Re: new - and general beginning advice wanted

April 30, 2007

Hi ,

I think Children with Starving Brains is a good book to go through the supplements and it also talks about yest protocol. She goes through the basics of supplementation, including dosage, etc and says which ones you need in place prior to chelating and also which ones need to be increased during chelation.

I think some people get some understanding of a yeast protocol that is effective for their child before they start chelating although others think that until they start chelating their child's yeast isn't going to get under control. It just depends on what you think is right for your child.

Best wishes,

Darla

Hi there,I am pretty new to this group and have been reading archives andlearning. I have found the excellent file on supplements. We havejust started supplementing beyond the probiotics and EFAs that we havealways done and are trying to prepare to chelate.Here are the questions I am now concerned about:Does anyone have a shortlist of supplements - or some way to determinewhat are the most important ones to begin with? How do you know whenthe supplements are sufficiently in place to begin chelation?Once chelating starts, I have gathered from archives that people havedifficulty with two major things: yeast and viruses (is this right oram I leaving other things out?). But I can't work out from readingthe archives what causes these problems.And should everyone who chelates expect difficulties with yeast andviruses - in other words, how likely are these problems to arise? Soshould things be in place to prophylactically deal with these beforewe start chelating - or should we just have things on hand to dealwith them *should* they occur? I just don't want to be in theposition where something is going on, and it's only THEN that I startresearching, and ordering remedies etc. - I would prefer to have*some* idea what to expect and to be prepared.Any advice will be welcomed!Thanks -

April 30, 2007

Yes, I agree with you Sally - it is very much written as *this is the way kids are to be treated* rather than this is the way *I* treat kids. I didn't mind the bossy tone as I never listen to one person anyway (like most parents treating biomedically I guess!) What annoyed me the most was the poems and sappy sentimentality which I think only contributes to a lack of credibility about the medical stuff...all I wanted was to find where to start and which supps to give my son to help him...

Darla

Children with Starving Brains is quite bossy in tone and I found it hard to like. It's very dogmatic about GFCF diet which is much less of a dead-cert than the impression she gives. On the other hand loads of people recommend it. Be aware there are other points of view.

April 30, 2007

Yes, I agree with you Sally - it is very much written as *this is the way kids are to be treated* rather than this is the way *I* treat kids. I didn't mind the bossy tone as I never listen to one person anyway (like most parents treating biomedically I guess!)

>>Ah yes - if you have grasped parent empowerment you are on your way for sure! This is something we are keen to promote through TA, yes we recommend you have a practitioner, as source of experience and as a guide, but for me personally at least, not as a font of all knowledge

Due to financial reasons (and for some folks geographiocal ones) working with a practitioner can be problematic, as somebody that has in 7 years of biomed only had 4 consults (3 of which were a hopeless waste of time and money) I now find it difficult to pass the torch to somebody, anybody, else.

We are lucky now to have folks like Asha and Lorene that will work long distance after initial stuff making it easier for people to access the support, they are also parents like us so IMHO have a level of understanding how life is for us, that folks without ASD on a daily basis cannot, even with the best will in the world.

Way back when I started, things were much different, though in some ways I think having more choices can make things more difficult LOL.

Rewind to 1999 - stuff we DIDN'T have - DAN! Detox Protocol, MB12, LDN, viral stuff, genomics, SCD diet, nice tasting fish oils and HNI enzymes to name but a few. It was easy then..........mostly do the GFCF diet and treat yeast!

Mandi with Hayfever in Dorset - woe is me, sniff, sneeze, itch!

May 1, 2007

Children with Starving Brains is quite bossy in tone and I found it hard

to like. It's very dogmatic about GFCF diet which is much less of a

dead-cert than the impression she gives. On the other hand loads of

people recommend it. Be aware there are other points of view.

A really good downloadable one is free on-line pdf by Jepson.

Someone posted the link ages ago and I found it understandable and

clear. Also the Shaw mega tome -- I find all these more

interested in the pros and cons of stuff so that you understand the

medical science -- not so " do what I say and don't bother me with questions "

If you join treating autism you can borrow all these from the library

and only buy the ones that strike a chord. If reading is helpful, I'd

say read widely before doing anything drastic

xx Sally

rexel45@... wrote:

>

> Hi ,

>

> I think Children with Starving Brains is a good book to go through the

> supplements and it also talks about yest protocol. She goes through

> the basics of supplementation, including dosage, etc and says which

> ones you need in place prior to chelating and also which ones need to

> be increased during chelation.

>

> I think some people get some understanding of a yeast protocol that is

> effective for their child before they start chelating although others

> think that until they start chelating their child's yeast isn't going

> to get under control. It just depends on what you think is right for

> your child.

>

> Best wishes,

> Darla

>

> In a message dated 30/04/2007 22:13:19 GMT Standard Time, raspopovich@

> yahoo.com writes:

>

> Hi there,

>

> I am pretty new to this group and have been reading archives and

> learning. I have found the excellent file on supplements. We have

> just started supplementing beyond the probiotics and EFAs that we have

> always done and are trying to prepare to chelate.

>

> Here are the questions I am now concerned about:

>

> Does anyone have a shortlist of supplements - or some way to determine

> what are the most important ones to begin with? How do you know when

> the supplements are sufficiently in place to begin chelation?

>

> Once chelating starts, I have gathered from archives that people have

> difficulty with two major things: yeast and viruses (is this right or

> am I leaving other things out?). But I can't work out from reading

> the archives what causes these problems.

>

> And should everyone who chelates expect difficulties with yeast and

> viruses - in other words, how likely are these problems to arise? So

> should things be in place to prophylactically deal with these before

> we start chelating - or should we just have things on hand to deal

> with them *should* they occur? I just don't want to be in the

> position where something is going on, and it's only THEN that I start

> researching, and ordering remedies etc. - I would prefer to have

> *some* idea what to expect and to be prepared.

>

> Any advice will be welcomed!

>

> Thanks -

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.467 / Virus Database: 269.6.2/780 - Release Date: 29/04/2007

06:30

>

May 1, 2007

Hi ,

> Does anyone have a shortlist of supplements - or some way to

determine

> what are the most important ones to begin with?

Some people go by symptoms. For example, a lack of energy could mean

try aminos. Some people go by trends. For eg, almost all ASD kids

are low in zinc. Some people go by testing. For eg, I ordered an

ION panel from Metametrix lab which was fabulously helpful in

determining my son's supplement needs. This is obviously the most

expensive way, but I highly recommend it if you have the money.

Many of us use all three methods in combination.

How do you know when

> the supplements are sufficiently in place to begin chelation?

Andy says two weeks of all of them on board is enough to get started.

>

> Once chelating starts, I have gathered from archives that people

have

> difficulty with two major things: yeast and viruses (is this right

or

> am I leaving other things out?). But I can't work out from reading

> the archives what causes these problems.

Most ASD kids have yeast issues. Chelating seems to exacerbate

them. Having a good antifungal program is pretty key to success.

Many kids have viral issues. A results of vaccinations and/or

dysfunctional immune systems. Chelating doesn't seem to cause viral

issues to emerge, but if your kid is a viral kid, you'll likely have

to address that (there is a file on viruses as well that you may find

helpful).

>

> And should everyone who chelates expect difficulties with yeast and

> viruses - in other words, how likely are these problems to arise?

So

> should things be in place to prophylactically deal with these before

> we start chelating - or should we just have things on hand to deal

> with them *should* they occur? I just don't want to be in the

> position where something is going on, and it's only THEN that I

start

> researching, and ordering remedies etc. - I would prefer to have

> *some* idea what to expect and to be prepared.

Yes, have some antifungal protocol in place prior to chelating. You

may have to up the protocol as you chelate. Some very few people

have little problem with yeast, but they are the fortunate few :-)

Best wishes,

Anita

>

> Any advice will be welcomed!

>

> Thanks -

>

May 1, 2007

Yes, I didn't mention the soppy stuff because that's a matter of taste.

Not mine at all. I'm probably more easily influenced -- I find bossiness

really aggravating.

xx Sally

rexel45@... wrote:

>

> Yes, I agree with you Sally - it is very much written as *this is the

> way kids are to be treated* rather than this is the way *I* treat

> kids. I didn't mind the bossy tone as I never listen to one person

> anyway (like most parents treating biomedically I guess!) What

> annoyed me the most was the poems and sappy sentimentality which I

> think only contributes to a lack of credibility about the medical

> stuff...all I wanted was to find where to start and which supps to

> give my son to help him...

>

> Darla

>

> In a message dated 01/05/2007 09:09:06 GMT Standard Time, bobsallyeva@

> ntlworld. com writes:

>

> Children with Starving Brains is quite bossy in tone and I found

> it hard

> to like. It's very dogmatic about GFCF diet which is much less of a

> dead-cert than the impression she gives. On the other hand loads of

> people recommend it. Be aware there are other points of view.

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.467 / Virus Database: 269.6.2/782 - Release Date: 01/05/2007

02:10

>

May 1, 2007

Hello Mandi,

I shall e-mail you off list re our trip to breakspear yesterday.

I type from our local hospital where I am getting a day's respite from

Henry by being a control in a clinical study. It involves lying on the

bed and having ECGs and blood pressure checks. Hard work, eh? His dad

has to take over for the day.

Margaret

>

> In a message dated 01/05/2007 09:14:39 GMT Standard Time, rexel45@...

> writes:

>

> Yes, I agree with you Sally - it is very much written as *this is

the way

> kids are to be treated* rather than this is the way *I* treat kids.

I didn't

> mind the bossy tone as I never listen to one person anyway (like

most parents

> treating biomedically I guess!)

>

> >>Ah yes - if you have grasped parent empowerment you are on your

way for

> sure! This is something we are keen to promote through TA, yes we

recommend you

> have a practitioner, as source of experience and as a guide, but

for me

> personally at least, not as a font of all knowledge

>

> Due to financial reasons (and for some folks geographiocal ones)

working

> with a practitioner can be problematic, as somebody that has in 7

years of

> biomed only had 4 consults (3 of which were a hopeless waste of

time and money) I

> now find it difficult to pass the torch to somebody, anybody, else.

>

> We are lucky now to have folks like Asha and Lorene that will

work

> long distance after initial stuff making it easier for people to

access the

> support, they are also parents like us so IMHO have a level of

understanding how

> life is for us, that folks without ASD on a daily basis cannot,

even with the

> best will in the world.

>

> Way back when I started, things were much different, though in some

ways I

> think having more choices can make things more difficult LOL.

>

> Rewind to 1999 - stuff we DIDN'T have - DAN! Detox Protocol, MB12,

LDN,

> viral stuff, genomics, SCD diet, nice tasting fish oils and HNI

enzymes to name

> but a few. It was easy then..........mostly do the GFCF diet and

treat yeast!

>

> Mandi with Hayfever in Dorset - woe is me, sniff, sneeze, itch!

>

May 1, 2007

I agree, those poems are a huge liability. I took my copy to our ped's

office when we started biomed and didn't want to even let him look at

the book in case he read those things and blew me off. There is a

place for things like that, but it really isn't a biomed book.

Rene

>What annoyed me the most was the poems and

> sappy sentimentality which I think only contributes to a lack of

>credibility

> about the medical stuff

May 1, 2007

There is a

> place for things like that

Yeah, it's called a diary ;-)

Anita

May 2, 2007

Thanks everyone - for the reading info and the extra help on

supplements - I appreciate it. And also for the bits about yeast and

viruses (I don't know how I overlooked that virus info in the files

folder). I am getting myself started on that reading (plus still

wading through group archives).

The starving brain book - does it have info on symptomatic dosing of

supplements? (I have it ordered now, but am curious as to whether it

is going to help in that regard). Is there a written resource for

this, or best off searching the archives?

WRT Andy's comments about supplements all being on board for a

fortnight before beginning chelation, is there any sense of which

" all " of them he thinks are essential?

I am really wishing that I had a healthcare professional to fall back

on to make sure I am not missing an important supplement, or doing

something wrong. The " problem " is that my child is not that poorly

off; we only did two vaxes (component vaxes) before I put my foot down

and stopped that, and my son does not meet counting rules, but does

have elevated aluminum, tin, lead and antimony (near mid yellow zone)

- and that along with his delayed speech and my amalgams (one removed

when I was a few weeks pregnant, unknowingly) make me think it is

worth giving a few rounds of chelation a go in order to see if

anything happens. But it is clear that so many children have very

serious problems wrt heavy metal toxicity that I am worried that any

doc I try to seek out is going to tell me my child has a bit of a

speech delay but is otherwise fine and that I should just go home and

leave him alone.

Is there anyone in England who will agree to working directly with

Andy for the most part?

Thanks again to all of you,

May 2, 2007

>Hi im " newish " also although ive asked many many questions over the

last few weeks ive never introduced myself. Im Caroline our son

Adam who is 2 1/2 was just dx 2 mts ago.. We were devesated of

course initally but now from the help of this board and all the

positive stories we have read. we are soooo hopefull for him.. i

really cant thank you all so much esp Mandi for all your advice as

allready we can see an improvement in Adam.. today he looked at his

little sister and laughed at her, normally he ignores her ,also he

said bye bye today he hasnt said that for months.. So thank you all

again so much.. Although before i go ive one more quick question..

Adam toe walks a lot and stimms when he excited is there anything

you can suggest that may help this?? Carolinexx

>

> In a message dated 02/05/2007 11:02:35 GMT Standard Time,

> raspopovich@... writes:

>

> The starving brain book - does it have info on symptomatic

dosing of

> supplements? (I have it ordered now, but am curious as to whether

it

> is going to help in that regard). Is there a written resource for

> this, or best off searching the archives?

>

> Not symptomatic dosing per se - it more gives the research and an

overall

> picture of what might be called the DAN! protocol (although this

is a misnomer,

> there really isn't a protocol in the strict sense of the word).

She does

> give dosage guidelines and explains the basic theoretical

background to

> treatments.

>

> I think most (but not all) symptomatic treatment is anecdotal and

trial and

> error. DeSerousi's book seemed to me to have more

symptomatic

> statements in it but it is primarily about enzymes and the basic

gut stuff.

>

> If you have particular symptoms that you are concerned about, you

can ask

> here if anyone has had success treating them - it never ceases to

amaze me the

> wide variety of treatments that work on the same symptom! We saw

fantastic

> results from Magnesium for instance but many people don't notice

a thing...

>

> Best wishes,

> Darla

>

May 2, 2007

Hi Caroline

Just read your post & it has given me goose bumps! The first book I

read was Karyn Serousi's, we are doing gf/cf & supps & nystatin now,

the toe walking stopped about 4 months into the diet & supps as did

hand flapping, these things take time to correct themselves, dont

worry, but I know that once you have seen great improvemenst you are

desperate for more, keep a diary if you dont have one yet as you

forget how far you have come.

good luck

Lara xxx

> >Hi im " newish " also although ive asked many many questions over

the

> last few weeks ive never introduced myself. Im Caroline our son

> Adam who is 2 1/2 was just dx 2 mts ago.. We were devesated of

> course initally but now from the help of this board and all the

> positive stories we have read. we are soooo hopefull for him.. i

> really cant thank you all so much esp Mandi for all your advice as

> allready we can see an improvement in Adam.. today he looked at his

> little sister and laughed at her, normally he ignores her ,also he

> said bye bye today he hasnt said that for months.. So thank you all

> again so much.. Although before i go ive one more quick question..

> Adam toe walks a lot and stimms when he excited is there anything

> you can suggest that may help this?? Carolinexx

> >

> > In a message dated 02/05/2007 11:02:35 GMT Standard Time,

> > raspopovich@ writes:

> >

> > The starving brain book - does it have info on symptomatic

> dosing of

> > supplements? (I have it ordered now, but am curious as to

whether

> it

> > is going to help in that regard). Is there a written resource for

> > this, or best off searching the archives?

> >

> > Not symptomatic dosing per se - it more gives the research and an

> overall

> > picture of what might be called the DAN! protocol (although this

> is a misnomer,

> > there really isn't a protocol in the strict sense of the word).

> She does

> > give dosage guidelines and explains the basic theoretical

> background to

> > treatments.

> >

> > I think most (but not all) symptomatic treatment is anecdotal

and

> trial and

> > error. DeSerousi's book seemed to me to have more

> symptomatic

> > statements in it but it is primarily about enzymes and the basic

> gut stuff.

> >

> > If you have particular symptoms that you are concerned about, you

> can ask

> > here if anyone has had success treating them - it never ceases

to

> amaze me the

> > wide variety of treatments that work on the same symptom! We

saw

> fantastic

> > results from Magnesium for instance but many people don't notice

> a thing...

> >

> > Best wishes,

> > Darla

> >

>

May 2, 2007

Toe walking is usually due to constipation.

Most kids are loaded or constipated .

Joanne