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re:continue of Dan! con...
continue of Dan! conference notes:
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Dr. Usman:
We have toxic kids. Low in minerals, phenol sensitivities. If kids
are lead toxic then they are very low in calcium because body thinks
lead is calcium and it goes to the bones and depletes overall
calcium. Kids need supplements for better methylation (TMG,DMG,
methionine, NADH, MB12, folinic) and sulfation (epsom salt, B1 (or
TTFD) Vit C, NAC, Glutathione). She gave overall DAN 101 about
yeast, diet, viral, immune, detoxing, chelation.
Methylation Panel (Lonsdale, Deth, Neubrander, James)
Autism is not a genetic disease. There are mutations in the
methylation cycle and puts kids on a "metabolic cliff", where toxins
can push them over the edge. Our kids have increased oxidative
stress and therefore decreased methylation. Brain needs MB12 all the
time due to oxidative stress. Neubrander spoke some about kids
trying nasal B12 and said it looked promising for some kids, but he
prefers injections. Nasal could be good maintenance in time.
Neubrander had a lot of questions asked that he couldn't get to and
said to check his BioChat site and he will answer them on that.
Dr. Buttar ( not at DAN but presented for a $20 fee in room next
door)
Spent a lot of time alluding to DAN/Buttar conflict, which I have
no background knowledge of so I was a bit confused. Said he always
sees arsenic, antimony, tin, nickel come out first with his td-DMPS.
Said when these metals go up then come back down, then you will see
mercury come out. Different kids dump metals in different ways
(hair, urine, fecal, blood). Clinical improvement always noted
before you read a test result. Bed wetting can happen and last 3-5
months, reason why is that you are dumping more metals. He came out
with DVD explaining his new protocol and it will be up on his
website in one week. Will only do IVs of DMPS on kids over 7. Says
td-DMSA doesn't work because it effects Krebbs cycle/citrus acid
cycle. Did say it is better to do nothing than to do td-DMSA. Wants
you to chelate a minimum of 6-9 months before HBOT (at 1.5)
The Geiers – thimerosol and autism:
Said thimerosol is toxic in parts per billion (not million like
other toxins). Glutathione protects against neurotoxicity, our kids
have low glutathione. Said the lower the glutathione the higher the
testosterone (reason for early puberty in our boys). Said lupron
therapy is brand new for testosterone/autism issues, but didn't say
more just that they are working on it. Nizerol is an antifungal that
can lower testosterone.
Chelation Panel: (McCandless, Cave, Quig, Green)
Spoke of dynamic interplay between toxic metals, nutritional status,
immune issues and other toxins in the body preventing the absorption
of nutrients. This is a spinning cycle until we get rid of toxic
metals. Metals can displace elements: cadmium displaces zinc and
lead displaces calcium. Talked about not much mercury is being
pulled with transdermal chelators. Many spoke of giving minerals
right through rounds of chelation. All have their own way of
chelating and their favorite chelators. Everyone said that they
would treat child as an individual and see which chelator they
needed. When asked how long do you chelate-all said there is no end
to it…as long as you need to. There are some studies that DMPS has
slight ability to cross blood brain barrier but DMSA does not effect
the level of metals in the brain. Td-DMSA don't see too many metals
being pulled, but oral challenge does. TTFD and caEDTA can cross
blood brain barrier. If challenge test does not show metals, still
chelate because it could just be that they are bound too tightly.
Jane El-Dahr & J. McCandless- viral issues:
Our kid's immune systems are a mess. They have neuroinflammation,
abnormal cytokines, a "metabolic gridlock". Therapies to help =
diet, probiotics, Omega 3s, MB12, glutathione, chelation, actos,
antivirals. Acyclovir does not cross blood brain barrier but
valtrex does cross blood brain barrier. Good natural antivirals
are: Lauracedin, garlic, olive leaf extract, probiotics, black
elderberry, oil of oregano, GSE. McCandless likes Virastop and Olive
Leaf Extract combination. Said laurecedin is one of her top choices.
Dr. Bradstreet: "Going home with a plan"
Gave overview of the whole conference. Said he liked: dietary
intervention, intense IV therapy(vitC, minerals, glutathione,DMPS,
ca EDTA), secretin Ivs, IVIG, HBOT, behavioral, sensory and auditory
integration. He said he liked to use melatonin for the activation of
the SOD enzyme (?) and catalase. He said it was an antioxidant to
protect the brain cells and assist in chelation. For HBOT he said
under four years old could do 1.3 with oxygen or older kids could do
1.5 with oxygen and it be more beneficial.
I hope this helps. I missed Doreen Granpeesheh ,Andrew Levison,
Stegfanie Cave and Barbara Lo Fisher. It was tough having to choose
between parent session and science session; but I liked that you
could float between both tracks. It was just an amazing, life
changing experience. Everyone from physicians, researchers, vendors
and parents were just so giving of their time and expertise. I left
with the feeling that we don't know everything that we need to know
to help our kids, but at least we are all in this together.
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Here's what I've cobbled together on this. I was at DAN!, and TD
was mentioned but sort of glossed over in the actual session. I did
not hear the Q & A, but during the talk, Dr. Green, Dr. Cave, and
Dr. McCandless all said that suppository and IV methods are very
effective. Dr. Cave said that she uses TD, but that she does not
see urine metal pulls with it, so she always uses oral for testing.
Dr. McCandless and Dr. Cave said that they are a little wary of
suppositories only because of the method of administration (i.e.
psychological implications for the child). Dr. McCandless did say
that it is a great choice for someone who has a child still in
diapers (umm, that could be any age for our kids, but I think I can
back into what she is saying -- a child who won't be scarred
emotionally from it). I also heard a bit of gossip that she was
going to reconsider that position since the suppository is showing
to be more effective.
Dr. Cave and Dr. McCandless did say that they USE TD chelators (I
think mainly DMSA), but Dr. Cave only uses it for kids who will not
tolerate oral DMSA because of gut or taste sensitivity.
I also heard a bit of gossip that said that Dr. Sidney Baker is NOT
using TD in his practice -- only IV and suppository (again, heard
this third hand through someone who talked to a clinician who went
to the clinician's round table session), so take that bit of info
with a grain of salt.
The other docs that I mentioned where ones that I personally heard.
I talked with Dr. Bradstreet afterwards as well.
After the conference, I had an online discussion with Adam Israel at
Lee Silsby about this. He formulated the TD-DMSA for Lee Silsby and
has personally used it over a 4 month period to chelate himself. He
stated that his product eliminates through the bile (stool) more so
than the urine. It's strange since oral, IV, and suppository forms
eliminate through the urine, but Adam and others have stated that
the see more elimination through stool than through urine. Dr.
Bradstreet postulated that it could actually be more the glutathione
precursors in the formulations that cause the metal pulls than the
actual chelator (since they are eliminating in stool).
At any rate, Dr. Bradstreet, who is a toxicologist, does not examine
stool for metals testing because of the difficulty in interpreting
what is coming out of the organs/skeleton vs what is coming out of
ingested, unabsorbed metals from food (I heard this answer
personally). That still probably doesn't entirely invalidate stool
testing since, if you can afford to do it often enough, it probably
shows trends, but he does make an interesting point.
My take on it is that I will probably use the suppository method
becuase of the following:
1. I heard 4 docs say (Green, Cave, McCandless, Bradstreet) that it
works!
2. It's once a week administration instead of 3 days a week and can
be done (maybe) when he's asleep.
3. It costs way less than TD -- the suppositories are $5 -$10 each
depending on type of chelator, amount, etc. Dr. Bradstreet is using
2mg/kg DMPS. He also uses EDTA suppositories, but he states that
they are a bit less effective that IV EDTA. I think he said that
the concentration was 10mg/kg CaEDTA, but I'm not 100% sure on that.
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I attended and have just a couple of extra things to add:
(1) Dr. Sydney Baker, M.D. and Dr. Jon Pangborn PhD wrote a detail book and
they were selling it during the conference. It is a very comprehensive book
that details how to supplement your child all the way through detox. It is
called "Autism, Effective Biomedical Treatments (Have We Done Everything We
Can For This Child? Individuality In An Epidemic) ". I heard from several
people that it was an excellent book. I bought it but haven't read it. If
you need an updated biomedical book, try this one. I believe you can buy it
at http://www.autismwebsite.com/ari/pub/pubs.htm.
(2) New diet: Low Oxalate Diet - it seems to be helping children that do not
respond to GF/CF or SDC. Buy this book if interested:
http://www.vulvarpainfoundation.org/vpfcookbook.htm. Ms. Susan Owens, RN,
started working with ASD children after she learned about the improvement
this diet made on women with vulvar pain, and found it to be very helpful
for children on the spectrum. It was presented during the evening Q&A
session, so not much was actually presented to the entire audience. But if
your child does not respond to the GF/CF, the encourage to do a GF/CF/Low
Oxalate diet.
(3) They had a number of presentations on the biology of the gut and the
importance of good nutrition and diet. Showed dramatic improvement in the
lives of several children after getting them on the Specific Carbohydrate
Diet. They did say that it takes about 3 to 6 months to get children and
parents used to it. They encouraged a Gluten Free/Milk Free SCD. The
reason is because some of our kids guts, besides not being able to digest
gluten and casein, they cannot convert Di-saccharide and Poly-saccharide
molecules (complex carbs) into Mono-saccharide (single molecule). So they
explained that our kids' gut problem is quite complex; not just leaky guts
but they have complex enzyme malfunction. They encouraged us to purchase
the book "Breaking the Vicious Cycle" by Elaine Gottschall
(www.breakingthevicioscycle.info <http://www.breakingthevicioscycle.info/>
). This diet is also Dr. Baker's favorite.
(4) Methylation: In addition to what Tricia wrote, they covered DNA
Methylation. DNA Methylation is important to turn on and off the genes in
our bodies and in viruses. In order for that to happen, the SAM/SAH ration
must be optimal. Apparently, they learned that if the methylation pathway
is impaired in the SAH / Adenosine area, there is not enough SAM, which in
turn does not produce enough Homocysteine and finally the levels of
glutathione is down. In a study, they learned that most ASD kids have high
adenosine. By giving them acyclovir (anti-viral), they were able to lower
the amount of adenosine and lower SAH and increase SAM. This helps with the
proper DNA methylation. This is a very important finding. This was
presented by Dr. Baker and Dr. Jill James. Dr. James explained that they
learned that if SAH is high, those children do not tolerate Methyl B12 well
because they don't have enough SAM to bind with the Methyl molecules and it
causes to have an overflow. But this does not necessarily mean that the
child is an overmethylator. So if we can lower SAH, M-B12 should start to
work properly.
(5) Dr. Usman and Dr. Bradstreet talked about excitotoxins in our kids brain
and that we need to lower the amount of glutamate that they eat/drink. High
levels of glutamate can cause an excess of excitatory neurotransmission in
the brain and this may lead to neuronal death which leads to chronic
inflammation in the brain. Sources of glutamate include MSG, Hydrolyzed
Protein, Modified Food Starch, Natural Flavors, Peas, Mushrooms, Tomatoes,
Parmesan Cheese, Protein. Definitely avoid MSG and Aspartame.
Anti-Glutamates include pycnogenol, Rosemary, Chamomile, Lemon Balm, GABA,
L-Theanine, Namenda (drug) if necessary.
(6) Chelation Panel: besides what Tricia mentioned, they also said that make
sure if you are using EDTA, that you must use the Calcium-EDTA, not
Sodium-EDTA (that is the type that cause the death of the 5-year old child
last year). That is what is used for heart treatment. For metal, use
Ca-EDTA. Also, regarding crossing the BBB, although DMSA does not cross it,
they feel that as the body moves metals out, the metals redistribute and
start to come down from the brain. That is why they are not concerned that
it does not cross the BBB. They all seem very comfortable with IV
chelation. Once a week, sometimes once every 2 weeks depending on the
families. They combine chelators but not at the same time. One week they
might do IV DMPS and the other week IV Ca-EDTA. Everyone (except Dr.
Bradstreet) feels that suppositories are traumatic to children so they don't
use them much. Oral causes to many gut issues. TD does not seem to pull as
much as IV, but they did not discourage it like Bradstreet did.
(7) Virus: They talked about Valtrex and its ability to do two things: lower
the adenosine levels which in turn lowers SAH needed to be able to do proper
DNA Methylation and also works as an antiviral. Valtrex crosses the BBB
which is good for both functions just mentioned. It is pretty safe. Dr.
McCandless used to require her viral screening test before prescribing it,
but she is now prescribing it without because of the added benefits. Even
if the child does not have herpes viruses, Valtrex can help with the
methylation pathway. She also mentioned that Diflucan is a yeast killer
that is thought to lower testosterone levels.
Great conference.
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