Re: verbal apraxia?? --- Dana pls help

[Guest guest]

Toni, I've been using the purely -E...you might be able to use it again. I don't see sesame on the label. Only red palm, pumpkin seed, wild rosemary and sunflower. Maybe they changed ingredients?-Tammy To: mb12valtrex Sent: Saturday, February 4,

2012 9:05 AM Subject: Re: Re: verbal apraxia?? --- Dana pls help

Anything with "mixed tocopherols" will have some soy-derived vitamin e.You have to either get dl-tocopherol (lab created) - found on ourasdkids.com Kirkman product I think

or have the company say that their product does not contain soy-derived vitamin e.Some will say they have "no soy" and still have soy-derived oil. It's real messed up how they can twist that.Unique Tocotrienols has non-soy derived tocotrienols which are related to vitamin e.

http://www.vitacost.com/North-American-Herb-Spice-Purely-E-Sunflower-Seed-Vitamin-E this is a vitamin E with no soybean-derived

vitamin E.This one is the one I reacted really badly to (due to my sesame allergy)

Thank you alberta, very interesting info. I think I will trial a new omega and clo to see what happens (both ones we are using are NN). Do you have a rec on a replacement?Many thanks!

-- Sent from my Palm Pre

The soy in it wouldn't be a problem for people whose issues are only with allergies. However, there are some kids whose issues with soy are more involved. I'm starting to see that Maia (and likely Ethan) might be in this group of kids.

Soy not only causes an allergic reaction for my kids -- soy causes apraxia very very quickly for us. In the past few days, another mom had brought up the possibility of a G6PD (glucose-6-phosphate dehydrogenase) deficiency. I hadn't ever heard of this and I didn't even know what this was until 2 days ago. I almost fell to the floor when I found out what it was. It describes my daughter to a tee. Soy actually causes apraxia in Maia, doesn't matter if it's been treated to be "safe for allergies" -- our reaction to it is not only an immune reaction -- Maia is also allergic to soy but I think that she may have a metabolic reaction to it. We've tried NN and she definitely reacts to it and it's not only that she's allergic to it but it worsens her apraxia.

I kind of want to blah blah blah about it but I still don't understand it very well yet. All I know is that, if Maia tests positive for this, I think this might mean that it is triggered by soy with her -- or, rather, soy is the biggest trigger. The reaction for her is not an immune reaction -- it's a metabolic reaction. They cannot treat the soy to not trigger a metabolic reaction.

-- --------------------------------------------------------------------------------------------Click to find info about Vitamins and Minerals:http://www.facebook.com/note.php?note_id=10150543521682565

--------------------------------------------------------------------------------------------Click to find links to info about the Low Oxalate Diet :http://www.facebook.com/note.php?note_id=10150543495292565

------Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

I am posting a link to the SPEAK ingredients:

http://www.speechnutrients.com/products/speak/

It clearly states that the natural tocopherols are derived from refined soybean

oil.

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> The soy in it wouldn't be a problem for people whose issues are only with

allergies. & nbsp; However, there are some kids whose issues with soy are more

involved. & nbsp; & nbsp; I'm starting to see that Maia (and likely Ethan) might be

in this group of kids.

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> Soy not only causes an allergic reaction for my kids -- soy causes apraxia

very very quickly for us. & nbsp;

>

> In the past few days, another mom had brought up the possibility of a G6PD

(glucose-6-phosphate dehydrogenase) deficiency. & nbsp; I hadn't ever heard of

this and I didn't even know what this was until 2 days ago. & nbsp; I almost fell

to the floor when I found out what it was. & nbsp; It describes my daughter to a

tee. & nbsp; Soy actually causes apraxia in Maia, doesn't matter if it's been

treated to be " safe for allergies " -- our reaction to it is not only an immune

reaction -- Maia is also allergic to soy but I think that she may have a

metabolic reaction to it. We've tried NN and she definitely reacts to it and

it's not only that she's allergic to it but it worsens her apraxia.

>

>

> I kind of want to blah blah blah about it but I still don't understand it very

well yet. & nbsp; All I know is that, if Maia tests positive for this, I think

this might mean that it is triggered by soy with her -- or, rather, soy is the

biggest trigger. & nbsp; The reaction for her is not an immune reaction -- it's a

metabolic reaction. & nbsp; They cannot treat the soy to not trigger a metabolic

reaction.

>

[Guest guest]

Channa,Don't forget Lysine if you're taking arginine and methionine- especially if your child has herpes viruses.Sent from my iPhone

well at least we get a break with the carnitines...do you give the alcar and carninine at the same time or diffrent meals? i got some methionine i started giving my son with his chelation dose as it spose help detoxification and metals....and undermethylators...which im guessing is my son....love all the guessing i get to do about everything..sigh.

also i am doin brice vickery amino blend before meals...i still want to give glutamine and arginine fro growth issues but dont know if glutamine and arginine would work well with each other....

F. more guessing...

To: mb12valtrex Sent: Friday, February 3, 2012 2:42 AMSubject: Re: verbal apraxia?? --- Dana pls help

I think the carnitines are the only ones that absorb better with food. I think all the other aminos absorb better away from meals. Ah, well, while Miss Maia is up at 2:30 AM, I might as well get some yeast enzymes and aminos in her now...I hear her laughing that yeast laugh in her room right now...

thank you so much Alberta i was rackin my brain trying to figure how to give all these seperat amino acids....taking with food...brillaint!

To: mb12valtrex Sent: Wednesday, February 1, 2012 7:08 PM

Subject: Re: verbal apraxia?? --- Dana pls help

Thanks, Tammy! : ) I hate this apraxia beast so much and I want to provide as much information as possible if it'll help even one person...heavens knows, I've gotten lots of good information from other people here. The apraxia's a tough one to tackle...probably more challenging than all the other ASD symptoms we've had combined.Channa, I'm finding it better when I give our ALCAR with food. Someone mentioned on TLO that it's the only amino acid that absorbs better with food. She said that L-carnitine needs a carb load to be absorbed and I read somewhere else that since ALCAR crosses the brain barrier and the brain is ~90% fat, then giving it with fatty foods is best. I give it just before our EFAs now. With my son, giving L-carnitine right after he has a lot of starchy food makes him have an excellent poop. I'm also finding that if I give too much or if I give it on an empty stomach, it'll make my

kids lose their appetite and not eat that meal.

[Guest guest]

We're using Jarrow Max DHA, Flora Flax Seed Oil, Now EPO.  I give CoQ10 at the same time and try to give all of these as close as possible to ALCAR.  Just a little antioxidants tangent here:I just introduced astaxanthin (AOR Astaxanthin Ultra) 2 days ago.  Holy moley, this is an instantly nice one -- definitely a keeper -- I got home from grocery shopping this morning and Maia saw me pulling up from the window in the living room and actually came to open the door for me!  Before today, I could have stood outside forever before and asked her to open the door and she just wouldn't understand the need to do it -- to know that I would need to come in and to show courtesy by unlocking and opening the door without me even prompting once -- this is the first time this has happened and I wonder if it's a coincidence that I just introduced a stronger antioxidant before she did this).  Nice.  It's also giving her the ability for some back-and-forth in our mini conversations -- I asked what she was watching on her iPod and she said " Bob " and I asked, " Is he fixing lots of things? " and she shook her head side to side for " No " and said, " No, Bob pay (play). "   Why have I never used astaxanthin before?!?!?  Why was I lollygagging trying low doses of Vit C when there's astaxanthin??? Astaxanthin's good $#!t...they should put a great big yellow circle on the label and write in it: " This stuff is damned good $#!t " .  But, 2 days in, astaxanthin doesn't seem to be doing much for the apraxia itself -- but hey, I'll take the better cognition...better cognition is nothing to shake a stick at...

We also use Aqua E ( Labs).  The changes with it aren't as striking...not huge huge differences, but she does need Vit E now.  It's liquid, it's got a pleasant-ish taste...really easy to administer with an oral syringe and it's soy-free so I like it.

I'm SO geeked right now...I feel like Maia's on a really promising path with her current protocols.  Of course, I don't know if what I'm doing is going to work for everyone with apraxia -- there've been many things that have worked wonders for other people (like DMG or MB12) that haven't done much for us and the little gains we saw on them plateaued very quickly.

 

Thank you alberta, very interesting info. I think I will trial a new omega and clo to see what happens (both ones we are using are NN).  Do you have a rec on a replacement?Many thanks!

-- Sent from my Palm Pre

 

The soy in it wouldn't be a problem for people whose issues are only with allergies.  However, there are some kids whose issues with soy are more involved.   I'm starting to see that Maia (and likely Ethan) might be in this group of kids.

Soy not only causes an allergic reaction for my kids -- soy causes apraxia very very quickly for us.  In the past few days, another mom had brought up the possibility of a G6PD (glucose-6-phosphate dehydrogenase) deficiency.  I hadn't ever heard of this and I didn't even know what this was until 2 days ago.  I almost fell to the floor when I found out what it was.  It describes my daughter to a tee.  Soy actually causes apraxia in Maia, doesn't matter if it's been treated to be " safe for allergies " -- our reaction to it is not only an immune reaction -- Maia is also allergic to soy but I think that she may have a metabolic reaction to it. We've tried NN and she definitely reacts to it and it's not only that she's allergic to it but it worsens her apraxia.

I kind of want to blah blah blah about it but I still don't understand it very well yet.  All I know is that, if Maia tests positive for this, I think this might mean that it is triggered by soy with her -- or, rather, soy is the biggest trigger.  The reaction for her is not an immune reaction -- it's a metabolic reaction.  They cannot treat the soy to not trigger a metabolic reaction.

[Guest guest]

Alberta,

How did you learn about astaxanthin? Do you have some link where I can get some

more information related to ASD kids and astaxanthin? My son has oxidative

stress which is better with curcumin. I am still confused about vitamin c as

sometimes my son does ok on it and sometimes has problems possibly related to

oxalates. I have been looking for vitamin E but not sure how to start. The

product you are talking about seems good. What dose did you start at? How do you

tell if your child needs it and will tolerate it? Are there any signs that tell

that the child is not a good candidate for vitamin E?

Thanks

is

> >

> >

> >

> > The soy in it wouldn't be a problem for people whose issues are only with

> > allergies. However, there are some kids whose issues with soy are more

> > involved. I'm starting to see that Maia (and likely Ethan) might be in

> > this group of kids.

> >

> > Soy not only causes an allergic reaction for my kids -- soy causes apraxia

> > very very quickly for us.

> >

> > In the past few days, another mom had brought up the possibility of a G6PD

> > (glucose-6-phosphate dehydrogenase) deficiency. I hadn't ever heard of

> > this and I didn't even know what this was until 2 days ago. I almost fell

> > to the floor when I found out what it was. It describes my daughter to a

> > tee. Soy actually causes apraxia in Maia, doesn't matter if it's been

> > treated to be " safe for allergies " -- our reaction to it is not only an

> > immune reaction -- Maia is also allergic to soy but I think that she may

> > have a metabolic reaction to it. We've tried NN and she definitely reacts

> > to it and it's not only that she's allergic to it but it worsens her

> > apraxia.

> >

> > I kind of want to blah blah blah about it but I still don't understand it

> > very well yet. All I know is that, if Maia tests positive for this, I

> > think this might mean that it is triggered by soy with her -- or, rather,

> > soy is the biggest trigger. The reaction for her is not an immune reaction

> > -- it's a metabolic reaction. They cannot treat the soy to not trigger a

> > metabolic reaction.

> >

> >

>