Biological Treatments for Autism and PDD Online > Chapter 8: Part I | Part II
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The medical regimen: diet plus nystatin
An overview of the schedule for treatment is helpful to understand that this treatment is a long term process, and a long term treatment. The first three to four months are spent adjusting to the appropriate diet and level of nystatin. After that, other medications may be introduced, if appropriate.
Schedule for treatment:
Preceding treatment, you may wish to have urine testing done using Dr. Shaw's testing. If so, first see the doctor; order testing, then at return visit, assuming a yeast problem, start the following:
Week 1: Doctor's Appointment
Start diet, Stage I, for 3 days, on 4th day: start nystatin
Week 2: Continue diet Stage I; continue nystatin up to the prescribed maximum dose.Continue nystatin on schedule.
Week 3: Doctor's Appointment to help with questions, assess progress. Continue diet Stage I. Continue on nystatin schedule.
Weeks 4, 5: Continue diet Stage I; continue nystatin. By week 5, patient should be at full dose.
Week 6: Doctor's appointment. Start diet Stage II if appropriate. Continue nystatin.
Week 7-9: Continue diet Stage II; continue nystatin.
Week 10: Doctor's appointment; assess progress to determine whether to go to Stage III. Continue diet and nystatin per doctor's instructions.
Weeks 11, 12, 13: Continue following doctor's instructions.
Week 14: Doctor's appointment to assess progress; at this point, patient may consider retesting urine, and/ordoing allergy testing for food allergies.
After this point, patient should return to the doctor to evaluate any testing results. Other medications such as naltrexone may be considered. Patient should continue on the prescribed treatment plan, returning in 4 weeks, then 6 weeks, then 8 weeks, then every 3 months for the first year.
THE DIET
Changing diet is extremely difficult for everyone, including our family. As my wife often says, if she didn't live with the doctor, she would have a much harder time sticking with the program. Food has social and emotional contexts as well as nutritional value. To change diet, you need to have a good reason. A chance to allow someone with autism to live a "normal" life, to me, is the best reason. Autism is a lifelong condition that can cause tremendous suffering, not only to the person who has autism, but to the person's entire family. Recognizing these problems, I have tried to make dietary change simpler and more gradual by dividing it into stages. Some children respond so well to the first stage of the diet that further adjustments are unnecessary. Other children need more intervention.
STAGE I: Eliminate:
barley malt-a by-product of beer making found in many cereals, crackers, breads and bagels and in many health food snacks. Substitute: similar foods that do not contain barley malt. For example, many breakfast cereals contain barley malt, but others do not ( most General Mills cereals, such as Cheerios and Kix, do not contain barley malt). Similarly, some brands of pretzels, graham crackers, etc., contain barley malt, but others do not. When shopping read labels carefully and avoid anything with malt in it.
vinegar- is literally spoiled wine and is very concentrated in toxic yeast products. Vinegar is found in virtually all condiments, including ketchup and mustard, sauces and salad dressings. Substitute: freshly squeezed lemon juice; tomato paste for ketchup
chocolate - Chocolate has two problems. Chocolate is dried with a fungus. Chocolate also contains a chemical compound which is similar to one of the yeast products. Unfortunately, there is no substitute for chocolate.
pickles and pickled foods such as herring, tomatoes, and pickled peppers (yes, there are such things)
alcoholic beverages and non-alcoholic beer
aged cheese
soy sauce (substitute: sea salt)
Worcestershire sauce
anything containing cottonseed oil (The cottonseed plant is often mold contaminated and the products of the mold end up in the cottonseed oil.)
nuts and peanuts
apples and apple products
grapes and grape products
coffee
Hot dogs, salami, and other processed meats containing nitrates and/or nitrites. "Natural" hot dogs can still be eaten at this point.
These foods must be eliminated for 3-4 days prior to starting nystatin according to the schedule listed below. Continue the diet and nystatin for 4-6 weeks, then consult the doctor to consider whether going to Stage II.
These foods are the most concentrated in toxic yeast and fungal chemicals. Without eliminating these foods, nystatin will not work well and children will not get much better, even if they are given nystatin. Apples and grapes contain yeast byproducts that Dr. Shaw has isolated, and in my clinical experience, wreak havoc in a child sensitive to yeast.
STAGE II: Eliminate all of the above, plus:
Baked goods containing yeast, including bread. Substitute: non-yeast bread (Dr. Semon's recipe for Delicious and Nutritious Whole Wheat Bread), but not sourdough bread (this too is highly fermented)
corn and rye - corn and rye are both highly contaminated with mold
vanilla extract - highly fermented; contains alcohol
Dr.ied fruits and raisins
Concentrated fruit juice
monosodium glutamate (MSG) and aspartame (NutraSweet)
Maple syrup
Bananas
Cut back on all meat and fish except veal
Spices such as cinnamon, dried mustard, curry powder, chili powder, cayenne pepper. (All green herbs, fresh or dried, are acceptable.)
Mushrooms
Soda drinks
Cooking oils except safflower oil, soy oil, and olive oil. Canola oil is acceptable unless a child reacts badly to it.
Sugar, including both white and brown. Substitute: unprocessed honey
Margarine - margarine has a host of problems. The human body does not metabolize it. Butter, a natural product, is much better for the body, even though it contains cholesterol. Substitute: butter
Buttermilk
Patients should follow Stage II for a period of four to six weeks, continuing with the nystatin. After consultation with the doctor, they should consider moving on to Stage III, eliminating gluten and casein (dairy and all grains containing gluten, including wheat, barley, oats, rye, and others.) Note that there is little information on what is in eggs. However, they do seem to stimulate food allergies. Any child with a chronic skin problem should have eggs removed to see if this helps with the skin problem.
STAGE III: eliminating gluten and casein
ELIMINATE all of the above, plus:
All foods containing milk protein--butter is acceptable. Butter in small amounts is acceptable because butter is a fat which does not contain the milk protein casein.
All foods containing gluten, including wheat, oats, barley, rye
The transition to a casein/gluten free diet is described elsewhere in this book by Lisa Lewis Ph.D. The difference between her description and my description is that the diet I recommend also eliminates yeast products and fermented products, so some gluten-free grains, such as corn, which are acceptable on a gluten-free diet, are not acceptable on a yeast free diet.
Patients should follow Stage III for four to six weeks, continuing with the nystatin, then consult the doctor. At this time, they might move on to Stage IV. In my experience, only the most severe cases of sensitivity need to continue to Stage IV. At this point, patients might consider retesting urine by Dr. Shaw, and at this point, they could consider testing for food sensitivity using immunological testing.
STAGE IV. ELIMINATE all of the above, plus:
Melons
Grapefruit and oranges
All meat except veal
Yellow onions (leeks are acceptable)
Fruits except very fresh fruit in season, such as berries
canned goods - canned goods often contain mold contaminated food, because the canning process does not allow for discrimination
fish
ALLOWABLE FOODS on Stage IV: WHAT CAN WE EAT?
In my practice, I have found that the basic diet, and the best foods to eat, which should form the staple part of your diet unless you have documented food allergies or sensitivities to them, are the following:
Beans (kidney, black, garbanzo, Navy, etc.)
Brown rice (long grain, short grain)
Tomatoes
Potatoes
Herbs (marjoram, dill, basil, oregano, etc.), including seeds from herbs (dill seed, celery seed, etc.)
Butter
Safflower oil
Green Vegetables (zucchini, broccoli, celery, spinach, kale, lettuce, etc.)
Roots, such as parsnips
Fresh fruit in season, especially berries (you can freeze berries in season for use later in the year)
Unprocessed honey
Some people choose to stick with only these foods, rather than eliminating everything else slowly, but I do not advise this. Most children will not end up at Stage IV. You may be able to continue eating a variety of foods not on this list. You don't want to lose that opportunity!
Even if this restrictive list is where you ultimately will end up, and this is where we have ended up after several years, I do not recommend starting with it, because the change is too drastic for most families, including my own. You will end up failing your child because you simply cannot enforce the diet. It is much better to implement the diet over the course of several months in a way that enables you to stick with it. After all, you are the gatekeeper for your child's health and the role model for your children.
Is this treatment worth the family's aggravation for the sake of my child?
This diet is inconvenient. Remember, though, how inconvenient untreated autism is that led you to seek medical help: all of the nights of screaming, the extreme sensitivities to touch and chemical substances, and the behavioral issues, all of which I have seen improve more rapidly using the anti-yeast treatment than on any non-biological therapy. Changing diet is relatively easy compared with a life in agony. To my knowledge, I repeat, all children I have treated with the above diet (that is excluding foods containing toxic yeast chemicals) and nystatin have improved. I have never had a parent come back to me saying they followed the diet and the nystatin, and the child failed to respond. This response is totally different from the response to many of the medications I have prescribed for autistic children in my psychiatric practice.
The tragedy in waiting to decide about whether you are ready to tackle this diet is that autistic children respond best the earlier and sooner the intervention. The longer you wait, the more function the children lose. All children I have treated who still have some speech left, gain more speech with this treatment. Once children have lost their speech entirely, there is less hope that speech can come back.
Using nystatin
I have heard often from people that they gave nystatin and it was not helpful. I have found nystatin to be of little benefit without the diet, so these stories do not surprise me. However, the dose of nystatin is also important.
Dr. Shaw writes elsewhere in this book about the problem of "die-off". That is when nystatin kills the yeast, it is similar to bursting a water balloon with a pin. The yeast are like the balloons: once pricked, they release all of their contents at once, which are these same toxic chemicals that make the patient feel bad to begin with. The person can feel worse temporarily. Nystatin can cause some temporary nausea when it is first started but this nausea is not "die-off". This nausea will go away. To avoid "die-off", Dr. Shaw suggests starting the nystatin dose very low and increasing the dose over a week. His final dose is much lower than I recommend to patients.
I also recommend starting with a small dose of nystatin, increasing gradually. Using this strategy combined with the diet, I have never seen this "die-off" with autistic children. When the diet is combined with nystatin, I believe that the yeast do not grow back. This problem of "die-off" and whether "die-off" can be prevented with the diet described here needs to be tested further.
Another possibility can be seen from some of Dr. Shaw's test results. He has shown that giving nystatin alone can result in an increase in bacterial byproducts found in the urine. He suggests that clearing out the yeast may leave room for bacteria to grow and make toxic byproducts. He suggests treatment for the bacteria also.
I suspect that my suggested nystatin dosages combined with my suggested diet may prevent the overgrowth of these harmful bacteria but further testing will be needed to confirm this idea.
I prescribe the nystatin powder, which is the most effective form of nystatin. I recommend mixing the powder with a small amount of unprocessed honey, enough to dissolve the nystatin (about 1/2 teaspoon). For convenience, you can mix one day's worth of doses at once in well washed film canisters, and store them in the refrigerator. These are hermetically sealed. You can send these premixed doses with your child to school. Use a chopstick to mix, and a baby spoon to scoop out the nystatin from the film canister.
The important thing is to get the nystatin down to your child's digestive tract, not have it all over their faces, shirts, and your floor. Especially for the first few days, use anything possible that is acceptable on Stage I of the diet to mix your nystatin, including ice-cream, orange juice, syrup, butter: that is, anything. Once your child begins to associate taking nystatin with feeling better, giving it will be easier for you, and youcan switch to honey.
For those who cannot in any manner get a child to take the nystatin, it does come premixed in a sugar syrup. This is not optimal, as it is much more dilute than the powdered nystatin and is full of sugar.
The truly tough (adults) can put the powder on their tongue and wash it down.Nystatin powder can be pushed into capsules. Nystatin also comes in pill form.
Dosing schedule:
Notes: An eighth teaspoon of nystatin is about 500,000 units. When "twice in the day" is recommended, that means spaced evenly--e.g., take one at breakfast and one at dinner. Three times a day might be breakfast, lunch and dinner. I recommend taking nystatin after you have eaten something, to avoid possible nausea.
****Week 1
Day 1 1/16 teaspoon once in the day
Day 2 1/16 teaspoon twice in the day
Day 3 1/16 teaspoon three times in the day
Day 4 1/16 teaspoon four times in the day
Days 5, 6 and 7 1/16 teaspoon four times in the day
****Week 2
Day 1 1/8 teaspoon once in the day, 1/16 three times
Day 2 1/8 teaspoon twice in the day, 1/16 two times
Day 3 1/8 teaspoon three times in the day, 1/16 1 time
Day 4 1/8 teaspoon four times in the day
Days 5, 6 and 7: 1/8 teaspoon four times in the day
***Week 3 (First alternative)-
Day 1 1/4 teaspoon once in the day, 1/8 three times
Day 2 1/4 teaspoon twice in the day, 1/8 two times
Day 3 1/4 teaspoon three times in the day, 1/8 one time
Day 4 1/4 teaspoon four times in the day
Days 5, 6 and 7 1/4 teaspoon four times in the day
****Week 3 (Second alternative)-
Day 1 1/8 tsp. 5 times per day
Day 2 1/8 tsp. 6 times per day
Day 3 1/8 tsp. 7 times per day
Day 4 1/8 tsp. 8 times per day
Days 5,6,7, continue at 1/8 tsp. 8 times per day
****Two alternatives are listed for week 3 because many people have a hard time taking 1/4 tsp. at a time. Smaller amounts are easier to take.
Other antifungal medications
There are both over-the-counter remedies and herbs and other prescription medications that kill yeast. Dr. Shaw has written about them in this book. In my experience, nystatin is the most effective and least toxic means to fight yeast. The problem with the other medicines is that they are absorbed and have toxic side effects. Both Diflucan and Nizoral can affect the liver. Thus they can only be given for a short period of time. Once they are stopped the yeast can grow back.
Nystatin is a totally natural substance that pharmaceutical companies have harnessed and made a prescription medication. Nystatin has been available longer than 35 years. According to all of the literature on it, including the standard PDR (Physicians Desk Reference) nystatin has no known toxic side effects. Apart from some possible nausea during the first few days, there really are no side effects from nystatin. It can be taken indefinitely because it is not absorbed into the blood stream. Nystatin acts only in the intestinal tract. Autistic children must be treated for a long time to allow their brains to recover and develop as much as possible. Treatment for a few weeks is not sufficient. The only drug which can be used for long periods of time is nystatin. My son, for example, has been on nystatin for more than six years, with no ill effects.
How long does treatment last?
Parents are accustomed to treating problems for a few days or weeks, then stopping treatment. Usually other people, including some doctors, encourage them to cease treatment to see what happens. This is unfortunate, because many people never resume treatment, even when they see their child's behavior deteriorate. They assume that the treatment did not work.
When treatment is stopped, so do the gains made while on the treatment, and, if you are unlucky, your child may lose all of the gains over time. Dr. Shaw has tested children for whom nystatin doses are simply reduced and he has shown that toxic yeast chemicals in the urine increase when the nystatin dose is reduced. Unfortunately, the yeast come back when nystatin is stopped.
Anti-yeast treatment is a long-term treatment, and it is effective in combating autism.
How does the anti-yeasttreatment compare with standard psychiatric medication for children with autism?
I am a child psychiatrist and have prescribed many medications for children with autism, including Clonidine, Ritalin and others. Not one of the children on any of these medications has done as well as any of the children on the anti-yeastdiet and nystatin.
One medication to consider adding to the diet and nystatin treatment is naltrexone. This is most effective when combined with the Stage III diet (anti-yeast and free of casein and gluten). Naltrexone blocks opioids in the brain. I said above, the opioids from milk and wheat may slow the brain down. At low doses, naltrexone may help clear the brain of opioids which have already gotten into the brain. Unfortunately, the doses of naltrexone which have been used in academic studies have been too high, and the studies show that sometimes naltrexone has the opposite effect of what is intended. These studies also have not combined use of naltrexone with elimination of dairy products and wheat. In my clinical experience, the best results are obtained from naltrexone if dietary opioids are also eliminated (that is, dairy and wheat), and using a very low dose of 3 to 6 milligrams per day (the pills are 50 milligrams each). The doses used in studies have been 25 to 50 milligrams per day, and in my experience, those high doses can cause children to have increased pain and headaches.
Are Vitamins Necessary?
I do not recommend any vitamins until the Stage III diet, or the last stage prescribed for your child, has been in effect for several months. The recommended diet contains all of the vitamins a child needs. Many picky eaters become good eaters after eliminating the foods they were eating that were causing stomach and other problems. Eliminating toxic yeast chemicals from the diet, eliminating casein and gluten, and treating intestinal yeast are the first priorities. After six months of continuous treatment, parents may wish to experiment with vitamin mixtures, described elsewhere in this book.
Are there any other natural substances to treat autism?
First, remember that although nystatin is a prescription medication, it is a totally natural substance.
There are many other possible substances advanced to treat autism. Again, I do not recommend trying any until the Stage III diet, or the most restrictive diet prescribed for your child, has been in place for at least six months, and with the consultation of your supervising doctor. Eliminating toxic yeast chemicals from the diet, eliminating casein and gluten, and treating intestinal yeast are the first priorities. After six months of continuous treatment, parents may wish to experiment with substances.
One herb I have found helpful is called ginkgo biloba. This herb opens up blood vessels. There is evidence that blood flow is reduced in the brains of autistic children. Ginkgo may help reverse this lack of flow. I think ginkgo may be most helpful when combined with anti-yeast treatment. The brain may be closing down the blood flow to protect itself from toxic yeast chemicals. When these are removed, ginkgo may do more good.
Conclusion.
I would advise any parent of an autistic child to try treating their child with diet and nystatin. The presence of yeast chemicals in the urine can be verified using Dr. Shaw's test. Symptoms such as skin problems, diarrhea, constipation, and behavioral problems following antibiotic use also strongly suggest an overgrowth of the intestine with the yeast Candida albicans. Following Stage I of the diet and using nystatin for two to four weeks will tell you if the treatment is beneficial to your child, with no adverse effects or risk to your child.
I have treated many children with autism who showed significant gains by
following the diet prescribed along with the nystatin. I have designed the
dietary regiment to allow for a gradual transition to the yeast-free level
of least intervention necessary for your child. The nystatin dosing schedule
is similarly graduated to provide for the least die-off effect. Combining
the two will yield gratifying results, for you, your child, and your family.
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Biological Treatments for Autism and PDD Online > Chapter 8: Part I | Part II