[Fwd: Email Exchange with Prof Jill on Apraxia & Her Research and MB12]

[Guest guest]

Here is a repost from -2005- which contains info by Prof apraxia

research which includes her comments on using MB12 and seeing apraxia

improvements.

10 Jan 2005 tltbaku@... wrote:

Dear All,

Here is the full transcript of a recent conversation I have had with

Professor S. Jill , one of the primary co-authors of several of the

astonishing recent articles on impaired glutathione and methylation among

autistic children and other children with nuerodevelopmental conditions and

disorders.

Because of Colleen's amazing experience with her son who is apraxic with

sensory integration disorder, I wrote to Professor about replicating

her testing and treatment protocol abroad in the Netherlands. I can't bring

my child to a DAN! doctor here because the DAN! movement is just now getting

started in Europe, and there are no DAN! doctors per se who would have

access to the Jill protocol.

I didn't want to bother her too much with some of the more burning questions

I'm dying to ask about the larger implications of her research, but was

selfish enough to contact her about my own burning issue, which is my child.

If the list thinks it important, however, I would be willing to ask a few

other pertinent and well-researched questions on behalf of the list.

Particularly if we review the literature we have and still have questions or

if the questions concern the larger implications of her work

In response, Prof. sent me her " Metabolic Biomarkers " article and an

amazing powerpoint presentation from a recent DAN! conference which

includes a great deal of detailed information concerning the biological

processes, theory, testing and treatment protocol.

She also said, as you will see if you read on, that the treatment --

especially the methyl B12 shots -- can dramatically reverse apraxia in some

cases. She also said that she wish tht she understood the brain biochemistry

behind it.

Please, everyone -- READ THIS exchange. If anyone would like to obtain

copies of the materials Professor sent to me, don't hesitate to ask me

off-list. I have a email address and the prefix is tltbaku. I will

send it all to you as soon as I possibly can.

There is an excellent 2003 article by and Malnyk on cobalamin -

Cobalamin deficiency with and without neurologic abnormalities: differences

in homocysteine and methionine metabolism -

http://www.bloodjournal.org/cgi/content/full/101/8/3302

FYI: Professor is a former US Federal Drug Administration senior

research scientist in the Division of Biochemical Toxicology, now at the

University of Arkansas for Medical Sciences. See

http://www.uams.edu/pediatrics/faculty/Birth%20Defects/,%20Jill.asp ,

http://www.fda.gov/nctr/staff/bios-html/jjames.html and

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd==search & db==pubmed & term==Jame

s+SJ[au] & dispmax=P .

Best,

Theresa, mother of Lulu, 2 yrs, possible apraxia of speech and global

(motor) apraxia

________________________________________

From: Theresa Lynn Truax [mailto:tltbaku@...]

Sent: Sun 1/9/2005 10:17 AM

, Jill

Subject: Replicating Your Testing & Treatment Protocol Abroad for Patient in

The Netherlands???

Dear Dr. ,

I am writing to you concerning you newest research to inquire about the

kinds of tests and treatment protocols that we could possibly implement

while living abroad in the Netherlands. I am very much hoping that you can

help us.

I am the mother of a 24-month old internationally adopted daughter with

serious developmental delays. While no diagnosis has been made, a pediatric

neurologist has suggested apraxia of speech and global apraxia, with perhaps

some sensory integration issues. They say it is too early to diagnose, and

that

we need to implement therapy and wait. Instead, we want to go ahead with

testing and, if indicated, treatment.

Much of our daughter's medical history presents as a child with a genetic

and/or acquired susceptibility: vaccinated with three thimerosal-containing

vaccines (birth, 3 and 4 months of age) and three whole-cell vaccines (BCG

16 days, IPV 2 months, DTP 4 months of age); orphaned in a highly polluted

area of the developing world; severe gastro-oesophageal reflux and milk

intolerance; born at 36 weeks gestation and small for dates; possible folic

acid and B12 deficiency at birth (elevated MCV and MCH values); hypotonia

noted at age 5 months, severe speech and gross and fine motor skills delays.

Three of the four children we know adopted from the same orphanage have

neurodevelopmental disorders - ADHD, SLI and our daughter.

We are in contact with associates of Dr. Emar Vogelaar of the Autism

Research and Treatment Center (ATRC) in Cliffwood Beach NJ, and the European

Laboratory of Nutrients in the Netherlands

(http://eln.healthdiagnostics.nl/index.php3?lang2==en). However, there is no

pediatric doctor in the Netherlands who treats children with autism and

neurodevelopmental disorders according to the DAN! protocol per se. We

therefore must try to convince an open-minded pediatrician to try certain

tests concerning impaired methylation and oxidative stress, and then to

treat as indicated. Binstock of ARI suggested that we try your

protocol. Because the chelating agents of DMSA and TD-DPMS are not

available in the Netherlands (only DMPS), chelating and chelating testing

for heavy metal toxicity is not an option for our young daughter. We have

an appointment in two week's time with a pediatrician in The Hague who also

serves on the Netherlands board of integrative medicine and are hoping to

convince her that testing and treatment according to your protocol would be

an interesting avenue to pursue.

I wonder if you could possibly advise me on the best tests and treatment

protocol to use, in a sort of reduced replication of the protocol you have

been using. I understand that in your recent research you used a number of

tests to determine different aspects of methylation processes and indicators

of oxidative stress, but I suspect that some of these tests may not be

replicable outside your laboratory -- certainly not here in the Netherlands.

I also understand that your testing included genetic testing, perhaps for

MTHFR and other alleles (GST, DRB*0401, pro-inflammatory IL-1ra allele).

I also understand that your new treatment protocol does not entail

chelation, but rather a re-stimulation of the body's ability to produce,

with supplementation and diet, active glutathione and thus to properly

methylate, reducing the presence of toxins and oxidative stress. My husband

and I would be very much interested in learning from you this treatment

protocol, as we may be unable to chelate our daughter here in the

Netherlands given her young age and the unavailability of chelating agents

safe enough for her.

Thank you very much for all you and your colleagues are doing for our

children, and thank you for your help concerning this matter.

Best,

Theresa Truax

Amsterdam, Netherlands

________________________________________

From: , Jill

Sent: Sunday, January 09, 2005 11:52 PM

Theresa Lynn Truax

Subject: RE: Replicating Your Testing & Treatment Protocol Abroad for

Patient in The Netherlands???

Theresa,

What a lucky little girl to have a Mom like you! Here is our paper if that

might help convince the physician. These doses are too high for a 2 year

old. Need to start at 1/4 dose and work up slowly. Most important are the

folinic acid and methyl B12 (available from Hopewell Compounding pharmacy,

Hopewell New Jersey). Together, these nutrients have been shown to treat

apraxia and many (but not all) kids with autism. Selenium and zinc are

minerals that help support the enzymes in this pathway. I am also attaching

the slides from a recent talk that go into the biochemical basis for the

intervention if that would help. Good luck,

Jill

______________________________________

From: Theresa Lynn Truax [mailto:tltbaku@...]

Sent: Sun 1/9/2005 10:59 PM

, Jill

Subject: RE: Replicating Your Testing & Treatment Protocol Abroad for

Patient in The Netherlands???

Dear Professor ,

Thank you so much for these! You are so kind to respond so quickly.

I wonder if I could ask you, briefly, what kind of tests a fairly regular

laboratory could run to test for impaired methylation and oxidative stress?

Dr. VogelaarÂ?s laboratory can run an amino acid panel, but certainly not the

new kinds of testing that only your laboratory does. We could also of

course, check for certain genetic predispositions, but I do not know what

polymorphisms of the MTHFR, GST, DRB*0401, or pro-inflammatory IL-1ra

alleles would reveal.

If you have any suggestions for us in terms of how to do testing here in the

Netherlands, we would greatly appreciate it.

Absolute best,

Theresa Truax

Amsterdam

________________________________________

From: , Jill

Sent: Monday, January 10, 2005 3:05 PM

Theresa Lynn Truax

Subject: RE: Replicating Your Testing & Treatment Protocol Abroad for

Patient in The Netherlands???

For impaired methylation, low methionine may be an indication (our test is

more specific but is usually accompanied by low methionine). For oxidative

stress, low cysteine - both of these are done on an amino acid analyzer.

Low serine would suggest a possible problem with both. The genetic tests

tell you what " might be " - the metabolic tests tell you what " is " . So don't

worry about the genetic testing - a single polymprphism may be normal or

abnormal and we see the same metabolic pattern.

Jill

________________________________________

From: Theresa Lynn Truax [mailto:tltbaku@...]

Sent: Mon 1/10/2005 7:45 AM

, Jill

Subject: RE: Replicating Your Testing & Treatment Protocol Abroad for

Patient in The Netherlands???

Dear Professor ,

Thank you so VERY much for your time.

I want you to know that we have been discussing you and your colleaguesÂ?

recent work on an apraxia listserve. While those with children who present

co-morbidly with ASD and apraxia pretty much donÂ?t need convincing about the

DAN! biomedical approach, there are only a handful of parents with children

who present only as apraxic who are convinced. Might I share with them what

you have written to me?

Thank you again for all that you are doing for our children.

All the best,

Theresa Truax

________________________________________

From: , Jill

Sent: Monday, January 10, 2005 4:48 PM

Theresa Lynn Truax

Subject: RE: Replicating Your Testing & Treatment Protocol Abroad for

Patient in The Netherlands???

OK to share. I have learned that each child is unique and there is no " one

size fits all " here and that the parents know what is working and not

working better than anyone else. I will say the the methylB12 injections

(subcutaneous in the butt fat) can dramatically reverse apraxia in some

cases - I wish I understood the brain biochemistry behind it - it is

absolutely amazing when it works.

Jill