These children have extremely reactive GI tracts. I will always remove red cherries, strawberries, watermelon, and most berries to start with. Interestingly, it was originally a Dr. Feingold who proposed removing sugars and reds in children that were hyperactive many years ago. At that time I certainly agreed with removing sugars in children that were hyperactive, but over the years it has become obvious that he may also be right about the idea of red dyes. I would add even natural red. “Reds” seem to be something that can trigger many of these children along with blues (the reason for removing blueberries). Many physicians will dispute or continue to argue against anything we can’t fully validate. Instead of being open to the possibility of a problem, if it can’t be measured we assume it is not real, rather than an unexplained possibility. Interestingly, a few years ago, there was a news story about a woman who was violently allergic to strawberries; in fact, she would die if she ate a normal strawberry. However, she was able to eat a synthetic white strawberry. As a physician I only can dream or how far ahead we would be today if we had studied what we don’t understand, what we don’t know; instead of redoing what we’ve already validated or believe is likely to have a high probability of a successful, predicted outcome.
With these children (with rare exception, caution) it is very wise to remove nuts. Ironically nuts and citrus are number three and four in food allergies when we are taught about potential food sensitivities, potentially reactive food groups. With general certainty, these children will react to nuts. Among the many dietary mistakes is the idea that you take away dairy, but then should be substituting a nut-butter-based milk instead. This is almost as big a mistake as giving a child dairy. Unfortunately any natural nut milk is going to be potentially very reactive.
It is only with great caution and care that I will okay a child eating processed creamy peanut butter as part of a sandwich for lunch. First only with the recognition that we have to be able to give children something for lunch and the old standby “peanut butter and jelly” sandwiches may have to cautiously be a part of that. While children will often go off the wall on crunchy or natural “wholesome” nut butters, as with wheat, the processing that goes into making that processed creamy peanut butter helps to reduce the allergy potential in a child sensitive to peanuts.
Because of how sensitive these children are, there is an ongoing need to take time to isolate and control variables. A mother observing her child noted that one brand of processed creamy butter seemed to be fine, while on the other brand, the child would rapidly become hyper. The difference was that the “bad” brand had molasses in it. This leads into discussion again that any impurities are potential problems. The reason honey is often not good for these children (including the risk of botulism below twelve to eighteen months in any child) is that it’s not a clean product.
So in general nuts, with the additional fact that they contain arginine that can feed these herpes viruses, should be avoided. There is an additional reason, perhaps interconnected to the sensitivity issues discussed. Nuts become “rancid,” and they produce trace toxins which may impact beyond immune sensitivities. Depending upon the food screen, I do find some children should be removed from citrus. In addition to nuts, citrus is a surprisingly common source of food allergies.
I will always recommend a child be off reds and tropical foods (not native to the region). From that point it will depend on what else may be significant on a patient’s food screen, but of course no test is perfect. Whether one does the newer blood-based RAST testing, which is IgE based, the old-fashioned skin testing that was IgE based, or the newer IgG4 screens, no testing is perfect and no parent should be told that because a child is negative on a test, that means that food is okay. As an example, we have known for years as physicians that IgE testing is fraught with problems such that if a child is positive in an IgE based test they are likely to be allergic, but if a child is negative they could still be allergic. With the IgG4 food screens many products may appear reactive, overly reactive, reflecting the overall activation of the immune system. So one must carefully look at and interpret patterns with logic. No child is likely to be allergic to everything being tested, but sometimes can be so overly reactive that everything appears to have what we call a marked “shift to the right.” While not absolute, when a follow-up test shows cooled-down immune reactivity, many past offenders now become nonreactive and that is a good sign the immune system is becoming healthier and less stressed. This creates a very nice picture of what the child’s immune system is really doing.
Don’t deprive your child, however. Substitutes are always available for almost any product. Children seem to really enjoy “fake milk” in place of milk available at most health food stores and more and more markets depending on where you live. Easier to find are soy milks and sometimes goat’s milk. But remember, there is about a 25 percent cross over between dairy and soy allergies, and the more natural, the more “organic” the soy (or even the goat’s milk), the higher the chance of a sensitivity/reaction. It’s a wise idea to get your milk pasteurized. Mocha mix nondairy milk substitute is available at most supermarkets, as well as mocha mix ice cream.
Fake cheeses are also readily available. TofuRella comes in cheddar, mozzarella, and jalapeno for the brave. These melt and make a reasonable fake pizza or fake grilled cheese sandwich. There are many other brands of soy cheeses—make sure there is no added milk protein in them. Goat’s cheese is often a good choice (and tastes pretty good).
Chocolate is an offender, because most chocolate is “milk chocolate.” An occasional treat made with cocoa powder or nondairy dark chocolate is usually feasible.
With any “new” food always watch for a reaction. If your child has a reaction, that product is not for them. Breakfast should generally consist of some “processed” (meaning not whole-grain) cereals such as “Rice Krispies,” or Corn Flakes unsweetened, served with one of the fake milks. Some children have a problem with the preservatives put in cereal, especially BHT. If this is your child, then a preservative-free cereal like puffed white rice or rice squares will sometimes work (be cautious, always avoid products made from brown rice). The key issue with any grain is how well processed or “clean” it is (even white rice).
Again, a lot of these children also have problems with red, yellow, and blue food dyes. Pay attention to your child if they consume these in cereal or fake candy and watch for a reaction. A “diet” soda is a great reward as long as your child does not react to NutraSweet or Splenda. Sparkling flavored mineral water is a good choice with no added sweetener. Most sugarless candies can now be found sweetened with saccharin, Splenda, or NutraSweet. Sorbitol also works as a laxative so keep an eye out for loose stools.
In general, limit sugars.
The average American consumes more than 120 pounds of sugar a year. For example, a hamburger bun has three teaspoons of sugar; a regular nondiet twelve-ounce soda has nine teaspoons of sugar (regular Coke, 7-Up, Sprite, etc.).
Other names for sugar to watch out for on food labels:
Brown sugar
Corn syrup
Dextrose
Fructose
“Natural” fruit juice
Galactose
Glucose
Jam
Jelly
Lactose
Maltose
Maple syrup
Water down juices, start with half water/half juice and work down to one-fourth juice the rest water. Be creative. If your child loves those juice boxes, pour them out when the child is asleep, refill with diluted juice, and put a piece of scotch tape over the top. You’ll get away with it. Kids love the new Crystal Light drinks that come in sport bottles. Buy them once, then refill the bottles with the Crystal Light you can mix at home. Or use the single packaged portions you just add to a bottle of water.
Lunch is a good time for leftovers and extra protein.
Protein supplies necessary amino acids, which are the building blocks of the body. No supplement can do as
well as the real thing. Lunch is a hard meal to really make healthy. A sandwich is okay as long as some protein is in the middle. Bread is where the controversy begins. As long as your child is not overly gluten sensitive or has a significant titer to what is called gliadian antibodies, “processed” white bread is generally okay. The word wheat is okay as long as the word “whole” is not in front of it (but this can be very confusing). The reasoning is, many people are allergic/reactive to whole grains, but not as dramatically, if at all to a processed product. Processing, changing the protein structure, grain, etc., removes most of the allergenic properties. For this reason, often the store’s cheapest white bread is a good choice because when it costs less, it is less likely to have butter and other allergenic ingredients in it. While this may sound horrible for nutrition, the idea is not for a child to eat a loaf of bread, but to use it as a way to sneak in the protein (as part of a sandwich). Be careful—many white breads advertise whole grains; these are not the ones to feed your child. Besides allergens, whole grains are much harder to digest and can increase intestinal inflammation. I am not arguing nutrition but a simple way (bread) to get the child to eat protein, have a sandwhich for lunch at school (not at other meals).
Dinner can be any meat, chicken, fish (if tolerated) with some vegetables and a little starch (small serving of potatos preferable, occasionally white rice, very white processed pasta). Try to remember the body converts starch to sugar within a few steps, so that is another reason to limit consumption. We know your child may be stubborn at first and only eat the starch on the plate. The key is not to argue with them—if they do not want to eat the rest of the food, do not force them. But do not let them fill up on junk food/more starches/sugar, “grazing” either. When they want more food, present what they have not finished or just say “wait till the next meal” (either approach is okay). Believe it or not, their pattern of eating will change. Too often parents give in and become afraid a child “will starve to death.” The key is to understand that brain is often craving what is bad for it (like a drug), and in the end you are helping your child to control those cravings. As a pediatrician I can safely say “there are no reports in this country of a child starving to death, if offered food.” Remember, you cannot make a child eat (or go to the bathroom), but “nature” will work for you if you let it. Getting a child healthier, and a judicious use of iron (when indicated) helps to stimulate, bring about a more natural appetite (which makes it easier to then modify or change things). Install a good water filter in your home if there is any issue of toxins or possible problems with your water supply.
What can my child eat?
All meats (avoid milk-fed veal, organic beef fed with whole grains)
Fish all kinds (not prebreaded)
Seafood such as whitefish, salmon, shrimp/prawns
Be cautious, sometimes increased allergy issues with shellfish
Poultry such as chicken, Cornish hen, turkey
Eggs (unless the child has eczema)
Celery
Cucumber
Dill, basil, rosemary, thyme, oregano, etc.
Fennel
Lettuce, romaine, escarole, endive, radicchio, etc.
Olives
Radishes
Red/green peppers (bell peppers)
Artichoke hearts
Asparagus
Aubergine (eggplant)
Avocado (use caution, can be a problem)
Bamboo shoots
Bean sprouts
Beet greens
Broccoli
Brussels sprouts
Cabbage
Cauliflower
Celeriac
Chard
Green/French beans
Kale
Kohlrabi
Leeks
Marrow
Okra
Pumpkin (be cautious, sometimes a problem)
Rhubarb
Spring onions (scallions)
Spinach
Summer squash
Turnips
Water chestnuts
Fruit
Apples
Apricots
Bananas
Cantaloupe (be cautious—may be a problem at times)
Pears
Grapes
Peaches
Plums
Orange (if not a problem with citrus)
Fruit juices—limited quantity. Water down to reduce natural sugar content (not fruit punch or red coloring)
10
TIPS TO HELP GET THROUGH THE DAY (DEPENDING ON BEHAVIORAL AGE)
BEHAVIOR: TREAT AS A NORMAL REGULAR child, adjusting for age developmentally. Time-out initially. Then as older developmentally, the child loses something for the day (something child really enjoys). Helps to have a behavior chart at school. Gets a smile (overall OK or good) or frown (bad day, aggressive behavior, etc.) from teacher end of the day. If child comes home with smile, great. If a frown, the child loses something major (i.e., all electronics) for the rest of the day. Start fresh the next day. (Note: No daily bribery, but like for any child, if a week or two of smiles, something extra will be done for them that they like)
Eating: Offer what you feel is a healthy meal with a little starch. If child eats starch and walks away, that’s fine. No discussion. But when child comes back one hour later hungry, play dumb and serve the leftover food. When not eating well, don’t let child snack or have juice in between meals. They need X amount of calories per day no matter where they get it.
Education: If in a special-needs class, try to have some time in a regular class for “normal” role models. Learn to use the computer academically. Work with child fifteen to twenty minutes on computer, then the child can have thirty to forty minutes to do something they enjoy. The computer (and age-appropriate programs) can be a wonderful tool to review developmental steps orderly, logically, but is best if integrated into steps to help a child generalize (whatever is being taught on the computer, etc.), fill in, and understand the gaps they missed.
Speech: Need speech pathologist who can redevelop skills that were missed and who also is familiar with oral apraxia. Think of a stressed/ injured brain (like that of a stroke victim) that needs rehabilitation.
Sleep: If child has trouble sleeping or falling asleep, talk to the child and explain that when it is dark outside, they need to stay in bed, let their brain rest. Even if you can’t sleep, you need to lie there and rest. If child comes out of his or her room, you then need a control point;, i.e,: lock on the outside of the door, no nightlight, etc. If child will stay in room, then nightlight will be allowed to stay on, etc. Goal is for child to stay in bed and rest (will usually fall asleep) even if they can’t sleep.
Siblings: Try to help a brother or sister understand their brother / sister has been ill, and they can become a part of helping them get better. Siblings can be the best therapists.
11
THE FUTURE
WE HAVE WITNESSED THE EVOLUTION OF what is now being recognized and accepted at the National Institutes of Health (NIH), the Centers for Disease Control (CDC), and academic institutions worldwide as a “neuroimmune” epiphenomenon. Studies are now confirming the concept of physiologic immune-mediated diseases underlying an abnormal physiologic state for these patients. This, in turn, creates both physical and neurocognitive deficits and dysfunction, usually of long-term duration. The ongoing failure to “connect the dots,” understand the true magnitude of the medical epidemic we are facing, as noted previously, is beyond understanding or comprehension.
I believe that many of the characteristics ascribed to autistic (and “quiet” ADHD) children overlap with the multiple complaints of adults afflicted with components of CFS/CFIDS and adult “ADHD.” As previously noted, all of these groups have reports of various immune abnormalities including T cell changes reflected, for example, by increased or decreased CD4/ CD8 cells, increased/decreased NK and B cells, and altered viral titers. It is this common denominator of immune alterations that gives hope for potential new
therapies in the near future for these children. However, while this hypothesis now has support in the literature, there are many important questions to be answered. How many “autistic” children have evidence of or are linked to an immune-dysfunctional state or a conclusive viral etiology? Can these children be viewed and treated differently than the “classic autistic” child of twenty to thirty years ago? Is their prognosis for recovery significantly better than the “classic autistic” children from the past? It is time to recognize that these children are likely suffering from a medical disease process and need our clinical and research efforts now! Current treatments need to be modified and adjusted to account for this finding. The symptoms of the “quiet” ADD child (who is likely connected to this phenomenon) is not consistent with the past training or processes used to “explain” and address the “hyper” ADD child. It seems likely that the cognitive defects described in adults and children with CFIDS may be thought of as milder, later-onset form of “autism” (really NIDS) as they are similar in symptomatology and possible etiologies. The continued exploration of an immune-dysfunctional epiphenomenon, and the potential etiologies linked to it, is a door we must walk through if we expect to change the future of this generation of children! If a child is born developmentally miswired, “damaged,” something happened in utero. But a child cannot learn to speak and use language and then lose these abilities if the cause of their disorder is developmental or structural. Such a child cannot respond to treatment and become a regular child once more, as has been the case in my practice over and over again, if the cause of their disorder is a “fixed” process, congenital or genetic disorder. It has been repeatedly apparent that four-, five-, six-year-old children are starting over where they left off at eighteen months, two years of age. Parents who were told their children would never talk, could never be social, could never have feelings, now have children who are functioning normally or who are still struggling to catch up. In either case these parents can see or are beginning to see a future for their child. We must focus our efforts on saving this generation of children before it is too late. The ramifications are enormous. At the end of a research symposium in October 1997 that brought together top researchers from around the country to discuss Alzheimer’s, adult dementias, social brain, and autism/pervasive developmental disorder (PDD), this statement was made: If a child developed normally during the first twelve, fifteen, eighteen months of life, developed any language/ words, and then somehow went into this autistic spectrum, it was a 100 percent certainty that the process had to be immune/viral. If a child developed normally the first twelve, fifteen, eighteen months of life and had no words, 99 percent it was an immune/viral process, and no one there could rationalize any other possible mechanism. While there is ongoing controversy regarding past brain biopsy findings and their implications, if any, to this generation of children, we do have NeuroSPECT scans, which show reproducible, quantifiable blood flow in the brain. Blood flow corresponds directly to function. When NeuroSPECT scans of children diagnosed as autistic/PDD have been correlated with MRIs and CAT scans, the combination consistently shows no preexisting damage to the brain, but rather points toward an immune mediated shutdown consistent with that found in adults with chronic fatigue syndrome and other adult dementias and with children diagnosed as quiet ADD and mixed ADD. Paralleling this, beginning in the 1980s was the initially slow, now epidemic incidence of disorders in children labeled as autism/PDD and the increase of reports of autoimmune diseases in the animal literature, of altered ecological balance, immune system abnormalities in various species. We either have to assume that this increase of disorders in the human population is mass hysteria, mass psychosis, mass schizophrenia, and/or an impossible epidemic of behavioral developmental disorders in children or we must step back and realize that maybe we have a large number of adults and children suffering from a disease process that is affecting how their brain and nervous system functions, in ways that physicians had never understood (or had the technology to understand). I have family after family within my “new” practice in which there is a mother or father with chronic fatigue syndrome, an older child with ADD/ADHD, and a younger child or two with autism/PDD. As noted, unless we assume this is all random, there is unfortunately a logical connection between the above disorders and their rapid emergence as a crisis. We are looking at what appears, supported by increasing data and reports in the literature, to be autoimmune, neuroimmune disorders or what my associates and I have termed neuro immune dysfunction syndromes or NIDS. If you are an adult with an intelligent, developed brain or an older teenager, when this process attacks, you will likely end up being diagnosed with the illnesses such as chronic fatigue syndrome, adult ADHD, etc. If you are a younger child, five, six, seven, or eight years old when this process is triggered, with some cognitive, social, and language capabilities already developed, you will likely develop what is called quiet ADD or mixed ADD. If you are twelve, fifteen, eighteen months old, however, when this process begins, you will have barely begun to develop cognitive, language, and social skills and you will wind up with what has been called autism/PDD.
The Myth of Autism Page 17