Re: FWD [] Re: Turning a corner: tho...

[Guest guest]

In a message dated 19/08/2010 08:29:43 GMT Daylight Time, Mum231ASD@... writes:

Thanks for posting this Mandi, I would agree with the "miracle supp" bit because we have had wows with enzymes, MB12 but nothing so startling as AC chelation from the start and with a 13 yr old!

I was expecting to wait a very long time before seeing anything or even see huge yeast flare ups, but BM's have become absolutely normal and he is clearly in no pain or distress.

I would actually say if anything has become too settled and compliant!!!

Vicky

> I posted on this on another forum. I apologize for the length. But I think my experience with my son, bears posting here as well, to give hope and encouragement to those just starting out and to those perhaps further along who are in a stall or have hit a bump with the AC protocol.> > My son is 5 now. We are coming up on round 96. We have been doing the AC protocol for 2 years. My son got 26 shots in his first 18 months of life, including several flu shots and one in utero. My boy lost his skills starting with a Hep A shot at age one, and with all the ensuing shots down to age 18 months, before we stopped the madness. My boy was loaded with metals, needless to say and was in a terrible way. Early Intervention in our state came in at 19 months and intimated we were dealing with a case of severe autism. We got an appt with a neurodevelopmental ped - but that appt we had to wait 6 months for. During this time we discovered biomed - started gfcf, omega 3 oils, yeast fighters and probiotics. By the time of our appt, we got a dx of high functioning PDD-nos. Whatever, labels meant nothing - my boy was vax injured. His gut was still a mess and he could not function or communicate properly. For the first several rounds of dmsa we saw lots of gains. Then we added ALA - this was very tough, stressed his adrenals out, and we could only give him 3mg or so for half a year. At 25 rounds we hit a stall, that lasted 8 months, 8 long, long months where there was even regression. We tried everything people tout here as miraculous - Enhansa, high dose vitamin A, antivirals, vinpocetine, gingko,, b vites, you name it. Nothing worked or mattered. We persevered. By round 50 we were able to up ALA and were at more weight appropriate doses. We saw some satisfying gains, then nothing for a few months. At round 66 we saw some good gains again, then nothing.> > At this time my son's gut was basically healing - no more yeast or parasites for months, formed stools, he could eat many things, corn eggs, some dairy, etc, and he loved to try lots of new foods. His seasonal allergies were gone and food allergies starting to abate. Still he spoke like a cave man and had limited receptive understanding. Cognition lagged way behind. We just kept chelating. My dh and I went round and round on whether an EEG was necessary. My dh said no, no EEGS or Pharma rx meds, lets just chelate and eventually we will have enough rounds and it will get better. He prevailed and we waited. > > In the last 2 weeks it is like someone flipped a switch. My son talks, and talks and talks, and seems to understand everything. He plays word games, makes jokes. He seems to be 100% present for the first time in his life. The teacher reports he greets peers and plays with them on the playground instead of merely running around the perimeter as is his habit. He is by no means recovered or age appropriate yet - but he is starting to be on his way there. It is like he can't tell me enough things - like he is uncorked or something. The other night he would not go to sleep, it was 11 pm and he is a good sleeper. He had a place mat with the presidents on it and he was hell bent on showing me that he knew all their names from Washington onward. He even told me, "you know, Washington even has his own bridge." I almost fell over laughing. I finally uttered words I thought I would never say, but I had to..."sweetie, please be quiet, stop talking, it is time to go to sleep." We have done nothing really, other than what we have for the last 2 years. In fact, we have recently lowered all of his supplements considerably. He takes nothing but the most basic mins and vites, a few amino acids, liver support, fish oils, antioxidants, and probiotics. I even hesitated to post this, for fear of jinxing it somehow. > > I posted this basically to say, there is one miracle supplement only in my view: AC chelation - dmsa and ala, week after week, after tedious sleepless week. To anyone doubting it or having a hard time of it, do not give up! We have had stall after stall and regression, and at times I wanted to throw in the towel, thinking my boy is damaged beyond repair. But with the support of people here on the boards and Andy, and my spouse, we just forged on, and on and on. And I believe we have another 200 rounds to go, for full recovery. But I believe in my heart it is truly possible. We have only one child, and for the first time, I feel his presence, his true presence as another person with opinions and ideas, fully present living in our house. It is a beautiful thing. > > I want to close my post with an inspirational saying my late mother, a relentless optimist, kept by her bed side even as she lay dying of breast cancer: > > Keep your heart open to dreams, for as long as there is a dream, there is hope, and as long as there is hope, there is joy in living.> > She lived this and believed this, and she was very right. I have hope, and joy now.> > Irene> 5 year old, 95 rounds

[Guest guest]

NIce one Vicky! THat's great to hear!

Sara x

On 19/08/2010 09:29, MaddiganV@... wrote:

 

In a message dated 19/08/2010 08:29:43 GMT

Daylight Time, Mum231ASD@... writes:

  Thanks for

posting this Mandi, I would agree with the "miracle

supp" bit because we have had wows with enzymes, MB12

but nothing so startling as AC chelation from the

start and with a 13 yr old!

I was expecting to wait a very long time before

seeing anything or even see huge yeast flare ups, but

BM's have become absolutely normal and he is clearly in

no pain or distress.

I would actually say if anything has

become too settled and compliant!!!

Vicky

> I posted on this on another forum. I

apologize for the length. But I think my

experience with my son, bears posting here as

well, to give hope and encouragement to those

just starting out and to those perhaps further

along who are in a stall or have hit a bump with

the AC protocol.

>

> My son is 5 now. We are coming up on round

96. We have been doing the AC protocol for 2

years. My son got 26 shots in his first 18

months of life, including several flu shots and

one in utero. My boy lost his skills starting

with a Hep A shot at age one, and with all the

ensuing shots down to age 18 months, before we

stopped the madness. My boy was loaded with

metals, needless to say and was in a terrible

way. Early Intervention in our state came in at

19 months and intimated we were dealing with a

case of severe autism. We got an appt with a

neurodevelopmental ped - but that appt we had to

wait 6 months for. During this time we

discovered biomed - started gfcf, omega 3 oils,

yeast fighters and probiotics. By the time of

our appt, we got a dx of high functioning

PDD-nos. Whatever, labels meant nothing - my boy

was vax injured. His gut was still a mess and he

could not function or communicate properly. For

the first several rounds of dmsa we saw lots of

gains. Then we added ALA - this was very tough,

stressed his adrenals out, and we could only

give him 3mg or so for half a year. At 25 rounds

we hit a stall, that lasted 8 months, 8 long,

long months where there was even regression. We

tried everything people tout here as miraculous

- Enhansa, high dose vitamin A, antivirals,

vinpocetine, gingko,, b vites, you name it.

Nothing worked or mattered. We persevered. By

round 50 we were able to up ALA and were at more

weight appropriate doses. We saw some satisfying

gains, then nothing for a few months. At round

66 we saw some good gains again, then nothing.

>

> At this time my son's gut was basically

healing - no more yeast or parasites for months,

formed stools, he could eat many things, corn

eggs, some dairy, etc, and he loved to try lots

of new foods. His seasonal allergies were gone

and food allergies starting to abate. Still he

spoke like a cave man and had limited receptive

understanding. Cognition lagged way behind. We

just kept chelating. My dh and I went round and

round on whether an EEG was necessary. My dh

said no, no EEGS or Pharma rx meds, lets just

chelate and eventually we will have enough

rounds and it will get better. He prevailed and

we waited.

>

> In the last 2 weeks it is like someone

flipped a switch. My son talks, and talks and

talks, and seems to understand everything. He

plays word games, makes jokes. He seems to be

100% present for the first time in his life. The

teacher reports he greets peers and plays with

them on the playground instead of merely running

around the perimeter as is his habit. He is by

no means recovered or age appropriate yet - but

he is starting to be on his way there. It is

like he can't tell me enough things - like he is

uncorked or something. The other night he would

not go to sleep, it was 11 pm and he is a good

sleeper. He had a place mat with the presidents

on it and he was hell bent on showing me that he

knew all their names from Washington onward. He

even told me, "you know, Washington even

has his own bridge." I almost fell over

laughing. I finally uttered words I thought I

would never say, but I had to..."sweetie, please

be quiet, stop talking, it is time to go to

sleep." We have done nothing really, other than

what we have for the last 2 years. In fact, we

have recently lowered all of his supplements

considerably. He takes nothing but the most

basic mins and vites, a few amino acids, liver

support, fish oils, antioxidants, and

probiotics. I even hesitated to post this, for

fear of jinxing it somehow.

>

> I posted this basically to say, there is

one miracle supplement only in my view: AC

chelation - dmsa and ala, week after week, after

tedious sleepless week. To anyone doubting it or

having a hard time of it, do not give up! We

have had stall after stall and regression, and

at times I wanted to throw in the towel,

thinking my boy is damaged beyond repair. But

with the support of people here on the boards

and Andy, and my spouse, we just forged on, and

on and on. And I believe we have another 200

rounds to go, for full recovery. But I believe

in my heart it is truly possible. We have only

one child, and for the first time, I feel his

presence, his true presence as another person

with opinions and ideas, fully present living in

our house. It is a beautiful thing.

>

> I want to close my post with an

inspirational saying my late mother, a

relentless optimist, kept by her bed side even

as she lay dying of breast cancer:

>

> Keep your heart open to dreams, for as long

as there is a dream, there is hope, and as long

as there is hope, there is joy in living.

>

> She lived this and believed this, and she

was very right. I have hope, and joy now.

>

> Irene

> 5 year old, 95 rounds

 

[Guest guest]

That's brilliant , took us more years than I can remember to get toilet trained.

Vicky In a message dated 20/08/2010 07:50:16 GMT Daylight Time, lisastubner@... writes:

Thanks for posting this. I really needed to read this as we stalled recently with big bacterial problems but we've got through it and now continuing with ALA. DS has started to go to the toilet and wee on his own recently and just yesterday he proudly did a number two on the toilet as well and I know I have A/C chelation to thank for that. I thought getting him toilet trained before he's fifth birthday would not happen but it looks like we are going to make it.So again, thanks for posting.

[Guest guest]

This I can relate to I remember who is profoundly autistic and non verbal always sobbing to himself, not raging but quietly sobbing in the back of the car after a particularly insensitive paed's appointments, most especially the time she told me outright "There is nothing in there"! It's high time people realised that just because little is coming out does not mean little is going in. I still harbour murderous thoughts on that B**** and console myself with what goes round comes round. I will never lose the negative energy towards some people, they need to pray I never gain any mystical demonic powers, ha, ha.

Vicky In a message dated 20/08/2010 09:57:57 GMT Daylight Time, thelifechangers@... writes:

I recall telling someone in front of my son that he could have been brain damaged after a mega accident... He did not say alot.. When \i went to parents evening a few months later the teacher asked if she could speak to me away from said son... She mentioned that everytime tasks were set which were not to DSs liking he told her he could not do it because he was brain damaged and she wanted to understand from me how this brain injury restricted his learning!!

[Guest guest]

My mantra is "autism is not an input problem it's an output problem"...

check out this u tube film that is just being released in the USA..

without a means of communicate, life is terrible...but these guys (and my DD are proof that there is "something" in there.... Oh Vicky when I hear doctors still saying this about human beings, my blood just boils over. People do not want to hurt others.... and anyone who hurts another will feel dreadful afterwards, kids with ASD have issues controlling there bodies.... I hope this trailer gives you a little bit of hope..

also check out "Institute for communication and inclusion Syracuse" for more information

http://www.wretchesandjabberers.org/

x

Re: FWD [autism] Re: Turning a corner: tho...

This I can relate to I remember who is profoundly autistic and non verbal always sobbing to himself, not raging but quietly sobbing in the back of the car after a particularly insensitive paed's appointments, most especially the time she told me outright "There is nothing in there"! It's high time people realised that just because little is coming out does not mean little is going in. I still harbour murderous thoughts on that B**** and console myself with what goes round comes round. I will never lose the negative energy towards some people, they need to pray I never gain any mystical demonic powers, ha, ha.

Vicky In a message dated 20/08/2010 09:57:57 GMT Daylight Time, thelifechangers@... writes:

I recall telling someone in front of my son that he could have been brain damaged after a mega accident... He did not say alot.. When \i went to parents evening a few months later the teacher asked if she could speak to me away from said son... She mentioned that everytime tasks were set which were not to DSs liking he told her he could not do it because he was brain damaged and she wanted to understand from me how this brain injury restricted his learning!!

[Guest guest]

I love this .

And sorry to keep harping on about Intensive Interaction at the

moment but it's been such an eye opener for me. I've been watching a

DVD showing I.I. with teenagers who look as though they've never had

any therapy in their lives, whatsoever. What strikes me is that as

soon as you contact them in a way that they can deal with, the eye

contact is there, the smiling, the communication, the sociability

and these are big boys!!! So in other words Autism is not a deficit

of any of those things, in this case it's just about giving them a

"language" they can communicate in and cutting down on sensory

overload. SHocking really!!!

It's not the same as what you're saying but I know it fits in

somehow. I wish the DVD was on the internet, I'd love everyone to

see these scenes.

Sara x

On 20/08/2010 10:14, Barrett wrote:

My mantra is "autism is not an input

problem it's an output problem"...

check out this u tube film that is just

being released in the USA..

without a means of communicate, life is

terrible...but these guys (and my DD are proof that

there is "something" in there.... Oh Vicky when I hear

doctors still saying this about human beings, my blood

just boils over. People do not want to hurt others....

and anyone who hurts another will feel dreadful

afterwards, kids with ASD have issues controlling there

bodies.... I hope this trailer gives you a little bit of

hope..

also check out "Institute for

communication and inclusion Syracuse" for more

information

x

Re:

FWD [autism] Re:

Turning a corner: tho...

This I can relate to I remember who is

profoundly autistic and non verbal always

sobbing to himself, not raging but quietly

sobbing in the back of the car after a

particularly insensitive paed's appointments,

most especially the time she told me outright

"There is nothing in there"! It's high

time people realised that just because little is

coming out does not mean little is going in. I

still harbour murderous thoughts on that B****

and console myself with what goes round comes

round. I will never lose the negative energy

towards some people, they need to pray I never

gain any mystical demonic powers, ha, ha.

Vicky

In a message dated 20/08/2010 09:57:57 GMT

Daylight Time, thelifechangers@...

writes:

I

recall telling someone in front of my son that

he could have been brain damaged after a mega

accident... He did not say alot.. When \i went

to parents evening a few months later the

teacher asked if she could speak to me away

from said son... She mentioned that everytime

tasks were set which were not to DSs liking he

told her he could not do it because he was

brain damaged and she wanted to understand

from me how this brain injury restricted his

learning!!

[Guest guest]

I think it's important to build on this and get it really established because there may well be regressions with toiletting but the more established it is the shorter time to get back on track, good luck.

Vicky In a message dated 20/08/2010 18:12:55 GMT Daylight Time, lisastubner@... writes:

Vicky, Thanks for the encouragement. This is huge for us and I just hope there's no regression of any kind for any reason and that we're on our way to having one less problem to deal with.

[Guest guest]

Vicky,Thanks for the encouragement. This is huge for us and I just hope there's no regression of any kind for any reason and that we're on our way to having one less problem to deal with. From: MaddiganV@... <MaddiganV@...>Subject: Re: FWD [autism] Re: Turning a corner: tho...Autism Treatment Date: Friday, August 20, 2010, 6:48 PM

That's brilliant , took us more years than I can remember to get toilet trained.

Vicky In a message dated 20/08/2010 07:50:16 GMT Daylight Time, lisastubner@... writes:

Thanks for posting this. I really needed to read this as we stalled recently with big bacterial problems but we've got through it and now continuing with ALA. DS has started to go to the toilet and wee on his own recently and just yesterday he proudly did a number two on the toilet as well and I know I have A/C chelation to thank for that. I thought getting him toilet trained before he's fifth birthday would not happen but it looks like we are going to make it.So again, thanks for posting.