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

[Guest guest]

YES It is important to listen to other people's experiences.

It is even more important that people try and get to the bottom of WHY

something doesn't work for one person when it works for another. This

is how we move forward.

If we don't do that, then all we end up with is a conversation that goes

something like this:

A: Well it works for me.....so it must work.

B: It didn't work for me...... it doesn't work.

No one gets very far if that's as far as conversation or thinking goes.

So for example in the case at hand we could start considering things like:

Is there an ongoing exposure to heavy metals that remains unknown? This

will cause problems while Chelating.

Andy has warned that elevated 'sulfur' can cause things like seizures if

more 'sulfur' is pushed into the patient. What is the plasma cysteine

level? Does this reveal anything relevant?

Is there are GABA issue?

These are just examples of the sorts of things that need to be

considered to move forward.

A book on neuroscience is probably a worthy investment and there is a

significant amount of research that has been done on seizures and

epilepsy. This may also be worth considering. I know you are pushed

for time . And while I would certainly continue to consult with

your doctors, I would not leave it all up to them in deciding how to

move forward.

Nothing we do is entirely " safe " . But I think a lot of us are on this

group and following this protocol because we don't feel that leaving

mercury in the brain is a very " safe " option either.

So maybe now is the time for all of those parents who have to deal with

seizure problems and heavy metals issues to get their heads together and

try and find the best way to move forward.

Ladyshrink111@... wrote:

>

>

> ----- 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]

But one should work up to that dose, not starting with it.

S S

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

Posted by: " Reynolds " peter@... rollinreynolds

Wed Aug 27, 2008 9:53 am (PDT)

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

around 25kg or 55 pounds.

[Guest guest]

oh darn. i have been doing 25mg. should i go back down or stay where

i am at. it seems to be helping. do you think i hurt her?

On Aug 27, 2008, at 8:52 PM, Shepard Salzer wrote:

> 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]

We started extremely low. We also started with DMSA only and we had a

significant body burden we had to deal with.

But I also know others who started at close to max dose and didn't have

any issues.

If you haven't seen any dramatic issues, the I don't think you have hurt

her, so don't worry, just focus on moving forward.

If you wanted to play it a bit more cautiously, you could drop the dose

back by half for 6 to 8 rounds. If it seems like water off a ducks back

(ie no issues at all) then consider increasing the dose again.

Arias wrote:

>

> oh darn. i have been doing 25mg. should i go back down or stay where

> i am at. it seems to be helping. do you think i hurt her?

> On Aug 27, 2008, at 8:52 PM, Shepard Salzer wrote:

>

> > 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@...

> <mailto:the.great.zambini%40gmail.com> 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]

Hi ,

I understand you are very much for using ALA and this shows in your

posts. I was for trying, also, but had a bad experience. I posted

about this. It did cause my son's seizures (see my long post from

last night) I believe but in his very specific environment/anatomy.

All I said people need to be careful.

>

> YES It is important to listen to other people's experiences.

>

> It is even more important that people try and get to the bottom of

WHY

> something doesn't work for one person when it works for another.

This

> is how we move forward.

I agree. I would like to add, however, that often you just won't

have the complete picture no matter what i.e. we did not know about

the cyst before....etc.

I think ALA actually worked for us, partially, but it triggered the

seizures. Just read my other post.

>

> If we don't do that, then all we end up with is a conversation

that goes

> something like this:

>

> A: Well it works for me.....so it must work.

> B: It didn't work for me...... it doesn't work.

That's how some people make conclusions, especially when they are so

sceptical to begin with, and when there are few studies behind an

approach, yes, and in these situations it's very easy to dismiss or

perhaps blindly support an idea. People can get very upset or

disappointed when they first are faced with something not working

for their precious child. It's a fallacy .... but that's just how

people sometimes make decisions for themselves based on others' and

their own experienceses, for themselves or for their own kids. And

maybe that's OK knowing how different each kiddo is and how many

unknown variables there are regarding their condition. Even FDA

approved medications have side effects and they don't equally work

for everyone based on many many issues!

But... nobody said ALA did not work...I sure did not say that. I was

just sharing my experience with it and I just meant to disclose it

for everyone's good. Believe me it wasn't easy to do, it took me

about 4 months.

> Is there an ongoing exposure to heavy metals that remains

unknown? This

> will cause problems while Chelating.

That's a good questions to ask, in general.

> Andy has warned that elevated 'sulfur' can cause things like

seizures if

> more 'sulfur' is pushed into the patient. What is the plasma

cysteine

> level? Does this reveal anything relevant?

I do not know. This is what I haven't explored yet. I have a lot of

things in my bag to after first, IMO, that may be more substantial

here, like the cyst, B conversion, ammonia levels, or

yeast/bacteria, infection, and severe allergies, which I now am more

aware of that I had been before.

> Is there are GABA issue?

I do not know. Docs did not make this suggestion....though I asked.

I will follow up on this one.

> These are just examples of the sorts of things that need to be

> considered to move forward.

I agree, just examples. There are just so many underlying issues

that even biomedical testing or observation will just not

reveal...such an a structural abnormality.

> A book on neuroscience is probably a worthy investment and there

is a significant amount of research that has been done on seizures

and epilepsy. This may also be worth considering. I know you are

pushed for time . And while I would certainly continue to

consult with your doctors, I would not leave it all up to them in

deciding how to move forward.

Thanks . I will try to find something to read. I have been on

multiple boards about seizures and cysts and have learned a great

deal already. I am not leaving the decision to my docs but listen

to all (how many????) and then make a decision.

> Nothing we do is entirely " safe " . But I think a lot of us are on

this group and following this protocol because we don't feel that

leaving mercury in the brain is a very " safe " option either.

Exactly. This is what's killing me, becuase of our history I know

my son has TONS of mercury. I just don't want to trigger a larger

and more serious issue i.e. a more serious type of seizure or

largening of the cyst. We have been losing so many skills

already... and he has been sufferringa great deal.

> So maybe now is the time for all of those parents who have to deal

> with seizure problems and heavy metals issues to get their heads

> together and try and find the best way to move forward.

Seizures are not much better understood than autism, . Once you

have seizures, everything shifts, at least for me, to safety. You

have to watch the kiddo 24/7, literally, and if the seizures are not

controlled, there are many very serious behaviors that come with

them. My son takes his clothes off when one is coming and he will

often poop right where he is. he is extremely fast. He does not

follow directions or listens at all when he has an episode. We need

two people to take him for a walk right now b/c we can barely

control him. So, what I am trying to say, this is a whole new

field, believe me and I would give everything I have for just

having 'autism' for Evan.... But yes, I have tried to read from

parents and right now posted on this board for responses. All I am

saying this is EXTREMELY complicated.