Was: when to add ALA: Our regression/seizures with ALA

[Guest guest]

Hi all,

 

I apologize for the short and not very detailed post herein in advance, but I

have been a rather busy mom, actually since I've tried to chelate my son using

ALA....which caused terrible regression in him and actual seizures.... But

anyway, I wanted to send this post out to the group even if briefly, for those

who are considering ALA chelation. 

 

I suppose I am still trying to put the pieces together regarding what may have

happened and why, along with two DAN docs, a neurologist, an epilepsy

specialist, and will have to get some others involved as well... I am trying to

move with this as much as I can but it's hard to manage a 6 and 1/2 year old

strong boy whose seizures simply can not be controlled despite trying already

four anti seizure drugs....so not much free time to reasearch at all.  Of course

ours is a very complex case, but I strogly believe all of our kids' case is

very complicated, which complexity is sometimes revealed, and other times it is

not.  Some are luckier than others, also, in choosing the right avenue or

prioritizing treatments.  

 

Anyways, the point I am trying to make is: be careful with ALA.  The onset of my

son's seizures coincided with two rounds of ALA chelation at a very low dose.  I

have tried DMSA before, oral, TD, DMPS transdermally, and all created very much

yeast that is awfully hard to treat in my son's case.  I haven't tried ALA yet,

so I gave it a shot.  I have to believe that my son's body burden must have been

(and still is) too highl or there may be extreme yeast or some sort of an

infection in his brain that may have contributed to the problem as well, pushing

him over the edge.  Also, as an incidental finding on his MRI they discovered a

small allegedly congenital arachnoid cyst in the left temp. lobe area, right

where the seizures have been taking place. So maybe the cyst is that altered

the environment in his brain which made him susceptible to negative reactions or

created this extreme sensitivity.....coupled with the yeast, host of viral

issues

which I know he has, so all together these factors may have contributed to the

extreme difficulties we have always seen with him whenever trying to chelate and

chelate with ALA in particular.

 

Anyhow, just wanted to post this for everyone out there considering ALA

chelation ---- everyone is different, and will respond differently, of

course. For us, ALA brought out some terrible issues, i.e. seizures, which

we have been trying to control with meds for now..... unsuccessfully.

 

Thanks for reading....of course feel free to chime in, if you have any

suggestions for us....we really need them.

 

[Guest guest]

Did you follow Cutler protocol?

Or did you do infrequent dosing?

How much did you consider was a low dose?

High and infrequent dosing will actually cause mercury to concentrate in

organs and the brain, a common cause of regression.

YES, ALA is very dangerous if used incorrectly. Most people on this

group should already know that.

Pattison wrote:

>

> Hi all,

>

> I apologize for the short and not very detailed post herein in

> advance, but I have been a rather busy mom, actually since I've tried

> to chelate my son using ALA....which caused terrible regression in him

> and actual seizures.... But anyway, I wanted to send this post out

> to the group even if briefly, for those who are considering ALA

> chelation.

>

> I suppose I am still trying to put the pieces together regarding what

> may have happened and why, along with two DAN docs, a neurologist, an

> epilepsy specialist, and will have to get some others involved as

> well... I am trying to move with this as much as I can but it's hard

> to manage a 6 and 1/2 year old strong boy whose seizures simply can

> not be controlled despite trying already four anti seizure drugs....so

> not much free time to reasearch at all. Of course ours is a very

> complex case, but I strogly believe all of our kids' case is

> very complicated, which complexity is sometimes revealed, and other

> times it is not. Some are luckier than others, also, in choosing the

> right avenue or prioritizing treatments.

>

> Anyways, the point I am trying to make is: be careful with ALA. The

> onset of my son's seizures coincided with two rounds of ALA chelation

> at a very low dose. I have tried DMSA before, oral, TD, DMPS

> transdermally, and all created very much yeast that is awfully hard to

> treat in my son's case. I haven't tried ALA yet, so I gave it a

> shot. I have to believe that my son's body burden must have been (and

> still is) too highl or there may be extreme yeast or some sort of an

> infection in his brain that may have contributed to the problem as

> well, pushing him over the edge. Also, as an incidental finding on

> his MRI they discovered a small allegedly congenital arachnoid cyst in

> the left temp. lobe area, right where the seizures have been taking

> place. So maybe the cyst is that altered the environment in his brain

> which made him susceptible to negative reactions or created this

> extreme sensitivity.....coupled with the yeast, host of viral issues

> which I know he has, so all together these factors may have

> contributed to the extreme difficulties we have always seen with him

> whenever trying to chelate and chelate with ALA in particular.

>

> Anyhow, just wanted to post this for everyone out there considering

> ALA chelation ---- everyone is different, and will respond

> differently, of course. For us, ALA brought out some terrible issues,

> i.e. seizures, which we have been trying to control with meds for

> now..... unsuccessfully.

>

> Thanks for reading....of course feel free to chime in, if you have any

> suggestions for us....we really need them.

>

>

>

>

[Guest guest]

not denise but am starting ala, my son is 78lbs and i was planning starting

at 25 mg every 3 hours is this right?thank you linda

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

I used ALA " correctly " , AC protocol, 6 mg orally per dose for a 45

lbs boy.

> >

> > Hi all,

> >

> > I apologize for the short and not very detailed post herein in

> > advance, but I have been a rather busy mom, actually since I've

tried

> > to chelate my son using ALA....which caused terrible regression

in him

> > and actual seizures.... But anyway, I wanted to send this post

out

> > to the group even if briefly, for those who are considering ALA

> > chelation.

> >

> > I suppose I am still trying to put the pieces together regarding

what

> > may have happened and why, along with two DAN docs, a

neurologist, an

> > epilepsy specialist, and will have to get some others involved

as

> > well... I am trying to move with this as much as I can but it's

hard

> > to manage a 6 and 1/2 year old strong boy whose seizures simply

can

> > not be controlled despite trying already four anti seizure

drugs....so

> > not much free time to reasearch at all. Of course ours is a

very

> > complex case, but I strogly believe all of our kids' case is

> > very complicated, which complexity is sometimes revealed, and

other

> > times it is not. Some are luckier than others, also, in

choosing the

> > right avenue or prioritizing treatments.

> >

> > Anyways, the point I am trying to make is: be careful with ALA.

The

> > onset of my son's seizures coincided with two rounds of ALA

chelation

> > at a very low dose. I have tried DMSA before, oral, TD, DMPS

> > transdermally, and all created very much yeast that is awfully

hard to

> > treat in my son's case. I haven't tried ALA yet, so I gave it a

> > shot. I have to believe that my son's body burden must have

been (and

> > still is) too highl or there may be extreme yeast or some sort

of an

> > infection in his brain that may have contributed to the problem

as

> > well, pushing him over the edge. Also, as an incidental finding

on

> > his MRI they discovered a small allegedly congenital arachnoid

cyst in

> > the left temp. lobe area, right where the seizures have been

taking

> > place. So maybe the cyst is that altered the environment in his

brain

> > which made him susceptible to negative reactions or created this

> > extreme sensitivity.....coupled with the yeast, host of viral

issues

> > which I know he has, so all together these factors may have

> > contributed to the extreme difficulties we have always seen with

him

> > whenever trying to chelate and chelate with ALA in particular.

> >

> > Anyhow, just wanted to post this for everyone out there

considering

> > ALA chelation ---- everyone is different, and will respond

> > differently, of course. For us, ALA brought out some terrible

issues,

> > i.e. seizures, which we have been trying to control with meds

for

> > now..... unsuccessfully.

> >

> > Thanks for reading....of course feel free to chime in, if you

have any

> > suggestions for us....we really need them.

> >

> >

> >

> >

[Guest guest]

I don't think people know on this board that ALA can be dangerous on

the AC protocol, in low doses. I did not know it either though I

have been reading/member of this board for about 3 years.

> >

> > Hi all,

> >

> > I apologize for the short and not very detailed post herein in

> > advance, but I have been a rather busy mom, actually since I've

tried

> > to chelate my son using ALA....which caused terrible regression

in him

> > and actual seizures.... But anyway, I wanted to send this post

out

> > to the group even if briefly, for those who are considering ALA

> > chelation.

> >

> > I suppose I am still trying to put the pieces together regarding

what

> > may have happened and why, along with two DAN docs, a

neurologist, an

> > epilepsy specialist, and will have to get some others involved

as

> > well... I am trying to move with this as much as I can but it's

hard

> > to manage a 6 and 1/2 year old strong boy whose seizures simply

can

> > not be controlled despite trying already four anti seizure

drugs....so

> > not much free time to reasearch at all. Of course ours is a

very

> > complex case, but I strogly believe all of our kids' case is

> > very complicated, which complexity is sometimes revealed, and

other

> > times it is not. Some are luckier than others, also, in

choosing the

> > right avenue or prioritizing treatments.

> >

> > Anyways, the point I am trying to make is: be careful with ALA.

The

> > onset of my son's seizures coincided with two rounds of ALA

chelation

> > at a very low dose. I have tried DMSA before, oral, TD, DMPS

> > transdermally, and all created very much yeast that is awfully

hard to

> > treat in my son's case. I haven't tried ALA yet, so I gave it a

> > shot. I have to believe that my son's body burden must have

been (and

> > still is) too highl or there may be extreme yeast or some sort

of an

> > infection in his brain that may have contributed to the problem

as

> > well, pushing him over the edge. Also, as an incidental finding

on

> > his MRI they discovered a small allegedly congenital arachnoid

cyst in

> > the left temp. lobe area, right where the seizures have been

taking

> > place. So maybe the cyst is that altered the environment in his

brain

> > which made him susceptible to negative reactions or created this

> > extreme sensitivity.....coupled with the yeast, host of viral

issues

> > which I know he has, so all together these factors may have

> > contributed to the extreme difficulties we have always seen with

him

> > whenever trying to chelate and chelate with ALA in particular.

> >

> > Anyhow, just wanted to post this for everyone out there

considering

> > ALA chelation ---- everyone is different, and will respond

> > differently, of course. For us, ALA brought out some terrible

issues,

> > i.e. seizures, which we have been trying to control with meds

for

> > now..... unsuccessfully.

> >

> > Thanks for reading....of course feel free to chime in, if you

have any

> > suggestions for us....we really need them.

> >

> >

> >

> >

[Guest guest]

>>I have to believe that my son's body burden must have been (and

still is) too highl or there may be extreme yeast or some sort of an

infection in his brain that may have contributed to the problem as

well, pushing him over the edge.

> Thanks for reading....of course feel free to chime in, if you have

any suggestions for us....we really need them.

I used biotin and GSE to control yeast. The biotin was required for

my son's body to be able to control yeast on its own.

OLE for bad bacteria problems, if you suspect a brain infection.

OLE also addressed certain viruses here, but to get the viruses out of

the brain, my son needed high doses of vitamin C and lysine.

Just some ideas for you. My son did very well on ALA, and he was a

high virus child. But perhaps your child has viruses in the brain

that are affecting him differently than they did for my son.

Dana

[Guest guest]

I am doing 25mg. every three hours, with a vitamin. This is right

isn't it ?

On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> Did you follow Cutler protocol?

>

> Or did you do infrequent dosing?

>

> How much did you consider was a low dose?

>

> High and infrequent dosing will actually cause mercury to

> concentrate in

> organs and the brain, a common cause of regression.

>

> YES, ALA is very dangerous if used incorrectly. Most people on this

> group should already know that.

>

>

>

> Pattison wrote:

> >

> > Hi all,

> >

> > I apologize for the short and not very detailed post herein in

> > advance, but I have been a rather busy mom, actually since I've

> tried

> > to chelate my son using ALA....which caused terrible regression

> in him

> > and actual seizures.... But anyway, I wanted to send this post out

> > to the group even if briefly, for those who are considering ALA

> > chelation.

> >

> > I suppose I am still trying to put the pieces together regarding

> what

> > may have happened and why, along with two DAN docs, a

> neurologist, an

> > epilepsy specialist, and will have to get some others involved as

> > well... I am trying to move with this as much as I can but it's hard

> > to manage a 6 and 1/2 year old strong boy whose seizures simply can

> > not be controlled despite trying already four anti seizure

> drugs....so

> > not much free time to reasearch at all. Of course ours is a very

> > complex case, but I strogly believe all of our kids' case is

> > very complicated, which complexity is sometimes revealed, and other

> > times it is not. Some are luckier than others, also, in choosing the

> > right avenue or prioritizing treatments.

> >

> > Anyways, the point I am trying to make is: be careful with ALA. The

> > onset of my son's seizures coincided with two rounds of ALA

> chelation

> > at a very low dose. I have tried DMSA before, oral, TD, DMPS

> > transdermally, and all created very much yeast that is awfully

> hard to

> > treat in my son's case. I haven't tried ALA yet, so I gave it a

> > shot. I have to believe that my son's body burden must have been

> (and

> > still is) too highl or there may be extreme yeast or some sort of an

> > infection in his brain that may have contributed to the problem as

> > well, pushing him over the edge. Also, as an incidental finding on

> > his MRI they discovered a small allegedly congenital arachnoid

> cyst in

> > the left temp. lobe area, right where the seizures have been taking

> > place. So maybe the cyst is that altered the environment in his

> brain

> > which made him susceptible to negative reactions or created this

> > extreme sensitivity.....coupled with the yeast, host of viral issues

> > which I know he has, so all together these factors may have

> > contributed to the extreme difficulties we have always seen with him

> > whenever trying to chelate and chelate with ALA in particular.

> >

> > Anyhow, just wanted to post this for everyone out there considering

> > ALA chelation ---- everyone is different, and will respond

> > differently, of course. For us, ALA brought out some terrible

> issues,

> > i.e. seizures, which we have been trying to control with meds for

> > now..... unsuccessfully.

> >

> > Thanks for reading....of course feel free to chime in, if you

> have any

> > suggestions for us....we really need them.

> >

> >

> >

> >

[Guest guest]

I thought is was 25mg/???

On Aug 27, 2008, at 7:02 AM, egerpatt wrote:

> I used ALA " correctly " , AC protocol, 6 mg orally per dose for a 45

> lbs boy.

>

>

> > >

> > > Hi all,

> > >

> > > I apologize for the short and not very detailed post herein in

> > > advance, but I have been a rather busy mom, actually since I've

> tried

> > > to chelate my son using ALA....which caused terrible regression

> in him

> > > and actual seizures.... But anyway, I wanted to send this post

> out

> > > to the group even if briefly, for those who are considering ALA

> > > chelation.

> > >

> > > I suppose I am still trying to put the pieces together regarding

> what

> > > may have happened and why, along with two DAN docs, a

> neurologist, an

> > > epilepsy specialist, and will have to get some others involved

> as

> > > well... I am trying to move with this as much as I can but it's

> hard

> > > to manage a 6 and 1/2 year old strong boy whose seizures simply

> can

> > > not be controlled despite trying already four anti seizure

> drugs....so

> > > not much free time to reasearch at all. Of course ours is a

> very

> > > complex case, but I strogly believe all of our kids' case is

> > > very complicated, which complexity is sometimes revealed, and

> other

> > > times it is not. Some are luckier than others, also, in

> choosing the

> > > right avenue or prioritizing treatments.

> > >

> > > Anyways, the point I am trying to make is: be careful with ALA.

> The

> > > onset of my son's seizures coincided with two rounds of ALA

> chelation

> > > at a very low dose. I have tried DMSA before, oral, TD, DMPS

> > > transdermally, and all created very much yeast that is awfully

> hard to

> > > treat in my son's case. I haven't tried ALA yet, so I gave it a

> > > shot. I have to believe that my son's body burden must have

> been (and

> > > still is) too highl or there may be extreme yeast or some sort

> of an

> > > infection in his brain that may have contributed to the problem

> as

> > > well, pushing him over the edge. Also, as an incidental finding

> on

> > > his MRI they discovered a small allegedly congenital arachnoid

> cyst in

> > > the left temp. lobe area, right where the seizures have been

> taking

> > > place. So maybe the cyst is that altered the environment in his

> brain

> > > which made him susceptible to negative reactions or created this

> > > extreme sensitivity.....coupled with the yeast, host of viral

> issues

> > > which I know he has, so all together these factors may have

> > > contributed to the extreme difficulties we have always seen with

> him

> > > whenever trying to chelate and chelate with ALA in particular.

> > >

> > > Anyhow, just wanted to post this for everyone out there

> considering

> > > ALA chelation ---- everyone is different, and will respond

> > > differently, of course. For us, ALA brought out some terrible

> issues,

> > > i.e. seizures, which we have been trying to control with meds

> for

> > > now..... unsuccessfully.

> > >

> > > Thanks for reading....of course feel free to chime in, if you

> have any

> > > suggestions for us....we really need them.

> > >

> > >

> > >

> > >

[Guest guest]

Hi ,

Not , but in order to know if 25mg is right, we need to know the

weight of your child. ALA is dosed by weight.

Post the weight and we can tell you.

P.

Arias wrote:

>

> I am doing 25mg. every three hours, with a vitamin. This is right

> isn't it ?

> On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

>

> >

>

> .

>

>

[Guest guest]

Her weight is 58 lbs. thanks LInda

On Aug 27, 2008, at 10:44 AM, P. wrote:

> Hi ,

> Not , but in order to know if 25mg is right, we need to know the

> weight of your child. ALA is dosed by weight.

> Post the weight and we can tell you.

> P.

>

> Arias wrote:

> >

> > I am doing 25mg. every three hours, with a vitamin. This is right

> > isn't it ?

> > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> >

> > >

> >

> > .

> >

> >

>

>

[Guest guest]

For both and ,

That sounds a bit high to me, like that max you should be at, not the

minimum for starting. 1/8 - 1/2 mg per pound, starting lower and

building up slowly, is what I understood from my reading. So, at 58 lb

's son, weight divided by 4 is 14mg approx for the 1/4 p/pound

dosing. That would be the high end for starting in my understanding.

We started at 1/16mg per pound for my kids. My 175 lb son is just up to

15.75 mg per dosing now, he started at 12.5 mg. My 100 lb daughter

started at 6.25 mg. Both of my kids started low, and both showed

improvement even with the lower dose. They are heavy reactors, and show

signs of changes easily, so I decided the lower dose would be even safer

to make sure we weren't overdoing, especially for my son who is yeasty.

We haven't had any yeast problems. With the lower dose, though, my

daughter did need even more magnesium and fluids that her usual. We

already supplemented magnesium, but had to up it more, as even the 1/16

mg ALA dose was causing problems. We just upped her dose, and she still

isn't to the 1/4 mg per pound. But, we are seeing great improvements

for both of them. We've been at it for a little over 3 months, and not

every weekend due to scheduling issues. We never start a round if we

think it might be a bed weekend to guarantee no missed doses.

HTH

P.

Arias wrote:

>

> Her weight is 58 lbs. thanks LInda

> On Aug 27, 2008, at 10:44 AM, P. wrote:

>

> > Hi ,

> > Not , but in order to know if 25mg is right, we need to know the

> > weight of your child. ALA is dosed by weight.

> > Post the weight and we can tell you.

> > P.

> >

> > Arias wrote:

> > >

> > > I am doing 25mg. every three hours, with a vitamin. This is right

> > > isn't it ?

> > > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> > >

> > > >

> > >

> > > .

> > >

> > >

> >

> >

>

>

[Guest guest]

Every 3 hours is correct. 25mg is good (max dose) for a child that was

around 25kg or 55 pounds.

Arias wrote:

>

> I am doing 25mg. every three hours, with a vitamin. This is right

> isn't it ?

> On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

>

> > Did you follow Cutler protocol?

> >

> > Or did you do infrequent dosing?

> >

> > How much did you consider was a low dose?

> >

> > High and infrequent dosing will actually cause mercury to

> > concentrate in

> > organs and the brain, a common cause of regression.

> >

> > YES, ALA is very dangerous if used incorrectly. Most people on this

> > group should already know that.

> >

> >

> >

> > Pattison wrote:

> > >

> > > Hi all,

> > >

> > > I apologize for the short and not very detailed post herein in

> > > advance, but I have been a rather busy mom, actually since I've

> > tried

> > > to chelate my son using ALA....which caused terrible regression

> > in him

> > > and actual seizures.... But anyway, I wanted to send this post out

> > > to the group even if briefly, for those who are considering ALA

> > > chelation.

> > >

> > > I suppose I am still trying to put the pieces together regarding

> > what

> > > may have happened and why, along with two DAN docs, a

> > neurologist, an

> > > epilepsy specialist, and will have to get some others involved as

> > > well... I am trying to move with this as much as I can but it's hard

> > > to manage a 6 and 1/2 year old strong boy whose seizures simply can

> > > not be controlled despite trying already four anti seizure

> > drugs....so

> > > not much free time to reasearch at all. Of course ours is a very

> > > complex case, but I strogly believe all of our kids' case is

> > > very complicated, which complexity is sometimes revealed, and other

> > > times it is not. Some are luckier than others, also, in choosing the

> > > right avenue or prioritizing treatments.

> > >

> > > Anyways, the point I am trying to make is: be careful with ALA. The

> > > onset of my son's seizures coincided with two rounds of ALA

> > chelation

> > > at a very low dose. I have tried DMSA before, oral, TD, DMPS

> > > transdermally, and all created very much yeast that is awfully

> > hard to

> > > treat in my son's case. I haven't tried ALA yet, so I gave it a

> > > shot. I have to believe that my son's body burden must have been

> > (and

> > > still is) too highl or there may be extreme yeast or some sort of an

> > > infection in his brain that may have contributed to the problem as

> > > well, pushing him over the edge. Also, as an incidental finding on

> > > his MRI they discovered a small allegedly congenital arachnoid

> > cyst in

> > > the left temp. lobe area, right where the seizures have been taking

> > > place. So maybe the cyst is that altered the environment in his

> > brain

> > > which made him susceptible to negative reactions or created this

> > > extreme sensitivity.....coupled with the yeast, host of viral issues

> > > which I know he has, so all together these factors may have

> > > contributed to the extreme difficulties we have always seen with him

> > > whenever trying to chelate and chelate with ALA in particular.

> > >

> > > Anyhow, just wanted to post this for everyone out there considering

> > > ALA chelation ---- everyone is different, and will respond

> > > differently, of course. For us, ALA brought out some terrible

> > issues,

> > > i.e. seizures, which we have been trying to control with meds for

> > > now..... unsuccessfully.

> > >

> > > Thanks for reading....of course feel free to chime in, if you

> > have any

> > > suggestions for us....we really need them.

> > >

> > >

> > >

> > >

[Guest guest]

We started extremely low 1/35 mg per lb and slowly built up to full dose

1/2 mg per pound.

Started with DMSA only. Then DMSA + ALA.

The improvements just keep coming.

P. wrote:

>

> For both and ,

>

> That sounds a bit high to me, like that max you should be at, not the

> minimum for starting. 1/8 - 1/2 mg per pound, starting lower and

> building up slowly, is what I understood from my reading. So, at 58 lb

> 's son, weight divided by 4 is 14mg approx for the 1/4 p/pound

> dosing. That would be the high end for starting in my understanding.

>

> We started at 1/16mg per pound for my kids. My 175 lb son is just up to

> 15.75 mg per dosing now, he started at 12.5 mg. My 100 lb daughter

> started at 6.25 mg. Both of my kids started low, and both showed

> improvement even with the lower dose. They are heavy reactors, and show

> signs of changes easily, so I decided the lower dose would be even safer

> to make sure we weren't overdoing, especially for my son who is yeasty.

> We haven't had any yeast problems. With the lower dose, though, my

> daughter did need even more magnesium and fluids that her usual. We

> already supplemented magnesium, but had to up it more, as even the 1/16

> mg ALA dose was causing problems. We just upped her dose, and she still

> isn't to the 1/4 mg per pound. But, we are seeing great improvements

> for both of them. We've been at it for a little over 3 months, and not

> every weekend due to scheduling issues. We never start a round if we

> think it might be a bed weekend to guarantee no missed doses.

>

> HTH

> P.

>

> Arias wrote:

> >

> > Her weight is 58 lbs. thanks LInda

> > On Aug 27, 2008, at 10:44 AM, P. wrote:

> >

> > > Hi ,

> > > Not , but in order to know if 25mg is right, we need to know the

> > > weight of your child. ALA is dosed by weight.

> > > Post the weight and we can tell you.

> > > P.

> > >

> > > Arias wrote:

> > > >

> > > > I am doing 25mg. every three hours, with a vitamin. This is right

> > > > isn't it ?

> > > > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> > > >

> > > > >

> > > >

> > > > .

> > > >

> > > >

> > >

> > >

> >

> >

[Guest guest]

the smallest mg i found was 25mg tablets. how do you get 1/2 mg?

On Aug 27, 2008, at 11:48 AM, P. wrote:

> For both and ,

>

> That sounds a bit high to me, like that max you should be at, not the

> minimum for starting. 1/8 - 1/2 mg per pound, starting lower and

> building up slowly, is what I understood from my reading. So, at 58 lb

> 's son, weight divided by 4 is 14mg approx for the 1/4 p/pound

> dosing. That would be the high end for starting in my understanding.

>

> We started at 1/16mg per pound for my kids. My 175 lb son is just

> up to

> 15.75 mg per dosing now, he started at 12.5 mg. My 100 lb daughter

> started at 6.25 mg. Both of my kids started low, and both showed

> improvement even with the lower dose. They are heavy reactors, and

> show

> signs of changes easily, so I decided the lower dose would be even

> safer

> to make sure we weren't overdoing, especially for my son who is

> yeasty.

> We haven't had any yeast problems. With the lower dose, though, my

> daughter did need even more magnesium and fluids that her usual. We

> already supplemented magnesium, but had to up it more, as even the

> 1/16

> mg ALA dose was causing problems. We just upped her dose, and she

> still

> isn't to the 1/4 mg per pound. But, we are seeing great improvements

> for both of them. We've been at it for a little over 3 months, and not

> every weekend due to scheduling issues. We never start a round if we

> think it might be a bed weekend to guarantee no missed doses.

>

> HTH

> P.

>

> Arias wrote:

> >

> > Her weight is 58 lbs. thanks LInda

> > On Aug 27, 2008, at 10:44 AM, P. wrote:

> >

> > > Hi ,

> > > Not , but in order to know if 25mg is right, we need to

> know the

> > > weight of your child. ALA is dosed by weight.

> > > Post the weight and we can tell you.

> > > P.

> > >

> > > Arias wrote:

> > > >

> > > > I am doing 25mg. every three hours, with a vitamin. This is

> right

> > > > isn't it ?

> > > > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> > > >

> > > > >

> > > >

> > > > .

> > > >

> > > >

> > >

> > >

> >

> >

[Guest guest]

I have been using the 25mg of the ALA for around 5 rounds and have

been seeing improvement. I guess its OK to keep going, right?

On Aug 27, 2008, at 12:09 PM, Reynolds wrote:

> We started extremely low 1/35 mg per lb and slowly built up to full

> dose

> 1/2 mg per pound.

>

> Started with DMSA only. Then DMSA + ALA.

>

> The improvements just keep coming.

>

>

>

> P. wrote:

> >

> > For both and ,

> >

> > That sounds a bit high to me, like that max you should be at, not

> the

> > minimum for starting. 1/8 - 1/2 mg per pound, starting lower and

> > building up slowly, is what I understood from my reading. So, at

> 58 lb

> > 's son, weight divided by 4 is 14mg approx for the 1/4 p/pound

> > dosing. That would be the high end for starting in my understanding.

> >

> > We started at 1/16mg per pound for my kids. My 175 lb son is just

> up to

> > 15.75 mg per dosing now, he started at 12.5 mg. My 100 lb daughter

> > started at 6.25 mg. Both of my kids started low, and both showed

> > improvement even with the lower dose. They are heavy reactors,

> and show

> > signs of changes easily, so I decided the lower dose would be

> even safer

> > to make sure we weren't overdoing, especially for my son who is

> yeasty.

> > We haven't had any yeast problems. With the lower dose, though, my

> > daughter did need even more magnesium and fluids that her usual. We

> > already supplemented magnesium, but had to up it more, as even

> the 1/16

> > mg ALA dose was causing problems. We just upped her dose, and she

> still

> > isn't to the 1/4 mg per pound. But, we are seeing great improvements

> > for both of them. We've been at it for a little over 3 months,

> and not

> > every weekend due to scheduling issues. We never start a round if we

> > think it might be a bed weekend to guarantee no missed doses.

> >

> > HTH

> > P.

> >

> > Arias wrote:

> > >

> > > Her weight is 58 lbs. thanks LInda

> > > On Aug 27, 2008, at 10:44 AM, P. wrote:

> > >

> > > > Hi ,

> > > > Not , but in order to know if 25mg is right, we need to

> know the

> > > > weight of your child. ALA is dosed by weight.

> > > > Post the weight and we can tell you.

> > > > P.

> > > >

> > > > Arias wrote:

> > > > >

> > > > > I am doing 25mg. every three hours, with a vitamin. This is

> right

> > > > > isn't it ?

> > > > > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> > > > >

> > > > > >

> > > > >

> > > > > .

> > > > >

> > > > >

> > > >

> > > >

> > >

> > >

[Guest guest]

I have my ALA compounded, rather than divide up capsules myself. We are

doing 2 kids, and I didn't want to have to divide 42 doses a week. So,

I have a compounding pharmacy do each child's dose 100 pills at a time.

That gets us through 4 weeks. The cost at the pharmacy is only $10 per

100. So, for $20, I save a love of dividing. Worth it to me. And, I

can get pretty precise doses that way.

P.

Arias wrote:

>

> the smallest mg i found was 25mg tablets. how do you get 1/2 mg?

> On Aug 27, 2008, at 11:48 AM, P. wrote:

>

> > For both and ,

> >

> > That sounds a bit high to me, like that max you should be at, not the

> > minimum for starting. 1/8 - 1/2 mg per pound, starting lower and

> > building up slowly, is what I understood from my reading. So, at 58 lb

> > 's son, weight divided by 4 is 14mg approx for the 1/4 p/pound

> > dosing. That would be the high end for starting in my understanding.

> >

> > We started at 1/16mg per pound for my kids. My 175 lb son is just

> > up to

> > 15.75 mg per dosing now, he started at 12.5 mg. My 100 lb daughter

> > started at 6.25 mg. Both of my kids started low, and both showed

> > improvement even with the lower dose. They are heavy reactors, and

> > show

> > signs of changes easily, so I decided the lower dose would be even

> > safer

> > to make sure we weren't overdoing, especially for my son who is

> > yeasty.

> > We haven't had any yeast problems. With the lower dose, though, my

> > daughter did need even more magnesium and fluids that her usual. We

> > already supplemented magnesium, but had to up it more, as even the

> > 1/16

> > mg ALA dose was causing problems. We just upped her dose, and she

> > still

> > isn't to the 1/4 mg per pound. But, we are seeing great improvements

> > for both of them. We've been at it for a little over 3 months, and not

> > every weekend due to scheduling issues. We never start a round if we

> > think it might be a bed weekend to guarantee no missed doses.

> >

> > HTH

> > P.

> >

> > Arias wrote:

> > >

> > > Her weight is 58 lbs. thanks LInda

> > > On Aug 27, 2008, at 10:44 AM, P. wrote:

> > >

> > > > Hi ,

> > > > Not , but in order to know if 25mg is right, we need to

> > know the

> > > > weight of your child. ALA is dosed by weight.

> > > > Post the weight and we can tell you.

> > > > P.

> > > >

> > > > Arias wrote:

> > > > >

> > > > > I am doing 25mg. every three hours, with a vitamin. This is

> > right

> > > > > isn't it ?

> > > > > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> > > > >

> > > > > >

> > > > >

> > > > > .

> > > > >

> > > > >

> > > >

> > > >

> > >

> > >

[Guest guest]

but if i am taking 25mg. the capsules at kirkmans is fine, right?

On Aug 27, 2008, at 12:35 PM, P. wrote:

> I have my ALA compounded, rather than divide up capsules myself. We

> are

> doing 2 kids, and I didn't want to have to divide 42 doses a week. So,

> I have a compounding pharmacy do each child's dose 100 pills at a

> time.

> That gets us through 4 weeks. The cost at the pharmacy is only $10 per

> 100. So, for $20, I save a love of dividing. Worth it to me. And, I

> can get pretty precise doses that way.

> P.

>

> Arias wrote:

> >

> > the smallest mg i found was 25mg tablets. how do you get 1/2 mg?

> > On Aug 27, 2008, at 11:48 AM, P. wrote:

> >

> > > For both and ,

> > >

> > > That sounds a bit high to me, like that max you should be at,

> not the

> > > minimum for starting. 1/8 - 1/2 mg per pound, starting lower and

> > > building up slowly, is what I understood from my reading. So,

> at 58 lb

> > > 's son, weight divided by 4 is 14mg approx for the 1/4 p/

> pound

> > > dosing. That would be the high end for starting in my

> understanding.

> > >

> > > We started at 1/16mg per pound for my kids. My 175 lb son is just

> > > up to

> > > 15.75 mg per dosing now, he started at 12.5 mg. My 100 lb daughter

> > > started at 6.25 mg. Both of my kids started low, and both showed

> > > improvement even with the lower dose. They are heavy reactors, and

> > > show

> > > signs of changes easily, so I decided the lower dose would be even

> > > safer

> > > to make sure we weren't overdoing, especially for my son who is

> > > yeasty.

> > > We haven't had any yeast problems. With the lower dose, though, my

> > > daughter did need even more magnesium and fluids that her

> usual. We

> > > already supplemented magnesium, but had to up it more, as even the

> > > 1/16

> > > mg ALA dose was causing problems. We just upped her dose, and she

> > > still

> > > isn't to the 1/4 mg per pound. But, we are seeing great

> improvements

> > > for both of them. We've been at it for a little over 3 months,

> and not

> > > every weekend due to scheduling issues. We never start a round

> if we

> > > think it might be a bed weekend to guarantee no missed doses.

> > >

> > > HTH

> > > P.

> > >

> > > Arias wrote:

> > > >

> > > > Her weight is 58 lbs. thanks LInda

> > > > On Aug 27, 2008, at 10:44 AM, P. wrote:

> > > >

> > > > > Hi ,

> > > > > Not , but in order to know if 25mg is right, we need to

> > > know the

> > > > > weight of your child. ALA is dosed by weight.

> > > > > Post the weight and we can tell you.

> > > > > P.

> > > > >

> > > > > Arias wrote:

> > > > > >

> > > > > > I am doing 25mg. every three hours, with a vitamin. This is

> > > right

> > > > > > isn't it ?

> > > > > > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> > > > > >

> > > > > > >

> > > > > >

> > > > > > .

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > >

> > > >

[Guest guest]

If everything has been running smoothly, then yes.

25mg is a reasonable dose for your daughter's weight and its OK to keep

going at that dose.

Arias wrote:

>

> I have been using the 25mg of the ALA for around 5 rounds and have

> been seeing improvement. I guess its OK to keep going, right?

> On Aug 27, 2008, at 12:09 PM, Reynolds wrote:

>

> > We started extremely low 1/35 mg per lb and slowly built up to full

> > dose

> > 1/2 mg per pound.

> >

> > Started with DMSA only. Then DMSA + ALA.

> >

> > The improvements just keep coming.

> >

> >

> >

> > P. wrote:

> > >

> > > For both and ,

> > >

> > > That sounds a bit high to me, like that max you should be at, not

> > the

> > > minimum for starting. 1/8 - 1/2 mg per pound, starting lower and

> > > building up slowly, is what I understood from my reading. So, at

> > 58 lb

> > > 's son, weight divided by 4 is 14mg approx for the 1/4 p/pound

> > > dosing. That would be the high end for starting in my understanding.

> > >

> > > We started at 1/16mg per pound for my kids. My 175 lb son is just

> > up to

> > > 15.75 mg per dosing now, he started at 12.5 mg. My 100 lb daughter

> > > started at 6.25 mg. Both of my kids started low, and both showed

> > > improvement even with the lower dose. They are heavy reactors,

> > and show

> > > signs of changes easily, so I decided the lower dose would be

> > even safer

> > > to make sure we weren't overdoing, especially for my son who is

> > yeasty.

> > > We haven't had any yeast problems. With the lower dose, though, my

> > > daughter did need even more magnesium and fluids that her usual. We

> > > already supplemented magnesium, but had to up it more, as even

> > the 1/16

> > > mg ALA dose was causing problems. We just upped her dose, and she

> > still

> > > isn't to the 1/4 mg per pound. But, we are seeing great improvements

> > > for both of them. We've been at it for a little over 3 months,

> > and not

> > > every weekend due to scheduling issues. We never start a round if we

> > > think it might be a bed weekend to guarantee no missed doses.

> > >

> > > HTH

> > > P.

> > >

> > > Arias wrote:

> > > >

> > > > Her weight is 58 lbs. thanks LInda

> > > > On Aug 27, 2008, at 10:44 AM, P. wrote:

> > > >

> > > > > Hi ,

> > > > > Not , but in order to know if 25mg is right, we need to

> > know the

> > > > > weight of your child. ALA is dosed by weight.

> > > > > Post the weight and we can tell you.

> > > > > P.

> > > > >

> > > > > Arias wrote:

> > > > > >

> > > > > > I am doing 25mg. every three hours, with a vitamin. This is

> > right

> > > > > > isn't it ?

> > > > > > On Aug 27, 2008, at 12:31 AM, Reynolds wrote:

> > > > > >

> > > > > > >

> > > > > >

> > > > > > .

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > >

> > > >

[Guest guest]

Thanks for sharing your story .

I don't have any personal experience at all dealing with seizures, but

since you mentioned the cyst in the left temporal lobe, I thought I

would ask if you've noticed any other behavioural changes, like anger,

aggression, depression, sadness? Reason I ask is because I read a book

by Dan Amen (psychiatrist specialising in ADHD and uses SPECT brain

scans to see brain activity) a while ago and he cites a particular

case of a young patient who developed lots of aggression, anger &

suicidal/homocidal thoughts over a few months. Upon examining his

brain, Amen found a cyst in the left temporal lobe. Behavioural

symptoms grew as the growing cyst was putting pressure on the brain.

Amen believed the cyst had to come out, but he had difficulty finding

a surgeon who would remove the cyst since several claimed that

behavioural problems were not " real symptoms " (real symptoms

apparently include seizures, speech problems but not behaviour...) He

eventually found surgeon who removed cyst & the boy returned to his

normal self afterwards.

This story may not be relevant now, but I thought I'd mention it since

cysts cause behavioural problems but according to Amen, specialists in

the area don't seem to know this! Just something to bear in mind if

symptoms worsen over time. I think Amen mentions the name of the

surgeon he finally got to operate so let me know if you want details &

I'll see I can find names.

I have read that cysts cause seizures so perhaps the cyst is at the

root of the problem and not the ALA?

Best of luck in getting your boy's health back on the right track again.

> >

> > Did you follow Cutler protocol?

> >

> > Or did you do infrequent dosing?

> >

> > How much did you consider was a low dose?

> >

> > High and infrequent dosing will actually cause mercury to

> concentrate in

> > organs and the brain, a common cause of regression.

> >

> > YES, ALA is very dangerous if used incorrectly. Most people on

> this

> > group should already know that.

> >

> >

> >

[Guest guest]

,

I'm sorry this is happening to your son!! My son is 15 and started having

seizures at 13, before we started the ALA. Since he was already stabilized on

seizure meds, fortunately so far, the ALA didn't bring out anymore seizures.

But like you said, every child reacts differently. I am very curious about

the cyst you mentioned. My son also had a small cyst in an MRI which the

neurologist didn't seem to think was too important. I still wonder if that has

anything to do with his seizures and aggression, or if it's unrelated? Did

your neurologist say there may be a connection? I wish you and your family

the best!!!

Carla

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

It's quite unusual. I've been on the list since shortly after it began. As far

as I can remember, this is the first time I've heard of someone following AC ALA

protocol correctly having negative results.

S S

Re: Was: when to add ALA: Our regression/seizures with ALA

Posted by: " egerpatt " egerpatt@... egerpatt

Wed Aug 27, 2008 5:04 am (PDT)

I don't think people know on this board that ALA can be dangerous on

the AC protocol, in low doses. I did not know it either though I

have been reading/member of this board for about 3 years.

[Guest guest]

>

> but if i am taking 25mg. the capsules at kirkmans is fine, right?

>

Empty the capsule into 12mg of liquid (i.e. Orange,pineapple)

and then draw out 3mg for each dosing to get 6.25 mg dose of ALA.

Kenny

[Guest guest]

----- Original Message -----

From: egerpatt

I don't think people know on this board that ALA can be dangerous on

the AC protocol, in low doses. I did not know it either though I

have been reading/member of this board for about 3 years.

====>I think it's important to listen to what has to say, I know her

and know her to be a conscientious and careful parent who did administer the Ala

per Andy's protocol. She did contact me and tell me that she was going to post

about her experience and I encouraged her to do so.

did share with me that her boy had some minor signs of seizures prior

to starting Ala. After two rounds of Ala, they have gotten much worse.

I guess that this has happened to others, I have read about this on the boards

before...that a child's seizures will get worse with chelation. I also know that

in the other cases people have gotten their child on medication to stablize the

seizures and have continued to chelate. That stablization on seizure meds has

not happened in this case.

I think it's important to share all the experiences we have, the good and the

not so good.

I'm sorry this happened to your boy, . IMO, you should try some

supplementation if there continues to be no resolution with medication.

> >

> > Hi all,

> >

> > I apologize for the short and not very detailed post herein in

> > advance, but I have been a rather busy mom, actually since I've

tried

> > to chelate my son using ALA....which caused terrible regression

in him

> > and actual seizures.... But anyway, I wanted to send this post

out

> > to the group even if briefly, for those who are considering ALA

> > chelation.

> >

> > I suppose I am still trying to put the pieces together regarding

what

> > may have happened and why, along with two DAN docs, a

neurologist, an

> > epilepsy specialist, and will have to get some others involved

as

> > well... I am trying to move with this as much as I can but it's

hard

> > to manage a 6 and 1/2 year old strong boy whose seizures simply

can

> > not be controlled despite trying already four anti seizure

drugs....so

> > not much free time to reasearch at all. Of course ours is a

very

> > complex case, but I strogly believe all of our kids' case is

> > very complicated, which complexity is sometimes revealed, and

other

> > times it is not. Some are luckier than others, also, in

choosing the

> > right avenue or prioritizing treatments.

> >

> > Anyways, the point I am trying to make is: be careful with ALA.

The

> > onset of my son's seizures coincided with two rounds of ALA

chelation

> > at a very low dose. I have tried DMSA before, oral, TD, DMPS

> > transdermally, and all created very much yeast that is awfully

hard to

> > treat in my son's case. I haven't tried ALA yet, so I gave it a

> > shot. I have to believe that my son's body burden must have

been (and

> > still is) too highl or there may be extreme yeast or some sort

of an

> > infection in his brain that may have contributed to the problem

as

> > well, pushing him over the edge. Also, as an incidental finding

on

> > his MRI they discovered a small allegedly congenital arachnoid

cyst in

> > the left temp. lobe area, right where the seizures have been

taking

> > place. So maybe the cyst is that altered the environment in his

brain

> > which made him susceptible to negative reactions or created this

> > extreme sensitivity.....coupled with the yeast, host of viral

issues

> > which I know he has, so all together these factors may have

> > contributed to the extreme difficulties we have always seen with

him

> > whenever trying to chelate and chelate with ALA in particular.

> >

> > Anyhow, just wanted to post this for everyone out there

considering

> > ALA chelation ---- everyone is different, and will respond

> > differently, of course. For us, ALA brought out some terrible

issues,

> > i.e. seizures, which we have been trying to control with meds

for

> > now..... unsuccessfully.

> >

> > Thanks for reading....of course feel free to chime in, if you

have any

> > suggestions for us....we really need them.

> >

> >

> >

> >

[Guest guest]

Hi ,

25 mg is the maximum dose for a 50 lb kid, it's the beginning dose for a 200 lb

person. Andy's protocol is 1/8-1/2 mg/lb.

S S

Re: Was: when to add ALA: Our regression/seizures with ALA

Posted by: " P. " the.great.zambini@... zambinilives

Wed Aug 27, 2008 8:44 am (PDT)

Hi ,

Not , but in order to know if 25mg is right, we need to know the

weight of your child. ALA is dosed by weight.

Post the weight and we can tell you.

P.

[Guest guest]

linda,

Better to start at 10 mg.

S S

Re: Was: when to add ALA: Our regression/seizures with ALA

Posted by: " tigger3799@... " tigger3799@... lehr_linda

Wed Aug 27, 2008 8:58 am (PDT)

not denise but am starting ala, my son is 78lbs and i was planning starting

at 25 mg every 3 hours is this right?thank you linda