Update on Tanner and response to 2 messages

[Guest guest]

" I am not sure why this information wasn't included in

the " Educational Reference Fact Sheet " unless it was to cover the

entire speak product, anyway fish oil can also have potential

negative interactions when combined with other meds "

Tina where did you hear this from " fish oil can also have potential

negative interactions when combined with other meds "

The only medication you should be careful of with fish oil is

Coumadin and name a child in this group who is on Coumadin. (insert

cricket sound here) And even then some have found in research

that's not relevant either http://www.mdrlabs.com/essaycoumfish.htm

And this link from the NIH says " the omega-3 fatty acids have no

documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children "

" The omega-3 fatty acids offer some unique benefits, should they

prove to be truly effective mood stabilizers. The advantages of the

omega-3 fatty acids as mood stabilizers include the apparent acute

efficacy in both the manic and depressive phases of bipolar

disorder, their lack of toxicity, as well as high patient

acceptance. In addition, omega-3 fatty acids confer some health

benefits during chronic use, such as possible reduction in the risk

of a fatal myocardial infarction. In addition, the omega-3 fatty

acids have no documented adverse drug interactions, and appear to be

safe (and possibly beneficial) in pregnancy and in children. "

http://ods.od.nih.gov/news/conferences/w6w3_abstracts.html

And Elena you wrote

" I don't know where you are situated on this biomedical interventions

continuum--among which fish oil and vit E are included BTW--- but if

we are indeed dealing with a metabolic /autoimmune/food intolerance/

fatty acid malabsorption syndrome as per Dr. , "

In the history of this group for almost a decade with thousands and

thousands of members -and in the history of the world children have

been given fish oil. Almost all (all?) fish oil contains vitamin E,

however the megadosages of vitamin E crosses the line.

I remember when I first brought fish oils to this group in 1999 Dr.

Marilyn Agin and others were freaked out that fish oil would cause

those sort of negative effects...nope -only good stuff. Years later

the world would learn what a few already knew through massive amounts

of research and then media attention that fish oils are safe and

essential for every stage of life including neonatally and effective

in helping in various conditions. The side effects if any of fish

oils are temporary loose stools or temporary behavioral changes like

terrible twos type or more hyper -stuff like that which was easily

fixed if parents wanted by lowering the dosage and even then many

waited it out and it disappeared in a few days to a week and surges

came in.

Dr. joined this group as a parent late 2005 and many of us

increased the vitamin E from where it was a bit. Now with speak,

increase the vitamin E in the fish oil from where it was to

megadosages of vitamin E and K and we have read in this group severe

negative reports from a number of parents including me for my own son

Tanner when put on Speak -which is 's formula of megavitamins

added to a formula of fish oils which we had found as a group to be

benign and effective.

In my opinion someone needs to do a case study of what we found in

this group when children and young adults were put onto megadosages

of vitamin E (and K too). Here's a list of reports and each one of

these email addresses comes with a family behind it that can easily

be contacted -the professionals that work with each child can easily

be spoken to -it can be proved that none of these reports are rumors

or " 3rd person reports "

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/

It's been over a month and my son is still not back 100% to where he

was prior to being on Speak for around 2 weeks. Not only does this

horrify me and my husband and all those that love Tanner -but it is

greatly upsetting to Tanner which makes the pain even worse for us.

For Tanner it's been over a month he's been off of Speak but this is

not your typical regression. This is not " whoops ran out of fish

oil " or " used the wrong brand of fish oil " or " too much fiber " type

regression where you go back to the right formula and " poof " they are

back in a day or two. This to me is something still unknown and far

scarier. And something the two of you above should be aware of since

I am under the impression that neither of you have put your own child

on speak yet so I can tell you that it's easier to talk in theory

than in reality. Or did either of you put your child on speak?

This isn't about hurting someone's feelings because they had a theory

and good for them that they did -but it is probably wrong. This is

in my opinion protecting the majority of children from a treatment

that to me I found to be worse than the condition.

Unless you have some way of knowing prior to putting your child on

megadosages of vitamin E...and vitamin K of hypervitaminosis and

possible side effects of that in my opinion you ARE taking a risk

based on an unvalidated (? or did we just prove it wrong?) theory.

Here's how my 12 year old son Tanner was speaking prior to

taking " speak " Tanner's talking page from February 6th 2008

http://www.debtsmart.net/talk/tanner.html

I was not informed of any risks at all about vitamin E except

bleeding and was informed by that's why the vitamin K was

added. I was hoping to see improvements in Tanner's sensory (he

still doesn't feel pain like others) and perhaps who knows -he'll be

able to tie his shoes better! Stupid stuff like that. But being I

thought it was benign...why not?

Tanner was only on Speak for around 2 weeks and has been off for it

has to be a month now. After 2 weeks on Speak my son Tanner

regressed back years to where he was groping -he opened his mouth and

nothing came out. The look of horror on his face I will never

forget. Of course I took him off but as horrified as we both were

(Tanner and me) At that point however since all I ever knew were

temporary regressions for both Tanner and all the others here

throughout the almost 10 years now I was upset but more worried as to

why did Tanner regress so much rather than freaked out. I got on

the internet and found information about hypervitaminosis and

myopathies for vitamin E -which IS serious and emailed that to Pharma

Omega and asked for answers, for research. I've asked a few times

since for answers about hypervitaminosis E or K and why we were not

informed of any risks of this prior. I pointed out the reference to

the quote that 3000 IU of vitamin E is safe for children was pulled

from The LCP Solution -a book that was written 10 years ago. That

the one co author Malcolm Nicholl is a friend of mine and he doesn't

recall where that quote came from and that Dr. Stordy is now

retired. Lori from this group pointed out that there are no research

cited to this statement of 3,000 i.u. of Vitamin E to children being

safe in the book. herself said on this group that she

couldn't find the study that made this conclusion. Lori contacted

the Council for Responsible Nutrition and they deny making this

statement and sent her their statement " Thank you for clarifying

with CRN. According to our scientist, CRN has not declared a

position on vitamin E with regard to daily amount per pound of body

weight nor daily amount for children. Our scientist, Hathcock,

in a review published in the American Journal of Clinical Nutrition,

concluded that vitamin E supplements appear safe for most adults in

amounts less than or equal to 1600 IU. I have attached that review

article for your reference. I hope this helps. Please let me know

if you have further questions. " ...and I still ask -'was it a

typo'?! If it was than it's a typo from 10 years ago that is, and

apparently an unvalidated typo according to what Lori found out.

Glenn went away on business after Tanner was on Speak for a few days and

came back a few days after he was off of speak.

Glenn left to go to NY and was FURIOUS when he heard his son try

to talk when he came home! Tanner was struggling to say just about

anything. Glenn was well aware that I wanted to know where the

formula came from and I tried to tell all parties behind Speak that

it wasn't the formula that Tanner or most I knew had their child on.

Let's back up for a moment to why Glenn was even more angry.

Glenn knew that I never thought the formula was right even before I started

Tanner on it. (and why I agreed to find the focus group)

I was told a few times by and those from Pharma Omega about

why the formula was the way it was -based on 's theory and all

the science and experts behind it. So here I was -my own son and

belief against the science, the theory, and the " experts "

I thought I was being a

better person by swallowing my pride to listen to the experts and

even though I still wasn't sure in my gut -I started to get excited

that maybe this is 'it' -you know -the cure. Who am I to stand in

the way of science and the experts? I agreed to help find the focus

group and at that point was excited to share with everyone. Looking

back it was the Santa Claus moment for sure. I knew he didn't exist

but wanted to believe.

Day 1

I started Tanner on speak and was excited to do so. He was excited

to because he met and he heard me talk to her on the phone

and Tanner as I have written in the archives was a huge vitamin E

fan. Vitamin E wasn't the dramatic surges of fish oils -but Tanner

wouldn't remember them as he's been on fish oils since 2 years 10

months old and he's now 12...but vitamin E in a 1/1 ratio of alpha to

gamma and in a lower dosage helped his speech become a bit faster and

clearer. And...it helped his sensory issue as Tanner doesn't feel

pain like most. Unfortunately the sensory aspect faded and I figured

he needed more vitamin E....but Tanner refused to take any more

pills. Tanner's speech however never regressed back and I never

tried to reduce or eliminate the vitamin E he was on which I regret

now. What I suspect now is that Tanner's original surges on vitamin

E were not due to any fat absorption issue -and not just because

Tanner tested normal on all his blood work, not just because he had

no signs of having a fat absorption problem and he is a very

athletic, very tall 12 year old, and not just because he regressed so

much on speak which was based and created for 's fat

absorption theory...but because just due to Tanner being supplemented

with fish oils would create a vitamin E deficiency. But that didn't

mean he needed to be on megadosages of vitamin E nor did it mean he

needed to be on vitamin E for more than a week or so at a time.

And archive from 2005 of an archive from 2003

>

> >

> > vitamin e for stabilization of the fish oils is only one

> > reason they add vitamin e to fish oils. Here's another from a

> > message from the archives from 2003 as to why Nordic raised the

> > e 'up' from 8 IUs to 15 IUs of alpha per capsule:

> >

> > From: " kiddietalk " <kiddietalk@>

> > Date: Mon Dec 8, 2003 9:26 am

> > Subject: Re: Your thoughts about Vit E in ProEFA

> >

> > And another thing to keep in mind...if a child is on fish

oil...then

> > he or she will need extra Vitamin E because....

> >

> > " There is some concern that a diet rich in fish oil taken for many

> > months may induce a deficiency of vitamin E. People who eat a diet

> > high in fish or who take fish oil supplements may want to consider

> > taking vitamin E supplements. "

> > http://www.usadrug.com/IMCAccess/ConsSupplements/VitaminEcs.shtml

> >

>

/message/40613

And here's another link on this

http://jn.nutrition.org/cgi/reprint/121/4/484.pdf

But forget all of that because clearly I did -back to day 1:

I started Tanner on 6 speak plus 4 extra high gamma vitamin E

capsules since Tanner had regressed the 2 other times I raised the

alpha vitamin E over the gamma and I wanted to make sure he had

enough gamma. No regressions and no surges the first 4 days.

Day 5

On the 5th day he threw up starting at 4 AM. Severe diarrhea that

came out like water. Tanner stayed home from school that day but I

didn't think anything of this. Figured it was a virus. I ran out

to Target and bought some Gatorade and made sure Tanner had that and

some toast.

By the afternoon however Tanner's vomiting and diarrhea had stopped

completely and he was eating regular food. He ate regular dinner and

after school his friend came over and he played with and

his brother. The next morning (which is now the 6th day of speak)

Tanner ate a normal breakfast and I gave him only 3 speak with 2 high

gamma. I figured he was just sick the day before so I wanted to " cut

back " on his dosage.

That day the school called me and Tanner who had just come in from

playing basketball felt very nauseous, " like I have to throw up " and

wanted to come home. who I spoke with on the phone that day

as I drove to the school to pick up Tanner suggested I only give him

the speak and no extra vitamin E.

Day 7 and 8

Day 7 and 8 of speak was just 4 speak and no extra vitamin E and

Tanner's speech dramatically regressed in those 2 days.

Days 9 to 12 (or could have been to 14)

I had him on 4 speak and 2 high gamma vitamin E. This was when

Glenn was away on business in NY and I asked Tanner if he wanted to

stop and he said no -he still wanted to try it. If only Glenn were

still home I know he would have made us stop. He got mad the 2 other

times I tried to raise up the alpha E when encouraged me to

do that and Tanner regressed. " What are you doing he was doing

great?! " Looking back it does all seems nuts -I guess Tanner and I

were both caught up in the dream.

During this time was when Tanner started getting " really bad

headaches " He insisted he wanted medication for his headache but I

was resistant. Why do you have a headache Tanner you never get

headaches?! I did give him a Motrin and he went to sleep for hours.

There were at least 2 days like that and during that week he was

sleeping far more than usual. He even slept through dinner a few

times. I figured he was going through a growth spurt. He was

sluggish and off during his basketball games too.

We were now around 2 weeks on speak and during this time I was in

contact with and Pharma Omega explaining in detail Tanner's

regression in speech. I did mention the vomiting and all -but not

the headaches -but again didn't really think at that point that one

had anything to do with the other. I had yet to just get on the

internet and do a simple search of the signs of " too much vitamin E "

Again -I didn't like the regression in speech which was my main

focus, but figured it was temporary.

The second to last day:

The last 2 days as Tanner continued to regress I tried lowering the

speak even more and on the last 2 days he was on 2 speak, 2 ProEFA, 1

ProEPA, 2 mainly gamma vitamin E...but the regression was still

there.

The last day:

The last day I'll never forget. Tanner stood outside in our driveway

ready to walk to our neighbor's house who drives him to school and he

went to say something to me and he opened his mouth...and nothing

came out. He groped and his face was a look of horror.

The next day I think was a Friday and I put him back on his 4 ProEFA

and 2 ProEPA and no extra vitamin E and figured he would be back in a

day or so. I can't remember if it was early that morning or late

that night that I began my search into " why " vitamin E would make

Tanner regress so much. At that point I wasn't even thinking of the

vitamin K. I joked to myself that if instead of mixing it with

megadosages of vitamin E they took my formula of fish oils and stuck

it in a Twinkie I would have been better off with a Speak Twinkie and

it still would have worked for Tanner. What was in this stuff that

took a formula that was so tried and true for years and for so many

others to make my 12 year old regress? It was that day that I

learned about hypervitaminosis...but everything I read had to do with

months of megadosages not days or weeks....but most everything

outside of one hospital in India that was treating children with the

rare hypovitaminosis E (vitamin E deficiency) which led to

hypervitaminosis E (vitamin E poisoning) had to do with adults -not

children.

One day, two days, three days later...painful weeks later he was

still not back and my worry turned into panic. It's been over a

month now and Tanner still isn't back to being himself. He appears

to have lapses on knowing how to say even simple sounds at times.

Yesterday at Epcot's food and wine festival he went to ask for a hot

chocolate and turned to me. He couldn't remember how to do the " h "

sound. Yesterday he couldn't remember how to say the " g " sound for

girl. Yesterday Tanner told me how hard it is to talk now. He used

to love the way he was -and now he's so frustrated. I already told

Tanner that I worked with him to teach him to talk once -if we have

to do it again we will.

It appears to me that the Speak has broke down pathways that have

been there for years for Tanner. My aunt who has her PhD in nursing

is horrified as well and says to her it sounds almost like what

happens to those with Alzheimer's -except in those cases parts of the

brain start dying and we hope for Tanner and the others like him it's

just that the pathways are blocked somehow. Thank God Tanner's not

stuck at the point he was at when still on Speak -and he has improved

slowly from there but I pray that this lapse thing he's going through

too is temporary -but who knows?

Check the archives - last week we had to work on the letters " B " " J "

and " K " in isolation...his lapses in simple sounds or words that he

has known for years is frightening. It feels like ice water going

through my veins when I think of what I may have done to him. That I

may have poisoned him and don't know if he'll ever be back 100% to

where he was prior. I think if only I knew about the signs of

vitamin poisoning prior. Even the " normal " ones like the vomiting

and the diarrhea and the headaches. I remember I took Tanner for a

haircut and was explaining to his hair stylist why Tanner

wasn't talking as well- told him about speak and at one point

said " but thank God at least Tanner didn't have a seizure "

stopped what he was doing and looked at me deadpan and said " it

doesn't work like that. Tanner could have had a seizure and you

never would have known it. He could have had one while he was

sleeping " What's worse -that I gave him that Motrin and let him

sleep for hours and hours when he got those horrible headaches and

I'll never know what happened to his poor body during those 2 weeks

or that I got more medical advice from Tanner's hair stylist then the

professional that led me to this? I still have not received any

advice on how to help Tanner from this point.

As many here know I had to go to Tanner's school to present to the entire school

why Tanner suddenly is having trouble speaking when he's been doing do well all

this time. The school thought I put him on a " new medication " Search under

" Tanner's magic plan today " This was the second time I had to do something like

this -the last being in kindergarten. Fortunately everyone that knows Tanner

has been so incredible with him. His teachers, friends, classmates at school,

neighbors, basketball team -everyone is rallying around Tanner to support him.

I wrote this post yesterday but guess it didn't post so today had

more to add. Last night Glenn and Dakota and one of Dakota's friends

went to Halloween Horror nights and me and Tanner went to Disney. I

wrote " honestly nothing scares me more than what speak did to my son

Tanner " . What does give me hope again is that he has improved to

where most of the time he is able to talk now. Tanner isn't happy

where he is- I'm happier than he is because I know how much worse he

was and thank God he isn't stuck there.

I have gone to a full packet of Threelac with Tanner today as that

has appeared to help. So will keep everyone posted. I am buying

probiotic drinks and there's even a probiotic chocolate I'm going to

try. (the chocolate flavor I tried and loved was sold out)

http://www.attunefoods.com/chocolate-wellness-bar/

Because nobody in my opinion has ever put their child on megadosages

of vitamin E and K before and nobody in my opinion has gone through

what Tanner and a few other of the children that had regressed on

Speak are going through before....there is that unknown....and that

to me is frightening.

Here are the results of this group from what was posted here. Think

around 7 positive, 2 neutral and 12 or 14 negative. Tanner's one of

the negative reports.

/links/Pharma_Omega_Spea\

k_reports_from_group_001224703760/

=====