First Steps For Parents! What Can Be Done To Actually Help These Children Today!
Digestive Enzymes, Chelation, Grapefruit Seed Extract
First Steps For Parents!
What Can Be Done To Actually Help These Children Today?
This next section was over 50 pages long. It included many valuable exercises I did at home with my own son and many suggestions as to how parents could actually help their children. I encouraged all parents and researchers to read this section carefully… but, even after this section, the best was yet to come in terms of truly understanding the autistic mind – so, indeed, my most valuable insights were still ahead, but I wanted readers to get through these exercises first because, they too, really told the story of the autistic mind and how it worked! As such, I felt this section belonged here, before the “other good stuff”, because in order to understand the final insights as they related to the autistic mind, I wanted readers to see, in pictures, just how Zachary dealt with so many things as a result of his inability to properly integrate the parts into the whole! Although this section was over 50 pages long, it should go fairly fast since there were a lot of pictures used to “make the point”! After reading this section, I believed, readers would have a much, much better appreciation for what was yet to come, and I believed everyone – from parents to neurologists – would find the information in these exercises quite fascinating (I know I did)!
Throughout these materials, I had provided ways I felt my own son had been helped in many specific areas. The puzzle of autism was indeed a huge one. I had come to understand much of it, but, the more I learned, the more I saw how there was still, yet, so much more to learn... especially in terms of how the senses, the digestive and immune system were impacted - in addition to overall brain functioning.
We knew a great deal more than we did only a few short years ago, especially in the area of diet and supplements. As I continued my quest into understanding the missing pieces, however, certain things came to mind that I wanted to share with all readers.
The information below, provided for parents great resources in terms of places to turn to when you simply had no idea as to where to even start as well as great exercises any parent could do at home!
Many parents, including myself, saw good results with the use of digestive enzymes in many areas of their children’s lives. There were definitely side effects that parents need to be aware of – and these could be easily dealt with - it was just best to be aware of them from the start. As such, I encouraged all parents to read the documentation provided by the parent discussion group moderator for the Yahoo group: enzymes and autism. Parents can join this group by going to: http://groups.yahoo.com/group/enzymesandautism/. There, you could find a wealth of information on this issue, and also, discuss the use of enzymes with parents who actually had been using them with their children, in some cases, up to 2 years already!
The moderator for this discussion group, Karen DeFelice, had just completed a book on the issue of digestive enzymes and autistic children. This book was entitled Enzymes For Autism And Other Neurological Conditions (ISBN: 0972591877). A brief description of the books contents was provided below:
This book is a very solid foundation for enzyme therapy in neurological conditions that is very practical and applicable. Enzyme therapy is the use of digestive proteins to break down food, and is an emerging treatment for people with autism spectrum conditions. Users report significant improvements in eye contact, language, humour, food tolerance, and socialization. Drawing on research and trials by a range of families, this work deals with all the information on enzymes that parents need – how enzymes work, who can benefit from enzyme therapy, and what results to expect. It also gives tried and tested practical advice on buying and introducing the right kind of enzymes and shows how they can be combined with other approaches and therapies.
The files available online on at the above-mentioned enzymes and autism discussion board were also an invaluable resource for parents of the autistic. Parents who had specific questions on enzymes or any other topic related to autism could also discuss specific issues with other parents who were using digestive enzymes for their children. This was by far one of the most informative parent discussion groups and one of the parent’s best resources when it came to many, many issues.
The simple fact was that although doctors had the medical training, it was the parents who had the 24 hour, 7 day a week living lab and as such, parents were an invaluable source of information in terms of the various options for these children. Parents included doctors, therapists, teachers, chemists, biochemists, psychologists, lawyers, and, last but certainly not least, mothers too, who so often held within them key observations I knew would be critical to unlocking this puzzle we all knew as “autism”.
You did not need a prescription for digestive enzymes...they had been around for decades and were classified as a "food" by the FDA. Many children were improving greatly according to parents (a few even returning to diets that included some casein and gluten). In addition to products specifically for the breakdown of casein and gluten, these enzymes also helped in the breakdown of phenols, carbohydrates, triglycerides, soy and vegetables. They also seemed to help somewhat with yeast issues.
I used enzymes made by Houston Nutraceuticals, Inc. (http://www.houstonni.com, (866-757-8627). Some parents used Kirkman Labs products (http://www.Kirkmanlabs.com, 800-245-8282), too – some alternated between companies. It was really a matter of preference in terms of which company parents went with.
Enzyme products available through Houston Nutraceuticals, Inc. included the following:
1) Peptizyde for breakdown of proteins found in dairy, wheat, soy, meats and vegetables, 2) AFP Peptizyde (same as Peptizyde only better if the child could not tolerate phenols), 3) HN Zyme Prime for breakdown of proteins, carbohydrates, and triglycerides, and 4)No Fenol for breakdown of foods high in phenols.
These products could be further investigated by going to: http://www.houstonni.com/ .
I personally started with Peptizyde, HN Zyme Prime and No Fenol but decided to later “switch out” Peptizyde for AFP Peptizyde… and keep the other two as well. Zachary had done very well while on these enzymes.
There were some side effects (diarrhea due to yeast die off), etc. as a result of using these products. That could last about 2 weeks… but, after that, things got much, much better. Parents who were considering enzymes should read the files on the website below for the enzymes and autism discussion board. These files had a wealth of valuable information all parents should be aware of prior to starting enzyme use (in terms of how to get started and what to expect). Karen DeFelice’s book, as mentioned above, was also an excellent reference for those who did not have Internet access. Karen DeFelice’s book basically summarized the information in these files available online.
Yahoo Groups had a group called http://groups.yahoo.com/group/enzymesandautism/. I recommend to all parents of autistic children that they join this discussion group and see what other parents were saying about these life changing products...you would also learn a ton of stuff about other autism related issues as well on this discussion board! Very, very informative!
Most parents knew their children's digestive systems were not working properly, these enzymes helped the digestive system break down things it could not break down on its own.
Foods high in phenols include tomatoes, apples, bananas, red grapes/raisins, chocolate.
Another excellent discussion group was: http://groups.yahoo.com/group/Autism-Mercury/. This group discussed issues related to autism, mercury (a preservative found in many childhood vaccinations that was slowly being “phased out” – although many children had already been exposed to this very toxic substance), and other heavy metals and/or toxins found in all vaccinations (for either children and/or adults) and what parents could do in terms of testing and options (i.e., chelation) to help their child.
A book by Andrew Cutler, PhD, on the effects of mercury and the total havoc that could be done to the human body by this substance found in childhood and many adult vaccinations and in mercury fillings was: Amalgam Illness: Diagnosis and Treatment (ISBN: 0-9676168-0-8). This book could be purchased via Andrew Cutler’s website: http://www.noamalgam.com/#howtoorder.
Chelation was a process whereby heavy metals (such as mercury, aluminum and other substances found in vaccinations) were extracted from the body. I cautioned parents in that chelation was a serious procedure and should only be undertaken under the care of a knowledgeable physician. Many parents reported great results through chelation, however, if not done properly and under the care of an informed physician, a physician who understood the issues behind chelation and who had assisted many parents in this process, then there could be serious consequences, including liver and kidney damage. Andrew Cutler’s book, was a great place to start in terms of understanding the issues surrounding this very serious issue!
Many doctors were “aware” of chelation, but very few seemed to truly have any real experience with it – and that seemed especially true as it related to chelating the autistic! Thus, for parents interested in further investigation this option, your best bet was really to start by reading the files on the autism and mercury message board and by reading what “other parents” had to say in terms of what this procedure had done for their children. Parents could learn more about chelation by joining this parent discussion group – truly, another very informative resource for any parent of an autistic child: http://groups.yahoo.com/search?query=autism+mercury.
Many parents were currently in the process of undergoing this option with their children. These parents, many of them on the autism and mercury discussion board, were more than willing to help other parents interested in this procedure to find doctors who were knowledgeable in this very serious but potentially very beneficial procedure.
I personally, had not done any chelation, yet. This was something still "on radar" for me in terms of "another option" to consider if I found Zachary's progress had "stalled out". For now, however, that was not the case, and as such, chelation was not something I anticipated doing - at least not in the very near future (in the next year). I may consider it after that.
Chelation, a process whereby heavy metals were removed from the body, should never be done on someone who has silver/mercury fillings... that could make things worse than they already were by actually pulling mercury out of the fillings and into the system!
Chelation should always be done under the care of a doctor knowledgeable in chelation issues since chelation could result in serious liver and kidney damage if not done properly. Parents going through chelation could provide valuable insight, but, again, do your homework.
There were risks associated with chelation – but, there were also risks associated with leaving these metals in your child’s body/brain! Only you, as the parent, could be responsible for your child's care and do what was in his best interest.
For more information on these topics: enzymes, mercury, etc., also see my the following on my website: New Options For The Autistic and Parent Nuggets©. (Parent Nuggetsã was a collation of valuable information for parents in “nuggets” – available on my website.
I cautioned all parents that Internet information was not always accurate, therefore, please do your homework and research these issues for yourself before doing anything... and consult your family physician as well - this was particularly important for anyone considering chelation!
As with everything, I provided this for information purposes only. I was not a doctor and could not even begin to advise you in what was best for your child. I knew my child, his medical history, etc., and as such, my son, Zachary was the only child for whom I could make any decisions and/or recommendations!
A couple of excellent books for parents who wanted to look further into issues of mercury, enzymes, etc. were the following:
1. Amalgam Illness: Diagnosis and Treatment, by Andrew Cutler
2. Enzymes For Autism And Other Neurological Conditions, by Karen DeFelice.
These books, together, would give all parents a very, very good understanding many critical issues behind autism.
There indeed was much more information available to parents of the autistic today. However, some information, although quite valuable, I found was not at all available in the United States.
For example, we did know that for phenols seemed to have an impact on autistic children. As I researched the issue of phenols, I came across a book written by a woman in Australia. The book was not available in the US, so, I ordered it from Australia.
The information for ordering this book was provided below.
Duncan, Mary. 1995. Boron, Phenols and Health: Clues to the Mysteries of ADD, Alzheimer’s, Asthma. Alkimos, Australia. Park Printing Company. (ISBN 0-646-26612-8)
*This book (Boron, Phenols and Health: Clues to the Mysteries of ADD, Alzheimer’s, Asthma. ) was not available in the US. To obtain it, you need to send $18.00 US to: Alkimos Australia, 26 Trian Road, Carabooda, Western Australia, Australia 6033. I wanted to warn all readers that you had to have a pretty good understanding of chemistry to understand this information... and that was not something I had. Although I was only able to get some “bits and pieces” from this book, the vast amount of research studies behind it seemed to indicate a link to boron somehow. This book had close to 40 pages of references. Much of what I did find on boron stated that it was something we knew very little about...except that it was necessary for proper brain function and alertness. Yet no “daily value” or “amount” needed had been determined and that just made me wonder all the more!
Given that most foods high in boron were the same foods considered high in phenols, and that "phenols" had been identified as a problem area for autistic children, I truly wondered if the "problem" was with phenols or with boron! No other parent of an autistic child I had personally talked to could even begin to give me answers to how boron may play a role in autism. In my opinion, this was certainly an area that necessitated much greater investigation, especially given the fact that this book from Australia seemed to tie boron to "Attention Deficit Disorder" (considered to be on the autism spectrum)! Therefore, I raised this concern here, because I truly did believe this was something that warranted further investigation in the near future, especially given the fact that many parents had stated on discussion boards that their children had abnormal boron levels!
There was, obviously, still a great need for research in the area of actual physical damage to the senses - the eyes, the ears, the nerve endings involved in the sense of touch and all those things involved in the sense of taste and also smell.
I knew that labels helped tremendously in the processing of sensory information. Labeling of smells, sounds, things one touched, saw and tasted... all this, I knew would help. But, in my heart, I felt that in these issues, there may be much more involved... in terms of actual physical damage. After all, Zachary had seemed to make more progress in some of these areas once on digestive enzymes to help him actually break down foods that he simply could not properly break down on his own, food that somehow created within him a natural opiate or drug effect.
So many "new" things I had only recently learned about... like digestive enzymes, chelation and things like grapefruit seed extract – a great and inexpensive way to help control yeast issues in these children. Parents could obtain more information on that topic on the enzymes and autism parent discussion board listed above.
Note: This was grapefruit seed extract (not grapeseed extract). I gave this to Zachary two or three times a day (just a few drops) and it truly did help control yeast issues. This product could be obtained at any local health food store. I also gave Zachary No Fenol enzymes when he was given the grapefruit seed extract since it was rather high in phenols. I hid it in his rice based cfgf ice cream.
I knew supplements in the form of vitamins and minerals were terribly important too... and I knew that the pharmaceuticals were now pushing to make these everyday products, in the future, possibly only available via prescription. This was something I felt could simply not be allowed to happen. Too many parents of the autistic and too many others in the general population needed access to these items... and too many of us had no health insurance because no one wanted to "cover" our children. The burden on the families of the autistic was already heavy enough without making it worse! Vitamins and minerals had never been prescription items in the past, and in my opinion, there was absolutely no reason to do so now! In my opinion, this was simply the strong arm of the pharmaceuticals, once again waving strongly in Washington!
Indeed, there seemed to be no end in sight when it came to "how difficult" things were for the families of the autistic... and in terms of how much they had so been failed by "the system" and our government in terms of their providing no financial relief, and worse - no answers!
Like most parents who had turned to "the system" for help, I found there was very little available for my child. When our suspicions that Zachary had autism were indeed confirmed by a pediatrician, I left the doctor's office with a couple of brochures, the name of a couple of behavior therapy offices, and a couple of phone numbers to local groups that “may be able to provide some assistance”. Within a day or two, I was also given the name and number of a local neurologist.
It took me very little time to come to the conclusion that our family would basically be on its own in this battle. Behavior therapists cost anywhere from $35,000 to $50,000 per year and even for those parents who could afford this, the waiting lists to get into private programs were anywhere from 12 to 18 months. We simply refused to wait that long to get started! Local agencies could only provide about 2 or 3 hours of speech therapy per week. Because Zachary was less than 3 years old at the time, he was not allowed to have the more lucrative 5 - 10 hours per week he would have been allowed in IL - if I really pushed to get it! Needless to say, in my view, this was basically "a joke"! I had a child who desperately needed help, and this was the best I could get? The neurologist's office basically offered to put my son on drugs... that was about the extent of their help... so, for us, they were out too! Even if I went ahead with an MRI or CAT scan... then what? So, perhaps they could tell me my son's brain was "different" – I already knew that - ... but, they could provide no answers in terms of what needed to be done to help him... so, I thought, why go through that? As I came to understand more about the value of MRI in the study of the autistic brain, I came to truly understand that for our family, this would basically have been a waste of time anyway! For more on that, I encouraged all parents to read my section called: All Those Brain Studies – And The Need To Question Everything!
My husband and I grieved the loss of the son we had once known... but, we quickly realized that we were on our own, and if anyone was going to help Zachary, it had to be us! And so started our long journey down the halls of the prison so many parents had come to know as "autism"!
As our journey progressed, and Zachary did better, I had an overwhelming need to share our story with other families. That was when I wrote my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism. After writing that book, however, I came to truly understand my son in terms of what his issues really were... I was "close" in my first book, but now, I had a much better understanding of so many of his issues. I could now explain well over 100 things in my son - emotional, behavioral, social and many sensory issues now all came together based on one common link - the inability of the autistic child to integrate his world... the inability to understand the whole in anything without first understanding the parts that made up that whole! This, I was certain, was the key to so much!
In the past, when I had researched autism, I had found a few common "characteristics" of the autistic listed in many books and articles on autism. But, in looking back, and truly examining Zachary and "what I saw" in my son, I could see that so many signs had been there...so many signs of autism manifesting itself... I, and everyone else, had simply failed to recognize these for what they were.
Signs So Easily Missed or Dismissed... - that had been the title of Chapter 6 of my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism.
One of the dangers with autism was exactly that... the signs were all too easily missed or all too easily dismissed and with that dismissal, precious time was lost. I now recognized over 50 things that I could now say were signs of autism manifesting itself in my son. These were provided in the Appendix section called "Signs So Easily Missed or Dismissed". In my opinion, if your own child had more than ten of these, you had reason to be concerned.
Autism meant big bucks - in profits and costs. There were big bucks to be made by those who would offer all the latest scams - and these were not limited to "fly by night operations". From a cost perspective, many clinics with PPOs/HMOs did not have an interest in diagnosing autism. These children became "too costly" for clinics that were paid a fixed amount per year whether or not they see the child once or 100 times in a year. It was to the advantage of these clinics not to see your child more than for regular/routine visits. The fewer times they saw your child, the more profitable their clinic. It was not in their "financial" interest to diagnose autism in a child. But, it was very much in their financial interest to make sure all children were vaccinated. In many cases, doctor’s bonuses were actually tied to how many children they had vaccinated. And, in addition, the pharmaceutical industry now spent close to 12 BILLION a year marketing to doctors… and that included many lucrative perks as well!
These issues were all a fact of life and make no mistake about it! Children with autism were but a major "expense" line item for many, many clinics on such HMO/PPO plans. Again, only you, as a parent could do what was right for your child... to expect anyone else to do so, would indeed, be a very bad assumption to make. We had learned these “realities of life” the hard way and I hoped to help prevent other parents from learning the very difficult lessons we had learned.
I was convinced the office where we took Zachary for his periodic checks knew he was showing signs of autism… they were there – so plainly – throughout his file. My husband had even asked once: “Is he autistic?” – but nowhere was that comment by the parent listed in my son’s medical records. Surely, any competent doctor would have at least noted that concern – or would he? Was the medical community so truly uninformed when it came to issues of autism or did they simply prefer to “remain ignorant” and hope parents did not figure certain things out? For more on so many of these issues, I encouraged all parents to read my first book, Saving Zachary: The Death And Rebirth Of A Family Coping With Autism, available on my website: http://www.autismhelpforyou.com.
Yet, getting upset over “what was known”, “pretended to be known or not known” was not going to help my son. We knew we were on our own… and so, we set out to “save Zachary”, completely on our own!
In looking at so much of what I saw in Zachary, so much that had been missed for so long, I finally came to understand his issues.
I decided to test my "theory" of the underlying problem in these children - that they could not properly integrate the various aspects of their world into a "whole" without first understanding the parts that made up that whole - in everything.
As I continued to observe and work with Zachary, I tested my theory, and sure enough, over and over, it proved to be accurate. I, now, understood my son much more in terms of "what I saw in him"... and having that understanding of his issues meant I could now focus my energies on helping him leave the shackles of autism behind.
By this time, Zachary had been on a casein and gluten free diet for approximately 28 months. I encourage all parents to truly give this diet a try. It was a difficult regiment to follow, however, the benefits I saw in my son were all worth it. I knew some advocated that if you did not see improvements within 3 or 4 months that "the diet" probably would not work for your child, however, for us, as a family, the really big changes came after approximately 12 months on the casein and gluten free diet.
Although casein could leave the body in approximately three days, gluten could indeed take up to 10 - 12 months to leave the body. In addition, we had recently (February 2002) put Zachary on digestive enzymes that helped to break down casein and gluten. Even though he was on a casein and gluten free diet, and I had been rather fanatic about not having any infractions, he undoubtedly was still getting gluten from hidden sources I had not been aware of, such as toothpaste, soap, shampoo, etc. There were now companies that made casein and gluten free products for those who wanted them. Kirkman Labs (http://www.kirkmanlabs.com) provided a casein and gluten free toothpaste, along with several other supplements for autistic children, and a company by the name of Miss Robens (http://www.missrobens.com) provided a casein and gluten free shampoo and laundry detergent. Digestive enzymes, available through Houston Nutraceuticals, Inc. (http://www.houstonni.com) in my opinion, did help Zachary on many fronts, especially in terms of overall sensory issues (i.e., sensitivity to light, sounds, touch, etc.). These enzymes now gave me that comfort that “hidden” sources of gluten were not being cared for, too!
Throughout these materials, I had attempted to provide for parents examples of "what I did" with Zachary to help him in many, many areas. I chose to provide these examples of "things I did" within the area being addressed specifically. But, there was still much more to share in this area of "what can be done to help these children, today?”