If I had to do it all again...
What would I do differently?
Return To HOME
This section is a living document that I will update as I
move forward in my journey through life with an autistic child. I encourage everyone to read my
four books (available on this website) to understand exactly
what I did do, the conclusions I came to, the information I provide with
More On Zachary's Diet,
and the Journal. That way, you'll have a
really good understanding of where I'm at as I post this and why I would make
these changes if I was given the opportunity to "start over" in recovering my
son from the clutches of autism.
|When I would have
|| What I would
have done... if only I had known...
taken prenatal vitamins loaded with iron... and been more informed of these
Get Informed About The Dangers Of Prenatal Vitamins, Iron Fortified Baby
Foods and Formulas... Poison In A Bottle!
Before using any oils, make sure
you investigate possible effects for things such as epilepsy because it is
well known that persons with autism, Alz. and schizophrenia experience
|Oils Can Make Epilepsy Worse By
Lowering Seizure Threshold!
These include Borage, Evening Primrose, etc.
I know many parents give oils to their children... especially
flaxseed... or cod liver oil...
I gave Zachary both borage and flaxseed oil in the past... now, I will
have to reconsider this. This is another one of those "dilemmas"
since I know that the body benefits in many ways from these oils... yet, I
certainly do not want to risk increasing the possibility of seizures - hence
- brain damage - in my son. Another difficult issue for all
parents indeed! I will at the very minimum significantly reduce the
amount of borage I have given to Zachary - especially since I know many
children with autism develop seizures at puberty!
The concern I have with all this is that when studies are done, we
really do not know "other supplements" or "meds" someone may have been
taking, or for example, if someone had a B6 deficiency (something that is
known to cause or magnify seizures). Thus, I have "mixed
feelings" with this whole issue - especially when I see posts by parents on
message boards that state children were helped with things like flaxseed or
primrose oil when it came to seizures. But, again, there was no way to
know "the rest of the story"... i.e., the meds, etc. a child could have been
on that may have also contributed to the issues with seizures.
I guess right now, I'm at a point of "not knowing what to do" on this
one... and unfortunately, I suspect this will very much be another one of
those "trial and error things". Regardless, this was certainly an issue
to "keep in mind" or at least be aware of!
Update: Dec. 2005... Well, I've
decided to keep giving Zachary flaxseed oil... so far so good.
He also gets his vitamin B (which I know is critical in helping to
reduce/minimize seizure activity if it exists). So far...
the flaxseed oil does not seem to be a problem... and so... we'll keep using
it for now.
(possible concerns with flaxseed oil)
||I found this interesting link on
epilepsy... and what supplements are used to help with this condition...
amazingly, Zachary is already getting most of these...
||Considered doing CHELATION - a process whereby
heavy metals are extracted from the body. As I near completion of book
3, having read so much more about the effects on the body of mercury and so
many other metals, I certainly wish this was an option I had looked at years
ago. There are various protocols for chelation. From
what I have read, if I do go ahead with this, I plan on following the Andy
Cutler protocol as opposed to the DAN! protocol. Although more
difficult to do (involves getting up during the night), parents appear to be
saying this protocol may be "easier" on the child's system.
Persons interested in this procedure should see what other parents are
saying by joining the Yahoo mercury and autism discussion board. You
can also obtain Dr. Cutler's book on mercury and detoxification via this
Go to http://groups.yahoo.com/
and type in "autism mercury" as the search
criteria in order to access this group - certainly one of the best relating
to matters of autism!
Not many doctors are experienced in this procedure... at least
certainly not where I live. My family is now
seriously considering moving - for several reasons - one of them being
access to a doctor for Zachary who could help with chelation. I
certainly hope to be able to do this in the next year because I know the
clock certainly is ticking. The earlier chelation is done, the
greater the benefits appear to be - at least according to parents on message
boards relating to this topic. Zachary will soon be six. I
wish I would have known more about chelation and looked into this a lot more
3 years ago. If there is one thing I regret not having looked into
earlier - this is it!
The more I read about issues of mercury, aluminum, iron, etc., the
more I am leaning toward doing this.
For more on this, please see my link entitled: New
Options For The Autistic.
IRON OVERLOAD - A POTENTIALLY HUGE PROBLEM!!!
KIDS WHO SUFFER FROM AUTISM ARE OFTEN DIAGNOSED AS BEING ANEMIC... AND
SO THEY ARE PLACED ON IRON SUPPLEMENTS... AND IT APPEARS FROM RESEARCH
PROVIDED BELOW THAT THIS IS EXACTLY WHAT THEY DON'T NEED - GIVING THEM MORE
IRON MAY ONLY MAKE MATTERS WORSE!!
ANEMIA IN AUTISM CAN RESULT FROM IRON OVERLOAD -
THAT MEANS THEY ALREADY HAVE TOO MUCH IRON!!!
AS SUCH, GIVING THEM IRON SUPPLEMENTS CAN BE
VERY, VERY DANGEROUS!!!
I URGE ALL PARENTS TO READ THE INFORMATION ON IRON PROVIDED BELOW - AS
WELL AS IN BOOK 3 - WHEN POSTED. TRULY EYE OPENERS!
(explains iron overload and anemia)
done a great deal of research lately and I have serious concerns about iron
intake for Zachary. Research indicates
autistic children and those with Alzheimer's usually have iron
overload... and their bodies do not seem to be able to get rid of it
properly. I encourage all parents to read the
following critical information on iron.
Excess iron causes damage in the brain, heart,
kidneys, liver and pancreas... and as such, can lead to a whole new set of
problems. As such, I will be limiting Zachary's
intake of iron. I am no longer going to provide him with iron
fortified foods (i.e., cereals, etc.) and will give him vitamins that do NOT
contain iron - even if that means going to individual vitamins.
I'm not concerned about Zachary not getting enough iron since he gets
plenty through his many rice products. As such, I don't see a need to
supplement with MORE iron.
I can not help but wonder... would a blood test
catch iron overload if excess iron accumulates in the brain, liver,
pancreas, etc.... or would it miss it and show a possible iron deficiency?
Are lactoferrin levels a better indicator? I don't know!
These are some of the articles I have read of this subject. There
are articles here for both autism and Alzheimer's. Please take the
time to read this CRITICAL information.
I switched to a multi-vitamin when I put Zachary on
enzymes (Zachary was put on enzymes in Feb 2002). The
multivitamins were started shortly after the enzymes... so, Zachary has been
getting extra iron for about 9 months. :o(
The Kirkman products Zachary used to take (did SNT liquid first, then powder) did not have iron... but
he hated the taste and it was always a battle getting him to take those
vitamins. I will try the Kirkman Everyday but I need to review
all supplements again since Kirkman Everyday provides in it certain things I
may not need to supplement additionally (i.e., selenium... which, of course,
I had just purchased... ). Given Zachary is on enzymes, I prefer to
stay with something less potent than the SNT. Enzymes allow for
better absorption and many parents on discussion boards felt mega vitamin
doses made their children too hyper...so, that's why I'll be going with an
"in between" product.
I have read a great deal about autism in the last year.
Unfortunately, I have found that in too many cases, unless you know what you
are looking for, it is easy to overlook something. Even the
Kirkman Labs documentation (Guide to Intestinal Health and their product
catalog) speak very little about iron at all... there is brief mention of
iron and of lactoferrin, but certainly not enough that I would ever have
suspected this to be such a potentially huge issue in these children.
I'm not saying that as a "fault" in Kirkman's literature, but rather, as a
warning to parents to ALWAYS do your homework. Kirkman's
products, for the most part, do not appear to have iron. So, I
suspect they are aware of the issue, however, in failing to specifically
mention iron overload as an issue for the autistic, I, as a parent, would
probably not notice this issue or the fact that iron is not in their
supplements. Thus, in reading labels, for the parent of
the autistic, it is in my opinion, no longer an issue of just "what is
listed on the label", but now, also an issue of "what's missing and why is
it missing'. In the case of iron for example, there appears to
be a good reason as to why it is missing from the supplements made by
most doctors would probably not suspect "iron overload" as an issue for the
autistic either. Society has come to associate iron with "strength"...
everything seems to be "iron fortified" - including prenatal vitamins and
infant formulas and as such, you probably would not suspect iron overload
could be an issue... and, that, in my humble opinion, would be a very bad
assumption to make given the above references!
I suppose I could beat myself up over this mistake, but,
I fear it is one perhaps being made by many "experts" too! :o(
Unfortunately, with autism, parents are not the only ones "learning as they
go along"... the scientific community is still very much at that stage also!
To solve this puzzle will require cross-disciplinary
teams of immunologists, gastrointestinal specialists, neurologists,
behaviorists, and many others. The horrible thing is that
everyone seems to look at their little piece of the puzzle... studying a
specific thing or two - rather than looking at the entire individual and how
all of this is inter-related. That, in my opinion, is a huge problem
with science and its constant need to isolate only one variable.
In doing so, when that one variable indicates any type of link, everyone
jumps on the bandwagon and believes "that is it"... and all the other issues
that play into the puzzle fall to the wayside. As such, just as
the autistic child, in focusing on the "parts", we, too, fail to see "the
||By the end of this month, Zachary's list of supplements
will be as follows:
From Kirkman Labs at
Buffered Vitamin C, Magnesium, Milk Thistle, Selenium
(may remove selenium now based on comments posted
12-08-02 above), Colostrum,
Glutathione, Acidophillus, Multiple Mineral supplement, Zinc
supplement. I may also switch to their CoQ10 tablet - I currently use
a softgel product from a health food store and find it hard to give Zachary.
Milk Thistle and CoQ10, I recently added. Colostrum, and glutathione I will be adding soon.
Rhino Magnesium + Calcium chewable from
enzymes as follows:
1) AFT Peptizye to help with breakdown of
casein/gluten (Zachary is cfgf but he still gets trace amounts I'm sure
given gluten is everywhere).
2) HN Zyme Prime to help with breakdown of food
proteins, carbohydrates, triglycerides and
3) No Fenol to help with breakdown of phenolic
http://www.carn-aware.com, Carn-Aware for
nervous system support. I just recently added this one and only
give Zachary one per day. Information on this product is available on
the referenced website.
From local health food store: GRAPEfruit
seed extract, Borage Oil and Flaxseed Oil.
I also give Zachary epsom salt baths or rub
epsom salt cream on him periodically.
I will also be looking into apolactoferrin and a
new cfgf multivitamin that is low in iron. I currently use
Freeda Children's Chewable multivitamins but the iron content is rather high
and given what I know understand about iron overload in the autistic, I'm
going to see if I can find a multivitamin that is lower in iron content.
Iron absorption is increased by Vitamin C too, so, I will give those as far
apart as possible. If I have to, I may go to individual vitamin
supplements instead of a multivitamin in order to avoid the extra iron
||I would have given Zachary more vitamin C to help with
detoxification issues and would have reduced iron rich foods - autistic kids
are known to suffer from iron overload. Apolactoferrin is a
supplement I am considering adding also. Lactoferrin binds to
iron to rid it from the body... apolactoferrin is a supplement that does
this but without adding extra iron. For more on this, read items
posted under Immune System in my
Updates section. A must read
for all parents. Glutathione, selenium, CoQ10, and colostrom (all from
Kirkman labs) are other products I am considering adding to Zachary's list
of supplements based on research I have done. Glutathione helps
support liver detox functions. Selenium helps the immune
system fight heavy metals including mercury, lead, aluminum and cadmium.
CoQ10 helps support mitochondria function (autistic children have abnormal
mitochondria functioning in the brain). Colostrom also helps
boost the immune system.
||I would have put Zachary on a mineral supplement and on
milk thistle to help support liver detox functions. I recently
added both of these to Zachary's supplements.
||I would have paid a lot more attention to my son's
behaviors and actually "looked closely" at what he was doing and tried to
figure it out sooner.
I would have researched brain structure and function on my own a lot
sooner. As clearly shown in book 2, based on brain structure and
function alone, you can explain a great deal in the autistic child if you
assume one thing: limited communication among the various
lobes/regions of the brain. Given the University of Calgary experiment
showing neural degeneration as a result of low level mercury exposure, it
certainly all makes sense - amazingly so! This experiment showed
neurons shriveling up when exposed to mercury... literally, half the neuron
disappeared when exposed to mercury. I encourage everyone to
view this video.
No one would ever want to admit such devastation is possible... yet,
to be able to so easily explain so much in autism if you make this one
assumption, clearly indicates that this is a theory that merits further
investigation. I encourage all parents to read book 2 and the
updates (top right hand on main web page) I provided as well - truly eye
|I would have used a cod liver oil (CLO) supplement and rubbed it on my
child's skin as s/he slept... provided that was a very safe brand. Trying to make Zachary take this
stuff orally was too difficult... yet, absorption through the skin works
just as well in terms of providing the essential fatty acids he needed.
I just encouraged parents to make sure that the CLO manufacturer tested for
heavy metal content so that heavy metals were not passing via the skin. That is the one critical
thing about this one!
For our family, CLO is OUT!!! In August
of 2002, Zachary had an incredible reaction to what I believe was the cod
liver oil. I no longer give Zachary any cod liver oil.
I now only give him EFA (essential fatty acids) from Flaxseed oil, and
Borage Oil. The manufacturer for the CLO I used to
use stated that it had been tested for heavy metal contamination.
Zachary's reaction, however, I simply can no longer take a chance
with CLO. I purchased flax seed oil at a
local health food store (made sure it was as pure as possible) and just
rub that on Zachary's skin before he goes to bed
at night since it is readily absorbed through the skin. That
works best for us. I also give him Borage oil almost every day.
I knew many parents on discussion boards stated that Nordic Naturals made
a good CLO product for those still interested in that....
http://www.nordicnaturals.com/ , but, again, for us CLO was out!
Finally, I made my own epsom salt cream and
rub that on his skin during the day. I purchased an aloe vera
cream at the local health food store (as pure as I could get). I
then took about 3 tablespoons of water... heated it in the microwave and
dissolved about 4 tablespoons of epsom salts in the water. I
then mixed that with the lotion (about 4 oz) - I use a hypo-allergenic
lotion made by Jason Natural Cosmetics. I rub that on Zachary
1-2 times a day to provide to the magnesium sulfate his body needs.
I usually give him 2 or 3 epsom salt baths a week also (for 20 minutes or
||I would make my own epsom salt cream instead of using epsom
salt baths... a lot less expensive and just as effective. You
can get recipes for this on parent discussion boards for enzymes and/or
mercury. Basically, you take maybe 2 tablespoons of filtered water,
heat that up in the microwave and then dilute a few (i.e. 3) tablespoons of
epsom salts in the water once it it very hot. You then take that
and add it to a hypoallergenic lotion - I use a product called Natural 70%
Aloe Vera Natural All-Over Body Lotion by Jason Natural Cosmetics.
I bought it at my local health food store. I try to apply this
at least once a day if not more... depends also on whether or not Zachary
gets an epsom salt bath that day.
I had to find a small container -
about 4 oz container (I used an old container from one of the Kirkman
products I had once I had finished using the product) to do this. I
found that this "cream" tended to separate because of the salts... but, I
still used it even though it was very liquid... its the "salts" Zachary
needs and as long as those were in the liquid, I figured it was ok - didn't
look pretty but seemed to work fine anyway. But, again, I just
make this in very small batches.
||I would have given a cfgf calcium + magnesium supplement
always together. I did not realize until recently that calcium
should always be given with magnesium.
||I would have used much more in terms of probiotics ...
to help restore healthy bacteria in the intestinal wall.
||I would have used a cfgf multivitamin instead of "mega
vitamins" (provided my son was on enzymes) and would not have used TMG since I believe
that once on enzymes, TMG may have actually inhibited the development of
conversation. I have no proof of this...
just a theory. My son began to develop/hold a conversation after
only 3 days of taking him off TMG. I do believe it may have
helped in the initial development of language, however, once on enzymes
(something I did after only 2 years), the TMG seemed to have a language
inhibiting effect in my son. Again, this is
based on ONE observation only... what I saw in
my own son. Zachary had been on TMG for just over 2 years.
He showed noticeable conversation after just 3 days of no longer being on
it. This was the ONLY change I had made to his diet/supplements.
Many others in my family noticed the change as well... that's how obvious it
Given what I now understand of iron overload in the autistic -
I would not have provided iron supplementation to Zachary... not even in a
||I would have joined a couple of parent discussion groups -
especially the enzyme board - to see what other parents are saying about a
multitude of topics.
||I would have put my son on enzymes and grapefruit
seed extract, GFSE, since the GFSE is fairly cheap and appears
much better in controlling Zachary's yeast issues. See
Options For The Autistic.
still has issues with yeast... for the autistic, it is truly the "never
ending battle". The GFSE does help keep yeast in check but I may
end up supplementing with cranberry extract again or another product from
Kirkman Labs. I may also just give GFSE more often during the
day... something I have not been very good at doing. I really don't
want to go to a prescription item - especially not for any long-term use...
and yeast overgrowth is a constantly recurring problem in the autistic.
There are many battles that are extremely difficult to overcome in autism...
and this is certainly one of them.
Return To HOME