Re: Psychotic episodes/regression?

[Guest guest]

Hi Vicki

My dd frequently attacked me when she hit puberty.I seemed to be the focus of

all her frustrations.

With retrospect the rages that appeared to come out of nowhere seem to be

related to illness, eg she would come down with a stinking cold the next day. I

think she was angry with me for sending her out feeling awful.

I think she may have also been really unhappy with her school placement,and

actually really depressed.

Thankfully sorting out health, dietary issues and school placement have stopped

the rages.

Hope things settle down

Best wishes

Kath

Sent from my iPad

[Guest guest]

Hi Vicki

My dd frequently attacked me when she hit puberty.I seemed to be the focus of

all her frustrations.

With retrospect the rages that appeared to come out of nowhere seem to be

related to illness, eg she would come down with a stinking cold the next day. I

think she was angry with me for sending her out feeling awful.

I think she may have also been really unhappy with her school placement,and

actually really depressed.

Thankfully sorting out health, dietary issues and school placement have stopped

the rages.

Hope things settle down

Best wishes

Kath

Sent from my iPad

[Guest guest]

Hi Vicki

My dd frequently attacked me when she hit puberty.I seemed to be the focus of

all her frustrations.

With retrospect the rages that appeared to come out of nowhere seem to be

related to illness, eg she would come down with a stinking cold the next day. I

think she was angry with me for sending her out feeling awful.

I think she may have also been really unhappy with her school placement,and

actually really depressed.

Thankfully sorting out health, dietary issues and school placement have stopped

the rages.

Hope things settle down

Best wishes

Kath

Sent from my iPad

[Guest guest]

No but its a full moon..............

Mx

is going through some kind of regression, totally mindless, psychotic episodes.He physically attacked me today, that's a first for him, he raged for about 30 minutes, therapist was here at the time so she helped me restrain him, he was completely exhausted afterwards.Anyone seen this before? Any ideas? The rages are coming out of nowhere.No changes in supps or diet.TIAVicky

[Guest guest]

For us it was reflux

x

>

> is going through some kind of regression, totally mindless, psychotic

episodes.

> He physically attacked me today, that's a first for him, he raged for about 30

minutes, therapist was here at the time so she helped me restrain him, he was

completely exhausted afterwards.

> Anyone seen this before? Any ideas? The rages are coming out of nowhere.

> No changes in supps or diet.

> TIA

> Vicky

>

[Guest guest]

For us it was reflux

x

>

> is going through some kind of regression, totally mindless, psychotic

episodes.

> He physically attacked me today, that's a first for him, he raged for about 30

minutes, therapist was here at the time so she helped me restrain him, he was

completely exhausted afterwards.

> Anyone seen this before? Any ideas? The rages are coming out of nowhere.

> No changes in supps or diet.

> TIA

> Vicky

>

[Guest guest]

For us it was reflux

x

>

> is going through some kind of regression, totally mindless, psychotic

episodes.

> He physically attacked me today, that's a first for him, he raged for about 30

minutes, therapist was here at the time so she helped me restrain him, he was

completely exhausted afterwards.

> Anyone seen this before? Any ideas? The rages are coming out of nowhere.

> No changes in supps or diet.

> TIA

> Vicky

>

[Guest guest]

For us , it was chronic soft stool constipation ( he was going daily and

yet....) the gastro said it must feel like stones

Hugs Nina x

> >

> > is going through some kind of regression, totally mindless, psychotic

episodes.

> > He physically attacked me today, that's a first for him, he raged for about

30 minutes, therapist was here at the time so she helped me restrain him, he was

completely exhausted afterwards.

> > Anyone seen this before? Any ideas? The rages are coming out of nowhere.

> > No changes in supps or diet.

> > TIA

> > Vicky

> >

>

[Guest guest]

For us , it was chronic soft stool constipation ( he was going daily and

yet....) the gastro said it must feel like stones

Hugs Nina x

> >

> > is going through some kind of regression, totally mindless, psychotic

episodes.

> > He physically attacked me today, that's a first for him, he raged for about

30 minutes, therapist was here at the time so she helped me restrain him, he was

completely exhausted afterwards.

> > Anyone seen this before? Any ideas? The rages are coming out of nowhere.

> > No changes in supps or diet.

> > TIA

> > Vicky

> >

>

[Guest guest]

>

> Hi Vicki

>

> My dd frequently attacked me when she hit puberty.I seemed to be the focus of

all her frustrations.

>

> With retrospect the rages that appeared to come out of nowhere seem to be

related to illness, eg she would come down with a stinking cold the next day. I

think she was angry with me for sending her out feeling awful.

>

> I think she may have also been really unhappy with her school placement,and

actually really depressed.

>

> Thankfully sorting out health, dietary issues and school placement have

stopped the rages.

>

> Hope things settle down

>

> Best wishes

>

> Kath

>

> Sent from my iPad

>

Dear Vicky,

So sorry to hear that is doing this. has been behaving this way

since she started going through puberty 2 years ago.

I find homeopathic remedies excellent for this. Bryonia helps and sometimes

stramonium or opium depending the specific presentation of behaviours. Do you

have a homeopath? If not I can really recommend mine - Suzie Nichol. She is

very knowledgable and has helped me with both children so much.

FWIW - I don't feel that the children are using their advanced brain when

directing their aggession at us. i think it is the old brain - more a

fight/flight response. I usually find for this is due to pain although

the causes of the pain can vary.

Best of luck. let us know how you get on.

. X

[Guest guest]

>

> Hi Vicki

>

> My dd frequently attacked me when she hit puberty.I seemed to be the focus of

all her frustrations.

>

> With retrospect the rages that appeared to come out of nowhere seem to be

related to illness, eg she would come down with a stinking cold the next day. I

think she was angry with me for sending her out feeling awful.

>

> I think she may have also been really unhappy with her school placement,and

actually really depressed.

>

> Thankfully sorting out health, dietary issues and school placement have

stopped the rages.

>

> Hope things settle down

>

> Best wishes

>

> Kath

>

> Sent from my iPad

>

Dear Vicky,

So sorry to hear that is doing this. has been behaving this way

since she started going through puberty 2 years ago.

I find homeopathic remedies excellent for this. Bryonia helps and sometimes

stramonium or opium depending the specific presentation of behaviours. Do you

have a homeopath? If not I can really recommend mine - Suzie Nichol. She is

very knowledgable and has helped me with both children so much.

FWIW - I don't feel that the children are using their advanced brain when

directing their aggession at us. i think it is the old brain - more a

fight/flight response. I usually find for this is due to pain although

the causes of the pain can vary.

Best of luck. let us know how you get on.

. X

[Guest guest]

>

> Hi Vicki

>

> My dd frequently attacked me when she hit puberty.I seemed to be the focus of

all her frustrations.

>

> With retrospect the rages that appeared to come out of nowhere seem to be

related to illness, eg she would come down with a stinking cold the next day. I

think she was angry with me for sending her out feeling awful.

>

> I think she may have also been really unhappy with her school placement,and

actually really depressed.

>

> Thankfully sorting out health, dietary issues and school placement have

stopped the rages.

>

> Hope things settle down

>

> Best wishes

>

> Kath

>

> Sent from my iPad

>

Dear Vicky,

So sorry to hear that is doing this. has been behaving this way

since she started going through puberty 2 years ago.

I find homeopathic remedies excellent for this. Bryonia helps and sometimes

stramonium or opium depending the specific presentation of behaviours. Do you

have a homeopath? If not I can really recommend mine - Suzie Nichol. She is

very knowledgable and has helped me with both children so much.

FWIW - I don't feel that the children are using their advanced brain when

directing their aggession at us. i think it is the old brain - more a

fight/flight response. I usually find for this is due to pain although

the causes of the pain can vary.

Best of luck. let us know how you get on.

. X

[Guest guest]

For us it was glutamate levels getting too high, along with a couple of other things. Anju Usman suggested a 3 pronged approach.

1] lower even natural levels of glutamate in foods [eg meat, peas, chickpeas are all high – also turkey especially]

2] stop all b vitamins for a period [we also stopped a multi which dr neubrander had recommended and his mb12.

3] use anti-strep herbs – although this was to treat the concurrent HUGE ocd problem he had at the time too.

A urine organic acids test showed high levels of kynurenic acid and quinolinate, both of which suggested gut bugs that thrive on b vits.

They also occur sometimes with hallucinations and schizophrenia, so we concluded he had been hallucinating – it certainly looked like that.

The ocd took some weeks, but the psychotic episodes never occurred again.....and they had been HORRIBLE.

You can find a link to levels of naturally occuring glutamate in foods here

http://dogtorj.com/g-a-r-d/foods-to-avoid-foods-to-enjoy/

The site is by a vet who found that lowering glutamates and amines in foods for dogs got rid of their epilepsy! He also has animal owners with autistic kids and has taken a real interest in this.

He writes a lot about it on his website, including reference to the GARD diet for epilepsy in people. [Glutamate and Amine Reduced Diet]

Some kids find l-glutamine helps – for us it has always been a big no-no, as does not seem to metabolise it right. Also – he has problems with

edginess with too much calcium, so we watch out for that.

ONE GREAT TIP – we found that a 1/2 teaspoon of bicarbonate in water really calms him quickly when he gets edgy..... any kind of excess acid or ammonia

may respond to this.

Hope something here helps – I know how upsetting this can be, but can tell you now it has been 4 years since anything like this happened here.

[Guest guest]

For us it was glutamate levels getting too high, along with a couple of other things. Anju Usman suggested a 3 pronged approach.

1] lower even natural levels of glutamate in foods [eg meat, peas, chickpeas are all high – also turkey especially]

2] stop all b vitamins for a period [we also stopped a multi which dr neubrander had recommended and his mb12.

3] use anti-strep herbs – although this was to treat the concurrent HUGE ocd problem he had at the time too.

A urine organic acids test showed high levels of kynurenic acid and quinolinate, both of which suggested gut bugs that thrive on b vits.

They also occur sometimes with hallucinations and schizophrenia, so we concluded he had been hallucinating – it certainly looked like that.

The ocd took some weeks, but the psychotic episodes never occurred again.....and they had been HORRIBLE.

You can find a link to levels of naturally occuring glutamate in foods here

http://dogtorj.com/g-a-r-d/foods-to-avoid-foods-to-enjoy/

The site is by a vet who found that lowering glutamates and amines in foods for dogs got rid of their epilepsy! He also has animal owners with autistic kids and has taken a real interest in this.

He writes a lot about it on his website, including reference to the GARD diet for epilepsy in people. [Glutamate and Amine Reduced Diet]

Some kids find l-glutamine helps – for us it has always been a big no-no, as does not seem to metabolise it right. Also – he has problems with

edginess with too much calcium, so we watch out for that.

ONE GREAT TIP – we found that a 1/2 teaspoon of bicarbonate in water really calms him quickly when he gets edgy..... any kind of excess acid or ammonia

may respond to this.

Hope something here helps – I know how upsetting this can be, but can tell you now it has been 4 years since anything like this happened here.

[Guest guest]

Hi Vicky its Eileen as in Eileen and . Hope you are both well.

Sorry if this confuses you but can I add into the mix of replies you have,

because the behaviour you describe is like J in a full-on Strep flare. We have

been battling strep now for coming up five years.

We've had intermittent progress on a lot of things but now we are doing better.

Starting with this - Have you seen Dr. Goyal's article on strep, mainly the last

paragraph.

http://www.autismeye.com/features-2

He points out how many of the kids do well, only to struggle with what is left

after healing in the shape of OCD and strep. That's what we have with ,

who recovered very well at about age four, and some of the flares are so bad it

is like watching night change into day, and so far all we have found to control

the tics and OCD is to go on permanent antibiotics. What we have found in our

case is, when we do abx we have NO tics, they just go. When the strep starts to

win, with us, the facial tics start, then it affects the body, and thinking

follows. OCD. To add, but not to go off on a tangent, its quite simple in my

book. J was a viral kid. When you do viral clearing treatments on a kid with

immune problems, after that I think you can leave the way wide open to strep and

possibly other bacteria like staph for instance. Nature abhors a vacuum and

its ready to move in, so if you're doing/have done viral treatments, watch out

for strep.

We first realised that Strep was huge in our particular case when we were in the

middle of another terrible OCD/tic regression, and a very fine but somewhat

eccentric DAN we all know (female) put him on Immunovir and Zithromax for a

month. We saw the most amazing comeback, then she stopped the abx. Very

gradually things got worse. Docs were putting him on Zithro for things like

Guardia bugs, and every time we saw wows, then he'd go down to strep again. We

really didn't know what the hell was going on, but we do now.

What we didn't know was, when autoimmunity to strep happens, if you stop and

start antibiotics, with each flare you face, it gets worse. It is like a kind

of sensitivity to the bacteria develops. This is PANDAS, it has a stupid name

which stops people taking it seriously. Certainly I didn't buy into it until J

ticked every box but then at least I knew what I was fighting. We had to get on

the abx and stay on them (prophylaxis). This was so if J encountered the strep,

he would be protected. Then when the strep starts to win, we had to up the

dose.

To work with this, I have had to change my thinking. Here's the thing. They

don't know a way (yet) to stop the antibody response which hits the brain. They

aren't even sure of that process now with the latest research out of Gosh. They

are now talking about an abnormal cytokine response. Antibiotics are all they

know.

When I first realised biomed could work (and it did for us, and does,

dramatically) I thought like this. Test. J tests high for Clostridia. Treat,

see improvement. Discovery. Methylation defect. Treat, again, improvement.

And so on, like most people on here, brilliant, eventually you learn how your

child is unique and how to bring them to health, holistically, using a range of

treatments. But then I got to a point where I could NOT treat the OCD, and the

tics worsened over time. That is because, according to research, that

antibodies to strep attack the basal ganglia which is the area of the brain

associated with movement (and strongly linked, they have found, with OCD), So I

made the decision that this is where we are right now, and I'm researching and

trying alternatives to abx. D3 looks like a winner.

I don't want to revisit the last few years of regressions and up and downs ever

again which are OCD and tic related. I am trying alternatives because a lifetime

of abx is a scary prospect, but I don't see what choice I have right now. The

nutshell of this is, you can't kill the antibodies. There is IVIG, but not

available privately in UK, and abroad costs a fortune, with no guarantees even

if you wanted to go down what is a quite risky and invasive road.

Some people are using homeopathy because it treats the body at a cellular level.

I don't know enough about homeopathy to comment, its possibly for us, but not

until I know a bit more about it. I have dabbled and the results were good, but

I had to firefight quickly or lose J, but that's just my particular case.

The good news (if it is good). PANDAS parents say they can pinpoint the exact

day when their child changes character because things have got to an advanced

stage. We had this. Everyone who knows J on here would describe him as a

laid-back, clever, loveable kind of kid. When this finally got out of control,

my child would not leave the house, and this one day we pinpointed, he sang the

same song over a hundred times and in that day ritualised how he would do that.

The tics progressed from facial tics to jerks and this is when PANDAS hit worst

for us. Thank God for Dan Goyal, who recognised what we were up against. When

I rang him that day I thought we would be living with this for the rest of our

lives.

After a lot of applying head to various brick walls, taking this to an art form,

Visits to GOSH, NHS fund his abx (but make it clear they don't buy into this

model). They prefer to call it Tourettes because " tics wax and wane " .

If you and anyone else take nothing else out of this post,who are arguing for

abx therapy which is damned expensive, this is the big stick they use to beat

you with, and this is how I argued with them. So what are you saying? That it

is acceptable to have a life of totally debilitating waxing and waning tics when

we have evidence that this is not necessary given antibiotics, and what is

worse, that each time we have a flare, the autoimmunity means that next one is

worse? Is that what you mean, that it is OK to leave my child untreated?

Well my kid has no tics on abx, and he has now no stims on another intervention,

so I'm looking at this and thinking, well " Autism " is an excuse not to treat

kids, and Tourettes is another version of Autism where they give a diagnosis

whilst completely shutting down what the cause may be.

In all the flares, when we were struggling to stablise J on a protective

antibiotic (the right and safe dose) jerks meant he would struggle to sleep, we

have had 18 months of a routine of going to bed at 11, exhausted, getting up at

2/3 am, then going to sleep at 6, getting up at 8am and going to school. Right

now, that's over. 10pm sleeps till 8am.

What I am going to say is going to sound unbelievable to most people, but what

we have seen is, when we have been without antibiotics, 24 to 48 hours later, J

is gripped by tics. We get rocking, myclonic type of jerking, to the extent you

describe. I am not recommending antibiotics per se, I know folks hate them on

here, and rightly so, but they are the only thing that works for us, and now we

know when a flare is coming, we up them, and he gets better quick.

So now the good stuff. Jay's stable at the moment. From Mums on here - the

Vitamin D3 – love it, not only for J but for me as well. Added it in recently,

protects against all sorts of stuff, think it is a crucial piece of the PANDAS

weaponry. Also lifts our mood in this house. High dosages, was piffling about

until another Mum on here put me right. Whilst we have been giving it, no

pandas flares on the abx. Nothing. Looking back I would have put this in at the

start and kept it in. Now I will megadose it I see a flare again. Like

everyone here, I am still learning, I intend to find my way through the

antibiotic problem.

Yesterday at J's school concert. I am not bragging, just telling you after

seven years that recovery is STILL possible. Like most of you, been through it.

I saw Jay walk in the hall, he sat there, tic-free, very together, referencing

all the kids socially (but getting not much back apart from one lad, his one

best mate) and I was PROUD. Of course he still has autism, whatever that is.

But yesterday I clearly saw he had come through the worst of it and now its time

to fight it again. I might have to chase some more pavements, even though they

lead nowhere, to paraphrase Adele.

Sorry meant to write a post, wrote an essay, been too long off here but still in

touch with a lot of you who've got me through the worst seven years (and the

best of it as well. Also about the bone growth in your previous post, I had a

thought, bony growths can be a cousin of PANDAS in the shape of RA. Not usually

on the parts of the body you mention though, but definitely the hands. An

autoimmune condition, very much like PANDAS.

Keep going Vicky but go in now and treat heavy for strep if you see any

parallels because it can undo such a lot of good work. Hope that helps. xxxxx

Herbs didn't cut it for us when we reached the jerking stage.

I'm happy to help anyone btw who's going through this kind of thing.

I also buy into the glutamate theory, concurrently treating that as well. We are

still learning and Jay's profile changes over the years like a lot of the kids.

Eileen, and xxx

Very much love to all and have the Christmas you want, not one everyone else

wants. xxx

>

> If he is tolerating antihistamines you should def try them no ASAP. Ideally

> http://www.amazon.co.uk/Coricidin-Antihistamine-Suppressant-Pressure-16-Coun

> t/dp/B0011DTFYC/ref=sr_1_cc_1?s=dvd & ie=UTF8 & qid=1323961825 & sr=1-1-catcorr

> but if you cannot get it quickly try cetirizine or loratidine (everywhere

> should sell them different brands).

>

> Also consider something for reflux, ranitidine is widely available ­ called

> Zantac or Gavis_something (read ingredients, it should have ranitidine and

> nothing else). ons etc have it own label

>

> nx

>

>

> Reply-To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Date: Thu, 15 Dec 2011 09:44:32 -0500 (EST)

> To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Subject: Re: Re: Psychotic episodes/regression?

>

>

>

>

>

>

> Thanks and everyone that responded.

> Quite a few possibles, this has been boiling up for some time, he has become

> more willfull.

> I would have been in serious problems had the therapist not been there to

> help.

> I don't give B's because he is a rager on them and I don't rule

> out the most recent attempt to still have had a longer term effect on him,

> calcium is a no also along with Vit C and anything high oxalate.

> I haven't seen like this since the days of his old school and severe

> gut pain, the difference is he is now double the size and strength!

> Glut anything is out, but we have been eating Turkey mince for years with no

> problems, what's the glutamate connection there?

> I am sure strep is bad, he is very OCD but not responding too well.

> Last night we had the Ultrica rash [sp] during dinner, he stimmed and jerked

> all the way through getting consistantly worse because he couldn't settle to

> eat and he loves his food.

> He is veyr wrung out a lot of the time, exhausted but raging, sleeping well.

> Vicky

>

>

> Re: Psychotic episodes/regression?

>

>

>

>

>

> For us it was glutamate levels getting too high, along with a couple of

> other things. Anju Usman suggested a 3 pronged approach.

>

> 1] lower even natural levels of glutamate in foods [eg meat, peas, chickpeas

> are all high ­ also turkey especially]

> 2] stop all b vitamins for a period [we also stopped a multi which dr

> neubrander had recommended and his mb12.

> 3] use anti-strep herbs ­ although this was to treat the concurrent HUGE ocd

> problem he had at the time too.

>

> A urine organic acids test showed high levels of kynurenic acid and

> quinolinate, both of which suggested gut bugs that thrive on b vits.

> They also occur sometimes with hallucinations and schizophrenia, so we

> concluded he had been hallucinating ­ it certainly looked like that.

>

> The ocd took some weeks, but the psychotic episodes never occurred

> again.....and they had been HORRIBLE.

>

> You can find a link to levels of naturally occuring glutamate in foods here

>

> http://dogtorj.com/g-a-r-d/foods-to-avoid-foods-to-enjoy/

>

> The site is by a vet who found that lowering glutamates and amines in foods

> for dogs got rid of their epilepsy! He also has animal owners with autistic

> kids and has taken a real interest in this.

> He writes a lot about it on his website, including reference to the GARD

> diet for epilepsy in people. [Glutamate and Amine Reduced Diet]

>

> Some kids find l-glutamine helps ­ for us it has always been a big no-no, as

> does not seem to metabolise it right. Also ­ he has problems with

> edginess with too much calcium, so we watch out for that.

>

> ONE GREAT TIP ­ we found that a 1/2 teaspoon of bicarbonate in water really

> calms him quickly when he gets edgy..... any kind of excess acid or ammonia

> may respond to this.

>

> Hope something here helps ­ I know how upsetting this can be, but can tell

> you now it has been 4 years since anything like this happened here.

>

>

>

[Guest guest]

Hi Vicky its Eileen as in Eileen and . Hope you are both well.

Sorry if this confuses you but can I add into the mix of replies you have,

because the behaviour you describe is like J in a full-on Strep flare. We have

been battling strep now for coming up five years.

We've had intermittent progress on a lot of things but now we are doing better.

Starting with this - Have you seen Dr. Goyal's article on strep, mainly the last

paragraph.

http://www.autismeye.com/features-2

He points out how many of the kids do well, only to struggle with what is left

after healing in the shape of OCD and strep. That's what we have with ,

who recovered very well at about age four, and some of the flares are so bad it

is like watching night change into day, and so far all we have found to control

the tics and OCD is to go on permanent antibiotics. What we have found in our

case is, when we do abx we have NO tics, they just go. When the strep starts to

win, with us, the facial tics start, then it affects the body, and thinking

follows. OCD. To add, but not to go off on a tangent, its quite simple in my

book. J was a viral kid. When you do viral clearing treatments on a kid with

immune problems, after that I think you can leave the way wide open to strep and

possibly other bacteria like staph for instance. Nature abhors a vacuum and

its ready to move in, so if you're doing/have done viral treatments, watch out

for strep.

We first realised that Strep was huge in our particular case when we were in the

middle of another terrible OCD/tic regression, and a very fine but somewhat

eccentric DAN we all know (female) put him on Immunovir and Zithromax for a

month. We saw the most amazing comeback, then she stopped the abx. Very

gradually things got worse. Docs were putting him on Zithro for things like

Guardia bugs, and every time we saw wows, then he'd go down to strep again. We

really didn't know what the hell was going on, but we do now.

What we didn't know was, when autoimmunity to strep happens, if you stop and

start antibiotics, with each flare you face, it gets worse. It is like a kind

of sensitivity to the bacteria develops. This is PANDAS, it has a stupid name

which stops people taking it seriously. Certainly I didn't buy into it until J

ticked every box but then at least I knew what I was fighting. We had to get on

the abx and stay on them (prophylaxis). This was so if J encountered the strep,

he would be protected. Then when the strep starts to win, we had to up the

dose.

To work with this, I have had to change my thinking. Here's the thing. They

don't know a way (yet) to stop the antibody response which hits the brain. They

aren't even sure of that process now with the latest research out of Gosh. They

are now talking about an abnormal cytokine response. Antibiotics are all they

know.

When I first realised biomed could work (and it did for us, and does,

dramatically) I thought like this. Test. J tests high for Clostridia. Treat,

see improvement. Discovery. Methylation defect. Treat, again, improvement.

And so on, like most people on here, brilliant, eventually you learn how your

child is unique and how to bring them to health, holistically, using a range of

treatments. But then I got to a point where I could NOT treat the OCD, and the

tics worsened over time. That is because, according to research, that

antibodies to strep attack the basal ganglia which is the area of the brain

associated with movement (and strongly linked, they have found, with OCD), So I

made the decision that this is where we are right now, and I'm researching and

trying alternatives to abx. D3 looks like a winner.

I don't want to revisit the last few years of regressions and up and downs ever

again which are OCD and tic related. I am trying alternatives because a lifetime

of abx is a scary prospect, but I don't see what choice I have right now. The

nutshell of this is, you can't kill the antibodies. There is IVIG, but not

available privately in UK, and abroad costs a fortune, with no guarantees even

if you wanted to go down what is a quite risky and invasive road.

Some people are using homeopathy because it treats the body at a cellular level.

I don't know enough about homeopathy to comment, its possibly for us, but not

until I know a bit more about it. I have dabbled and the results were good, but

I had to firefight quickly or lose J, but that's just my particular case.

The good news (if it is good). PANDAS parents say they can pinpoint the exact

day when their child changes character because things have got to an advanced

stage. We had this. Everyone who knows J on here would describe him as a

laid-back, clever, loveable kind of kid. When this finally got out of control,

my child would not leave the house, and this one day we pinpointed, he sang the

same song over a hundred times and in that day ritualised how he would do that.

The tics progressed from facial tics to jerks and this is when PANDAS hit worst

for us. Thank God for Dan Goyal, who recognised what we were up against. When

I rang him that day I thought we would be living with this for the rest of our

lives.

After a lot of applying head to various brick walls, taking this to an art form,

Visits to GOSH, NHS fund his abx (but make it clear they don't buy into this

model). They prefer to call it Tourettes because " tics wax and wane " .

If you and anyone else take nothing else out of this post,who are arguing for

abx therapy which is damned expensive, this is the big stick they use to beat

you with, and this is how I argued with them. So what are you saying? That it

is acceptable to have a life of totally debilitating waxing and waning tics when

we have evidence that this is not necessary given antibiotics, and what is

worse, that each time we have a flare, the autoimmunity means that next one is

worse? Is that what you mean, that it is OK to leave my child untreated?

Well my kid has no tics on abx, and he has now no stims on another intervention,

so I'm looking at this and thinking, well " Autism " is an excuse not to treat

kids, and Tourettes is another version of Autism where they give a diagnosis

whilst completely shutting down what the cause may be.

In all the flares, when we were struggling to stablise J on a protective

antibiotic (the right and safe dose) jerks meant he would struggle to sleep, we

have had 18 months of a routine of going to bed at 11, exhausted, getting up at

2/3 am, then going to sleep at 6, getting up at 8am and going to school. Right

now, that's over. 10pm sleeps till 8am.

What I am going to say is going to sound unbelievable to most people, but what

we have seen is, when we have been without antibiotics, 24 to 48 hours later, J

is gripped by tics. We get rocking, myclonic type of jerking, to the extent you

describe. I am not recommending antibiotics per se, I know folks hate them on

here, and rightly so, but they are the only thing that works for us, and now we

know when a flare is coming, we up them, and he gets better quick.

So now the good stuff. Jay's stable at the moment. From Mums on here - the

Vitamin D3 – love it, not only for J but for me as well. Added it in recently,

protects against all sorts of stuff, think it is a crucial piece of the PANDAS

weaponry. Also lifts our mood in this house. High dosages, was piffling about

until another Mum on here put me right. Whilst we have been giving it, no

pandas flares on the abx. Nothing. Looking back I would have put this in at the

start and kept it in. Now I will megadose it I see a flare again. Like

everyone here, I am still learning, I intend to find my way through the

antibiotic problem.

Yesterday at J's school concert. I am not bragging, just telling you after

seven years that recovery is STILL possible. Like most of you, been through it.

I saw Jay walk in the hall, he sat there, tic-free, very together, referencing

all the kids socially (but getting not much back apart from one lad, his one

best mate) and I was PROUD. Of course he still has autism, whatever that is.

But yesterday I clearly saw he had come through the worst of it and now its time

to fight it again. I might have to chase some more pavements, even though they

lead nowhere, to paraphrase Adele.

Sorry meant to write a post, wrote an essay, been too long off here but still in

touch with a lot of you who've got me through the worst seven years (and the

best of it as well. Also about the bone growth in your previous post, I had a

thought, bony growths can be a cousin of PANDAS in the shape of RA. Not usually

on the parts of the body you mention though, but definitely the hands. An

autoimmune condition, very much like PANDAS.

Keep going Vicky but go in now and treat heavy for strep if you see any

parallels because it can undo such a lot of good work. Hope that helps. xxxxx

Herbs didn't cut it for us when we reached the jerking stage.

I'm happy to help anyone btw who's going through this kind of thing.

I also buy into the glutamate theory, concurrently treating that as well. We are

still learning and Jay's profile changes over the years like a lot of the kids.

Eileen, and xxx

Very much love to all and have the Christmas you want, not one everyone else

wants. xxx

>

> If he is tolerating antihistamines you should def try them no ASAP. Ideally

> http://www.amazon.co.uk/Coricidin-Antihistamine-Suppressant-Pressure-16-Coun

> t/dp/B0011DTFYC/ref=sr_1_cc_1?s=dvd & ie=UTF8 & qid=1323961825 & sr=1-1-catcorr

> but if you cannot get it quickly try cetirizine or loratidine (everywhere

> should sell them different brands).

>

> Also consider something for reflux, ranitidine is widely available ­ called

> Zantac or Gavis_something (read ingredients, it should have ranitidine and

> nothing else). ons etc have it own label

>

> nx

>

>

> Reply-To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Date: Thu, 15 Dec 2011 09:44:32 -0500 (EST)

> To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Subject: Re: Re: Psychotic episodes/regression?

>

>

>

>

>

>

> Thanks and everyone that responded.

> Quite a few possibles, this has been boiling up for some time, he has become

> more willfull.

> I would have been in serious problems had the therapist not been there to

> help.

> I don't give B's because he is a rager on them and I don't rule

> out the most recent attempt to still have had a longer term effect on him,

> calcium is a no also along with Vit C and anything high oxalate.

> I haven't seen like this since the days of his old school and severe

> gut pain, the difference is he is now double the size and strength!

> Glut anything is out, but we have been eating Turkey mince for years with no

> problems, what's the glutamate connection there?

> I am sure strep is bad, he is very OCD but not responding too well.

> Last night we had the Ultrica rash [sp] during dinner, he stimmed and jerked

> all the way through getting consistantly worse because he couldn't settle to

> eat and he loves his food.

> He is veyr wrung out a lot of the time, exhausted but raging, sleeping well.

> Vicky

>

>

> Re: Psychotic episodes/regression?

>

>

>

>

>

> For us it was glutamate levels getting too high, along with a couple of

> other things. Anju Usman suggested a 3 pronged approach.

>

> 1] lower even natural levels of glutamate in foods [eg meat, peas, chickpeas

> are all high ­ also turkey especially]

> 2] stop all b vitamins for a period [we also stopped a multi which dr

> neubrander had recommended and his mb12.

> 3] use anti-strep herbs ­ although this was to treat the concurrent HUGE ocd

> problem he had at the time too.

>

> A urine organic acids test showed high levels of kynurenic acid and

> quinolinate, both of which suggested gut bugs that thrive on b vits.

> They also occur sometimes with hallucinations and schizophrenia, so we

> concluded he had been hallucinating ­ it certainly looked like that.

>

> The ocd took some weeks, but the psychotic episodes never occurred

> again.....and they had been HORRIBLE.

>

> You can find a link to levels of naturally occuring glutamate in foods here

>

> http://dogtorj.com/g-a-r-d/foods-to-avoid-foods-to-enjoy/

>

> The site is by a vet who found that lowering glutamates and amines in foods

> for dogs got rid of their epilepsy! He also has animal owners with autistic

> kids and has taken a real interest in this.

> He writes a lot about it on his website, including reference to the GARD

> diet for epilepsy in people. [Glutamate and Amine Reduced Diet]

>

> Some kids find l-glutamine helps ­ for us it has always been a big no-no, as

> does not seem to metabolise it right. Also ­ he has problems with

> edginess with too much calcium, so we watch out for that.

>

> ONE GREAT TIP ­ we found that a 1/2 teaspoon of bicarbonate in water really

> calms him quickly when he gets edgy..... any kind of excess acid or ammonia

> may respond to this.

>

> Hope something here helps ­ I know how upsetting this can be, but can tell

> you now it has been 4 years since anything like this happened here.

>

>

>

[Guest guest]

Hi Vicky its Eileen as in Eileen and . Hope you are both well.

Sorry if this confuses you but can I add into the mix of replies you have,

because the behaviour you describe is like J in a full-on Strep flare. We have

been battling strep now for coming up five years.

We've had intermittent progress on a lot of things but now we are doing better.

Starting with this - Have you seen Dr. Goyal's article on strep, mainly the last

paragraph.

http://www.autismeye.com/features-2

He points out how many of the kids do well, only to struggle with what is left

after healing in the shape of OCD and strep. That's what we have with ,

who recovered very well at about age four, and some of the flares are so bad it

is like watching night change into day, and so far all we have found to control

the tics and OCD is to go on permanent antibiotics. What we have found in our

case is, when we do abx we have NO tics, they just go. When the strep starts to

win, with us, the facial tics start, then it affects the body, and thinking

follows. OCD. To add, but not to go off on a tangent, its quite simple in my

book. J was a viral kid. When you do viral clearing treatments on a kid with

immune problems, after that I think you can leave the way wide open to strep and

possibly other bacteria like staph for instance. Nature abhors a vacuum and

its ready to move in, so if you're doing/have done viral treatments, watch out

for strep.

We first realised that Strep was huge in our particular case when we were in the

middle of another terrible OCD/tic regression, and a very fine but somewhat

eccentric DAN we all know (female) put him on Immunovir and Zithromax for a

month. We saw the most amazing comeback, then she stopped the abx. Very

gradually things got worse. Docs were putting him on Zithro for things like

Guardia bugs, and every time we saw wows, then he'd go down to strep again. We

really didn't know what the hell was going on, but we do now.

What we didn't know was, when autoimmunity to strep happens, if you stop and

start antibiotics, with each flare you face, it gets worse. It is like a kind

of sensitivity to the bacteria develops. This is PANDAS, it has a stupid name

which stops people taking it seriously. Certainly I didn't buy into it until J

ticked every box but then at least I knew what I was fighting. We had to get on

the abx and stay on them (prophylaxis). This was so if J encountered the strep,

he would be protected. Then when the strep starts to win, we had to up the

dose.

To work with this, I have had to change my thinking. Here's the thing. They

don't know a way (yet) to stop the antibody response which hits the brain. They

aren't even sure of that process now with the latest research out of Gosh. They

are now talking about an abnormal cytokine response. Antibiotics are all they

know.

When I first realised biomed could work (and it did for us, and does,

dramatically) I thought like this. Test. J tests high for Clostridia. Treat,

see improvement. Discovery. Methylation defect. Treat, again, improvement.

And so on, like most people on here, brilliant, eventually you learn how your

child is unique and how to bring them to health, holistically, using a range of

treatments. But then I got to a point where I could NOT treat the OCD, and the

tics worsened over time. That is because, according to research, that

antibodies to strep attack the basal ganglia which is the area of the brain

associated with movement (and strongly linked, they have found, with OCD), So I

made the decision that this is where we are right now, and I'm researching and

trying alternatives to abx. D3 looks like a winner.

I don't want to revisit the last few years of regressions and up and downs ever

again which are OCD and tic related. I am trying alternatives because a lifetime

of abx is a scary prospect, but I don't see what choice I have right now. The

nutshell of this is, you can't kill the antibodies. There is IVIG, but not

available privately in UK, and abroad costs a fortune, with no guarantees even

if you wanted to go down what is a quite risky and invasive road.

Some people are using homeopathy because it treats the body at a cellular level.

I don't know enough about homeopathy to comment, its possibly for us, but not

until I know a bit more about it. I have dabbled and the results were good, but

I had to firefight quickly or lose J, but that's just my particular case.

The good news (if it is good). PANDAS parents say they can pinpoint the exact

day when their child changes character because things have got to an advanced

stage. We had this. Everyone who knows J on here would describe him as a

laid-back, clever, loveable kind of kid. When this finally got out of control,

my child would not leave the house, and this one day we pinpointed, he sang the

same song over a hundred times and in that day ritualised how he would do that.

The tics progressed from facial tics to jerks and this is when PANDAS hit worst

for us. Thank God for Dan Goyal, who recognised what we were up against. When

I rang him that day I thought we would be living with this for the rest of our

lives.

After a lot of applying head to various brick walls, taking this to an art form,

Visits to GOSH, NHS fund his abx (but make it clear they don't buy into this

model). They prefer to call it Tourettes because " tics wax and wane " .

If you and anyone else take nothing else out of this post,who are arguing for

abx therapy which is damned expensive, this is the big stick they use to beat

you with, and this is how I argued with them. So what are you saying? That it

is acceptable to have a life of totally debilitating waxing and waning tics when

we have evidence that this is not necessary given antibiotics, and what is

worse, that each time we have a flare, the autoimmunity means that next one is

worse? Is that what you mean, that it is OK to leave my child untreated?

Well my kid has no tics on abx, and he has now no stims on another intervention,

so I'm looking at this and thinking, well " Autism " is an excuse not to treat

kids, and Tourettes is another version of Autism where they give a diagnosis

whilst completely shutting down what the cause may be.

In all the flares, when we were struggling to stablise J on a protective

antibiotic (the right and safe dose) jerks meant he would struggle to sleep, we

have had 18 months of a routine of going to bed at 11, exhausted, getting up at

2/3 am, then going to sleep at 6, getting up at 8am and going to school. Right

now, that's over. 10pm sleeps till 8am.

What I am going to say is going to sound unbelievable to most people, but what

we have seen is, when we have been without antibiotics, 24 to 48 hours later, J

is gripped by tics. We get rocking, myclonic type of jerking, to the extent you

describe. I am not recommending antibiotics per se, I know folks hate them on

here, and rightly so, but they are the only thing that works for us, and now we

know when a flare is coming, we up them, and he gets better quick.

So now the good stuff. Jay's stable at the moment. From Mums on here - the

Vitamin D3 – love it, not only for J but for me as well. Added it in recently,

protects against all sorts of stuff, think it is a crucial piece of the PANDAS

weaponry. Also lifts our mood in this house. High dosages, was piffling about

until another Mum on here put me right. Whilst we have been giving it, no

pandas flares on the abx. Nothing. Looking back I would have put this in at the

start and kept it in. Now I will megadose it I see a flare again. Like

everyone here, I am still learning, I intend to find my way through the

antibiotic problem.

Yesterday at J's school concert. I am not bragging, just telling you after

seven years that recovery is STILL possible. Like most of you, been through it.

I saw Jay walk in the hall, he sat there, tic-free, very together, referencing

all the kids socially (but getting not much back apart from one lad, his one

best mate) and I was PROUD. Of course he still has autism, whatever that is.

But yesterday I clearly saw he had come through the worst of it and now its time

to fight it again. I might have to chase some more pavements, even though they

lead nowhere, to paraphrase Adele.

Sorry meant to write a post, wrote an essay, been too long off here but still in

touch with a lot of you who've got me through the worst seven years (and the

best of it as well. Also about the bone growth in your previous post, I had a

thought, bony growths can be a cousin of PANDAS in the shape of RA. Not usually

on the parts of the body you mention though, but definitely the hands. An

autoimmune condition, very much like PANDAS.

Keep going Vicky but go in now and treat heavy for strep if you see any

parallels because it can undo such a lot of good work. Hope that helps. xxxxx

Herbs didn't cut it for us when we reached the jerking stage.

I'm happy to help anyone btw who's going through this kind of thing.

I also buy into the glutamate theory, concurrently treating that as well. We are

still learning and Jay's profile changes over the years like a lot of the kids.

Eileen, and xxx

Very much love to all and have the Christmas you want, not one everyone else

wants. xxx

>

> If he is tolerating antihistamines you should def try them no ASAP. Ideally

> http://www.amazon.co.uk/Coricidin-Antihistamine-Suppressant-Pressure-16-Coun

> t/dp/B0011DTFYC/ref=sr_1_cc_1?s=dvd & ie=UTF8 & qid=1323961825 & sr=1-1-catcorr

> but if you cannot get it quickly try cetirizine or loratidine (everywhere

> should sell them different brands).

>

> Also consider something for reflux, ranitidine is widely available ­ called

> Zantac or Gavis_something (read ingredients, it should have ranitidine and

> nothing else). ons etc have it own label

>

> nx

>

>

> Reply-To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Date: Thu, 15 Dec 2011 09:44:32 -0500 (EST)

> To: " Autism-Biomedical-Europe "

> <Autism-Biomedical-Europe >

> Subject: Re: Re: Psychotic episodes/regression?

>

>

>

>

>

>

> Thanks and everyone that responded.

> Quite a few possibles, this has been boiling up for some time, he has become

> more willfull.

> I would have been in serious problems had the therapist not been there to

> help.

> I don't give B's because he is a rager on them and I don't rule

> out the most recent attempt to still have had a longer term effect on him,

> calcium is a no also along with Vit C and anything high oxalate.

> I haven't seen like this since the days of his old school and severe

> gut pain, the difference is he is now double the size and strength!

> Glut anything is out, but we have been eating Turkey mince for years with no

> problems, what's the glutamate connection there?

> I am sure strep is bad, he is very OCD but not responding too well.

> Last night we had the Ultrica rash [sp] during dinner, he stimmed and jerked

> all the way through getting consistantly worse because he couldn't settle to

> eat and he loves his food.

> He is veyr wrung out a lot of the time, exhausted but raging, sleeping well.

> Vicky

>

>

> Re: Psychotic episodes/regression?

>

>

>

>

>

> For us it was glutamate levels getting too high, along with a couple of

> other things. Anju Usman suggested a 3 pronged approach.

>

> 1] lower even natural levels of glutamate in foods [eg meat, peas, chickpeas

> are all high ­ also turkey especially]

> 2] stop all b vitamins for a period [we also stopped a multi which dr

> neubrander had recommended and his mb12.

> 3] use anti-strep herbs ­ although this was to treat the concurrent HUGE ocd

> problem he had at the time too.

>

> A urine organic acids test showed high levels of kynurenic acid and

> quinolinate, both of which suggested gut bugs that thrive on b vits.

> They also occur sometimes with hallucinations and schizophrenia, so we

> concluded he had been hallucinating ­ it certainly looked like that.

>

> The ocd took some weeks, but the psychotic episodes never occurred

> again.....and they had been HORRIBLE.

>

> You can find a link to levels of naturally occuring glutamate in foods here

>

> http://dogtorj.com/g-a-r-d/foods-to-avoid-foods-to-enjoy/

>

> The site is by a vet who found that lowering glutamates and amines in foods

> for dogs got rid of their epilepsy! He also has animal owners with autistic

> kids and has taken a real interest in this.

> He writes a lot about it on his website, including reference to the GARD

> diet for epilepsy in people. [Glutamate and Amine Reduced Diet]

>

> Some kids find l-glutamine helps ­ for us it has always been a big no-no, as

> does not seem to metabolise it right. Also ­ he has problems with

> edginess with too much calcium, so we watch out for that.

>

> ONE GREAT TIP ­ we found that a 1/2 teaspoon of bicarbonate in water really

> calms him quickly when he gets edgy..... any kind of excess acid or ammonia

> may respond to this.

>

> Hope something here helps ­ I know how upsetting this can be, but can tell

> you now it has been 4 years since anything like this happened here.

>

>

>

[Guest guest]

I get where you are coming from, Strep can be hard to test for. I took J in the

middle of a flare, but some of the kids also test negative for it anyway and

still have it. My experience is once the strep has really caught hold, its at

such a high level that we tested positive for it, whereas we might not have done

before when it was gathering momentum.

I am SO done with tests as well but they're the only thing we can do here to get

the right treatment. They will put my child on untested narcoleptic medication

for debilitating tics, but an abx, even though so many nt mainstream kids are on

them for immune related condition? Had to fight for it.

Depends what antibiotic you are on Vicky, has had a hard time on most of

them, but settles well like a lot of the kids on Zithro. Jay had visual stims

which have been resolved as the treatment has gone over a period of months.

I've found if you go in initially at too low a level, things get worse. We dose

in morning and put in probiotic at night.

I'm megadosing Vit D at the moment. I don't plan to keep J on it forever, its

in my armoury for the Winter when he's most vulnerable, then I'll keep it in at

RDA.

I feel like damned if you don't as well with the abx, but I just don't want the

rages, emotions and tics back. He's so good right now.

I will get to the bottom of this and find some alternatives that work but I have

to tread carefully.

As for the bone growth, I hope there's somebody out there with some answers to

you. That enzyme deficiency I mentioned could be significant, and its treatable

and very well known association with autism.

E xx

> >

> > If he is tolerating antihistamines you should def try them no ASAP. Ideally

> > http://www.amazon.co.uk/Coricidin-Antihistamine-Suppressant-Pressure-16-Coun

> > t/dp/B0011DTFYC/ref=sr_1_cc_1?s=dvd & ie=UTF8 & qid=1323961825 & sr=1-1-catcorr

> > but if you cannot get it quickly try cetirizine or loratidine (everywhere

> > should sell them different brands).

> >

> > Also consider something for reflux, ranitidine is widely available ­ called

> > Zantac or Gavis_something (read ingredients, it should have ranitidine and

> > nothing else). ons etc have it own label

> >

> > nx

> >

> > From: veronicamadigan <MaddiganV@>

> > Reply-To: " Autism-Biomedical-Europe "

> > <Autism-Biomedical-Europe >

> > Date: Thu, 15 Dec 2011 09:44:32 -0500 (EST)

> > To: " Autism-Biomedical-Europe "

> > <Autism-Biomedical-Europe >

> > Subject: Re: Re: Psychotic episodes/regression?

> >

> >

> >

> >

> >

> >

> > Thanks and everyone that responded.

> > Quite a few possibles, this has been boiling up for some time, he has become

> > more willfull.

> > I would have been in serious problems had the therapist not been there to

> > help.

> > I don't give B's because he is a rager on them and I don't rule

> > out the most recent attempt to still have had a longer term effect on him,

> > calcium is a no also along with Vit C and anything high oxalate.

> > I haven't seen like this since the days of his old school and severe

> > gut pain, the difference is he is now double the size and strength!

> > Glut anything is out, but we have been eating Turkey mince for years with no

> > problems, what's the glutamate connection there?

> > I am sure strep is bad, he is very OCD but not responding too well.

> > Last night we had the Ultrica rash [sp] during dinner, he stimmed and jerked

> > all the way through getting consistantly worse because he couldn't settle to

> > eat and he loves his food.

> > He is veyr wrung out a lot of the time, exhausted but raging, sleeping well.

> > Vicky

> >

> >

> > Re: Psychotic episodes/regression?

> >

> >

> >

> >

> >

> > For us it was glutamate levels getting too high, along with a couple of

> > other things. Anju Usman suggested a 3 pronged approach.

> >

> > 1] lower even natural levels of glutamate in foods [eg meat, peas, chickpeas

> > are all high ­ also turkey especially]

> > 2] stop all b vitamins for a period [we also stopped a multi which dr

> > neubrander had recommended and his mb12.

> > 3] use anti-strep herbs ­ although this was to treat the concurrent HUGE

ocd

> > problem he had at the time too.

> >

> > A urine organic acids test showed high levels of kynurenic acid and

> > quinolinate, both of which suggested gut bugs that thrive on b vits.

> > They also occur sometimes with hallucinations and schizophrenia, so we

> > concluded he had been hallucinating ­ it certainly looked like that.

> >

> > The ocd took some weeks, but the psychotic episodes never occurred

> > again.....and they had been HORRIBLE.

> >

> > You can find a link to levels of naturally occuring glutamate in foods here

> >

> > http://dogtorj.com/g-a-r-d/foods-to-avoid-foods-to-enjoy/

> >

> > The site is by a vet who found that lowering glutamates and amines in foods

> > for dogs got rid of their epilepsy! He also has animal owners with autistic

> > kids and has taken a real interest in this.

> > He writes a lot about it on his website, including reference to the GARD

> > diet for epilepsy in people. [Glutamate and Amine Reduced Diet]

> >

> > Some kids find l-glutamine helps ­ for us it has always been a big no-no,

as

> > does not seem to metabolise it right. Also ­ he has problems with

> > edginess with too much calcium, so we watch out for that.

> >

> > ONE GREAT TIP ­ we found that a 1/2 teaspoon of bicarbonate in water really

> > calms him quickly when he gets edgy..... any kind of excess acid or ammonia

> > may respond to this.

> >

> > Hope something here helps ­ I know how upsetting this can be, but can tell

> > you now it has been 4 years since anything like this happened here.

> >

> >

> >

>

[Guest guest]

Eileen, please share how much D3 you are giving as a megadose and how

much you will give as maintenance (RDA) (and do you include any from CLO

in that?) Thanks, Sara xxx

[Guest guest]

Eileen, please share how much D3 you are giving as a megadose and how

much you will give as maintenance (RDA) (and do you include any from CLO

in that?) Thanks, Sara xxx

[Guest guest]

Eileen, please share how much D3 you are giving as a megadose and how

much you will give as maintenance (RDA) (and do you include any from CLO

in that?) Thanks, Sara xxx

[Guest guest]

Sara,

I've been dosing myself with a lot of vitamin D lately, preparing myself for an

experiment that has now started:-) Anyway, I'm much bigger than anyone's kid,

but have been taking 18,000-22,000 a day for about two months and feel much

better for it. Keep in mind I spent the summer in a place much further south

than the UK and had a great tan, so should have been full up with D already.

But don't think I was, and this is wierd to me and makes me wonder even more

about our kids. Esp as I wouldn't have low cholestrol (eat a WAP diet mostly)

and my health, although it has tanked in the last couple years, cannot be nearly

as bad as our kids.

This is an article I wrote for teh TA newsletter a few years back. There are

some links that you might find helpful.

Anita

I come from Canada and now live in the UK. The two places have at least one

thing in common: a lack of sunshine. And so a recent article about Swedish

doctors pointing to a possible link between Vitamin D deficiency and autism

(tinyurl.com/5rjdb7) caught my eye.

The Swedish doctors are certainly not the first to point out the significance of

vitamin D to our health. More than sixty years ago, Dr. Weston A. Price in his

landmark book Nutrition and Physical Degeneration, pointed out that the

isolated, traditional cultures he studied had more than 10 times the level of

dietary fat-soluble vitamins (like A and D) compared to the standard American

diet of his time. Even more telling, Price noticed the marked and fairly swift

decline in health in people whose traditional diet had been replaced by a more

modern diet—this was especially true of the children born to these people. Dr.

Cannell, Executive Director of the Vitamin D Council, connects vitamin D

deficiency to not only autism, but depression, cancer, mental illness, and a

variety of other problems that seem to plague our modern society.

Vitamin D is created by our body as a result of being in the sunshine

(specifically, the ultraviolet-B wavelength). In our modern world, we spend

very little time outdoors compared to what was normal even twenty years ago.

Furthermore, we have been taught to fear the sun, and parents receive dire and

repeated warnings about protecting our children from sun exposure. People whose

ancestors come from very sunny climates (like the Somali people living in Sweden

who are being studied by the doctors mentioned above) are even more at risk for

Vitamin D deficiency when they move to less sunny places. The sun shining

alone, though, is not enough to produce Vitamin D. Because the amount of

ultraviolet-B wavelength can vary as the result of many factors, it is

impossible, for example, to create vitamin D for only six months of the year in

the city where I was born—Edmonton, Alberta, Canada. Something similar may be

true for the UK, as there have been many concerns raised here by experts who

study this: maternal vitamin D levels and type 1 diabetes in children; rickets

among Asian children living in England; and vitamin D deficiency in the elderly.

Because our bodies cannot always get enough vitamin D from the sun, it can also

be ingested. As was pointed out in Price's work, unlike traditional diets,

modern diets tend not to include vitamin D rich foods. How many of us eat organ

meat and oily fish (let alone insects!) on a regular basis? Furthermore, the

vitamin D we could get from foods we may find more palatable, like egg yolk or

milk, is often lacking because we do things like raise our chickens indoors

(where they cannot manufacture the D that would end up in their egg yolk) or

pasteurize milk (and replace the natural D3 with synthetic D2, which behaves

differently in our body).

Many parents of children with ASD have known for a long time that supplementing

with cod liver oil proves beneficial to their children's health. Cod liver oil

contains vitamin D, along with vitamin A and omega 3 fatty acids. More

recently, a number of parents have seen much success on what many call the

Vitamin K protocol, which uses, among other nutritional supplements, extra

Vitamin D3. I know of many parents who have seen improvements in their children

by adding D3 into their supplementation routine, on top of the D that a child

would receive in cod liver oil. My own son is one of these children. In fact,

only after adding extra D3 to my son's supplementation was he finally able to

tan normally.

Because vitamin D is a fat soluble vitamin, the body can store it.

Theoretically, this means that levels of Vitamin D could reach toxicity. For

this reason, it is very important to approach supplementation wisely and armed

with knowledge. Below, you will find a number of resources that can help you

better understand vitamin D and the role it may play in your child's health.

http://www.westonaprice.org/basicnutrition/vitamin-d-safety.html An excellent

and comprehensive article on Vitamin D, by Masterjohn of the Weston A

Price Foundation.

http://www.vitamindcouncil.org/health/autism/index.html A huge resource where

Dr. Cannell and other medical professionals examine Vitamin D, and question

traditional medical wisdom on sufficient levels. This website has links to the

latest research in Vitamin D.

http://health.groups.yahoo.com/group/VitaminK/ A support group for parents

interested in exploring the use of fat soluble vitamins, including D, as

supplements.

>

> Eileen, please share how much D3 you are giving as a megadose and how

> much you will give as maintenance (RDA) (and do you include any from CLO

> in that?) Thanks, Sara xxx

>

[Guest guest]

Sara,

I've been dosing myself with a lot of vitamin D lately, preparing myself for an

experiment that has now started:-) Anyway, I'm much bigger than anyone's kid,

but have been taking 18,000-22,000 a day for about two months and feel much

better for it. Keep in mind I spent the summer in a place much further south

than the UK and had a great tan, so should have been full up with D already.

But don't think I was, and this is wierd to me and makes me wonder even more

about our kids. Esp as I wouldn't have low cholestrol (eat a WAP diet mostly)

and my health, although it has tanked in the last couple years, cannot be nearly

as bad as our kids.

This is an article I wrote for teh TA newsletter a few years back. There are

some links that you might find helpful.

Anita

I come from Canada and now live in the UK. The two places have at least one

thing in common: a lack of sunshine. And so a recent article about Swedish

doctors pointing to a possible link between Vitamin D deficiency and autism

(tinyurl.com/5rjdb7) caught my eye.

The Swedish doctors are certainly not the first to point out the significance of

vitamin D to our health. More than sixty years ago, Dr. Weston A. Price in his

landmark book Nutrition and Physical Degeneration, pointed out that the

isolated, traditional cultures he studied had more than 10 times the level of

dietary fat-soluble vitamins (like A and D) compared to the standard American

diet of his time. Even more telling, Price noticed the marked and fairly swift

decline in health in people whose traditional diet had been replaced by a more

modern diet—this was especially true of the children born to these people. Dr.

Cannell, Executive Director of the Vitamin D Council, connects vitamin D

deficiency to not only autism, but depression, cancer, mental illness, and a

variety of other problems that seem to plague our modern society.

Vitamin D is created by our body as a result of being in the sunshine

(specifically, the ultraviolet-B wavelength). In our modern world, we spend

very little time outdoors compared to what was normal even twenty years ago.

Furthermore, we have been taught to fear the sun, and parents receive dire and

repeated warnings about protecting our children from sun exposure. People whose

ancestors come from very sunny climates (like the Somali people living in Sweden

who are being studied by the doctors mentioned above) are even more at risk for

Vitamin D deficiency when they move to less sunny places. The sun shining

alone, though, is not enough to produce Vitamin D. Because the amount of

ultraviolet-B wavelength can vary as the result of many factors, it is

impossible, for example, to create vitamin D for only six months of the year in

the city where I was born—Edmonton, Alberta, Canada. Something similar may be

true for the UK, as there have been many concerns raised here by experts who

study this: maternal vitamin D levels and type 1 diabetes in children; rickets

among Asian children living in England; and vitamin D deficiency in the elderly.

Because our bodies cannot always get enough vitamin D from the sun, it can also

be ingested. As was pointed out in Price's work, unlike traditional diets,

modern diets tend not to include vitamin D rich foods. How many of us eat organ

meat and oily fish (let alone insects!) on a regular basis? Furthermore, the

vitamin D we could get from foods we may find more palatable, like egg yolk or

milk, is often lacking because we do things like raise our chickens indoors

(where they cannot manufacture the D that would end up in their egg yolk) or

pasteurize milk (and replace the natural D3 with synthetic D2, which behaves

differently in our body).

Many parents of children with ASD have known for a long time that supplementing

with cod liver oil proves beneficial to their children's health. Cod liver oil

contains vitamin D, along with vitamin A and omega 3 fatty acids. More

recently, a number of parents have seen much success on what many call the

Vitamin K protocol, which uses, among other nutritional supplements, extra

Vitamin D3. I know of many parents who have seen improvements in their children

by adding D3 into their supplementation routine, on top of the D that a child

would receive in cod liver oil. My own son is one of these children. In fact,

only after adding extra D3 to my son's supplementation was he finally able to

tan normally.

Because vitamin D is a fat soluble vitamin, the body can store it.

Theoretically, this means that levels of Vitamin D could reach toxicity. For

this reason, it is very important to approach supplementation wisely and armed

with knowledge. Below, you will find a number of resources that can help you

better understand vitamin D and the role it may play in your child's health.

http://www.westonaprice.org/basicnutrition/vitamin-d-safety.html An excellent

and comprehensive article on Vitamin D, by Masterjohn of the Weston A

Price Foundation.

http://www.vitamindcouncil.org/health/autism/index.html A huge resource where

Dr. Cannell and other medical professionals examine Vitamin D, and question

traditional medical wisdom on sufficient levels. This website has links to the

latest research in Vitamin D.

http://health.groups.yahoo.com/group/VitaminK/ A support group for parents

interested in exploring the use of fat soluble vitamins, including D, as

supplements.

>

> Eileen, please share how much D3 you are giving as a megadose and how

> much you will give as maintenance (RDA) (and do you include any from CLO

> in that?) Thanks, Sara xxx

>

[Guest guest]

Sara,

For maintenance doses, perhaps our experience might help.

We were low on D and dosed 8000iu per day but then tested too high back in may

so we were advised to drop back to 6000iu. We did but are back to 8000iu for

winter. Our son is 48lbs.

x

>

> Eileen, please share how much D3 you are giving as a megadose and how

> much you will give as maintenance (RDA) (and do you include any from CLO

> in that?) Thanks, Sara xxx

>

[Guest guest]

Sara,

For maintenance doses, perhaps our experience might help.

We were low on D and dosed 8000iu per day but then tested too high back in may

so we were advised to drop back to 6000iu. We did but are back to 8000iu for

winter. Our son is 48lbs.

x

>

> Eileen, please share how much D3 you are giving as a megadose and how

> much you will give as maintenance (RDA) (and do you include any from CLO

> in that?) Thanks, Sara xxx

>