Re: Speak supplement ?

September 28, 2008

Jenn - If I were you I would go ahead and try the SPEAK supplement.

Yes, the trial has just started (I know cuz I'm in it) but that

aside, the research done by Dr. shows that it's the

combination of things (esp. Vit E and the fish oil) that make the

difference. It's more than just the EPA or EFA. I've done fish oils

with my son for years and he is still nonverbal (but also autistic so

I have a bigger issue than the one you're dealing with).

Good luck!!!

>

> Hello everyone, I am new to the board here but have been reading

posts

> for a while now. I am so happy to have found a group like this to

> interact with. My son is 2 1/2 years old and recently diagnosed with

> verbal apraxia. He is at normal and above normal in all other areas

> but his speech. I am debating on whether to start him on the two

> supplements from Nordic naturals that i have read a lot about(i

think

> its 2 capsules ProEFA and 1 capsule of ProEPA or just try the new

> Speak supplement by PharmaOmega. I started giving him nordic

naturals

> children's DHA about a month ago and shortly after starting it he

did

> have improvements. he finally started saying mama and dada which we

> are so thrilled about. Those are the sweetest words I have ever

> heard. He is also in speech therapy once a week which I dont think

is

> really doing too much. So, i have been struggling between what to

> give him. the two supplements or the speak supplement. Has the

speak

> supplement trial just started? i have been trying to find early

> results from it but have not come across any yet. Just wondering if

> any of you mom's in a similiar situation have any advice for me. I

> greatly appreciate any thoughts. Thank you and bless you all.

> jenn

>

September 28, 2008

Jen I would start with the ProEFA or an oil like it (EyeQ or Efalex)

until we learn the research behind why the high level of vitamin E

in speak. It may just be a good formula for those few that do have a

vitamin E deficiency due to fat absorption issues. We do not yet

know what percentage of apraxic children that is.

no research has been done yet by Dr. to

validate the level of vitamin E that is in Speak. Many of us here

did have positive results with a bit of extra vitamin E but as I

posted here since 2003, supplementation of fish oils does create a

vitamin E deficiency.

" 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

Vitamin E however is in the ProEFA and not all do well on mega

dosages that are above upper tolerable levels for children. My son

regressed on the mega dosage of vitamin E.

http://ods.od.nih.gov/factsheets/vitamine.asp#h7

All we know from this group is that most that supplement with fish

oils do well with adding a bit of extra vitamin E - " bit " being

clearly subjective. I do know most of us used 200/200 or 400/400

based upon my first message to this group about raising the E.

/message/50404

=====

September 28, 2008

just wanted to clarify that I am waiting to hear from the

company what research the dosage of vitamin E in Speak was based on

as I have requested that information. If Dr. has done

research on it already I am not aware of it.

=====

September 28, 2008

>

There is as much controlled research on vit E in apraxia...as there

is on fish oil and apraxia. AKA there is none. This is a condition

that is sadly overlooked and critically needs controlled studies. The

best dose has not yet been determined scientifically - for both DHA,

EPA and the tocopherols. Many kids will need more than just this

cocktail, and of course nothing replaces the needed speech and

occupatonal therapy. However much less ST and OT will ultimately be

needed for the kids who respond. Given the lack of science in all of

this, eveyone will need to make decisions that are best for their own

children, until controlled trials ard done. We are likely a decade

away from " recommendations " even if I got a study up and running

now. Given the dramatic impact on neurological function my son and

many others described when vit E was added to the omega 3, I felt an

obligation to share this information with families, as a mother who

literally witnessed what our metabolic specialist called " the

awakening " . Titrating to effect is a good way to go. The

improvements are not subtle in kids who respond, and are definitely

notable within 1-2 months, typically even faster than that. There is

clearly a dose-dependent response to alpha tocopherol supplements. I

am sure there will be children for whom this combo is not the best,

and everyone is alittle different. This is why one needs to decide

for yourself. The dose of vit E in 2 capsules of Speak is a very

safe level. The benefit to speak is that it has vit K in it...to

protect against impact of vit K by vit E...and really one potential

adverse effect I worry about with vit E supplements. Both omega 3,

alpha and gamma tocopherols impact different aspects of the clotting

process - alpha tocopherol can impact vit K (especially if vit K

deficient to begin with, which may occur simply from a course of

antibiotics that knocks out the bacterial in the gut that normally

makes vit K)...or in those with fat malabsorption...not absorbing fat

soluble vitamins. Those of you who have followed my posts over the

last 3 years are familiar with our story, that has been repeated by

many. All the symptoms of global apraxia (speech, coordination, low

tone, sensory issues and altered pain sensation) overlap those

symptoms caused by known conditions that involve altered vit E

bioavailability. The mechanism of apraxia is unknown. This is a key

void in our knowledge base since it is hard to design the best

approach to a disorder when you don't know what is causing it. I am

trying to pull pieces together from this very complicated puzzle.

The tolerable upper limit for alpha tocopherol that are published,

are not based on any science, and are meant for the general

population, which is not our children with apraxia. It is absurd how

random the upper tolerable limits are, but it is what it is. This

means, again...we have no real information to go by. Rats were given

30,000 mg of alpha tocopherol, (so imagine the mg/kg dose compared to

humans - just not relevant) and above that level there was impact on

vit K. Wanting a 30X cushion, 1000 mg, or 1500 iu was arbitrarily

picked as the tolerable upper limit. The kids' doses were even more

random! They were just downsized for smaller kid size. Even though

there is evidence that kids have an even greater need for vit E. What

we do know is that a vit E deficiency dramatically affects

neurological function in children, while adults can tolerate low vit

E for decades before symptoms develop. The developing brain is very

susceptible to low vit E and other nutritional deficiencies. So if

your child is responding to vit E, this is something you need to

figure out for yourself. Vit E is also very important to protect the

omega 3 in our cell membranes. So malabsorption is not the only way

to a problem with vit E bioavailability. Increased inflammation for

whatever reason will consume vit E. Inflammation and oxidative stress

will also rapidly destroy the omegas in the cell membranes (ie make

the rancid), and vit E protects against this. This is not

theory...this is fact. We don't know how this plays out in apraxia,

however. Symptoms of vit E deficiency become permanent over 5-10

years, while they are reversible early on. Treatment for neurological

symptoms of vit E disorders is in the range of 100-200 mg/kg/day -

far exceeding the upper tolerable limits in children. It is based on

that information that I have pushed the dose higher in my son, and

watched neurological symptoms melt away before my eyes. Others have

followed this and seen similar results. Again, my astonishment and

the developing story is in the archives. There is alot of information

on vit E in the links. Hopefully it is still there. I have tried to

put out what information is there. A great sight is the Linus ing

Institute for more information. Apraxia is a serious issue, and one

we really need to solve for our children, as the clock is ticking. It

is because of the ticking clock that I have shared all this

information as I figured it out along the way...because I would not

want a child to suffer from irreverble neurological symptoms if it

could have been avoided. I am a clinical scientist and a firm

believer in evidence-based medicine. But given this catch-22, I

wanted to get this information to families while I tried to get

funding to validate the science. Until studies are done, there are no

recommendations to be made. However even with fish oil, there are no

recommendation for apraxia. It is unfortunate that parents are left

to manage this significant medical problem on there own and by

exchanging information with other parents rather than having a

roadmape that is based on science with the guidance of a medical

professional. Again, I am really trying to change this. In the

meantime there is a new option for families with Speak - that

families can use or not. This cocktail can be made in your kitchen

purchasing individual ingredients as well. Or you can wait for the

science to validate this. For my own son...I couldn't wait for the

science - even though I may ultimately be the individual it takes to

push the science forward. I KNOW how important this is, and I know

what it is like to be saddened by what apraxia brings into ones

family-life. I was also empowered to find out more information when

it was lacking in the medical professional, and clearly this forum

has been a wonderful exchange. I have learned so much from so many of

you. But ultimately I didn't have 10 years to wait and watch my son

suffer with severe apraxia when there was a solution for him. Given

lack of long-term safety data, we are watching very closely for signs

of bruising and bleeding. He is doing very well, on doses well above

the upper tolerable limit. I think everyone should stay at or below

those levels, or with whatever you feel comfortable with at or below

1500 iu/day, unless you are working closely under the supervision of

a phsician who is aware of this condition - someone like Marilyn

Agin. There are a growing number for MDs in the northern california

area who are seeing kids with apraxia, and those responding to higher

doses of vit E, and we are trying to funnel many of the families to

the same MDs (allergist, metabolic specialist, GI doc,

neurodevelopmental behavioralist etc)...because pattern recognition

is important. Once they have seen more than 1 or 2 of these children,

and watched them improve, more kids will be set on the right path.

But in the suspeptible individual...even a single dose of motrin can

cause a significant bleed - uncommon but reported. A single dose of

antibiotics can cause a serious and sometimes life-threatening

allergic reaction. Nothing is without risk. It is a risk-benefit

analysis that we all need to weigh. Apraxia is a serious and life-

altering condition.

For those of you new to apraxia, I am sorry for all the confusion. My

suggestion would be to start slow with speak if you decided to go

down this path. 2 capsules is equivalent to 3 capsules of nordic

natural combo omega 3/6/9 + EPA, plus it give 500 iu vit E. This is a

very safe place to start. If you are not comfortable going higher,

you can still see if your child responds. Or you can go the nordic

natural route and add vit E. There is even less safety information on

gamma tocopherol as there is on alpha tocopherol, so we are again in

uncharted territories. But for the majority of families I have been

in touch with, there was a dose-dependent response linked to alpha

tocopherol with improvements in speech, coordination and muscle

tone...and this makes sense scientifically given what is known about

the effects of alpha tocopherol in the brain.

Hopefully some of the families who have been around for a while and

remember ph's story as it was unfolding, will give you some

insight as well. For the few that have not responded to vit E added

to fish oil, there's a critical mass of kids who have done well. But

until controlled studies are done, this debate will not come to

rest. I have given you all the information I have, so until I have

more data, I am no longer going to post. I wish all of you the very

best, and hope that those how have a child who sounds like

ph...and I have posted his symptoms clearly on so many posts to

help families recognize the apraxia picture...ie this is so much more

than " just a speech disorder " ...I hope you find your way to recovery

as we have.

-

-------------------------------------------------------------

> just wanted to clarify that I am waiting to hear from the

> company what research the dosage of vitamin E in Speak was based on

> as I have requested that information. If Dr. has

done

> research on it already I am not aware of it.

>

> =====

>

September 28, 2008

, thank you so very much for your work and outreach. My

daughter seems to have many of the symptoms you describe with ph.

I'm crossing my fingers (quietly, desperately) that she will have some

of the same success.

Very Best

September 29, 2008

Hi - Can I ask in what way your son regressed on the high dose

of E? This way if I see the same thing in my son I might have a

better guess as to what is causing it. Thanks!

>

> Jen I would start with the ProEFA or an oil like it (EyeQ or Efalex)

> until we learn the research behind why the high level of vitamin E

> in speak. It may just be a good formula for those few that do have

a

> vitamin E deficiency due to fat absorption issues. We do not yet

> know what percentage of apraxic children that is.

>

> no research has been done yet by Dr. to

> validate the level of vitamin E that is in Speak. Many of us here

> did have positive results with a bit of extra vitamin E but as I

> posted here since 2003, supplementation of fish oils does create a

> vitamin E deficiency.

>

> " 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

>

> Vitamin E however is in the ProEFA and not all do well on mega

> dosages that are above upper tolerable levels for children. My son

> regressed on the mega dosage of vitamin E.

> http://ods.od.nih.gov/factsheets/vitamine.asp#h7

>

> All we know from this group is that most that supplement with fish

> oils do well with adding a bit of extra vitamin E - " bit " being

> clearly subjective. I do know most of us used 200/200 or 400/400

> based upon my first message to this group about raising the E.

>

/message/50404

>

> =====

>

September 29, 2008

,

I don't post much, but read a ton and wanted to thank you for all you

have done and are doing currently. Without reading your posts about

carnitine deficiency, I would have never thought to ask to have my

son's bloodwork checked...even though he had bloodwork done routinely

for what we thought was a seizure disorder. Turns out, once we

addressed the metabolic defiencies - carnitine, CoQ10, B vits,

folate....there were no seizures at all. We learned on an EEG that

the " seizures " were not seizures but still were neurological events

that disappeared once these were addressed. (His carnitine was

bottomed out! His neuro was shocked.)

He has since responded to the N/N 3.6.9 and we hope to see response

to adding vit E through Speak.

Thank you, thank you, thank you. Please don't stop being a part of

our group, even if you don't post as regularly. I'm thankful to have

found your posts and information. I'm newer, and off to find your

posts about ph and his clinical symptoms.

Sincerely,

September 29, 2008

, thanks so much for staying connected and sharing your insight

on the SPEAK supplements, now that a few of us have been able to try

them. In the interest of providing what I'm sure is valuable feedback

to you and to the group, I'd like to (gently) share that my experience

so far has been disappointing.

My daughter Evoni (20 mos) has been taking 2 SPEAK caps per day for 8

days now. Prior to starting SPEAK last Monday, we had started her on

2x day Omega 369 (for 10 days); the day before we started SPEAK we

managed to squeeze in one EPA in addition to the 2x Omega 369.

Almost immediately after starting the SPEAK, Evoni lost all the new

babbling and new mouth play that she acquired, to our delight, after

starting the Omega 369. She has also become extremely emotional and

erratic, weeping and sobbing without apparent reason (a type of

genuine non-pain induced crying I have never before heard from her),

and she sweats uncontrollably. Her sensory issues have become much

more pronounced -- which also occurred during the first 3-4 days of

the Omega 369 but quickly dissipated.

More significantly, she seems to experience small but somewhat

frequent seizures of varying force. She has no history of seizures

that I'm aware of. Her eyes roll up and she falls to the ground and

spasms. Other times, she starts to spasm when she tries to come to a

standing position and is unsuccessful pulling up (she does have

hypotonia) and just stays on the floor spasming.

I'm concerned that the Vitamin E dosage or the Vitamin K are

contributing to her regression. Do you have any thoughts as to what

components in SPEAK might be causing this outcome? I had intended on

waiting the side-effects out to give the product a respectable chance

to do its thing. However, the seizures have me extremely concerned and

indicate to me that, for my child, there is a toxic element to the

supplement. Darn! I really had my hopes up for this. Have you received

any similar feedback?

Thanks

> >

>

> There is as much controlled research on vit E in apraxia...as there

> is on fish oil and apraxia. AKA there is none. This is a condition

> that is sadly overlooked and critically needs controlled studies.

September 29, 2008

Hi ,

We didn't have any seizures or signs of seizures like the other 3

families that just posted but Tanner is 12 years old and 5 foot 6

inches tall.

Tanner started on Speak at 6 capsules plus I gave him 4 capsules of

the high gamma tocopheroal because I was so afraid of regression as

he did any time I attempted to raise the level of alpha E -so with

the 1.500 IUs of alpha tocopheroal and the 600 mg of gamma

tocopheroal plus the 800 extra of each he was on what I was not aware

a crazy too high dosage of vitamin E. For 5 days he was on that with

no regression -but no surge either. On the 6th day he woke up at 4

AM and was vomiting pretty much all morning with loose stools too. I

thought he had a bug and kept him home from school and didn't give

him any Speak or anything else. As the day went on he seemed better

and even started eating again and seemed fine. I gave him only 3

Speak that day.

The next morning I only again gave him 3 Speak and nothing else. He

went to school and seemed fine in the AM but the school called after

lunch -it was a hot day and Tanner was outside playing basketball and

he felt like he was " going to puke " so I went to school and picked

him up thinking once again it just had to do with the fact he had

been sick the day before. And perhaps that is all it was. On the

way home from his school I spoke to and she said only give

him the Speak and not the extra vitamin E anymore. Tanner's

regression started once I just put him onto the pure Speak. His

speech got what I call " bumpy " pretty rapidly which is our first sign

of regression for him and I realized the dosage or formula of vitamin

E was all wrong for him.

For the next week or so I put him on 4 Speak with 2 high gamma from

Vitamin World which slowed the regression down -but each day it was a

bit worse. I know -why did we continue? Tanner wanted to try it as

he was excited too about trying Speak. We were giving it time and I

thought we could figure it out. I went out and bought an almost pure

gamma but that seemed to make things even worse. Count another 3 or

4 days into trying different ratios of gamma with the formula. I

even brought it down to 2 Speak, 2 ProEFA, 1 ProEPA, 2 of the almost

pure gamma E...and one day with the high gamma...so much for making

things easier!

On the day we decided to stop (Tanner asked to stop) Tanner was

standing out in our driveway wanting to tell me something before he

left for school. He opened his mouth and started groping but nothing

was coming out. Even just writing this now it horrifies me that I

let it go on that long. He seemed apraxic again for the first time

in years. Later that day I had a school meeting and the teacher told

me that Tanner who is usually " talkative " in school with everyone

didn't say a word almost all day. He became very quiet as he is very

aware of his speech. The next day we went back to 4 ProEFA and 2

ProEPA no vitamin E at all. but it took days till he was anywhere

near where he was before and he's not 100 percent back in speech yet

but I am not sure how long the vitamin E stays in the body.

On one of the next days we went on a class trip and I drove to the

Indian River (where I had to drag a net through God knows what and

found out later there are " spotted eels "

http://www.softscuba.com/pix/Altriethspottedeel.jpg in the Indian

River lagoon!!!) with Tanner and other boys and girls in his class

and while everyone was talking....I mean we found jelly fish and

shrimp and baby flounder and a blow fish and a pipe fish -stuff that

made me cringe for sure...Tanner was for the most part quiet. Not

saying much of anything. He laughed -just didn't talk. On the way

home 2 of the boys in my car asked Tanner why he was so quiet and he

just shrugged.

Clearly Speak is not the formula for Tanner. Based on what I read

about vitamin E (which I have to say I didn't explore until after

Tanner's regression unfortunately) I'm not comfortable keeping my son

on any type of mega dosage of vitamin E for extended periods of time

anyway. He tested normal in vitamin E and clearly regressed when put

on a high dosage. I searched under " hypervitaminosis E " and while

it's rare - it's a great concern to me. While some may not respect

the dosages set by some organizations -the dosage of vitamin E in

just 2 capsules of Speak is over the tolerable daily upper limit of

dosing for infants to 8 year old children according to the Food and

Nutrition Board of the Institute of Medicine and the dosage of

vitamin E in 4 to 6 capsules of Speak is over to 5 times over the

tolerable daily upper limit of dosing for infants to 18 year olds

according to the Food and Nutrition Board of the Institute of

Medicine

http://ods.od.nih.gov/factsheets/vitamine.asp#h7

Of course there is nothing wring with vitamin E but you should

consider that for those of us that have used fish oil therapy we have

found that we use months or even years of daily-dose regimen. Again

from what I have read too much vitamin E can lead to hypervitaminosis

E which is toxic to our body with prolonged use and I read things

about myopathies, myalgia, necrosis -I'm sure they are all rare but

I'm sure giving children/preschool children high levels of vitamin E

isn't the norm either. Both vitamin E and vitamin K are forms of

vitamins we call fat-soluble vitamins (the rest are Vitamin A and D).

I've read that fat soluble vitamins are metabolized and hydrolyzed

and stored in the liver. I was told that the dosage of vitamin E in

Speak is not based upon the findings in this group but I was told

it's based upon science. For my own research on my own son it's a

thumb's down. Perhaps it will work for some of you but I'd run it

past your child's doctor.

I did not read anything about seizures being linked to high dosages

of vitamin E -just the other things. But for sure I'm not a vitamin

E expert. I'm just a Tanner expert.

=====

September 29, 2008

I find it quite alarming that there are now 3 cases of children

experiencing some type of " seizures " or " seizure=like " in my

case...how would we as parents know if our children are at risk for

these kind of experiences. I am absolutely sick to my stomach

thinking that I may have induced seizures in my child. Shouldn't

there be a way to screen if our children have a true vitamin E

deficiency before taking these supplements with a high level of

vitamin E. I find it it too unlikely that these 3 cases are just

coincidences....

> > >

> >

> > There is as much controlled research on vit E in apraxia...as

there

> > is on fish oil and apraxia. AKA there is none. This is a

condition

> > that is sadly overlooked and critically needs controlled studies.

>

September 29, 2008

Wow, . That's quite a story, and a bad experience. I hope your

son gets back to his status quo soon. I assume you communicated this

story to PharmaOmega and/or Dr. . Did the company ever

post/publish a comment regarding your concerns as you mentioned they

were supposed to?

I am up to 4 SPEAK capsules per day for my 6 year old. So far, I have

seen no issues with it...no seizures, no regression... although he

was very emotional yesterday and again this morning, but I was

forewarned that might happen, and come to think of it I have seen

loose stools but not in scary amounts. Being that he is nonverbal, I

won't have anything to compare the before and after to, as far as

regression in speech as you have seen in your son. I did read up on

the hypervitaminosis E that you mentioned and I must admit I am

spooked by it but I hate to give up on this supplement after only

giving it for a week.

I read that from others here on this board that they are seeing

positive things so perhaps each child is reacting to it differently.

(Sort of like mb12 injections, some kids speak while on this, my son

gets hyper/irritable and does not speak.) I don't have time to search

thru all the archives here, but isn't it true that there is anecdotal

evidence from other families on this board that the fish oil/vit E

combo was great for their children? Perhaps it is most effective in

those children who have a fat malabsorption problem.

>

> Hi ,

>

> We didn't have any seizures or signs of seizures like the other 3

> families that just posted but Tanner is 12 years old and 5 foot 6

> inches tall.

>

> Tanner started on Speak at 6 capsules plus I gave him 4 capsules of

> the high gamma tocopheroal because I was so afraid of regression as

> he did any time I attempted to raise the level of alpha E -so with

> the 1.500 IUs of alpha tocopheroal and the 600 mg of gamma

> tocopheroal plus the 800 extra of each he was on what I was not

aware

> a crazy too high dosage of vitamin E. For 5 days he was on that

with

> no regression -but no surge either. On the 6th day he woke up at 4

> AM and was vomiting pretty much all morning with loose stools too.

I

> thought he had a bug and kept him home from school and didn't give

> him any Speak or anything else. As the day went on he seemed better

> and even started eating again and seemed fine. I gave him only 3

> Speak that day.

>

> The next morning I only again gave him 3 Speak and nothing else. He

> went to school and seemed fine in the AM but the school called after

> lunch -it was a hot day and Tanner was outside playing basketball

and

> he felt like he was " going to puke " so I went to school and picked

> him up thinking once again it just had to do with the fact he had

> been sick the day before. And perhaps that is all it was. On the

> way home from his school I spoke to and she said only give

> him the Speak and not the extra vitamin E anymore. Tanner's

> regression started once I just put him onto the pure Speak. His

> speech got what I call " bumpy " pretty rapidly which is our first

sign

> of regression for him and I realized the dosage or formula of

vitamin

> E was all wrong for him.

>

> For the next week or so I put him on 4 Speak with 2 high gamma from

> Vitamin World which slowed the regression down -but each day it was

a

> bit worse. I know -why did we continue? Tanner wanted to try it as

> he was excited too about trying Speak. We were giving it time and I

> thought we could figure it out. I went out and bought an almost

pure

> gamma but that seemed to make things even worse. Count another 3 or

> 4 days into trying different ratios of gamma with the formula. I

> even brought it down to 2 Speak, 2 ProEFA, 1 ProEPA, 2 of the almost

> pure gamma E...and one day with the high gamma...so much for making

> things easier!

>

> On the day we decided to stop (Tanner asked to stop) Tanner was

> standing out in our driveway wanting to tell me something before he

> left for school. He opened his mouth and started groping but

nothing

> was coming out. Even just writing this now it horrifies me that I

> let it go on that long. He seemed apraxic again for the first time

> in years. Later that day I had a school meeting and the teacher

told

> me that Tanner who is usually " talkative " in school with everyone

> didn't say a word almost all day. He became very quiet as he is

very

> aware of his speech. The next day we went back to 4 ProEFA and 2

> ProEPA no vitamin E at all. but it took days till he was anywhere

> near where he was before and he's not 100 percent back in speech yet

> but I am not sure how long the vitamin E stays in the body.

>

> On one of the next days we went on a class trip and I drove to the

> Indian River (where I had to drag a net through God knows what and

> found out later there are " spotted eels "

> http://www.softscuba.com/pix/Altriethspottedeel.jpg in the Indian

> River lagoon!!!) with Tanner and other boys and girls in his class

> and while everyone was talking....I mean we found jelly fish and

> shrimp and baby flounder and a blow fish and a pipe fish -stuff that

> made me cringe for sure...Tanner was for the most part quiet. Not

> saying much of anything. He laughed -just didn't talk. On the way

> home 2 of the boys in my car asked Tanner why he was so quiet and he

> just shrugged.

>

> Clearly Speak is not the formula for Tanner. Based on what I read

> about vitamin E (which I have to say I didn't explore until after

> Tanner's regression unfortunately) I'm not comfortable keeping my

son

> on any type of mega dosage of vitamin E for extended periods of time

> anyway. He tested normal in vitamin E and clearly regressed when

put

> on a high dosage. I searched under " hypervitaminosis E " and while

> it's rare - it's a great concern to me. While some may not respect

> the dosages set by some organizations -the dosage of vitamin E in

> just 2 capsules of Speak is over the tolerable daily upper limit of

> dosing for infants to 8 year old children according to the Food and

> Nutrition Board of the Institute of Medicine and the dosage of

> vitamin E in 4 to 6 capsules of Speak is over to 5 times over the

> tolerable daily upper limit of dosing for infants to 18 year olds

> according to the Food and Nutrition Board of the Institute of

> Medicine

> http://ods.od.nih.gov/factsheets/vitamine.asp#h7

>

> Of course there is nothing wring with vitamin E but you should

> consider that for those of us that have used fish oil therapy we

have

> found that we use months or even years of daily-dose regimen. Again

> from what I have read too much vitamin E can lead to

hypervitaminosis

> E which is toxic to our body with prolonged use and I read things

> about myopathies, myalgia, necrosis -I'm sure they are all rare but

> I'm sure giving children/preschool children high levels of vitamin E

> isn't the norm either. Both vitamin E and vitamin K are forms of

> vitamins we call fat-soluble vitamins (the rest are Vitamin A and

D).

> I've read that fat soluble vitamins are metabolized and hydrolyzed

> and stored in the liver. I was told that the dosage of vitamin E in

> Speak is not based upon the findings in this group but I was told

> it's based upon science. For my own research on my own son it's a

> thumb's down. Perhaps it will work for some of you but I'd run it

> past your child's doctor.

>

> I did not read anything about seizures being linked to high dosages

> of vitamin E -just the other things. But for sure I'm not a vitamin

> E expert. I'm just a Tanner expert.

>

> =====

>

September 29, 2008

Message # 53124 lists labs for apraxia to be considered. If is

right and it is the nonfat malabsorbers who may be having difficulty

I would think, as a layperson, getting the fat malabsorption test

would be a priority. These children are not all the same, everything

carries with it a risk, and Dr. provided as much info. to all

of us as is possible at this point. We are on our own to get needed

tests, make supplement decisions, etc. This is uncharted territiry

and we are all adults. Regression stories are heartbreaking but there

are things you can do to make a best guess if this supplement even

applies to your kid. I ordered Speak. The truth is when ordering I

was not sure if I'd give it to the kids but as a known celiac and fat

malabsorber I figured it may, in small doses, be good for me to get

what I need so I spent the $. For my kids, the one thing I still have

not done is fat malabsorption tests. I have the Rx, and the cans,

just never did it. I won't be giving it until I get those results.

I think you could do a man on the street interview and no one would

tell you to wait out the siezure thing.

Lastly, some people are mentioning an extreme fishy smell while

others are not. I'd check for rancidity. That could happen with any

fish oil and is not specific to Speak. Refrigeration upon opening may

help.

September 29, 2008

I too find this quite alarming. Christian has not had any more seizures. Just

the one with the really high fever. I have been beating myself up about this

since it happened thinking that maybe it was me that caused it by giving him the

supplement. The truth is with that is that we may never know. I am fearful of

giving him anything at this point. I am going to give his system a break and

see what happens.

Yvette

From: seeramona <lorirosen@...>

Subject: [ ] Re: Speak supplement ?

Date: Monday, September 29, 2008, 8:40 PM