children find a voice that really inspire us.

>

> Thank you so much for getting back to me, and I wanted to add that I am so

> excited for your family and this breakthrough for Jonah.

> I spoke to our pediatrician, and he wasn't up to date with the effects of

CoQ10

> on children, so he's asked me to do further research on it (which is what I

will

> do) My son is 3 yrs old, and 41 lbs. Please continue to update us on Jonah's

> changes.....great job, and it's parents like you that inspire me!

[Guest guest]

I just wanted to post and thank you sooo much for sharing your supplement

tweakings. The same day I read your post my son's DAN suggested CoQ10 for him.

My son is 5 and diagnosed with autism. He has been nonverbal (except for 2

words 3yrs ago) the majority of the time. I had tried NV with him under a year

ago with no obvious improvement. We have done Nordic Naturals for the last 2

yrs with small improvements. After reading your post and researching the

supplements (we had been using CoQ10 but not ubiquinol), I decided to give your

tweakings a try.

The next day after starting the ubiquinol and wholemega he tried a new word and

said 2 he hasn't used in years! And has added about 5 more since. Since I

started both the ubiquinol CoQ10 and wholemega on the same day I'm not sure

which had better impact or if it was indeed a syngergistic effect. He needs

both so it didn't matter to me. We have since added in the NN 369 (had been

using NN ProOmega per his DAN), with no noticeable difference. He is making huge

strides everyday and for the first time I'm actually hopeful!!

Thank you so much for sharing and paying it forward! *hugs*

~Crystal