Re: New (and improved) new pole for vitamin E

[Guest guest]

/surveys?id=2761577

OH NO!! After reading 's message I went to edit the poll to

make it more clear and it deleted all of the votes!!!! First of all

-I probably should have said for those that have children

that responded but thank you so much for sharing as it's clear you

tried everything (outside of what Elena just said) I've been trying to

figure this out for awhile because first I thought Tanner was

different in needing the equal amount of alpha to gamma. But then

when I asked people what brands they were using I heard the same

ratios of alpha and gamma (about equal) from Vitamin world or Vitamin

Shoppe (the high gamma which has equal alpha) Up till the vitamin E

anyway what worked for Tanner has been pretty much what worked for

the majority here. But Tanner has been tested and he does not have

metabolic issues, carnitine deficiencies, allergies, leaky gut,

celiac, or the need for a GFCF diet. I do know that there are those

who saw no difference with extra vitamin E after seeing surges with

fish oil and I'm curious if that's because (like with the fish oil)

you were using the wrong formula of vitamin E for your child?

For those using higher alpha with a bit of gamma -what brand?

Does anyone buy two separate bottles of vitamin E?!

In speaking to about this she said there is a sub group of

apraxic children that fit the profile you are talking about Elena.

It is possible that something else is needed for it to work but in

the meantime took her son to a PROMPT therapist and had

great results with that. If the oil therapy doesn't work you can

always find success the old fashioned way -longer years of therapy.

The oil therapy when it works just creates a bit of a short cut.

While I do know there are a few that got the oils to work after

working on the metabolic issues it really is not the norm. After

all apraxia always existed it just used to be rare and it's doubtful

that all those in the past with apraxia had all these metabolic

issues. This again is a sub group out of all those with apraxia.

There are many ways that are known to cause apraxia -injury or trauma

is one for example that is best known in adults -genetic is another

that was discovered more recently with the FoxP2 gene -and then there

are theories as to why all of a sudden the dramatic rise in the past

15 years or so of this previously unheard of and rare severe disorder

of speech that used to be " just " an impairment of speech.

Over the years we know without the higher adjusted vitamin E to the

formula the Omega 3/6 formula I have shared and adjusted over time

works for the majority with moderate to dramatic results. We never

really asked but since we all used different formulas of vitamin E

(unlike the Omega 3/6 aspect) I'm curious as to formula for vitamin

E as well since my son Tanner who is more typical of the majority

appears to need that 1/1 ratio of the alpha and gamma.

So who needs the higher alpha with a bit of gamma?

A. Younger children who also just began being supplemented with

Omega 3/6 oils

B. Those that have metabolic issues, carnitine deficiencies,

allergies, leaky gut, celiac, and the need for GFCF diets

C. The majority

D. The minority

(no this is not the poll - the poll is much easier to answer than

this!!)

This is the new poll just for the " responders "

For those already using the right formula of Omega 3/6 with success: What type

of vitamin E do you find the most success with for your child?

High alpha with a bit of gamma

About equal alpha to gamma

High gamma with a bit of alpha

I saw no change adding higher vitamin E

Can everyone participate in the new (and improved) new pole for

vitamin E (again... she asks sheepishly)

/surveys?id=2761577

Pretty please with (what can I say so many of you don't like sugar or even

honey)... fish oil on top?

Here it is again in case you missed it

/surveys?id=2761577

Let me know if you need me to post it again

=====

[Guest guest]

Sorry , didn't mean to mess up your poll. I just don't fit in

anywhere! *sniff* Even though our experiences are different than most on

this group I've found this group wonderful over the last 3 years!) For the

record we do use two bottles of vitamin E to get the higher alpha to gamma

ratio. D-alpha vitamin E IMO has significantly helped two of my kids, the

apraxic child and my speech delayed baby as well.

For those that care to hear what our use and response to fish oil/vit E and

" resolved " apraxia, here it is...

, I know at some point shortly after I joined this list we talked about

how my son seemed to be more pure apraxic, in the sense that he didn't have

the soft signs. We were also from an area where there is very little

apraxia, not a " hot spot " where it would be more likely to be an

environmental issue. I, and his doctors/therapists, really don't think

there is a gut connection for him. He's the most regular kid, eats a great

and varied diet and has no changes in anything even when he eats a lot of

" trigger " foods. He also breastfed for 3.5 years, so perhaps if he had some

deficiencies that helped his gut?

I also need to explain that my son has a separate language issue. At one

point this was a severe issue and it's been hard to tell at times if it is

the apraxia or the language issue that comes into play at any given moment.

At times he looks aphasic. He might know a word like " sink " and then when I

ask him to do put it " by the sink " he will answer, " what sink? " meaning

what is a sink. He has issues with understanding language, word recall, and

major issues with syntax or word order. He might have all the correct words

in a sentence, but he puts them in the wrong order. He also CLEARLY had a

significant motor planning issue. We have low VMPAC scores from age 3.11,

and much improved ones from age 6.2. He still has an occasional groping

moment, and if he is presented with a new multi syllable word you can see

the apraxia. An old example of a word he has now master would be

helicopter. He-ci-lop-ter, He-lip-top-ter, etc. With practice he gets these

words into motor memory and doesn't stumble as much as he used to.

I usually say that is a non-responder to fish oil, but he has

responded, just not necessarily in a desirable way. The first time we

started he may have responded? In the first few weeks he had more verbal

attempts and an increase in babbling. Why I say may is he also had just

started Prompt and since Deborah is such an amazing therapist she gave him

such huge confidence to try to talk. His prior experiences in therapy had

frustrated him into depression and silence. Had I been scientific I would

have not tried two new things at the same time.

I stopped fish oils when he got sick for a month, nothing serious, but he

was pretty miserable first with GI stuff, then with colds and repeat sinus

infections. He's never been as sick as that fall/winter. It was due to

starting preschool with other kids and unfamiliar germs. He had never been

a very sick baby/toddler and hadn't been in daycare to be exposed to things,

but he made up for it that fall! When we started fish oils again after

the holidays he had negative reactions. He got weepy, clingy, hyper and

emotional. I stopped oils and that negative response stopped.

About a year later I decided to give oils another try. He had been making

very slow, but steady progress with Prompt therapy. He was losing more

ground, but I was still pleased because I had learned to take him off a

timeline. He might make only 3 months progress in 5 months time, but it was

still progress! Our insurance required retesting very regularly so I have a

good paper trail of what his progress was like.

When I started fish oil again in May '07 we again had a " negative " side

effect. With one pill he was fine so I tried to up the dose. He got really

really hyper. It was most noticable at night. He just wouldn't settle down

and he and his brother played off each other and drove everyone nuts! At

this time my husband was living and working out of state so we moved in with

my parents. The boys were sleeping upstairs where my parents bedroom was

and the baby and I shared a downstairs guest room. My dad said ENOUGH! He

couldn't handle the rambunctiousness at night. I pleaded here and

suggested dosing everything just in the AM. (2 proefa, 1 proepa) so I did

that and the hyper bedtime issue resolved. He was probably more active in

the day, but it didn't interfere with anything. He didn't get the weepies

like before so I kept him on.

I also didn't see any improvements in speech or language. It was at this

time that he had made enough progress that his language issue really became

more clear. He was 5.8 and in almost two years of Prompt therapy he had

improved from 17-19 mo in speech production and expressive language and 26

mo in receptive language to around 2.9 yrs in speech production and around

3.4 yrs in both expressive and receptive language. This is when we

restarted fish oils. While I have no tests to measure it he continued on

this slow progress until September when I started vitamin E.

Initially I started with just 400 IU of nature made (I think, bought it at

albertson's) d-alpha. I noticed IMMEDIATE improvement in his articulation!

I didn't say anything to his SLP until she brought it up to me. She one day

said it's amazing, everything seems to be falling into place these last

couple weeks. He's catching up! I then told her about the vit E and she

was intrigued. I added 400 IU more for a total of 800 IU of alpha and the

surge continued. I can't remember when I started the gamma. I think it was

Nov. By then his improvement had leveled out. I have fiddled with the high

gamma, dropping it at times and adding it again, and I haven't noticed a

change. His mild motor apraxia in his fingers also resolved at this time.

In late Nov/early Dec he had more testing done at Prompt. We were moving and

we all wanted an updated picture of where he was. Here is his VMPAC result

(test only given twice.)

Verbal Motor Production Assessment (VMPAC)

Scores have improved in the past two years to more normal levels.

These are reflected in his improvement of motor coordination for

articulation.

2007 2005

General Motor control 100% 75%

Focal Oromotor Control 72%* 44%

Sequencing 82% 36%

Connected Speech and Language control 91% 37%

Speech Characteristics 100% 71%

*Focal Oromotor Control was consistently better on all subtests

except multiple and triple oromotor-phoneme movements

Similarly his language tests showed great improvement. He went from 3.4 in

expressive and receptive language to around 4.5. That was a year's

improvement in just 6 months! His speech production on the one word

articulation test is what soared! Remember he had been age 2.9 in May. He

was age appropriate in November! In six months he gained 3.3 years of

articulation!!! His SLP and I both know it wasn't just in six months, it was

primarily in just the two prior months which coincide with the start of

vitamin E. I believe 100% that vitamin E was the key to his amazing surge

and what got him to the basically " resolved " apraxia point where he is now.

The brand of high gamma I used initially was Nature's Bounty

http://www.drugstore.com/products/prod.asp?pid=79195 & catid=1682 It has 200

IU alpha and 200 IU gamma. When I added this I used one capsule of 400 IU

alpha and two of this to reach a total of 800 alpha and 400 gamma. Starting

in January I purchased Vitamin Shoppe's brand high gamma E. We had moved

and I now had a local source. prefers the Nature's Bounty because the

pill was easier to swallow, but I kept him on the Vit Shoppe to finish the

bottle. Then in May he started rebelling on taking anything and we stopped

all supplements for the summer and he hasn't regressed.

is also a kid that has never regressed. There was no one moment where

his speech and language went from normal and then dropped off like some

kids. He had no major childhood fevers or illnesses, but he did have a skull

fracture. I have always doubted that did anything. He didn't lose

consciousness, and the CT scan showed all swelling was on the outside of the

skull. He was 5 mo old and had no changes in behavior, no changes in motor

skills or babbling. He already didn't babble much before this happened, but

since I didn't have a speech typical child with my first (late talker,

resolved " overnight " around age 4 yrs - never had any speech therapy) and I

didn't hang out with others who had a baby the same age I didn't really

notice. I can look back at video and hear how silent he was though.

also doesn't regress when he misses therapy. In summers his SLP would go

ona 2-3 week vacation and sometimes he gained during that time, same with

the 2-3 week Christmas break, times of illness, and even the 2 months we

went without any therapy from Nov - Feb when we moved.

I doubt my daughter is apraxic, but she does have a speech delay. At 15

months she was tested by 's prompt therapist and was found to be just

below age appropriate in receptive language, but at only age 5 mo in

expressive and speech production. I had been worried for a while because

she only babbled in vowels and seemed to grope. She didn't have classic

oral apraxia signs, but then her brother's oral apraxia was always mild. She

can use straws and drink from a cup, but she absolutely cannot drink from a

spill proof sippy cup. She also used to put her chin to one side (I have

pictures of this if anyone cares to see) and also when she tries to chew on

one side she shifts her jaw over. There is no physical reason for this and

it stopped a couple months ago. I had started fish oil with her at 12

months and didn't see a change. I started vitamin E (just 400 IU alpha) in

addition to fish oil at 17.5 months. She started babbling more. She

started using consonants as well. Her speech therapist is always amazed

every time she sees her. She is still a bit delayed in artic, but following

a proper speech development path. My son was always weird. He would say

something in a way appropriate for a 5 yr old, but then not be able to do

something 2 yr olds should be doing. My daughter is now 2.1 yrs and still

delayed, but her language is through the roof. She understands EVERYTHING

and " speaks " in 8 or more word sentences with proper pronoun usage. The

problem is only family can understand her (I catch about 80-90%, unfamiliar

speakers almost none.) Her errors are now consistent, she always drops

endings, consistently substitutes one consonant sound for another, etc.

" Cat " is " Ta " or rarely " tat. " She pronounces many things the same way as

her older just late talking bother did ( = on, Tommy = Hommy.) There

are still sounds that are 100% lacking /k/ is one. I've even tried to use

Prompt for that and nothing. Oh and she craves her " meh-in " and won't let

me forget. When I take my pills at night she wants her fish oil and vitamin

e. She just chews both capsules, licks her lips, declares " mmmm, num! " and

tries to get me to give her more. The fish oil I can see liking, but the

vitamin e..well eww! I can't stand the feel/taste of that!

I wonder, had we not supplemented would my daughter be diagnosed as

apraxic? She presented more classically than my son since she doesn't have

the language issues he has. Right now I'm really not that worried about

her. I've seen such great progress, and I know we have an excellent Prompt

therapist available too. Her EI SLP is bringing in another SLP more

familiar with motor planning to look at her and cotreat this week. 's

Prompt therapist saw her casually and said if her progress slows she wants

to see her in 6 mo.

I don't know if that makes us a responder to the fish oil/vitamin E

protocol. Is there anyone else who just seems to respond to the E, but not

the fish oil? I've still done the fish oils because overall they are

healthy to give the kids and myself. I'd be curious to see what 's labs

look like, but don't really have the $ to shell out on testing and finding a

doctor who would order these tests. Perhaps we will take that direction if

his language development hits a plateau. He's now, since Nov of last year,

testing age appropriate on some language tests. He clearly still has

issues, but his SLP is a bit stumped on what test to use that will reflect

those. We're waiting to hear from insurance if they are going to ask for a

test (they prob will after 15 sessions - he started with this therapist in

June 1x/wk so we haven't hit that point yet.) Oh, and for anyone wondering

we get insurance coverage for therapy thanks to his skull fracture. So far

we've had luck using a medical code. We don't think that is what caused his

issues, but we can't prove it didn't.

Miche

On Sun, Sep 14, 2008 at 5:29 AM, kiddietalk <kiddietalk@...> wrote

>

>

> /surveys?id=2761577

>

> OH NO!! After reading 's message I went to edit the poll to

> make it more clear and it deleted all of the votes!!!! First of all

> -I probably should have said for those that have children

> that responded but thank you so much for sharing as it's clear you

> tried everything (outside of what Elena just said) I've been trying to

> figure this out for awhile because first I thought Tanner was

> different in needing the equal amount of alpha to gamma. But then

> when I asked people what brands they were using I heard the same

> ratios of alpha and gamma (about equal) from Vitamin world or Vitamin

> Shoppe (the high gamma which has equal alpha) Up till the vitamin E

> anyway what worked for Tanner has been pretty much what worked for

> the majority here. But Tanner has been tested and he does not have

> metabolic issues, carnitine deficiencies, allergies, leaky gut,

> celiac, or the need for a GFCF diet. I do know that there are those

> who saw no difference with extra vitamin E after seeing surges with

> fish oil and I'm curious if that's because (like with the fish oil)

> you were using the wrong formula of vitamin E for your child?

>

> For those using higher alpha with a bit of gamma -what brand?

> Does anyone buy two separate bottles of vitamin E?!

>

> In speaking to about this she said there is a sub group of

> apraxic children that fit the profile you are talking about Elena.

> It is possible that something else is needed for it to work but in

> the meantime took her son to a PROMPT therapist and had

> great results with that. If the oil therapy doesn't work you can

> always find success the old fashioned way -longer years of therapy.

> The oil therapy when it works just creates a bit of a short cut.

> While I do know there are a few that got the oils to work after

> working on the metabolic issues it really is not the norm. After

> all apraxia always existed it just used to be rare and it's doubtful

> that all those in the past with apraxia had all these metabolic

> issues. This again is a sub group out of all those with apraxia.

> There are many ways that are known to cause apraxia -injury or trauma

> is one for example that is best known in adults -genetic is another

> that was discovered more recently with the FoxP2 gene -and then there

> are theories as to why all of a sudden the dramatic rise in the past

> 15 years or so of this previously unheard of and rare severe disorder

> of speech that used to be " just " an impairment of speech.

>

> Over the years we know without the higher adjusted vitamin E to the

> formula the Omega 3/6 formula I have shared and adjusted over time

> works for the majority with moderate to dramatic results. We never

> really asked but since we all used different formulas of vitamin E

> (unlike the Omega 3/6 aspect) I'm curious as to formula for vitamin

> E as well since my son Tanner who is more typical of the majority

> appears to need that 1/1 ratio of the alpha and gamma.

>

> So who needs the higher alpha with a bit of gamma?

>

> A. Younger children who also just began being supplemented with

> Omega 3/6 oils

> B. Those that have metabolic issues, carnitine deficiencies,

> allergies, leaky gut, celiac, and the need for GFCF diets

> C. The majority

> D. The minority

>

> (no this is not the poll - the poll is much easier to answer than

> this!!)

>

> This is the new poll just for the " responders "

> For those already using the right formula of Omega 3/6 with success: What

> type of vitamin E do you find the most success with for your child?

>

> High alpha with a bit of gamma

> About equal alpha to gamma

> High gamma with a bit of alpha

> I saw no change adding higher vitamin E

>

> Can everyone participate in the new (and improved) new pole for

> vitamin E (again... she asks sheepishly)

> /surveys?id=2761577

>

> Pretty please with (what can I say so many of you don't like sugar or even

> honey)... fish oil on top?

>

> Here it is again in case you missed it

> /surveys?id=2761577

>

> Let me know if you need me to post it again

>

> =====

>

[Guest guest]

I just want to take the time to thank the 5 people (should I include

myself because if not then it's 4) that answered my new and improved

new poll. I know I deleted some of your votes by accident when I

went to fix the poll to make it just for responders and I am so sorry about

that -but please answer again and if you didn't answer yet now's a

great time!

This poll is just for those that responded to the fish oils we know here.

So three cheers for

mommydowd@...

r_severson@...

rxflwrs@...

wasalo@...

Yay to you!!!

Come on 10,000 others -there is this new product out. We know the Omega 3/6

is what has worked for the majority for years -but again I have

questions on the vitamin E. We all know our own child and what works

for them. That's all you need to know to answer. Did one ratio of

vitamin E work better or like some here did you see no response.

I've had a few emails both private and here about negative results on

vitamin E too but put that as a " no change " because if I change the

poll again I'll delete all (?) of the (4 outside of mine) votes at

the poll.

Question

For those already using the right formula of Omega 3/6 with success:

What type of vitamin E do you find the most success with for your

child? If we want to make sure we get the best formula for the

majority we have to ask the majority -and that's us -or at least 10

of us. If you have a child that responded to the fish oil formula we

know to work and have him or her on vitamin E as well -what is the

ratio of alpha to gamma?

High alpha with a bit of gamma

About equal alpha to gamma

High gamma with a bit of alpha

I saw no change adding higher vitamin E

Responses

Choices Votes % 1 reply Respondents

High alpha with a bit of gamma 2 40

rxflwrs@...

wasalo@...

About equal alpha to gamma 2 40

r_severson@...

kiddietalk@...

High gamma with a bit of alpha 1 20

mommydowd@...

/surveys?id=2761577

/surveys?id=2761577

and because third time's a charm

/surveys?id=2761577

=====

[Guest guest]

,

Just back from vacation. If it helps your cause we saw:

More pleantness but not much else on yasoo and on Dr. Ron's. Both at

400 iu.

Noticeable calmness and cooperation on Country life 200 iu.

Global improvement on Twin Labs 400 iu but had to stop due to bleeding.

Liz