Re: Biomedical Interventions/Discussions for W.

[Guest guest]

In a message dated 11/5/2005 10:32:30 P.M. Central Standard Time,

mwaybright@... writes:

I have a question about DMG. I've been thinking about trying it, but a

friend of mine thought she remembered reading that it was best to try this

later in the protocol. What do you all know about this?

I have not read anywhere that DMG should be tried later according to a

specific protocol (not sure which one you're referring to). In the book,

Biological Treatments for Autism & PDD by Shaw, in chapter 9 which is

written

by Bernard Rimland of the Autism Research Institute, Dr. Rimland doesn't say

when the best time to start he just writes that for a pre-school aged child

he would start with 1/2 of a 125 mg tablet a day with breakfast for a few

days. Then gradually increase to 1 to 4 tablets a day. We only did 1 tablet per

day the entire time my son was on it. Dr. Rimland suggests if you are just

starting out, to give DMG for 2-3 weeks then add B6/magnesium. He says to write

to ARI for publication 39F for more info. He also says when you start a trial

of DMG not to confuse the results by simultaneously starting other vitamins,

drugs, or other forms of treatment that make it difficult to tease out the

effects of DMG. But when time is of the essence, it's hard to wait. R.

[Guest guest]

Can I add my experience to this? If you are going to try methyl B12

injections then Dr. Neubrander (the pioneer/expert of this

supplement) suggests it be tried alone for 5 weeks. By alone I

mean not to take DMG/TMG or folinic acid or FolaPro.

The first " WOW " gain we saw in our autistic daughter was when we

added methyl B12 injections. I had a feeling she would respond well

to this supplement as we tested her MTHFR gene and she had a double

SNP there which means her ability to methylate is deficient to nil.

For 2 weeks we had her on the " every 3rd day " injection schedule.

The first day after the injection we could note a difference in her,

but nothing on days 2 and 3. So I spoke with our DAN doc and he

agreed I could give the injections everyday without lowering the

dosage. (Note that excess vit B12 is excreted, thus no chance of

becoming toxic.) On the third day of the daily shots, she went and

got her old dusty potty chair, set it up on my bed so she wouldn't

miss Elmo, shucked down her panties, and peed in the potty! She has

used that potty every day since July without encouragement. I had

stopped trying to train her about 6 months before because I could

see she just wasn't ready developmentally; she " didn't get it " at

all. Needless to say, we were stunned and THRILLED. I can honestly

say that the methyl B12 was responsible for that gain.

By the way, only about 50% of kids have 1 or 2 SNP's on the MTHFR

gene, but Dr. Neubrander says that 85% of kids using methyl B12

injections improve with this supplement. (This is parent reported

improvement.) Message being...you don't have to undergo expensive

genetic testing and even if you do and it is negative, it is worth a

five week trial on methyl B12 injections to see if your child is one

of those 85% who benefit. Why NOT try a a biomedical intervention

that has 85% of parents reporting improvements in their autistic

child's symptoms?

Also, for those who can't imagine giving a shot...this needle is

smaller than a diabetic needle and is given in the fat, not muscle,

of the buttock. I give it when my daughter is asleep and she

doesn't notice it. But others get a prescription for EMLA cream and

apply that first to numb the area. So please don't discount it for

this reason. I just approached it with the mind-set of " if she were

a diabetic I would inject her with insulin; since she is a poor

methylator I will inject her with methyl B12 " .

Lastly, a methyl B12 nasal spray has just been developed. It

doesn't have all the numbers supporting the efficacy yet, but that

is a route to administer the methylcobalamine which might be easier

on the child (and parent).

Sorry so long. I am always happy to correspond with others

interested in or using the DAN! protocol or biomedical

intervention. started chelating using TD-DMPS 2 months ago and

we are seeing gains with this treatment, too. She is on various

other supplements, but the next big therapy she will undertake is

HBOT. I am particulary excited about getting that started as a tiny

study presented at the last DAN! conference stated that the most

improvements were noted in kids 4 and under. However, I have read

that autistic adults are seeing gains as well. The neat thing is

that unlike many interventions/therapies this one has a test to

measure improvement. There is a test of the brain called SPECT

scans which can be done before and after a course of HBOT. These

scans have shown improvements in EVERY autistic individual who has

employed them. We will do the hypobaric therapy without them as

insurance doesn't cover them. But the fact that so many others have

seen gains using this therapy makes me feel motivated to try it.

Take care,

Penni

Penni

>

>

> In a message dated 11/5/2005 10:32:30 P.M. Central Standard Time,

> mwaybright@c... writes:

>

> I have a question about DMG. I've been thinking about trying it,

but a

> friend of mine thought she remembered reading that it was best to

try this

> later in the protocol. What do you all know about this?

>

>

> I have not read anywhere that DMG should be tried later according

to a

> specific protocol (not sure which one you're referring to). In the

book,

> Biological Treatments for Autism & PDD by Shaw, in chapter

9 which is written

> by Bernard Rimland of the Autism Research Institute, Dr. Rimland

doesn't say

> when the best time to start he just writes that for a pre-school

aged child

> he would start with 1/2 of a 125 mg tablet a day with breakfast

for a few

> days. Then gradually increase to 1 to 4 tablets a day. We only did

1 tablet per

> day the entire time my son was on it. Dr. Rimland suggests if you

are just

> starting out, to give DMG for 2-3 weeks then add B6/magnesium. He

says to write

> to ARI for publication 39F for more info. He also says when you

start a trial

> of DMG not to confuse the results by simultaneously starting

other vitamins,

> drugs, or other forms of treatment that make it difficult to tease

out the

> effects of DMG. But when time is of the essence, it's hard to

wait. R.

>

>

>

[Guest guest]

and Penni:

Thanks so much for the info! I'm going to write for that publication on DMG

and will seriously consider the Methyl B12 shots. I was hesitant to do

those because of the whole shot aspect, but if you REALLY can give the shot

while sleeping, we'll have to give it a go. I might do the DMG first though

so I can work up the courage for the shots!

Thanks again!

_____

From: Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of

kgreeceman@...

Sent: Sunday, November 06, 2005 10:55 AM

To: Texas-Autism-Advocacy

Subject: Re: Biomedical Interventions/Discussions

for W.

In a message dated 11/5/2005 10:32:30 P.M. Central Standard Time,

mwaybright@... writes:

I have a question about DMG. I've been thinking about trying it, but a

friend of mine thought she remembered reading that it was best to try this

later in the protocol. What do you all know about this?

I have not read anywhere that DMG should be tried later according to a

specific protocol (not sure which one you're referring to). In the book,

Biological Treatments for Autism & PDD by Shaw, in chapter 9 which

is written

by Bernard Rimland of the Autism Research Institute, Dr. Rimland doesn't

say

when the best time to start he just writes that for a pre-school aged child

he would start with 1/2 of a 125 mg tablet a day with breakfast for a few

days. Then gradually increase to 1 to 4 tablets a day. We only did 1 tablet

per

day the entire time my son was on it. Dr. Rimland suggests if you are just

starting out, to give DMG for 2-3 weeks then add B6/magnesium. He says to

write

to ARI for publication 39F for more info. He also says when you start a

trial

of DMG not to confuse the results by simultaneously starting other

vitamins,

drugs, or other forms of treatment that make it difficult to tease out the

effects of DMG. But when time is of the essence, it's hard to wait.

R.

[Guest guest]

We are using vitamin research sublingual b-12 and it has a cinnamon-

cherry flavor and Cody doesn't mind it at all and will hold his tongue

up while I put it under there.

[Guest guest]

Agreed the shots are no big deal. The needle is really tiny and even

without the cream my son will go along willingly. Beware though I think

Matt threw some of them away he's getting way sneaky. Down side of

chelation and B-12? Wouldn't we all throw away our medicine if that

meant we didn't have to take it? Too bad there isn't a sneaky category

in the autism rating scale... Trina

Re: Biomedical

> Interventions/Discussions

> for W.

>

>

>

>

> In a message dated 11/5/2005 10:32:30 P.M. Central

> Standard Time,

> mwaybright@... writes:

>

> I have a question about DMG. I've been thinking

> about trying it, but a

> friend of mine thought she remembered reading that

> it was best to try this

> later in the protocol. What do you all know about

> this?

>

>

> I have not read anywhere that DMG should be tried

> later according to a

> specific protocol (not sure which one you're

> referring to). In the book,

> Biological Treatments for Autism & PDD by

> Shaw, in chapter 9 which

> is written

> by Bernard Rimland of the Autism Research Institute,

> Dr. Rimland doesn't

> say

> when the best time to start he just writes that for

> a pre-school aged child

>

> he would start with 1/2 of a 125 mg tablet a day

> with breakfast for a few

> days. Then gradually increase to 1 to 4 tablets a

> day. We only did 1 tablet

> per

> day the entire time my son was on it. Dr. Rimland

> suggests if you are just

> starting out, to give DMG for 2-3 weeks then add

> B6/magnesium. He says to

> write

> to ARI for publication 39F for more info. He also

> says when you start a

> trial

> of DMG not to confuse the results by simultaneously

> starting other

> vitamins,

> drugs, or other forms of treatment that make it

> difficult to tease out the

> effects of DMG. But when time is of the essence,

> it's hard to wait.

> R.

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> Texas Autism Advocacy

> www.TexasAutismAdvocacy.org

>

> Texas Disability Network

> Calendar of Events

> www.TexasAutismAdvocacy.org

>

>

>

>

> _____

>

> YAHOO! GROUPS LINKS

>

>

>

> * Visit your group " Texas-Autism-Advocacy

>

<http://groups.yahoo.com/group/Texas-Autism-Advocacy>

> " on the web.

>

> *

[Guest guest]

, I hope I don't get a " DUH! " back from you, but...is this methyl

B12? For others interested in a sublingual, make sure you obtain

METHYL B12--whatever the route. The type most commonly found in

health food stores is NOT methyl B12. Dr. Neubrander explained it in

a paper like this: Think of your family. Everyone has the same last

name, but each individual has a different first name. It is the same

with B12. There is CYNCOcobalamine, HYDROXYcobalamine,

METHYLcobalamine, and 2 others. The form which is beneficial to

autistic kids is methylcobalamine and the others don't provide the

same supplementation to the methylation system. Just an FYI for those

who didn't know there are different types of B12.

Penni

>

> We are using vitamin research sublingual b-12 and it has a cinnamon-

> cherry flavor and Cody doesn't mind it at all and will hold his

tongue

> up while I put it under there.

>

>

[Guest guest]

I am sorry. I should have specified that it is the Methylcobalamin

Vitamin B-12. It is 1000mcg per 1 ml. I wouldn't use anything as as

they need the cobalt to assumulate the vitamin.

[Guest guest]

Penni,

After all this discussion on Methyl-B12, I checked my cabinet and found that I

still have a bottle of tablets that say " Methylcobalamin B-12 " that we were

giving our sons a couple of summers ago during a time when they were taking

about 15 different suppplements a day! I got burned out--wasn't seeing

tremendous results-- but I am going to start giving the boys this B12 again, but

I was wondering how much of a dose you were told to give your child? Our twins

are 11 years old--Joe weighs over 100 pounds now, and Ben is probably about 85

pounds or so. I don't know if your child is even close to the size of my boys

but I was just curious how much you're giving your child.

Thanks,

a

Re: Biomedical Interventions/Discussions for

W.

, I hope I don't get a " DUH! " back from you, but...is this methyl

B12? For others interested in a sublingual, make sure you obtain

METHYL B12--whatever the route. The type most commonly found in

health food stores is NOT methyl B12. Dr. Neubrander explained it in

a paper like this: Think of your family. Everyone has the same last

name, but each individual has a different first name. It is the same

with B12. There is CYNCOcobalamine, HYDROXYcobalamine,

METHYLcobalamine, and 2 others. The form which is beneficial to

autistic kids is methylcobalamine and the others don't provide the

same supplementation to the methylation system. Just an FYI for those

who didn't know there are different types of B12.

Penni

>

> We are using vitamin research sublingual b-12 and it has a cinnamon-

> cherry flavor and Cody doesn't mind it at all and will hold his

tongue

> up while I put it under there.

>

>

Texas Autism Advocacy

www.TexasAutismAdvocacy.org

Texas Disability Network

Calendar of Events

www.TexasAutismAdvocacy.org

[Guest guest]

a, I am going to post here what Dr. Neubrander last stated was

his current dosage and delivery schedule for SUBCUTANEOUS methyl

B12. I'm not sure if you would give a different amount by mouth (I

would think a higher dose) as the absorption would be different from

the intestines as opposed to the fatty tissue of the hiney. There

is a reason why Dr. Neubrander believes injected is a MUCH superior

route for ASD kids...I just can't remember why at the moment!

However, depending on a child's age and willingness to comply, shots

could be out for some kids. There has just been developed a nasal

spray of methyl B12. Folks are talking about it because you avoid

the shot aspect and it is absorbed into the tiny blood vessels of

the nose, thus avoiding the notoriously messed-up ASD GI tract.

However, it is so new I can find no opinion as to efficacy as

compared to the subcutaneous route or any parent reports yet of

effectiveness. If you or anyone is interested I can find out the

price and where it can be ordered from. I believe it is being

produced by a compounding pharmacy and would require a prescription.

Here's Dr. Neubrander's methyl B12 dosage & delivery schedule:

64.5 mcg/kg once every 3 days to the adipose tissue of the buttocks

at an angle severe and horizontal enough to guarantee a " shallow "

subcutaneous delivery from a BD 3/10 cc insulin syringe with an 8

mm, 31-gaurge needle (item # 328438 only) and made from a 25 mg/ml

methyl-B12 stock solution

My daughter was either 50 or 51 pounds when we last calculated

dosage and her dose was 1524.135 rounded to 1524 mcg every 3 days.

As a side note, we went to daily shots at that dose and have seen

great gains. The body excretes excess B12 that it doesn't use and

it will not build up within the body.

HTH,

Penni

> >

> > We are using vitamin research sublingual b-12 and it has a

cinnamon-

> > cherry flavor and Cody doesn't mind it at all and will hold

his

> tongue

> > up while I put it under there.

> >

> >

>

>

>

>

>

>

> Texas Autism Advocacy

> www.TexasAutismAdvocacy.org

>

> Texas Disability Network

> Calendar of Events

> www.TexasAutismAdvocacy.org

>

>

>

>