First Steps

 

 

Keep good records

Keep Good Records

You know your child better than anyone and are therefore in the position to make the best daily observations about your child. It is important to be scientific in your approach to helping your child: keeping records of changes you are implementing and any changes you observe. Most of our parents have a large notebook where they can keep records, write observations and store lab reports.

Start by making a problem list and note the areas of struggle or difficulty for your child. These may Include:

  • problems with sleep,
  • eating issues (sensitivities, restrictions)
  •  stools (including frequency, odor, color or texture),
  • speech,
  • understanding and problem solving
  • susceptibility to infections (ear, colds, strep, etc)
  • sensory difficulties
  • obsessions
  • social difficulties
  • stims (hand flapping, jumping, echolalia, repeating movie scripts, weird sounds)

Score or rate the severity of each problem, with a grading system, for example where 1 = very mild and 5 = very severe.  These two steps, while sobering and possibly depressing, will give you a baseline and help you to better identify changes related to interventions and development.  Review and update the ratings every week or so, making sure to add any more problems which may be occurring.  Small changes may not be recognized without keeping a log such as this.  Most children who make large gains show slow, gradual progress, rather than dramatic and obvious changes.

Implement One Change at a Time

In order to see what helps your child and what is not useful, you need to develop a methodical system for introducing interventions. Make a habit of changing one thing at a time asking four questions:

  • Is it tolerated?
  • Is it helpful?
  • If it is helpful, in what ways?
  • If it is helpful, how do we maximize the noted benefits (dosage, frequency, etc.)?

For example, if elimination of corn is beneficial, we might ask whether further dietary changes could provide additional benefit. This might lead to a trial of eliminating other starches or other grains in same food family as corn.

Start with Your Child’s Diet

Healthy Eating Tips

The best place to start making changes is with the diet. Start by eliminating “nonfood” items and empty calories from your child’s diet. This includes eliminating sugar, corn syrup, agave, artificial additives such as dyes, artificial flavors, sweeteners, MSG, or other nonfood ingredients. This may be difficult with a child on the autistic spectrum, who may be very rigid about food choices. This can be a step-wise process over a period of weeks, or it can be an overnight change. It’s worth the effort; as you begin to improve his health you’ll most likely see improvements in functioning. Be assured, there is no risk of causing harm by removing empty calories and nonfood items from his diet.

The next step with diet is to eliminate the four foods which most commonly cause problems in children with autism and related disorders: casein (all milk products including butter and ghee), gluten, corn, and soy. This can be done in one step, or by addressing one group at a time. These foods are common allergens, but also cause problems in other ways through indigestibility and production of neurotoxic by-products which act like morphine in the body. Gluten avoidance includes wheat, barley, rye, and “gluten free oats,” which contain a gluten-like protein that causes problems for most children with autism. We recommend a trial of three to six months to see if these dietary changes are helpful. Other interventions may be started after your child has been on the diet for a week or so.eat-organic-food

This step is a very powerful intervention for the majority of children on the autistic spectrum, often bringing improvements in neurologic function, intestinal symptoms, behavior, sleep, and other areas. It is frequently difficult and daunting for parents to make these changes, as so many children with autism related disorders are basically addicted to some or all of these foods. In general, if your child has a strong craving for a food, it is most likely that your child has an allergy or sensitivity to that food. It may seem as if your child will starve without her chicken nuggets, pizza, ice cream, or corn-based breakfast cereal. You may feel as if you’re abusing your child by taking away his comfort foods. Be aware that he won’t starve in a few days, or even in a few weeks, as long as you are feeding him the permitted foods which he’ll accept. It is, however, critical to be sure that he is getting enough fluids while you rearrange the diet. This can include water, fruit or vegetable juice, herbal tea sweetened with honey, coconut water, smoothies, frozen confections such as home made sorbet, etc.

As you begin to win the battle of nerves with food, work on getting sufficient protein into her diet. For a five year old, this daily need can be met by as little as four ounces of meat or four eggs or two cups of homemade bone broth (which can be used to make fruit juice—yukky thought, but doable for the little one who won’t knowingly eat protein). Combinations of vegetables, grains, nuts and beans can easily meet the protein needs if your child is inclined to be a vegan.

Next Add Basic Supplements

Adding supplements is the next reasonable step toward improving your child’s health and function. Some of the suggested supplements are so commonly lacking in our diet that it is safe and acceptable to add them without testing for deficiencies. These include zinc, omega III fatty acids, vitamins C and D, magnesium, and, in the dairy-free child, calcium. Also, vitamin A is often needed.

And so, for an average-sized five year old child, give the following daily:

  • Zinc (15-30 mg)
  • Cod liver oil (1-2 tsp)
  • Vitamin C (500mg)
  • Vitamin D (2000 units),
  • Magnesium (100-300 mg)
  • Calcium 200- 400 mg  (if dairy free)

These supplements should be added one at a time, with spacing of one week or so and with the recording of any improvements or signs of intolerance. As we are repairing deficits of nutrients with widespread effects, many improvements may be noted. Classically, with zinc we may see improvements in sleep, immune function skin, growth, and sometimes appetite (taste buds). Cod liver oil may improve eye contact and decrease strange eye movements, agitation or hyperactivity, and enhance skin health and immune defenses. Vitamins D and C have major importance in immunity, and helps with detoxification and decreasing oxidative stress. Magnesium may help with calming, sound sensitivity, sleep, and constipation. Calcium may also be calming and is often helpful with children who press on or gouge their eyeballs. These children may require higher doses up to as much as 2000 mg per day.

Be aware with mineral supplements, that labeling can be confusing, as the minerals are actually a salt containing two ingredients (e.g. calcium carbonate, zinc picolinate, magnesium glycinate, etc.). In each case, the second component is heavier than the mineral, and the label needs to be read carefully to obtain the desired dose. For example, a bottle of calcium carbonate may read “l000 mg”. The fine print may show that 2 capsules provide 1000 mg of calcium carbonate (and may or may not tell you that calcium carbonate is 40% calcium, so that 2 capsules give you 400 mg of calcium and 600 mg of carbonate). When we speak of dosages of mineral supplements, we mean elemental minerals, or the mineral itself, and not the entire compound.

Administering Supplements

You will undoubtedly meet resistance when you decide to give your child a strange tasting powder or oil, and succeeding with some of the unpleasant tasting supplements requires ingenuity and perseverance. When Dr.Bernie Rimland, sometimes called the Father of biomedical treatments for autism,, was asked by a parent how to get her child to take supplements, his succinct answer was, “Who’s bigger?”. It usually requires tough love and experimentation. I also encourage parents to be honest, telling their child, “This is medicine,” which means 1) “You have to take it,” 2) “It probably tastes bad,” 3) “It’s good for a person,” and perhaps 4) “It’s the doctor’s orders, not mine, so don’t blame me, I’m sorry it tastes bad.”

The most reliable to administer supplements is with a medicine syringe, just as you would give an antibiotic. You can likewise sweeten it with juice concentrate, maple syrup, etc. If you use a syringe you’ll most likely have to train your child to accept the syringe, by repeated practice. One of our patients who had a severely restricted diet, but learned to accept the syringe, would eat soup from a syringe, but only if she was told it was medicine. Other parents have found smoothies or homemade sorbet or fruitsicles, or for the rare child who eats it, soup, to work as a vehicle to administer supplements. Failing this, several companies have formulated many of their supplements in naturally flavored, sugar free liquids or powders to make them more palatable. And some supplements such as zinc, vitamin D, magnesium, calcium, buffered vitamin C are easily concealed in juice or food. We are happy to recommend specific brands of supplements and remedies should you choose to work with us.

Introduce Probiotics and Digestive Enzymes

If your child has bowel problems of any sort, or a history of repeated infections and antibiotics, it is reasonable to offer help with probiotics and digestive enzymes. Probiotics, or beneficial bacteria for the bowel, come in a variety of forms and packages. In brief, we would add a combination containing strains of Lactobacillus and Bifidus, in doses between 20 billion per day and 900 billion per day. You’ll be using capsules or powders which list dose and strains information on their label. Some children respond much better to one product than to another, and so it is worth trying one brand for a few weeks, and then switching to something different (e.g. one containing Bacillus Subtilis or Saccharomyces Boulardi), if no improvements are noted. It may be particularly beneficial to feed your child cultured foods such as coconut kefir or sauerkraut or unpasteurized pickles or other home cultured foods which contain lots of good bacteria.

In addition to probiotics, digestive enzymes may provide considerable benefit for abnormal stools, abdominal pain, food intolerance, and difficult behaviors. As with probiotics, there are a number of good products available, and it is useful to try several different preparations in order to obtain the best results. It is valuable to do a two to three week trial with at least two different preparations, including a plant based enzyme and a pancreatic (animal based) enzyme, as their effects can be quite different. A small number of children react negatively to probiotics or to enzymes, and can’t take hem (but may benefit at a later date after correcting other factors such as bacterial or fungal overgrowth).

Supplements for Specific Conditions

As you add supportive therapies, be sure to continue to reference your problem list and grading system regularly, to address the four questions posed above. Next we want to consider more selective supports, based on your child’s symptoms and diet.

Autism and related disorders are very complex and each child’s physiology is unique. While none of the above-listed interventions are dangerous, choosing the right supports and their proper sequence can get very complicated. When possible, it is best to work with us or another trained physician to guide you in the supplementation process.

Children Who Don’t Eat Meat

If she doesn’t and hasn’t eaten meat in her life, iron will be most likely deficient, and can be safely supplemented at 15-30 mg per day. (Blood testing by your physician for Fe and TIBC and/or ferritin will identify iron deficiency if present). Iron may improve energy and immune function, but can be constipating. If you are supplementing iron and/or zinc, the blood levels should be checked within 6 months, to be sure that iron or zinc levels don’t get too high, or that zinc doesn’t cause copper to drop too low. We would like to see both serum zinc and copper levels at 100 mcg/dl.

Children Who Eat Few Fruits and Vegetables

If your child eats very few fruits and vegetables, B vitamins and trace minerals (including selenium, chromium, manganese, molybdenum in particular) may be helpful. Many supplement companies make balanced trace mineral supplements which also contain 10-25 mg of zinc, thereby replacing your zinc supplement.

B Vitamins

B vitamins, while grouped as a single type of supplement, mainly because they are water soluble and work somewhat in concert, are actually very different one from another, and deserve a separate discussion. Our children are most commonly helped by methyl B12, B6, reduced folic acid (folinic acid or methyl folate), and B3. Contrary to popular opinion, it is not necessary to give all the B vitamins when supplementing, though there is often a deficiency or need for several of them which may benefit from a complete B supplement. We like to give methylB12 as the first B vitamin, preferably by injection, and have found this to be of great benefit for a significant number of children we treat.

Marcin-giving-Polly-MB12

Notable benefits in speech, understanding, sleep, behavior, mood, energy, and executive function have been noted in children with autism related issues. A small percent of children become hyperactive after methylB12, and need to have lower and/or less frequent doses or be switched to hydoxyB12. A very small number simply do not tolerate B12 at all. Please note that B12 is far more effective by injection than by oral route or lotion or nasal spray.

If your physician is willing to write a prescription for it, we can provide information regarding compounding pharmacies to assist you in getting your prescription filled. We can also assist in providing guidance about how to safely and easily give the shots (which are very nearly painless, except for the angst of the parent giving the shot). The usual starting dose is (methylB12, 25 mg/ml), 0.01 ml per 10 pounds of body weight, given by very shallow subcutaneous injection every 3 days. If you can’t get injectable methyl B12, it may be of value to do a trial with oral methyl B12, available as lollypops, lozenges, powder or pills.

Vitamin B6, in combination with magnesium has been used successfully in autism for decades, and shows benefit in around 30% of children. When effective, it seems to help make children more comfortable in their bodies, calming and improving problem- solving through communication and better access to their own resources. Starting doses of around 50 mg are commonly used, and may be increased incrementally up to maximum of 8 mg per pound. It should be combined with magnesium in the doses described above. Vitamin B6 can cause a sensory nerve problem in high doses, but there has been no demonstration of this problem in autistic children receiving these maximum doses over long periods of time. However, as always, it is essential to be gentle and observant. We don’t raise doses if we see signs of intolerance, which consist of agitation or disturbed sleep, and if these symptoms occur, it should be discontinued. A later trial may be beneficial when the digestive tract is functioning well, and when the child has a good intake of protein.

Folinic acid or methyl folate are active forms of folic acid which work together with B12 to enhance energy production and transport, neurotransmitter synthesis, myelin production, detoxification, cellular communication, immune function, gene expression and regulation. Folic acid, which is found in many supplements, but not in foods, requires activation by an enzyme which is frequently impaired in children with chronic health problems. As a consequence, it is preferable to use either folinic acid (available by prescription as Leucovorin, or over the counter) or methyl folate (available by prescription as Deplin, or over the counter). Support of the folate pathway is frequently helpful in children with autism, and is extremely safe, even at very high doses. Children may become agitated if dose is excessive or if they are hypersensitive. Starting with a dose of 400 mcg (0.4 mg) per day, one may raise the dose by doubling every 5-7 days, to a dose of 1600 mcg. We have found that some children need extremely high doses of 5000 to 80,000 mcg per day, due to a blockage in the mechanism for transport of folate into the nervous system. These extremely high doses are best given by prescription (Leucovorin is available in 25,000 mcg tablets, and Deplin in 15,000 mcg tablets). It is important to note that blood levels of both vitamin B12 and folic acid are a poor indicator of nutritional status, as these vitamins are critical in brain function, and blood levels correlate poorly with brain levels (due to impairments in brain uptake of these vitamins from the blood stream, which has been identified in studies of children with autism). If the blood levels are low, then the brain is likely also deficient, but if blood levels are high, this may indicate a block in brain uptake, with actual brain deficiency.

Vitamin B3 (niacinamide, also niacin, which is a form of B3 better avoided in children with autism, as it may cause intense and unpleasant flushing), has also been called the “sleep vitamin,” as it enhances serotonin and melatonin levels. Niacinamide thus may be calming, and it sometimes helps reduce stimming behaviors. It also is essential in the energy and antioxidant pathways which are so critical to healthy brain function. Niacinamide should be given with an equal or greater dosage of supplemental vitamin C (for 500 mg of B3, give at least 500 mg vitamin C). The usual doses in 40-50 pound children are 250 to 500 mg per day. In very high doses, vitamin B3 can cause liver stress, which is always associated with nausea and or decreased appetite. And so a reduction in appetite should be taken as an indication to stop B3 and/or check the ALT liver enzyme level in blood.

Though TMG, DMG, and DMAE are not officially B vitamins, they are water-soluble nutrients which are safe, occur naturally in the brain, and are often helpful in children with autism related disorders. Both TMG and DMG help improve immune function, and may improve speech, awareness, and attention. Both can cause overstimulation or agitation, and TMG is somewhat more likely to do so. If this should occur, the child will calm down to baseline within a day or two of discontinuing the supplement. Some children clearly respond better to TMG, and some to DMG, and some to the two together. For TMG, we use doses of 175 mg to start, and may move to doses as high as 1000 mg per day with further benefit. One good study used a TMG dose of 2000 mg per day without problem in any of the children. For DMG, we generally start with 125 mg per day, working up as tolerated to 500 mg or higher per day. Dr. Rimland reported that children with severe agitation or aggression have , in some cases ,responded to DMG doses of up to 2000 mg per day.

DMAE has brought improvements in disposition, behavior and language, with doses of 50 to 300 mg daily. Higher doses are safe, and could be used if the child is showing encouraging improvements on lower doses. Occasionally, children will become agitated on DMAE, and it must be discontinued.

General Comments Regarding Supplementation

It is worth commenting on the experience that children with autism may react paradoxically to almost any remedy offered. While dangerous reactions are extremely rare (except for the possibility of harm to self or others if a child becomes extremely agitated or aggressive),it is not uncommon in many parents’ experience that their child will react unpredictably to some interventions. The most common adverse reaction is agitation, which most likely reflects a discomfort he’s not able to explain. In some cases, the agitation is a sign of a healing crisis, or a healthy readjustment occurring with some resistance. Nevertheless, in all cases it is an indication to reduce the dose, or stop the remedy and provide further support to the body before offering it again. This experience is in line with the finding that children with autism are often very different from one another, so that it is not reliable to predict an effect in one child based on an effect seen in another child. We need to work with our child as an individual, while still learning from the experiences of other children.

While all of the remedies and interventions described above are safe and approved for use without prescription, we strongly encourage you to work with a physician. It is best, when possible, to establish a doctor-patient relationship with the Evergreen Center. If you do not have physical access to our center or to a physician supportive of your work with your child, please contact us for further education and support at info@childrenandautism.com.

The above described remedies represent a good group of supports which should help to improve your child’s health, and may also improve many of his symptoms and problems. Autism is very complex, and there are many more interventions, sometimes including prescription medications which may be needed to make further gains. These include herbal supplements, sulfur supports (glutathione, NAC, Epsom salt baths, MSM, taurine), other vitamins (B’s, K, E, carotenoids, biopterin), amino acids, laxatives, prescription or natural antimicrobials (for parasites, yeast, bacteria) both, hormones (thyroid, cortisol, growth hormone, oxytocin, secretin), detoxification remedies (chelation, intravenous remedies, etc.), anticonvulsant medications, intestinal anti-inflammatories, and so on. As we learn more about autism, promising new remedies emerge, which are especially helpful with some of our children.