Re: Problems with MB12 shots

[Guest guest]

> I started him back on

> the MB12 with folinic acid, but not TMG.

Have you done the MB12 alone w/o the folinic acid? You might want to try to

figure out if one of them alone is the culprit. My son did great on MB12,

but could not tolerate folinic acid.

L.

[Guest guest]

,

I think the HRI :Pfeiffer treatment center could possibly help your son.

They are really good with behavioral type problems. They focus on the

biomedical

reasons. They helped us out of that type of behavior in a short time.

a H.

[Guest guest]

It is important for us to keep in mind that " one size fits all " does not

work in autism. Virtually all treatments that help a subgroup of kids

also (a) leave some kids not affected, and ( some kids set back. An

excellent summary for many treatments can be found in ARI's Parent

Ratings summaries (1). Amidst that data, notice the ratio of

improved/regressed (or something like that). GFCF and Chelation earn the

best ratios. mB12 injections in autism have been accepted by MIND as a

near future study. Many DAN folks had input for the initiation of that

study. I find myself hoping that some of MIND's recently acquired

old-guard-mind-set bigwigs don't superintend the study into a

non-finding - which can happen in research that has societal and

political and economic ramifications. The CDC provides an example: the

CDC's original findings (1999) revealed strong associations with a range

of neurologic problems. The CDC's solution was deliberately to dilute

the data until those findings disappeared, then go forth and published

the (diluted-data) results (Verstraeten et al 2003).

1. http://www.autism.com/ari/specialinterest/form34q.html

A one-page pdf is also available on that url.

Poole Family wrote:

>I started my 11YO son on 10 mg/ml MB12 shots in May, 2x a week. He was also

getting TMG and folinic acid. Things started going downhill with him big time.

In fact, things got so bad with him by August that we decided to drop all

supplements and see if we could stabilize him then start over. His behavior was

horrible: he wet all over the house (both accidentally and on purpose), he had

2-3 SIB meltdowns every day, he could not get to sleep at night, he was licking

his hands and wiping spit on everything and everyone, etc.

>

>I wasn't convinced that the MB12 was the problem because we began weaning him

from Depakote (with his neuro's blessing -- he has a mild seizure disorder, but

no seizures) in July and I have read that this can cause many problems since the

body begins releasing it from fatty tissue and it can take several months. I

also wondered if the TMG might have been the problem.

>

>By October, he was fairly well stabilized and I had successfully reintroduced

some of his basic supplements. So, about two weeks ago, I started him back on

the MB12 with folinic acid, but not TMG. The first week he was fine. But this

past week we have seen a return of the serious problems. Dr. JM said it is

important to give it a good trial, but I'm not sure we can live with these

problems. He is 95 pounds and impossible to move or keep from biting his arm raw

during meltdowns. Plus, he has licked and/or wet on his hand and deliberately

poked me in the eye twice, in addition to trying to do the same to his baby

sister (who is only 15 months old). I could go on and on about how difficult it

is to live with him, but the point is, should we keep this up in the hopes that

something good will come of all this if we are patient? Or should we just give

up on the MB12 *dream*? He is nonverbal and we have been doing DAN! biomedical

interventions since Day One (8 years ago). It's discouraging that we haven't

really come very far.

>

>Thanks,

>

>--

>

>

>

>

[Guest guest]

No, I hadn't tried it without the folinic acid. Thanks for sharing your

experience with it because I had thought that it might be that. I will have to

try eliminating that.

--

>Have you done the MB12 alone w/o the folinic acid? You might want to try to

figure out if one of them alone is the culprit. My son did great on MB12,

but could not tolerate folinic acid.

L.

[Guest guest]

Thank you, a! That's encouraging. Do they do long distance consultations at

all?

,

I think the HRI :Pfeiffer treatment center could possibly help your son.

They are really good with behavioral type problems. They focus on the

biomedical

reasons. They helped us out of that type of behavior in a short time.

a H.

[Guest guest]

, I have read somewhere that people with over-methilation may

have not the best advantage from the use of MeB12 and folinic acid.

Have you have ever cheched about this condition?

Stefano

> No, I hadn't tried it without the folinic acid. Thanks for sharing

your experience with it because I had thought that it might be that.

I will have to try eliminating that.

>

> --

> >Have you done the MB12 alone w/o the folinic acid? You might

want to try to

> figure out if one of them alone is the culprit. My son did great

on MB12,

> but could not tolerate folinic acid.

>

> L.

>

>

>

>

[Guest guest]

I agree with . I've talked with so many parents who can have

some things work beautifullly while other kids show no response,

while other's horribly regress. The gfcf diet is a great example. I

have a friend whose son will be considered recovered soon. She

credits gfcf. She cannot comprehend how another friend has tried

just as hard 2 different times with absolutely no change in

behavior. Sometimes we get stuck on what's working and from our deep

desires we want it to help every child.

I still believe there are things out there to help every child, we

just have to stick with it and keep sharing stuff.

Debi

> It is important for us to keep in mind that " one size fits all "

does not

> work in autism. Virtually all treatments that help a subgroup of

kids

> also (a) leave some kids not affected, and ( some kids set back.

An

> excellent summary for many treatments can be found in ARI's Parent

> Ratings summaries (1). Amidst that data, notice the ratio of

> improved/regressed (or something like that). GFCF and Chelation

earn the

> best ratios. mB12 injections in autism have been accepted by MIND

as a

> near future study. Many DAN folks had input for the initiation of

that

> study. I find myself hoping that some of MIND's recently acquired

> old-guard-mind-set bigwigs don't superintend the study into a

> non-finding - which can happen in research that has societal and

> political and economic ramifications. The CDC provides an example:

the

> CDC's original findings (1999) revealed strong associations with a

range

> of neurologic problems. The CDC's solution was deliberately to

dilute

> the data until those findings disappeared, then go forth and

published

> the (diluted-data) results (Verstraeten et al 2003).

>

>

>

> 1. http://www.autism.com/ari/specialinterest/form34q.html

> A one-page pdf is also available on that url.

>

>