new to group

[Guest guest]

Fresno here

cheriegoldy wrote:

> Hi everyone!

>

> I am new to the group and just wanted to introduce myself. I

> completed a challenge about 4 years ago and am going to start up

> again

> on Monday. I'm starting to feel the middle age spread! I am 39

> years

> old, married with a 12 year old daughter. My husband and I have been

> through 5 miscarriages in the past 4 years and I have put on about 10

> lbs that I need to lose. I live in So California. Anyone else out

> there from California?

>

> I look forward to sharing and learning from all of you!

>

>

>

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

>

[Guest guest]

Hi, welcome!

Is she reaching out to touch/bother others? Am wondering how it

happens if it seems to be sort of often at school. Is she getting

her schoolwork done OK? Now that you have an " offical " OCD

diagnosis, the school should work with you on anything related to it

that is causing a problem there.

Does she understand about OCD any yet? Well, I'm sure the therapist

can help with that if needed and will work with her on setting up

some OCD " homework " and goals to work on, teaching her how to boss

back/not listen to " OCD, " like trying not to even things out,

different ways to work on that, etc.

With the banging and rocking, what are the " noises " , thoughts that

won't go away? Head banging and rocking are ways she comforts

herself too probably, since she's been doing this for so long. I

know with autism, we call it " stims " ; my OCD son (16) has Aspergers

Syndrome (on the autism spectrum), but no stims. (and I'm not saying

doing them means a person has autism; just speaking of the behavior

going with the word " stim " )

Here's a definition:

stim

(e.g. stimming) short for " self-stimulation " , a term for behaviors

whose sole purpose appears to be to stimulate ones own senses. An

example is rocking ones body. Many people with autism report that

some 'self stims' may serve a regulatory function for them (ie.

calming, adding concentration, shutting out an overwhelming sound).

Other examples: hand-flapping, toe-walking, spinning, echolalia.

Well, got to go, write back and also let us know how the appt goes

when it's over!

> Hi everyone,

> I have a 9 year old daughter who has just been diagnosed with OCD.

> Although it seems mild and she doesn't display too many obvious

> symptoms I have a question if anyone else has a child with her

worries

> and habits.

[Guest guest]

Thanks for writing. My daughter seems to have a problem keeping her

hands to herself. She is overenthusiastic and runs to hug friends

and practically knocks them down. She is not aware of her body in

space and has a problem following social cues. She has read the

book, " Up and Down the Worry Hill " and says " glad I'm not as bad as

him! " (the boy in the book). She is eager and glad to work with

someone to help her because it really annoys her when she has to

always even everything out.

I agree that the head banging thing is a way to soothe her. She's

scared of monsters when she goes to bed and need to play music every

night at bedtime.

She has no problems academically, thank God, she is actually a very

good student and doesn't get distracted when doing her homework or

studying in school.

I'll let you all know what the doctor has to say. Thanks again!

-- In , " "

<@h...> wrote:

> Hi, welcome!

>

> Is she reaching out to touch/bother others? Am wondering how it

> happens if it seems to be sort of often at school. Is she getting

> her schoolwork done OK? Now that you have an " offical " OCD

> diagnosis, the school should work with you on anything related to

it

> that is causing a problem there.

>

> Does she understand about OCD any yet? Well, I'm sure the

therapist

> can help with that if needed and will work with her on setting up

> some OCD " homework " and goals to work on, teaching her how to boss

> back/not listen to " OCD, " like trying not to even things out,

> different ways to work on that, etc.

>

>

> With the banging and rocking, what are the " noises " , thoughts that

> won't go away? Head banging and rocking are ways she comforts

> herself too probably, since she's been doing this for so long. I

> know with autism, we call it " stims " ; my OCD son (16) has

Aspergers

> Syndrome (on the autism spectrum), but no stims. (and I'm not

saying

> doing them means a person has autism; just speaking of the

behavior

> going with the word " stim " )

>

> Here's a definition:

>

> stim

> (e.g. stimming) short for " self-stimulation " , a term for behaviors

> whose sole purpose appears to be to stimulate ones own senses. An

> example is rocking ones body. Many people with autism report that

> some 'self stims' may serve a regulatory function for them (ie.

> calming, adding concentration, shutting out an overwhelming

sound).

> Other examples: hand-flapping, toe-walking, spinning, echolalia.

>

> Well, got to go, write back and also let us know how the appt goes

> when it's over!

>

>

>

>

>

> > Hi everyone,

> > I have a 9 year old daughter who has just been diagnosed with

OCD.

> > Although it seems mild and she doesn't display too many obvious

> > symptoms I have a question if anyone else has a child with her

> worries

> > and habits.

[Guest guest]

Hi again,

That's good she is doing so well in school despite her OC problems.

It really interfered with . And I think he does get

distracted. But luckily things are much better these past years,

though I still think he gets distracted. He gets his work done

though, makes straight A's.

Personal space (including touching/hugging others) and social cues are

also something that can be a problem with certain disabilities,

including autism and related/similar disabilities. The school could

set IEP goals for this to be worked on there, and of course you can go

over things at home. I wonder if the doctor can address these areas

in such a way as to get the school to work goals on this into her

IEP?

Just a quick thought!

> Thanks for writing. My daughter seems to have a problem keeping her

> hands to herself. She is overenthusiastic and runs to hug friends

> and practically knocks them down. She is not aware of her body in

> space and has a problem following social cues. She has read the

> book, " Up and Down the Worry Hill " and says " glad I'm not as bad as

>

[Guest guest]

Hi Carolyne,

> Hes too young to be diagnosed at the moment and I wondered what age

> your kids were diagnosed.

>

Who told you that? It's complete and utter rubbish! The earlier the better.

Get a referral from your GP or health visitor to a paediatrician or child &

adolescent psychiatrist. Specify that you want someone experienced with ASD

(autistic spectrum disorders). You area may have a multi-disciplinary team,

with speech and language therapist, occupational therapist and possibly a

physiotherapist who all look at different aspects.

Join your local branch of the NAS or local support group - use the new PARIS

website from the NAS to find out information.

>

> The most important to me is the dressing issues. He doesnt like to

> wear new clothes and the transition to sandals or shorts is very

> hard. He is starting school in September and needs to wear a school

> uniform. Have any of you managed to make this transition and what

> tips can you give me. He doent like it, we are going to buy it this

> weeek that should be enough time I hope!

>

This is very common. Best to wash the uniform a few times first. Does the

school use polo or t-shirts? These are much easier on the skin. But watch

out for embroidered logos - my son finds these too irritating. However, he

was OK with his school uniform because it was what everybody wore. (He's 17

now and just about to do A-levels).

As soon as you get a diagnosis you need to tackle the school to get him on

the special needs register. They should put him at School Action and give

him support either in lessons and/or at breaktimes (but they don't like

doing the latter). Don't let them fob you off with excuses. He will be

legally entitled to help.

in NE Hants England

[Guest guest]

Carolyne wrote:

> Hi Im Carolyne from the UK (near London). I have a son aged 4 whos

> behaviour is similar to aspergers and I would like to ask some

> questions on managing his behaviour.

>

> The most important to me is the dressing issues. He doesnt like to

> wear new clothes and the transition to sandals or shorts is very

> hard. He is starting school in September and needs to wear a school

> uniform. Have any of you managed to make this transition and what

> tips can you give me. He doent like it, we are going to buy it this

> weeek that should be enough time I hope!

Make sure you've washed any new clothes you get him, and use fabric

softener in the rinse. Cut any and all labels out of his clothing, as

they tend to irritate our guys to distraction. Try transitioning him to

sneakers instead of sandals, and maybe let him stay in long pants for

summer. Louie (HFA/AS) just started wearing shorts this year, and he's

25. Start transitioning to the school uniform now. You can start by

hanging it in his wardrobe, then talking about how much he will learn

this year and how brilliant he'll look in his uniform. With luck, by

September it will no longer be new (and thus threatening) to him.

>

> Hes too young to be diagnosed at the moment and I wondered what age

> your kids were diagnosed.

Your son is not too young to be diagnosed. Our Louie was diagnosed at 2

and a half as PDDNOS, then at 4 as autistic, then at 12 HFA/AS. The

earlier you can start interventions, the better it will be for your son.

>

> We has sensory issues too, like hating cream applied to his skin,

> tooth brushing, windows open in the car, labels etc etc. He hates his

> asthma inhaler and all medicines which can be a major problem.

The lotion and car breezes are for the same reason that he won't wear

shorts. It's the feeling of something whispery (like lotion or

breezes) on his bare skin that he can't take. Louie was like that.

However, his behavioral therapist in high school started therapeutic

brushing of his skin, and now it doesn't bother him so much. Tooth

brushing could be the texture of the toothpaste. Louie couldn't stand

toothpaste when he was younger. I actually cheered when tooth gels came

out, because he tolerated those with no trouble. I don't blame him for

his asthma inhaler....that stuff tastes nasty! And I had a good friend

who had real problems swallowing pills. See if you can't get his meds

in either liquids or patches.

> Ive worked out how best to manage transitions and he manages these

> quite well. Hes quite bright and very sociable - loves talking to

> people and is very affectionate.

>

He sounds like a sterling young man!

BTW, glad to meet you! I'm Annie, in Albuquerque where Bugs Bunny

always makes the wrong turn. Our household is myself and my dh, both

of us disabled (mine is 3rd stage liver disease & I'm on the transplant

list, his is complications from 2 strokes and years of radiation for

cancer). Our son, Louie, moved out when he was 21, has been in assisted

living for 4 years now (hard to believe!), is assistant sexton at our

church, and is doing very well! Much better than his original drs. ever

thought he would, in fact.

Once again, nice to meet you!

Annie, who loves ya annie@...

--

The trouble with fulfilling your ambitions is you think you will be

transformed into some sort of archangel and you're not. You still have

to wash your socks. ~ Louis de Bernieres

[Guest guest]

Hi there and welcome to the list! Now that your daughter has a diagnosis,

the school should be made aware that OCD is an anxiety disorder, the

evening-out behavior is disorder-related, and in no way should your daughter

be subjected to punishments or temper displays by teachers or other staff.

(Drama of this sort is very anxiety-producing for any child, but is

guaranteed to increase an OCD child's anxiety, causing the need for *more*

compulsive behavior, not less. Point out to her teachers that if punishing

and yelling were going to correct this behavior, it would have done so by

now.) You can tell them that she is just now beginning therapy and the hope

is this compulsion will be very much diminished by fall.

The head-banging I'm not sure about, but can attest that the evening-out

compulsion is a very common one.

You should see improvement in your daughter's symptom level by about the

fifth therapy session. If you don't, you may want to consider moving on to

a different therapist. Many of us have had to try several before finding

one who could, and would, do Exposure and Response Prevention therapy for

OCD with our kids.

Good luck to you and your girl,

Kathy R. in Indiana

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

From: " maudemary " <maudemary@...>

> Hi everyone,

> I have a 9 year old daughter who has just been diagnosed with OCD.

> Although it seems mild and she doesn't display too many obvious

> symptoms I have a question if anyone else has a child with her worries

> and habits.

> First of all, she has banged her head against the mattress since she

> was around 4 years old. She does this as a way of getting " rid of the

> noises " and rocking herself to sleep. It worries me and seems to be

> disrupting her sleep throughout the night.

> Her biggest problem is not being able to keep her hands to herself.

> She says she has to " even things out. " So whenever she bumps into

> someone in school and trips over their feet, she has to do it again

> and again until it feels right and over with. This causes a lot of

> social problems in school and her teaches are totally frustrated with

> her and have lost their temper with her many times.

> We just made our first appointment with a cognitive behavioral

> therapist and are looking forward to our first meeting. Any tips,

> ideas would be greatly appreciated! Thanks a lot!

[Guest guest]

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

From: " maudemary " <maudemary@...>

> Thanks for writing. My daughter seems to have a problem keeping her

> hands to herself. She is overenthusiastic and runs to hug friends

> and practically knocks them down. She is not aware of her body in

> space and has a problem following social cues.

*****My daughter had/has a similar problem since OCD onset at age

almost-five. She seems not to know her own strength, how hard to hit, hug,

pull to open a package, and so on. For years she pressed way too hard with

a pencil and tore the paper that way.

I wanted to say that my child has made good progress simply by practicing

doing things purposefully " half as hard " as seems right to her. It's like

her sense of " how much " got scrambled with the OCD onset, but I have never

gotten the impression that this is compulsive for her.

Also, now at age 11, her friends will tell her knock off the overexuberant

stuff. So some positive peer pressure has helped with this, too.

Athletics has been one are where my child can shine with this problem. She

can knock 'em out of the park for sure :-) Softball, soccer and swimming

are sports that seem tailor-made for her.

Take care,

Kathy R. in Indiana

[Guest guest]

Dear Carolyne,

I live in essex , my son is nearly 9 and was diagnosed with mild AS,and

semantic pragmatic disorder.

With his behaviour you could try a behaviour chart, but do it daily and let

him pick stickers, so if he does something good for an hr he gets a sticker,

it's not so much of a struggle then. After each day treat him with a special

treat etc. Then start to increase it gradually. It may work i'm not

promising. This works now with my son and he can manage a week now,but it

was a slow process.

The dressing issues, well we still have those.lol. You could try putting his

uniform in his bedroom hanging up, but make sure you cut the labels out of

everything first, then just keep alking to him about going to school in his

uniform. It wont be such a big thing when sept comes then, but you are

better off starting it now rather than later. The more time the better it

is.

he isn't too young for a diagnosis at all. It just took me almost 7 yrs to

get a diagnosis for BJ, and then i paid private, because nhs was a waste of

space., as always.

Now you have a diagnosis, your fun will begin. I really hope your sons

school will meet his needs his entitled too. That's what alot of our issues

end up about, you seem to be fighting every way you turn., and going round

in circles.

I hope you dont have to many probs with the uniform, but feel free to email

me anytime nettysmith10@...

Best wishes Netty

>From: " Carolyne " <carolyne.klein@...>

>Reply-Autism and Aspergers Treatment

>Autism and Aspergers Treatment

>Subject: New to group

>Date: Tue, 31 May 2005 09:54:47 -0000

>

>Hi Im Carolyne from the UK (near London). I have a son aged 4 whos

>behaviour is similar to aspergers and I would like to ask some

>questions on managing his behaviour.

>

>The most important to me is the dressing issues. He doesnt like to

>wear new clothes and the transition to sandals or shorts is very

>hard. He is starting school in September and needs to wear a school

>uniform. Have any of you managed to make this transition and what

>tips can you give me. He doent like it, we are going to buy it this

>weeek that should be enough time I hope!

>

>Hes too young to be diagnosed at the moment and I wondered what age

>your kids were diagnosed.

>

>We has sensory issues too, like hating cream applied to his skin,

>tooth brushing, windows open in the car, labels etc etc. He hates his

>asthma inhaler and all medicines which can be a major problem.

>

>Ive worked out how best to manage transitions and he manages these

>quite well. Hes quite bright and very sociable - loves talking to

>people and is very affectionate.

>

>Thanks in advance for your advice

>

>Carolyne

>

>

>

>

[Guest guest]

Hi--

google search the phrase

peanut vaccine adjuvant

and you will learn more about adjuvant 65, an emulsified peanut oil

vaccine adjuvant. The real question is, was this ever used in

children's vaccines--that I do not know. Maybe someone else does.

What I have read is that vax manufacturers are entitled to keep some

vax ingredient information internal and secret, and so they did not

have to disclose whether they did or did not use this vaccine

adjuvant.

Given the peanut allergy problem in the US -- my guess is that they

did use it. :-(

I think that there has been some research to show that there is a

genetic component to asthma, and that it is felt that environmental

burdens do trigger asthma. Glutathione gets messed up by the

thimerosal in the vaccines and may be one of the triggers.

My son is asthmatic, too--came on very suddenly (so did the

allergies) following some vaccinations. Coincidence in timing?

perhaps, but as the information pours forth on what ethylmercury

does, my guess is that it was induced by his vaccinations.

W

> Hi,

>

> This is my first posting--I am new to the group. My 9 year old

daughter has

> severe food allergy and severe asthma for 7 years now. I had

always suspected

> the vaccines because the timeline of diagnosis and intensive care

stays

> several years ago. Although we have been through alot with my

daughter's health

> problems and the schools, I know it is nothing compared to what

parents of

> autistic children cope with every single day. I only became aware

of EOH about a

> month ago and I saw Kirby speak at the Monmouth County

Library a few

> weeks ago. What a phenominal presentation. I am embarassed to say

how stunned I

> was. I can't believe how stupid I was to only rely on mainstream

medicine and

> media for my info. So I am just starting my education on this

issue and your

> group is a godsend. After being told for years that I was crazy

and being

> told by my doctor that " people like you are going to bring back

polio " , I am so

> happy I found your group through the EOH website.

>

> Anyway, I've been reading your posts everyday and reading all the

links, etc

> and trying to educate myself as best I can. Yesterday I noticed

someone named

> Vera mentioned peanut allergy and was wondering if anyone can point

me to any

> specific research or articles regarding mercury as it relates to

asthma and

> food allergy. My daughter's bloodwork for mercury just came back

negative, but

> her last vaccines were so long ago, I am not surprised. I am

actually happy

> she is allergic to eggs and cannot get the flu shot because they've

been

> hounding me to give her the flu shot for years because she is " high

risk " for the

> flu due to her asthma.

>

> I have purchased several copies of EOH for school nurses and my

friends with

> autistic children and have also emailed everyone in my address book

about this

> issue. I was very surprised that some of my friends with autistic

children

> had not heard of the book.

>

> My credit card is all warmed up for June 8th.

>

> Thanks,

> Ann

[Guest guest]

hello. you may find this site helpful in answering

your questions;

http://www.mothering.com/discussions/forumdisplay.php?f=47

--- panhoud@... wrote:

> Hi,

>

> This is my first posting--I am new to the group. My

> 9 year old daughter has

> severe food allergy and severe asthma for 7 years

> now. I had always suspected

> the vaccines because the timeline of diagnosis and

> intensive care stays

> several years ago. Although we have been through

> alot with my daughter's health

> problems and the schools, I know it is nothing

> compared to what parents of

> autistic children cope with every single day. I

> only became aware of EOH about a

> month ago and I saw Kirby speak at the

> Monmouth County Library a few

> weeks ago. What a phenominal presentation. I am

> embarassed to say how stunned I

> was. I can't believe how stupid I was to only rely

> on mainstream medicine and

> media for my info. So I am just starting my

> education on this issue and your

> group is a godsend. After being told for years that

> I was crazy and being

> told by my doctor that " people like you are going to

> bring back polio " , I am so

> happy I found your group through the EOH website.

>

> Anyway, I've been reading your posts everyday and

> reading all the links, etc

> and trying to educate myself as best I can.

> Yesterday I noticed someone named

> Vera mentioned peanut allergy and was wondering if

> anyone can point me to any

> specific research or articles regarding mercury as

> it relates to asthma and

> food allergy. My daughter's bloodwork for mercury

> just came back negative, but

> her last vaccines were so long ago, I am not

> surprised. I am actually happy

> she is allergic to eggs and cannot get the flu shot

> because they've been

> hounding me to give her the flu shot for years

> because she is " high risk " for the

> flu due to her asthma.

>

> I have purchased several copies of EOH for school

> nurses and my friends with

> autistic children and have also emailed everyone in

> my address book about this

> issue. I was very surprised that some of my friends

> with autistic children

> had not heard of the book.

>

> My credit card is all warmed up for June 8th.

>

> Thanks,

> Ann

>

>

>

__________________________________

Discover

Get on-the-go sports scores, stock quotes, news and more. Check it out!

http://discover./mobile.html

[Guest guest]

I found out that mercury doesn't stay in your blood stream. Because some of these kids are missing essential minerals gluthione, zinc, sulfur based mineral, calcuim, and thyroid problems. The mercury attaches to tissue in your body. Once my daughter's minerals were up even good ole mercury showed up. I would suggest a DAN doctor for your child as most doctors do not do test for this. God be with you

[Guest guest]

Kennedy778, mnkygrl9, W and Kathy Hybl,

Thank you so much for the information regarding my inquiry about mercury as it relates to asthma and food allergies. You are a godsend.

Ann

[Guest guest]

Hi Sharon,

Welcome to the list! - I've just joined, and had some great info

already:-)

The needles for the MB12 are tiny - like the ones diabetics use - so

Alysia might be OK if you showed her? Or there's the numbing cream -

don't know how phobic she is - I know when Callum was younger he'd

scream as soon as you put the cream on because he knew what was coming!

- thankfully last lot of bloods taken were fine. A lot of people jab

when the kids are asleep - don't know how a 13 year old would take to

that :-0

We're under Dr Usman in Chicago, but I'm also going to see Dr H - can't

get too much of a good thing! - just that we have so much to do, it

often takes a very long time to get answers back from US. I know Dr H

has 'shared' patients - and as we've had most of the tests done, means

we can see him as well, without selling up and living in a tent!

Bfn,

Elaine

New to group

Hi all,

My daughter Alysia is 13 & we have been doing gf/cf since she was 5

& started down the biomedical route initially with probiotics from

about then on.

We have been under Dr Kartzinel (Bradstreet practise) for many years

& did a lot of tests in the beginning. Alysia has taken various

supplements over the years & we did do DMSA for about 18months

following the DAN 8hr protocol some years back. We saw good

progress throughout the 1st year & then things stablised. We tried

using ALA but saw big problems with stims, concentration etc. & were

told to take her off.

Last year we tried giving MB12 orally but Alysia also reacted to

that by tuning out & as we were just beginning RDI we decided to

stop rather than not be sure how each intervention may have been

helping or impeding.

Anyway after just staying where we are on the bio front & now having

seen where RDI is taking us I'd like to progress further with the

possibilities of TD-DMPS & /or MB12 injections - my biggest problem

is Alysia is absolutely terrified of needles & so to do any blood

testing I think I'm going to have to drug her up, any idea on what

to use???

Also I've read many back posts on Dr Heard on the list but can't

seem to find any contact details, can anyone help?

Lastly do you tend to use UK consultants & US or go for one or the

other? Haven't been able to work that one out going through back

posts.

Sorry I do have another question up until I read something recently,

think it may have come from the ARI site, on NAC we had been giving

twice a day - but the info said that NAC was potentially a mega

problem in taking heavy metals & dumping them in the brain - does

anyone else use NAC? Since taking NAC out Alysia has definetly been

different seeing some old stims (but can't be sure that's not due to

RDI as saw that before she made last jump forward) & at times giving

up before she's tried unless encouraged to carry something through.

Any advice anyone can give would be much appreciated.

Thanks Sharon

P.S. On another note read a back post about TD-DMPS & epilepsy my

neighbour has 2 girls not ASD (though not totally sure with eldest)

who suffer with severe fits, would Dr Heard be able to help them

too? Would TD-DMPS be suitable for them - mum thinks their epilespy

started re DPT jabs?

[Guest guest]

Sharon,

Nice to have 'meet' you in this group ... over the last 12 months my wife and I have read a great number of your posts on ABA-UK.

In relation to epilepsy/seizures in conjunction with autism, I've read several cases on chelatingkids2, and heard it in biomed presentations that the seizures decrease considerably when the heavy metals come out. I've not specifically heard about chelation reducing seizures or epileptic attacks in NT kids, but there's some logic there. I've heard that cases of epilepsy have risen over the years too, and it wouldn't surprise me if this is related to difficulty excreting heavy metals and accumulation of mercury. Best bet on this would be to speak to Dr Heard. I would still have concerns about how TD DMPS might interact with other medication epileptic kids are likely to be taking.

Also, it's worth remembering that symptoms might get worse before they get better on TD DMPS. TD DMPS does not work by directly pulling out the mercury from the brain - it doesn't cross the BB barrier. As it pulls the mercury from the blood stream and other body tissues it creates a lower concentration of mercury in the blood. Mercury in the brain 'migrates' back across the BB barrier only to be caught by the TD DMPS in circulation outside the brain. In theory only, this causes a degree of mercury to be freed up from where it was bound, and free to bind elsewhere whilst on the way out, resulting in some unseen/untoward side effects until the mercury concentrations drop. All this means that suggesting to your neighbour to chelate without her willing to go through worse periods along the way may lose you a friendly neighbour.

In relation to needles, we tend to use EMLA cream available from any doctor, incl Dr Heard at the Breakspear in Hemel Hempstead, and either use a laptop computer for our son's favourite (and otherwise banned) computer game, or a good tape book. We place headphones over his ears, hide his arm with pillow, (plenty of these at the Breakspear), and its a doddle. He's never flinched and positively loves going to the doctors. Equally we did loads of imag play using doctors kits and fake syringes to make 'Bunny' feel better.

About MB12, ALA, NAC etc, it appears many ASD supps do cause some temporary regression/ill effects, and it wouldn't surprise me that its not just gut bug / die off issues, but also the redistribution issues too. Sometimes its worth persevering on the treatments or simply cutting the dose and building slowly.

NAC: I think either Boyd Haley or Bock said to watch out for NAC carrying mercury across to the brain, but I also think their words may have been taken out of context in the same way as they were about EDTA (see earlier thread that Mandi posted - Boyd Haley and EDTA). DAN docs are using alot NAC (mainly IV or TD) but I believe most do it in conjunction with chelation with TD DMPS or DMSA so that free mercury is bound to the chelator and not to cysteine. We are not using NAC but are currently using something called IGG2000 which has considerable levels of cysteine in it, but then again we are doing TD DMPS also. Don't forget that if you are giving NAC orally then you'll almost certainly have increased gut issues, which might explain the behaviours.

I'm not sure how long ago you did the ALA, but both ALA and NAC are now available transdermally and apparently DAN docs are finding these very effective. See Levinsons DAN presention on the Danwebcast site. He quite happily mixes transdermal cocktails.

HTH

Mikael

New to group

Hi all,My daughter Alysia is 13 & we have been doing gf/cf since she was 5 & started down the biomedical route initially with probiotics from about then on.We have been under Dr Kartzinel (Bradstreet practise) for many years & did a lot of tests in the beginning. Alysia has taken various supplements over the years & we did do DMSA for about 18months following the DAN 8hr protocol some years back. We saw good progress throughout the 1st year & then things stablised. We tried using ALA but saw big problems with stims, concentration etc. & were told to take her off.Last year we tried giving MB12 orally but Alysia also reacted to that by tuning out & as we were just beginning RDI we decided to stop rather than not be sure how each intervention may have been helping or impeding.Anyway after just staying where we are on the bio front & now having seen where RDI is taking us I'd like to progress further with the possibilities of TD-DMPS & /or MB12 injections - my biggest problem is Alysia is absolutely terrified of needles & so to do any blood testing I think I'm going to have to drug her up, any idea on what to use???Also I've read many back posts on Dr Heard on the list but can't seem to find any contact details, can anyone help?Lastly do you tend to use UK consultants & US or go for one or the other? Haven't been able to work that one out going through back posts.Sorry I do have another question up until I read something recently, think it may have come from the ARI site, on NAC we had been giving twice a day - but the info said that NAC was potentially a mega problem in taking heavy metals & dumping them in the brain - does anyone else use NAC? Since taking NAC out Alysia has definetly been different seeing some old stims (but can't be sure that's not due to RDI as saw that before she made last jump forward) & at times giving up before she's tried unless encouraged to carry something through.Any advice anyone can give would be much appreciated.Thanks SharonP.S. On another note read a back post about TD-DMPS & epilepsy my neighbour has 2 girls not ASD (though not totally sure with eldest) who suffer with severe fits, would Dr Heard be able to help them too? Would TD-DMPS be suitable for them - mum thinks their epilespy started re DPT jabs?

[Guest guest]

Thanks to Abigail, Elaine & Mikael for coming back with info.

I'll be contacting Dr Heard in the near future - time limited at the

moment as trying to find a new school for Alysia before Annual

Review in a couple of weeks!!

I have another question with MB12 does it have to be in the buttock

just seems a bit privacy invasive with a 13yr-old?

We've done all the role play bits in the past & when she had blood

drawn at Northwick Park Hospital in the childrens bit I couldn't

believe how easy it was. Then we went to Drs Lab???(I think, back

of Harley Street) & what with a totally insensitive nurse who I

would quite happily have stuck the jab in personally it took 4 of us

to hold Alysia down. A further try was just in a normal drop in &

have blood extracted NHS hospital & I talked Alysia through it all

for a few days beforehand & she was quite happy to go but the moment

they tried to put the needle in she jerked her arm - so they refused

to do anything unless I got something to drug her up with before

going back - I sort of felt that drugging her was contrary to what I

was trying to do & we were coming to the end of chelation so left it.

I think I may have inadvertantly added to her needle distress when

talking her through her diagnosis as when asked why she had it & her

brother & sister didn't - I told her we believed it was the MMR

etc.!!!!

Will visit the website you suggested Mikael as soon as we work out

what's happened to the sound on our computer, mysteriously

disappeared.

Thanks again - Sharon

[Guest guest]

Hi Sharon,

great to see you here, hope the school search goes well.

With reagrds the MB12 shots, there has been a lot of work done to establish that the upper, outer quadrant of the buttock is the best place to inject. Apparently the fat layer there releases the MB12 at the correct rate. I tried one on myself and it was painless, didn't feel it at all.

Mt son obviously did and now we use ametop to numb the area a little first. he is great with them and we really notice if he misses any.

Tinasharonbarmit <sharonarmit@...> wrote:

Thanks to Abigail, Elaine & Mikael for coming back with info. I'll be contacting Dr Heard in the near future - time limited at the moment as trying to find a new school for Alysia before Annual Review in a couple of weeks!!I have another question with MB12 does it have to be in the buttock just seems a bit privacy invasive with a 13yr-old?We've done all the role play bits in the past & when she had blood drawn at Northwick Park Hospital in the childrens bit I couldn't believe how easy it was. Then we went to Drs Lab???(I think, back of Harley Street) & what with a totally insensitive nurse who I would quite happily have stuck the jab in personally it took 4 of us to hold Alysia down. A further try was just in a normal drop in & have blood extracted NHS hospital & I talked Alysia through it all for a

few days beforehand & she was quite happy to go but the moment they tried to put the needle in she jerked her arm - so they refused to do anything unless I got something to drug her up with before going back - I sort of felt that drugging her was contrary to what I was trying to do & we were coming to the end of chelation so left it.I think I may have inadvertantly added to her needle distress when talking her through her diagnosis as when asked why she had it & her brother & sister didn't - I told her we believed it was the MMR etc.!!!!Will visit the website you suggested Mikael as soon as we work out what's happened to the sound on our computer, mysteriously disappeared.Thanks again - Sharon

[Guest guest]

Dear Netty

Thanks for your advice re dressing. I will take all labels out of his

new school uniform.

At the moment I go to see a child phycologist without to

help me manage the tantrums and behaviour.

She gives me a lot of confidence to stand my ground with him. He

needs consistency and understanding.

My trick at the moment is to plug in on what he really wants at the

time and bargain with him about wearing something new.

It could be something simple like he wants me to lie next to him for

a little while longer, I compromise if he put his new pyjamas on.

I call it working . I suppose its like playing him at his own

game.

We have a school visit on 30th June see how he reacts to that one.

Thanks for replying. Im in north west london by the way.

Carolyne

[Guest guest]

Dear

His new uniform is a white polo shirt and grey trousers, as its a

Jewish school he must wear other religous articles as well, a tzitzit

which is like a vest with tassles and a cupple which is a scull cap.

Not looking forward to that one let me tell you.

Carolyne

> This is very common. Best to wash the uniform a few times first.

Does the

> school use polo or t-shirts? These are much easier on the skin. But

watch

> out for embroidered logos - my son finds these too irritating.

However, he

> was OK with his school uniform because it was what everybody wore.

(He's 17

> now and just about to do A-levels).

>

> As soon as you get a diagnosis you need to tackle the school to get

him on

> the special needs register. They should put him at School Action

and give

> him support either in lessons and/or at breaktimes (but they don't

like

> doing the latter). Don't let them fob you off with excuses. He will

be

> legally entitled to help.

>

> in NE Hants England

[Guest guest]

Annie

Thanks for your reply, could you tell me more about skin brushing,

Ive heard of that how does it work.

Were going on holiday on friday so lots of new experiences there!

Carolyne

> >

> > Hes too young to be diagnosed at the moment and I wondered what

age

> > your kids were diagnosed.

>

> Your son is not too young to be diagnosed. Our Louie was diagnosed

at 2

> and a half as PDDNOS, then at 4 as autistic, then at 12 HFA/AS.

The

> earlier you can start interventions, the better it will be for your

son.

>

> >

> > We has sensory issues too, like hating cream applied to his skin,

> > tooth brushing, windows open in the car, labels etc etc. He hates

his

> > asthma inhaler and all medicines which can be a major problem.

>

> The lotion and car breezes are for the same reason that he won't

wear

> shorts. It's the feeling of something whispery (like lotion or

> breezes) on his bare skin that he can't take. Louie was like that.

> However, his behavioral therapist in high school started

therapeutic

> brushing of his skin, and now it doesn't bother him so much. Tooth

> brushing could be the texture of the toothpaste. Louie couldn't

stand

> toothpaste when he was younger. I actually cheered when tooth gels

came

> out, because he tolerated those with no trouble. I don't blame him

for

> his asthma inhaler....that stuff tastes nasty! And I had a good

friend

> who had real problems swallowing pills. See if you can't get his

meds

> in either liquids or patches.

>

> > Ive worked out how best to manage transitions and he manages these

> > quite well. Hes quite bright and very sociable - loves talking to

> > people and is very affectionate.

> >

> He sounds like a sterling young man!

>

> BTW, glad to meet you! I'm Annie, in Albuquerque where Bugs Bunny

> always makes the wrong turn. Our household is myself and my dh,

both

> of us disabled (mine is 3rd stage liver disease & I'm on the

transplant

> list, his is complications from 2 strokes and years of radiation

for

> cancer). Our son, Louie, moved out when he was 21, has been in

assisted

> living for 4 years now (hard to believe!), is assistant sexton at

our

> church, and is doing very well! Much better than his original drs.

ever

> thought he would, in fact.

>

> Once again, nice to meet you!

>

> Annie, who loves ya annie@r...

> --

> The trouble with fulfilling your ambitions is you think you will be

> transformed into some sort of archangel and you're not. You still

have

> to wash your socks. ~ Louis de Bernieres

[Guest guest]

Carolyne - i don't want to sound rude, but is there any way that he doesn't need to wear the vest with tassels?

I appreciate if it's all to do with being Jewish - I'm just wondering if there's a way round it - a compromise? Sorry - compromise maybe isn't the right word, but I'm sure you know what i mean.

You know - there is a school in Glasgow that has a lot of Jewish children - sometimes they're in the news for various things (not always about religion - other things as well)

2 of my children go to catholic schools (we are Catholics, but it was a choice i made) goes to a special needs school for kids with severe and complex needs, it's non denominational. But i always say that all my kids are at the school that's right for them.

Don't getme wrong - I've had a few run ins with 's primary school. (which he leaves 3 weeks today HURRAH) When Louise started there, one pupil got wind of her brother being different. I pointed out that we should be learning to respect others - not putting them down. Louise cried all weekend, but i warned the staff that wouldn't be so tolerant.

Luckily, his friends have been really good. Most times, they don't bother about the differences. And his friends are very receptive to knowing about . I just hope it continues when he gets to secondary!!

I hope your son enjoys his visit to school. And i hope he has a group of good freinds who like him for who he is.

Re: New to group

Dear His new uniform is a white polo shirt and grey trousers, as its a Jewish school he must wear other religous articles as well, a tzitzit which is like a vest with tassles and a cupple which is a scull cap.Not looking forward to that one let me tell you.Carolyne> This is very common. Best to wash the uniform a few times first. Does the > school use polo or t-shirts? These are much easier on the skin. But watch > out for embroidered logos - my son finds these too irritating. However, he > was OK with his school uniform because it was what everybody wore. (He's 17 > now and just about to do A-levels).> > As soon as you get a diagnosis you need to tackle the school to get him on > the special needs register. They should put him at School Action and give > him support either in lessons and/or at breaktimes (but they don't like > doing the latter). Don't let them fob you off with excuses. He will be > legally entitled to help.> > in NE Hants England

No virus found in this outgoing message.

Checked by AVG Anti-Virus.

Version: 7.0.323 / Virus Database: 267.6.4 - Release Date: 06/06/2005

[Guest guest]

I've never done it, but our son's physical therapist did brushing with

him. As I understand it, she used a baby's hairbrush. But I know that

one can really screw up if one tries to do this without proper training.

It might be a good idea to ask around locally and see if you can find

a therapist who practices this. It's fairly common.

Annie, who loves ya annie@...

--

War is a racket - conducted for the benefit of the very few, at the

expense of the very many. Out of war a few people make huge fortunes. ~

Gen. Smedley D. , USMC

[Guest guest]

Hi,

I'm new to the group. I introduced myself in a prior email and am getting a wonderful education in this very disturbing topic. I am a little confused about some of the abbreviations used, though. Forgive my ignorance, but what does NT mean?

Thanks.

Ann

[Guest guest]

I have a hard time with abbreviations as welll and we've been at it

for 5 years!

NT = neurotypical

> Hi,

>

> I'm new to the group. I introduced myself in a prior email and am

getting a

> wonderful education in this very disturbing topic. I am a little

confused

> about some of the abbreviations used, though. Forgive my

ignorance, but what

> does NT mean?

>

> Thanks.

>

> Ann

[Guest guest]

My son's OT does brushing with him too and gave us 2 brushes to bring home to do himself or with my help.

Re: Re: New to group

I've never done it, but our son's physical therapist did brushing with him. As I understand it, she used a baby's hairbrush. But I know that one can really screw up if one tries to do this without proper training. It might be a good idea to ask around locally and see if you can find a therapist who practices this. It's fairly common. :)Annie, who loves ya annie@...-- War is a racket - conducted for the benefit of the very few, at the expense of the very many. Out of war a few people make huge fortunes. ~ Gen. Smedley D. , USMC