The following articles are taken from the December 1999 / January 2000 issue of the Pure Facts.
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Helping the child on the ADD/autistic spectrum

Feingold members and guests heard outstanding presentations from leaders in these fields at the Association's annual seminar held on Staten Island this past October.

Our keynote speaker was Patricia Lemer, M.Ed., co-founder and Executive Director of the non-profit Developmental Delay Resources. She opened the seminar by describing a healthy sensory "diet" that can enable a child to be ready for school, learning, and life.

Sensory integration dysfunction can interfere with a child's ability to focus and learn, but there are things parents can do to help such youngsters.

Unfortunately, the tools and strategies often provided for these children - learning and organizational aids designed to help accommodate their disabilities - can actually prevent them from going through important stages of sensory development.

"You have to have mastery over your own body before you can make sense of those little squiggles on paper that we call letters and numbers," Pa- tricia explained. "Telling kids to sit still so they can pay attention is a total waste of time." In her presentation, she covered some of the treatments and strategies that have been found to be helpful for children whose development has been hindered. Her practical, down-to-earth advice, coupled with her deep concern for our children earned Patricia rave reviews from the audience.

Arnold Brenner, M.D., is a pediatrician with a big curiosity and a determination to find whatever it takes to help his patients. Some of the children he was treating in his Randallstown, Maryland practice back in the 1970s had serious problems and nothing he had tried helped them.

Dr. Brenner was aware of Dr. Feingold's work with what were then called "hyperkinetic" children, but he didn't believe that a diet would help. In fact, he set out to prove Feingold was wrong. He persuaded the parents of 32 of these children in his practice to use the Feingold diet, although Dr. Brenner did not expect to see any improvement. When eleven of the children responded dramatically, he changed his mind, and has been recommending it since.

"ADD is a symptom, not a disease," Dr. Brenner echoed the opinions of other speakers when he pointed out that there are many different things that can trigger those symptoms. Similarly, there are numerous things that can be beneficial for the child with "ADD," autism, or related disorders, and there's an overlap in the therapies that can help them. For example, some individuals have a much higher than normal requirement for certain nutrients, but mainstream medicine does not recognize this.

Similarly, synthetic chemicals can affect different people in different ways. He has found that many of the children he treats have a zinc deficiency and believes that tartrazine (yellow dye #5) can cause a loss of zinc. Other children require large amounts of various B vitamins in order to function well.

It's important to get at the root cause(s) of the problems, not to cover them up with medicine. But, unfortu-nately, medicine is very big business; this is why it is easy to obtain grants to conduct studies on drugs, and not on nutrients.

The "gold standard" in medicine is the double-blind, placebo-controlled study, but many of the early studies on the Feingold diet were badly flawed. "When clinical practice does not agree with double-blind studies, you should look at their flaws," he told an attentive audience.

Dr. Brenner has dealt with some very tough cases, including children with fetal alcohol syndrome and homicidal ideation, and he has been able to help even these youngsters.

The media reports extensively on "social diseases" and professionals wring their hands, but few consider that many of these terrible conditions have a biological basis, and if you can identify the causes you might be able to change the life of the afflicted person and all of those lives he touches.


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Nutrition = Behavior

In the ADD - autism spectrum the most important factors are the external ones, Dr. Kotsanis told his audience at the Feingold conference seminar.

ADHD is not a psychiatric disease, he maintained. "Your children need good nutrition and to be detoxified." To do that we have to look at several systems, including: genetics, the central nervous system and the brain, the hormonal, immune and digestive systems, as well as the child's nutrition. These systems are all connected.

Why is the brain the main target for ADD? Dr. Kotsanis explained that it could be because the cell walls are made of fat, as is 60% of the brain. Toxic chemicals travel easily through fatty tissues and into the brain.

As the director of the Foundation for Research in Energy Medicine in Fort Worth, TX, Dr. Kotsanis is one of the pioneering physicians who is conducting research on the use of Secretin, a hormone precursor found in the intestines. It has been found to be very helpful for about half of the children with autism for whom it has been used. (The good news for children who hate injections is that Secretin can be administered in many ways.) The research h as been going on for over a year, and Dr. Kotsanis expects his results to be published in early 2000.

He also answered questions about EPD (enzyme-potentiated desensitization), an allergy treatment that has been used in Europe for decades.


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Do children hate being on the Feingold diet?

Recently the Feingold Program has been mentioned favorably in various newspapers across the country, but the idea still persists that, although many children clearly benefit from the program, they rebel at the changes in their food. How true is this?

First, let's take a look at what it means to be on the Feingold program. For the child who is accustomed to eating candy, cookies, soft drinks, etc., he can continue to eat these things. The only difference is that he will be eating candy and cookies without synthetic flavoring and BHT, soft drinks without dyes and aspartame. The very young child might not even notice a change at first.

The materials provided for parents are designed to help them locate the foods their family enjoys, with as little change or disruption as is absolutely necessary. Of course every family is different, but among mothers who contact us, we hear very little about resistance on the part of their children. We know this does happen, but it does not appear to be as big a problem as an outside observer is likely to think.

We learn a great deal from the experiences of member families, and have found that they can best answer the quesetion of how children respond to being on a special diet. On page 2 one of our adult members describes how she felt growing up on the Feingold diet.


[See more parent and member comments]
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PDD (pervasive developmental delay) and autism - can a child have both?

Definitions of PDD and autism have been set up by the American Psychiatric Association. These psychiatrists choose a list of symptoms which are often seen in children who then fall under the umbrella of these labels, autism or PDD. As Dr. Shaw pointed out, PDD is almost autism. It's fewer symptoms than full-blown autism. But there is no blood, urine, stool, hair, digestive test or any test at all for autism or PDD. People who put those labels on kids are doing it based on the symptoms - the behavioral "psychiatric" symptoms those children have. And what we're looking at are the causes of those symptoms. So, a child who once was diagnosed as autistic, as you do a lot of these biological treatments may, in a short time, only be PDD because his symptoms have lessened; and if you keep doing them, then he may only be ADD, because his symptoms now fall under the diagnosis of ADD. It doesn't mean the child was misdiagnosed. It means that he has fewer symptoms or fewer severe symptoms. What we're trying to get you to do is get away from the label. We don't treat labels, we treat human beings, and we treat whole human beings whose guts are talking to their brains, and we have to treat everything.

Patricia Lemer, M.Ed.

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Antibiotics and Autism

The child who has chronic ear infections is likely to also have ADD, developmental delays or autism.

Dr. William Shaw, who is director of the Great Plains Laboratory for Health, Nutrition and Metabolism, began his work in this area by observing and testing children with autism.

He found that they had elevated levels of tartaric acid, which could be measured in the urine. The level of tartaric acid reflects the amount of yeast in the child's intestinal tract, and an overgrowth of yeast is believed to be the trigger for the autistic symptoms many children exhibit.

Everyone has yeast in their body, but we also have beneficial bacteria that keep the amount of yeast at safe levels. When a child is given an antibiotic the drug kills off the desirable bacteria, but not the yeast. Without the bacteria to keep it in check, the yeast quickly grow out of control, increasing as much as 200-fold in one year. Yeast produces by-products that are believed to be responsible for many of the symptoms we refer to as autistic characteristics.

Dr. Shaw has found that if the yeast can be brought back down to normal levels (using anti-fungal drugs) then the symptoms often improve. This should also result in a reduction of tartaric acid in the urine, and this can be documented with another urine test.

When antibiotics have damaged a child's natural balance of yeast and bacteria, the anti-fungals may have to be used for a long time. Some parents find that if the drug is discontinued the symptoms quickly return and it can take a long time for the child to return to the previous higher level of functioning.

Antibiotics are not the only triggers for yeast overgrowth, Dr. Shaw pointed out. Yeast thrives on sugar, and today sgary foods are consumed by children at a greater levels than ever before, especially in the United States.


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Media attention focuses on ADD/ADHD

Since your last issue of pure Facts, many things have happened - exciting things!

The Center for Science in the Public Interest (CSPI) has provided copies of their excellent report, "Diet, ADHD & Behavior, a Quarter-Century Review," to the media. Major newspapers picked up this information and published articles questioning the excessive use of stimulant drugs in the United States.

Jane Brody of the New York Times wrote about the CSPI report, and titled her article "Diet Change May Avert the Need for Ritalin." The Times published three letters from readers responding to the article. The first was from a mom who told how successful the Feingold diet has been for her family. The second was from a teacher who believed "that Ritalin was a wonder drug for hyperactive children" until she researched the issue; she expressed amazement at "what food can do to children today."

The third letter published in the Times represented the other side. It came from a doctor who charged that CSPI "misleads the public." (The Times editor added a note after this letter that the doctor "was an executive for the manufacturer of Ritalin from 1983 to 1987.")

Shortly after the release of the CSPI report another major report came out. The CQ Researcher, published by Congressional Quarterly, Inc., devoted the October 22 issue to: "Rethinking Ritalin, Is it overprescribed for children with ADD?" Journalist Kathy Koch provided a comprehensive picture of the controversy, with evidence supporting the use of diet.

Recently, the Colorado school board has spoken out against the practice of teachers and other school personnel promoting the use of drugs for children with problems such as hyperactivity and attention deficits. New York Times correspondent, Michael Janofsky, writes that the school board "said they were motivated, in part, by evidence that they said suggested that dozens of violent crimes, including the massacre last spring at Columbine High School in Littleton, Colorado, had been committed by young people taking psychotropic drugs."

The Colorado resolution captured the attention of Washington Post columnist, George Will. His December 2 column is titled, "Boys will be boys - or you can just drug them." Will claims that "in 1996 10 to 12 percent of all American schoolboys" were taking Ritalin.

All in all, a growing number of people are taking a hard look at the treatments being used for behavior and learning problems, and are calling for a "better way."


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What it was really like to grow up on the Feingold diet

Leah O. grew up on the Feingold Program and sees a tremendous need for it in the elementary school where she teaches. After 22 years on the diet, she offers a special insight.

Birthday Parties

When I was little my mother sent me to the birthday parties with my own cupcake and something to drink (or I could stick with water - it was my choice). She did forget once when I was six and we were running late. It bothered her and the other parent much more than it bothered me. I drank water because there was nothing in the house that I could have. I knew that even though I was stuck with water, it was better than the way that I would feel if I ate the cake and ice cream and drank the punch.

My mom really proved to me that I was a better person when I ate only the foods that were good for me. Even at 5 when an insensitive teacher or friend's parent told me that "one bite won't hurt" I told them that it would and that if they made me eat it, then I would spend a few days with them, because my mom wouldn't want to put up with me after that "one bite." That usually as all it took to convince the adults that one bite was one bite too many! (Yes, I did have quite a mouth on me even when I was on the diet - just imagine what I was like when I was off it!)

Learning the Consequences

I knew if I cheated, and if because of that I had done something to get into trouble, I would still be held responsible for my behavior - no excuses.

During the teen years I did decide at one point that I didn't need to restrict my diet anymore. I realized relatively quickly that it was not such a good choice and returned to watching what I ate.

In college I attended two different schools. One was not at all cooperative so I just didn't eat the cafeteria food. I cooked all of my own things in my microwave in my dorm room.

The other college was a small private one. They gave the words "helpful" and "understanding" a whole new meaning! Before the classes started I went on a tour of the cafeteria kitchen with the food service manager. I checked ingredients of most of the foods, sauces, etc. that they used on a regular basis. It turned out that a lot of the things they already used were things I could have. Others needed to be modified. The baker was wonderful and even made special treats just for me! He would alter recipes to leave out things like artificial vanilla flavor.

The food service manager told me that if there was any necessity they couldn't provide I could go to the grocery store and buy what I needed, take the receipt to him, and he would reimburse me. I didn't have to do this often, but it was very easy. I would bring the receipt in to him and he would give me cash on the spot. I would then leave the food in a fridge in the back of the cafeteria.

Traveling

I have traveled throughout the U.S. and most restaurants are willing to help prepare the foods as I request. As for the places that refuse to be helpful, I comment on how great a tipper I am as I leave the restaurant to find another more understanding place to eat. My mom would tote me into a restaurant and if they were not helpful she would tote me right back out. I understood what was going on (even at ages 4 and 5) and didn't put up a fuss if we had to leave. I knew that waiting to eat was necessary sometimes, even if I was hungry. Other times we would take food along with u s on trips.

Reduced Sensitivity

As I got older I found I could be more relaxed about my diet. I recently traveled all over Western Europe. There I didn't even bother trying to watch what I ate. I decided it was too much of a hassle - not to mention how hard it would be to translate ingredients when I didn't even speak the languages.

I knew that I was going to be very active on the trip anyway, and that I would burn most of the problems off by all of the sightseeing that I would be doing. I scheduled the trip so I had several days to let everything wear off. I had been in Europe for 3 weeks and ate quite a bit, but after about 2 days I was back to normal.

Planned Infractions

As a child I attended camp for several weeks each summer. I ate almost anything while I was there. My mom and I decided that I would be so active that I would be o.k. - plus, I would be out of her hair!

The camp director knew what we were doing, but nobody else at camp did. I knew that if I was having problems with too much build-up I could go to him and we would find some things I should be eating. But that only happened 2 days out of the 6 or 7 years I attended camp.

The camp director knew to expect me to be rather hyper, but at summer camp, everyone is hyper. For me it worked! I was a different person at camp, but I had fun with my friends, and I was always the fastest runner and was never too tired for the next activity. When we had contests to see who had the most energy or who could stay up the latest, I almost always won. My family just didn't plan anything too important for the week after I returned from summer camp.

Put your child in charge.

Help your children understand the consequences for not following the Program and to learn to listen to their bodies. If your daughter decides to rebel, let her know how you feel, but give her room to make her own mistakes. She will learn that you were right (although she really will know this all along, even though she may be very reluctant to admit it).

School Staff

Some teachers are supportive, others are not. The school administrators are the same, but you should focus your efforts on the teacher, as this is the person who will be there with your child every day (and during class parties). Most teachers will be glad to hear you are taking steps to help your child's behavior. Make sure that you explain what you are doing, that the program really does work for your child. Describe your youngster's behavior both on and off the diet, and contact FAUS for printed information to pass along. Some of it is already in your member packet, and you can make photocopies to hand out.

Talk to teachers at more than one grade level, if possible; your child won't be in kindergarten forever.

Finally, put your foot down. In most schools parents have the final say about many things, regardless of whether they are right or wrong. When you put your foot down, if you stomp hard enough, someone will listen (if for no other reason than to get you to stop stomping on their toes!).

Leah O.

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Is it hard?

People sometimes ask me if the diet is really hard. I always say "No."

Really hard is:

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The Feingold® Association of the United States, Inc., founded in 1976, is a non-profit organization whose purposes are to support its members in the implementation of the Feingold Program and to generate public awareness of the potential role of foods and synthetic additives in behavior, learning and health problems. The program is based on a diet eliminating synthetic colors, synthetic flavors, and the preservatives BHA, BHT, TBHQ.