Re: MB12,NJ DAN conference

[Guest guest]

MB12 should be given for a short while and thn later with folinic acid.

First give the MB12 (methylcobalamin) without it. It is a water

soluable vitamin. (Unlike A, D and E) and so the doctors are not worried

about overdosing on it. What may be a factor if you try it for at least

5 weeks as the brain takes time to adjust. I would highly recommends

Stan Kurtz board for this discussion. He has videos of persons with more

than just autism recoveries. He recovered himself from his ADD. Many

kids at his cornerhouse school are recovering, too, from many things

including allergies, asthma, ADD, autism etc. This is a very genuine

man that has donated his time to help other parents. He is very open to

researching new treatments and documenting the outcomes. Stan will be in

Cherry Hill New Jersey for an autism conference in May. (not as a

speaker, but as a guest) This is truly one enlightened man.

If you live in New Jersey, get to the conference, as many of our kids

issues are overlapping and many of the treatments discussed with help

more than just children with autism. Autism is a blanket diagnosis that

encompasses impairments with speech, socialization, sensory

disintegration, apraxia, dysparxia, obsessive compulsive disorders,

attention deficits, fixations, and more. Most of our apraxic children

can benefit from the inforamtion from one of these conferences.

http://www.defeatautismnow.com/

There is another conference in Chicago in May too.

momresearch wrote:

> Here's one more archive message of our experience (after the list of

> links to help your research).

>

> Please do follows 's advice and research very thoroughly the MB12

> treatments ahead of time, the probable and potential side effects

> (including temporary behavioral implications), how you shouldn't make

> ANY other dietary changes or supplement changes during the first 5 weeks

> to allow a clean evaluation of whether the patient responds or not and

> how, additional mineral/vitamin/other supplements that you may need to

> add as the MB12 starts working. Stay in contact with your doctor to

> discuss in a short timeframe all changes observed and be ready to alter

> the program including stopping it, if deemed necessary. (This applies to

> ANY type of medical or other treatment for any of us and does not mean

> the treatment is unsafe.)

>

> Resources about various MB12 therapies

> www.drneubrander.com

> www.stankurtz.com

> http://www.childrenscornerschool.com/mb12nasalspray.htm

> http://www.talkaboutcuringautism.org/medical/methyl-b12-treatments.htm

>

> Discussion groups on MB12 (but it is talked about about on most autism

> boards)

> mb12 valtrex/

>

> Scientific studies about MB12/Methylation Cycle

> http://www.drneubrander.com/Files/Oxidative Stress.pdf (Dr Jill )

> http://www.drneubrander.com/Files/Deth Testimony.pdf (Dr Deth)

> http://www.autismweb.com/forum/viewtopic.php?t=8529 & postdays=0 & postorder=asc &

>

> Here are a few of the compounding pharmacies (does require

> prescription)..price shop

> and check out MB12Valtrex where they are in the know about pricing

> comparisons.

> I don't think sublingual drops require a prescription though but check

> all ingredients if you don't get it compounded clean.

> http://www.coastalcompounding.com/

> http://www.collegepharmacy.com/

> http://www.fallonpharmacy.com/

> http://www.hopewellrx.com/wellness/links.shtml

> http://www.leesilsby.com/contact.html

>

>

> On 05July2007 momresearch wrote

>

> Hi Wendi

>

> Here's some info based on our experience...

>

> The MB12 shots are given with a syringe and tiny tiny needle (the ones

> used to give insulin) - and it's given in fatty tissue just below the

> surface. It's nerve-wracking on the first one you give - we give our

> son his while he's sleeping about 5am (my husband is up that early - not

> me) so we take advantage. I tried giving it after he was just asleep

> but often I'd fall asleep waiting for him to get asleep good enough. I

> even tried the Emla cream for a while but that would wake him up twice

> (once to put on the Emla and once to give the shot). It really is a

> painless shot - if one does have pain it is probably because the pH of

> the formula is too high (that has happened to some peoples batches that

> the pharmacy replaced for free).

>

> As for there not being side effects........that's not so true. The

> MB12 alters the body's metabolic system in some way too...not only can

> there be hyperactiveness for up to several months, there can also be

> insomnia, increased mouthing of objects (like putting things in your

> mouth like an infant, eating dirt or licking things you wouldn't

> expect). My son had a neurologic reaction that was rare but it

> happened for several weeks...but improved after adding in folinic acid

> (that we had to them remove because it made him spacey...not present).

> We did get some pluses mixed in with the period of adjustment for his

> body to get used to the new changes -- he would go to his own bed when

> I'd say it was time for bed and WANTED TO, his eye contact clicked in,

> he could distinguish between hot and cold, he acknowledged and

> communicated pain when he hurt himself - before he was indifferent. He

> could say and understand more things, too, so there was an improvement

> in his auditory processing system. His digestion also changed for the

> better but that was due to a combination of treatments and which cannot

> be attributed to any single treatment by itself. The MB12 wasn't a

> magic talking shot, but has helped his global well-being. (oh - and he

> hasn't eaten meat in 3 years so he doesn't get much B12 in his diet

> otherwise due to his severe food selectivity)

>

> As you begin this process, observe objectively, keep an open dialogue

> with your DAN! for ANY odd changes or questions/doubts you may

> have....it may take several weeks to notice some changes - good or bad

> or none. Check out Dr. Neubrander's questionnaire (it's on his

> website)...he also has a forum where he and his brother Rick respond to

> questions. And remember not to make any other dietary or supplement

> changes during the first 6 weeks - unless some of the negative symptoms

> might warrant the addition of zinc or folinic/folic acid earlier (with

> your DAN! ok). At the end of 6 weeks, discuss with your DAN! and

> decide together if your child " responded " or not - not all kids do.

>

> P.S.

> Don't worry about a build up because the MB12 is water soluable. If you

> accidently were to inject into muscle (i.e. too deep which is hard to do

> with the tiny needle) the urine would be red where the MB12 is expelled

> from the body.

>

>

>

>

>

[Guest guest]

,

Since MB12 is something we have not pursued here through anything but

diet (and only recently...causing horrific poop but fabulous gains) I

was wondering if it is one of those treatments you have to try to

know if it is an issue. My limited reading seems to indicate that

unless you are able to see ileum damage on the camera scope...is that

right?

Thanks!

Liz

[Guest guest]

Hi Liz and others that want to know more about mb12.

http://www.stankurtz.com/biomedical/mb12-nasal-spray-summary.html

B12 through diet is not the same as the methlylated form. Since most of

our kids are poor methlyators, this is why diet forms just do not cut it

for our kids. Gut issues, and metabolic issues present problems for our

kids. If your child does not respond the the methyl form (some kids are

over methylalators....see Dr. Amy Yasko site about some genetic

factorson overmethylation) so a different form of b12 is used. Unless

you can afford the genetic testing or get it covered, the only way to

know is by conservative trials.

We have just started this and I will post on how it works out for my

kids and myself.

ilizzy03 wrote:

[Guest guest]

Very helpful. I am trying diet first as they were getting very little

B. If we truly even have a problem, it is overmethylating with both

kids so this is even more helpful.