If I had to do it all again...  What would I do differently?

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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.

Date Posted

Date Updated

When I would have done it?  What I would have done... if only I had known...
May 2005 Right away Not taken prenatal vitamins loaded with iron... and been more informed of these issues!

Get Informed About The Dangers Of Prenatal Vitamins, Iron Fortified Baby Foods and Formulas... Poison In A Bottle!

 

10-22-03 Warning -

   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 seizures!

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.

  http://www.epilepsy.org.uk/info/epo.html (evening primrose)

http://www.pdrhealth.com/drug_info/nmdrugprofiles/nutsupdrugs/bor_0039.shtml (borage)

http://www.sbrc.ca/ncarm/PDF/Borage%20Oil%20Short%20Report.pdf     (borage)

http://www.mercola.com/2000/jan/30/omega_3_recommendations.htm (possible concerns with flaxseed oil)

10-19-03   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...

http://www.go-symmetry.com/health/epilepsy.htm

 

05-12-03 Immediately 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 group.  

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.

12-08-02 IMMEDIATELY  

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!

http://www.ironoverload.org/anemia.htm  (explains iron overload and anemia)

I've 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.

http://www.childscreen.org/Iron%20Overload%20and%20Autism.htm

http://hemochromatose.tripod.com/0/connor.htm

http://www.ohsu.edu/news/111301alzheimers.html

http://www.lef.org/magazine/mag99/mar99_medup.html#3

http://munstermom.tripod.com/IsADironoverloadofthebrain.htm

http://www.lef.org/magazine/mag2000/oct2000_report_lactoferrin.html

http://www.qimr.edu.au/research/labs/grega/

http://spinwarp.ucsd.edu/NeuroWeb/Text/br-500.htm

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 Kirkman Labs.

Unfortunately, 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 whole"!  :o(

 

12-04-02 RECAP By the end of this month, Zachary's list of supplements will be as follows:

From Kirkman Labs at http://www.Kirkmanlabs.com

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 http://www.nutritionnow.com

From http://www.houstonni.com, digestive 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 foods

From 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 content. 

 

12-04-02 Right away 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.
10-18-02 Right away 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.
07-15-02

12-04-02

Right away 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 openers!

07-15-02

12-05-02

Right away

NO MORE!!!

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! 

CRITICAL UPDATE:   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.   Given 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 so).

07-15-02

05-12-03

Right away 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.

07-15-02 Right away 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.
07-15-02 Right away I would have used much more in terms of probiotics ... to help restore healthy bacteria in the intestinal wall.  
07-15-02

12-07-02

Right away 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 was.

Given what I now understand of iron overload in the autistic - I would not have provided iron supplementation to Zachary... not even in a multi-vitamin!  

 

07-15-02 Right away 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.
07-15-02

12-07-02

Right away 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 New Options For The Autistic.

Zachary 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.

 

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