Intro:
When I read books or articles on recovery, I often find myself asking: what biomed therapies did the parents do and how did they do it? So I am writing this to detail exactly what I am doing with my son and to share my experience with chelation with you. First and foremost, the safety of my son has always been my first priority. I went into chelation with a lot of hesitation and concern. I read all the bad press and all the things the detractors had to say on the topic, most of which seems to be against IV EDTA. It took me 9 months of doing other biomedical interventions and a lot researching before I actually started to chelate my son.
I also spent months talking with other moms who were either currently doing it or had already recovered their kids with it. Talking to other moms and hearing how safe and effective Cutler’s protocol was, that was what ultimately made me go for it. I also found a doctor in the next state, who had an autistic son and under his supervision and with the help of an online support group, I began chelating my son in late August, 2010, when he was 3 years 3 months old.
When I started, chelation therapy went against the wishes of my husband and my parents. I deeply regret that I did a trail run without my husband’s approval. He was just getting on-board with chelation, but wanted to wait 2 more months. I however, was ready to go for it. I felt that since I was the one who did all the research and implemented all the biomed therapies with our son, it wouldn’t be that big a deal to go ahead and start. Our son had recently turned 3 (May 2010) and he was not speaking. It was now the end of August and I felt an urgency that something had to be done now, the younger the better. I had already tried many supplements, methyl B12 shots and CFGF diet, which had already been in place for about 9 months. These interventions were just not having much of an effect at all on my son. My son was lost to me; I could not reach him and I was heart-broken.
Chelation turned everything around. During that first trail in late August 2010, my son said his first real sentence! I was hooked; I new this was it! This was the intervention that would cure my son; this would get to the root of his problems. When I talk about cure or recovery; I mean that no further interventions are needed, no special supplements are required and the autism diagnosis is no longer valid.
That said; I want to be honest about chelation. While I think it is just about as close as you can get to a magic bullet; it is not a magic bullet. It takes a lot of time and a lot of rounds for our kids to get better. The first few months were hard, because as a parent, I had high expectations and I had to deal with the fact that chelation is a longer process than I had initially thought and it took a few months to see clear results. Plus, I had to constantly reconsider my supplements and tweak the chelator doses.
Managing expectations during any biomedical therapy is hard, but when you think of the alternative, how mainstream medicine tells you that there is nothing you can do, chelation beats that, hands down. I honestly do not think chelation is harmful. No one has ever died from taking oral DMSA or alpha lipoic acid; alternatively, many children have died from vaccines and they are mandated for all kids.
Most DAN protocols call for high doses of chelator, closer to 10mg/kg every 8 hours. This is a lot of chelator for a child. An ASD child already has issues excreting toxic metals, so pulling large quantities into the bloodstream may result in a mega dose of metal redistribution. I know many parents who started with the DAN protocol, which gave great gains initially, but later, resulted in regression. If I were to follow DAN chelation with my son, he would be taking 200mg every 8 hours! Instead he takes about 20mg total, DMSA + ALA, every 3-4 hours. The one time I went up to 25mg; he got very achy and fatigued the day after round. I really can’t imagine giving him almost 10 times his current dose.
Protocol Basics:
I chelate my son every other weekend, using Cutler’s protocol, with DMSA and ALA or alpha lipoic acid. (A word of advice: never try more than one new supplement or intervention at a time, that way you can tell what is creating a negative or a positive effect.) I started conservatively within the first 2 months, using DMSA alone and then I added ALA. DMSA is the generic of the prescription drug Chemet. Chemet is FDA approved for use in children over 1 year old. ALA is natural, it is considered an antioxidant and it is found in small quantities in food. You can add ALA as soon as the second round. Some moms use only one chelating agent, usually ALA, which acts like a phospholipid in that it is both water and fat-soluble and has the ability to cross cell walls as well as the blood brain barrier.
A lot of moms use the 3/4 protocol, which means they chelate every weekend. I use Cutler’s 3/11 protocol or 3 days on, 11 days off, which means every other weekend. Regardless of which protocol you choose, you must take at least as many or more days off round as on round. In other words, if you are on round for 3 days, you must wait at least three days before going back on round. It is recommended not to go on round any less than 3 days or the entire weekend. My son starts chelating when he gets home from school on Friday at 2pm and he takes his last dose at 8am Monday morning. I dose him every 3 hours during the day and every 4 hours at night; this gives him a total of 20 doses over the weekend. I prefer 3/11 because I feel that it doesn’t deplete him of some essential metals, like copper and zinc and it gives him extra time to recover from rounds.
Dosing for Cutler as you can see is frequent. The reason behind the frequency is to keep the level of chelators constant in the bloodstream and to prevent redistribution during round. Some redistribution of metals occurs the first day after round, which can cause symptoms such as: minor fatigue or hyperactivity, crankiness, increased stimming and achiness. Dosing is always kept low to keep redistribution minimal. Cutler protocol calls for dosing of 1/8mg to 1/2mg per pound of child. To give you an idea of how low that is; dosing for Chemet, the prescription brand of DMSA, is 10mg per kilogram of child or around 4.5mg per pound of child. Chemet is also dosed less frequently and over a course of about 2 weeks; this dosing was established to chelate for lead toxicity, not mercury or any other toxic metal.
DMSA and alpha lipoic acid are available for purchase in health stores or online vitamin sites. I use Kirman Labs ALA 25mg and DMSA 25mg from Vitamin Research Products (VRP) and divide the doses in orange juice. I started dosing my son at 1/9mg per pound or 5mg DMSA. Over the first 2 months I slowly increased the dose to 8mg DMSA. I initially started on the 3/4 protocol and then decided to switch to 3/11. I recommend starting at the low side of Cutler’s mg/lb range and slowly moving up, especially if your child is unable to tell you how he is feeling. Stay at a particular dosage for at least 3 rounds and carefully watch and note any reactions. It is recommended that you not increase a dosage by more than 50%. As with any detox protocol, I would recommend giving a lot of fluids while on round to help increase excretion of toxins.
I noticed that my son seemed more giggly, stimmy and fatigued on DMSA alone. If you feel that you dosed too high, next time take the dose back down to where your child was more comfortable. As per Cutler’s rule, never exceed the 1/2mg per pound limit. Doubling a dosage does not double the amount of metals excreted and the added discomfort to the child is just not worth it. For best results, stay low and go slow. The child’s comfort is the priority.
I was apprehensive about adding in the ALA, but looking back it was all for naught. Once I added ALA by mid-November, chelation rounds went more smoothly and I noticed fewer side effects. I was already at 8mg DMSA; so I added 8mg ALA; which was between 1/5 and 1/6mg per pound for my son. At the time of writing this I am at 8mg DMSA and 12.5mg ALA. I decided to keep DMSA low and increase ALA. DMSA seemed to have more side effects for my son and I have read that long term, dosing of DMSA can lower the neutrophil count, which is a type of white blood cell. To avoid that, I am keeping DMSA at 8mg for now. I will have to adjust the dosage as he gains weight. I tried dosing ALA up to 16.7mg once in the spring, but the redistribution the Monday after was too uncomfortable for my son and I haven’t tried that dose again.
What worried me most about starting chelation, was that my son couldn’t express how he was feeling. He seemed happy and comfortable, but there was no way to really know. I stuck with it and dosed conservatively. After about 6 months, he was able to express well enough how he was feeling and that made chelation much easier to administer. My son is pretty good about chelation. It’s a lot easier to get him to take the chelator mix than it is to get him to take his vitamin mix! During the nighttime doses, I just say: 1-2-3, real quick, sweety! It usually goes fine, sometimes my son turns his head away, but I just persist until he takes it. Squirt mix into the cheek, not straight down the throat that way the child will not choke. You could also squirt the chelator mixture into a bottle, add a little extra juice and give it to the child.
It’s hard to say how long you need to chelate a child. I can’t tell at this point how long it will take, but Cutler estimates rounds or 1-3 years if you chelate every weekend and double that if you do it every other weekend. So I’m looking at about 2-6 years of chelation therapy. I occasionally run a urinalysis during my son’s rounds to see levels of toxic metals being excreted. When I see no metals reported in his U/A, it should give me an indication as to when to stop. If a child has a mild or tolerable reaction to chelation, like I mentioned above, it means that toxic metals are a problem and the chelators are moving them around and out.
Precautions:
Once a child starts chelation, it is important that you stop vaccinating altogether, otherwise he or she will continue to be injected with thimerasol (from the flu vaccine) and aluminum and ethyl mercury (from other vaccines.) You should not chelate when the child is sick or has a fever. You cannot chelate a child who has silver dental amalgams; they must be properly removed first. Andy strongly advises not to ever do a chelation challenge test, which uses a high dose of chelator for the purpose of testing for toxic metals. Furthermore, a negative challenge test could be misleading, as there is no way to predict which metals will show up first.
Andy also advises against IV chelation, transdermal chelation or using suppositories. Other options include cilantro, NDF and zeolites, which Andy also advises against as these methods are unproven and untested. Cilantro actually does chelate metals, but doses are not established and the active ingredient is unknown. DMPS is an option, but it requires a prescription. It is administered every 8 hours, based on its half-life. DMPS is not FDA approved. Andy recommends oral DMSA and ALA as per the frequent low dose protocol only.
Some multi-vitamins contain hundreds of mg of ALA. Andy advises against using alpha lipoic acid as part of a daily vitamin supplement, both for adults and children. One large dose of ALA could result in a mega dose of toxic metals being redistributed. While ALA is naturally found in certain foods, like organ meats, spinach, broccoli and tomatoes, it is in very small amounts. I have on occasion taken supplements containing ALA, but only in very small doses of less than 20mg. The safest way to use ALA is via low, frequent dosing.
This is only a summary of Andy Cutler’s protocol and my experience with it. For more in-depth information, please refer to his book, Amalgam Illness, available on Andy’s wed site or on Amazon. There are also many online groups that are dedicated to following this protocol. The Yahoo Autism- Mercury group is a good place to start. Andy is part of that group and answers questions; you can also search their archives. It is a public group.
My Chealtion Schedule and FAQ’s:
The following is my standard schedule. I start as soon as my son gets home from school on Friday and stop just before he leaves for school on Monday. During holidays, I may start 8am Friday morning and end 12am Monday or I may add another dose or two. I find that my son is done with taking his chelators after about 20 doses, so I don’t go too far beyond the norm.
Friday: 2pm, 5pm, 8pm,
Saturday: 12am, 4am, 8am, 11am, 2pm, 5pm, 8pm
Sunday: 12am, 4am, 8am, 11am, 2pm, 5pm, 8pm,
Monday: 12am, 4am, 8am.
Andy bases the timing on the half-life of the chelators, with the goal of keeping the levels constant. You can dose more often; that will keep chelator levels constant, even more so. Do not dose less often than every 3 hours during the day and every 4 hours at night. If you miss a dose during the day by more than 1.5 hours, you must stop the round. It you miss a nighttime dose by more than 0.5 hours, you must stop the round.
Chelator mixes last about 24 hours when mixed in orange juice. I only mix about 6 doses at a time. Since my son is at 8.3mg DMSA and 12.5mg ALA, I squirt about a teaspoon and a half of OJ six times into a cup (for 6 doses) and mix in 2 capsules of 25mg DMSA, 3 caps of 25mg ALA and 1 or 2 caps of 1,000mg vitamin C. Mix or shake chelation mixture before administering, as the chelators tend to settle.
Protein Disruption and Toxic Metals
The secret to glutathione is the sulfer it contains; sulfer acts like a magnet for bad things like free radicals, mercury and other toxic metals. Under normal conditions, glutathione is recycled in the body, but when the toxic load becomes too great, glutathione is depleted, which leaves us susceptible to toxic build up, free radical damage, infection and cancer. The unfortunate truth is that our bodies are not programmed to deal with all the chemicals and toxins that we are exposed to today and our nutrient poor diet of processed foods only exacerbates the problem.
Supplementing glutathione directly is not beneficial because glutathione is need inside the cells and supplements increase levels outside the cells. Rather than supplementing with glutathione, the best way to increase glutathione levels is to support the methylation pathway. Methyl B12, active folate or 5-MTHF and TMG are other methyl donors. Vitamin B6 and CoQ10 are also important in methylation. Selenium, along with vitamins C and E work to recycle glutathione. Alpha lipoic acid is another powerful antioxidant and taken as a chelator will also work to increase levels of glutathione. Milk thistle works to raise glutothione by supporting liver detoxification. Exercise is a fun, easy way to increase levels.
Metallothionein is a large sulfur rich protein that your body makes and it is found throughout the central nervous system and in the GI tract. Metallothionein is important in maintaining a healthy immune system. Some of its important functions include: yeast control, copper and zinc regulation, neuronal pruning activation, and heavy metal detoxifier. Like glutathione, its function becomes hampered by toxic overload.
G-proteins, or guanine nucleotide-binding proteins, work to communicate signals from hormones and neurotransmitters. Malfunction of G Protein-Coupled Receptor signaling pathways are involved in many diseases, such as diabetes, blindness, allergies, depression, cardiovascular defects, autism and certain forms of cancer. It is thought that the MMR depletes vitamin A reserves and the DPT disrupts the g-proteins. Supplementation of vitamin A in its natural form, as found in cod liver oil, works to reattach the receptor signaling pathways.
Chelation works to reduce the body’s toxic burden, thereby increasing the levels of these proteins and their effectiveness. It is my opinion that chelation gets to the root of the problem in our children and if done properly and early enough, our kids can recover. Chelating agents are organosulfur compounds, referred to as dithiols because they contain two carbon-bonded sulfhydryl groups. This allows the chelating agents to capture and hold on to metals in the body, resulting in increased metals excretion. Sulfur foods such as broccoli, garlic and eggs are thiols, but do not have the disulfide bond needed to effectively hold onto the metals.
Possible Side Effects:
DMSA or Dimercaptosuccinic Acid:
Elevated liver enzymes or low white blood cell and/or platelet counts; this is a sign of liver and bone marrow suppression. When adverse symptoms occur while using DMSA, they can often be quickly alleviated by reducing or stopping DMSA treatment.
ALA or Alpha Lipoic Acid:
Headache, tingling or a "pins and needles" sensation, skin rash, or muscle cramps. Alpha lipoic acid may improve blood sugar control, so people who are taking medication to lower blood sugar, should seek guidance from a qualified healthcare professional. ALA may also alter thyroid hormone levels, people taking thyroid medication, should check with their doctor and monitor thyroid levels.
This list may not be complete. Please do your own due diligence and check for yourself.
Required Testing:
DAN! docs recommend at a minimum the following blood tests every 3-6 months: liver and kidney function and CBC w/diff.
To see what metals are being excreted; you can get a Urine Toxic Metals test or a Fecal Metals test. You can get a baseline before you start chelation and then test again during a round. To see what is being excreted over a period of time, you can order a Hair Elements Test. You can order and submit these tests yourself using Direct Labs; you do not need a doctor’s order and the results come directly to you.
There has been a lot of bad press on hair testing. I find it useful in determining if levels are going down with chelation and to see if essential elements are normalizing. An inch or so of hair represents a few months worth of growth and is sort of like a summary of what went on during that timeframe. Unfortunately, blood or urine levels may be negative for toxic exposure if the exposure was not recent, making them unreliable, unless the child is taking chelators at the time of testing. Andy also has a book on interpreting the Hair Elements Test, which I would highly recommend. I do a hair analysis on my son every 3 months. I find that looking at trends is more helpful than just looking at one test and I can see how chelation and supplementation is affecting the results over time. Plus, it’s easy to do and non-invasive.
Excessive sweating can increase the result for sodium and use of a dandruff shampoo like Head and Shoulders could slightly increase the zinc result, because it contains zinc. In case you’re thinking of testing yourself, use of hair dyes will alter results. It is recommended to not test dyed hair, although you could try to let it grow out and test the untreated roots.
I provide this information as a guide only, for more information, please contact a medical professional familiar with treating ASD kids.
Yeast Control Options:
I am also not a big fan of anti-virals; I prefer the Terrain Theory to Germ Theory. I think that proper vitamin and mineral supplementation and chelation work together to support healthy immune function, making prescription anti-fungals and anti-virals unnecessary. Below are some ideas to help manage yeast when starting chelation. My own experience with chelation was that yeast initially got worse due to the increase in toxic metals being excreted, but after a few months it got better and it continues to improve as we get more rounds behind us.
Yeast-specific enzymes- a few brands are: Kirkman Labs Biofilm Defense, Pure Essence Labs Candex or
Enzymedica’s Candidase. These enzymes work to break down the biofilm that protects yeast and expose the yeast.
Natural anti-funglas- Kirkman's Yeast-Aid contains multiple natural anti-fungals, like Olive leaf Extract, Pau d’ Arco, Goldenseal, Caprylic Acid and Oil of Oregano. Each of these can be also purchased as a stand-alone either by Kirkman or elsewhere. Use sparingly, start low and increase dose slowly, these are strong and can cause a die-off or Herxheimer effect.
Probiotics- Kirkman makes a lot of good probiotics, the strongest being Super Pro-Bio with 75 billion CFU's; they also carry S. Boulardii, which is a beneficial yeast. Some people swear by ThreeLac or the newer version FiveLac. I didn’t find either to be anything special and I didn’t like that they don’t list the CFU’s. I cycle my son through 3 different probiotics: Culturelle, S. Boulardii and Pro-Bio Gold. Kirkman
Amino Acid Support- works to strengthen immune function via protein synthesis, specifically metallothionein promotion. My son has done well on the Amino Support.
Vitamin D3- It’s not only a great immune system supporter but it’s also a precursor hormone to a steroid called calcitriol, which helps with inflammation. Also of interest is that vitamin D works to tighten the junctions in the GI tract, which helps overall GI integrity.
Managing Expectations:
To recap, my son was diagnosed in November 2009 at 2.5 years old and I started chelating him at 3 years 3 months old, in August 2010. My husband and I decided not to tell anyone in our family outside my parents about our son’s diagnosis. We deliberated a long time and decided that this was nothing more than a psychological diagnosis made at a certain point in time; that it is not a fair label nor does it represent who our son is. Bottom line: we didn’t want him to carry that label forever and we didn’t want our family to treat him differently.
So by the time the 2010 holiday season rolled around, I was disappointed that after about 3.5 months of chelation, it was still obvious that he was speech delayed and he had some quirks that were becoming harder to explain away to relatives. The previous holidays weren’t a big deal as my son was only 2 and nobody really paid any attention to his talking or lack of talking. Now my son was 3.5 years old and my cousin was asking me, “Does he talk yet?” Her 3 kids, who were between the ages of 3 and 7, kept asking things like: “Why does he keep saying that?” (They were referring to his jargon talk.) “Why is he standing on that window seat?” “Why did he take his pants off?” Etcetera, you get the picture. After Thanksgiving, I was tired of all the questions, but I tried to not dwell on it. By Christmas, I felt like strangling my cousin’s kids or crying or both!
My husband has been my rock throughout this process. Even though he was very unsure about biomed and especially chelation, now he is the first to admit that chelation works. He is the one who keeps me going and reminds me how far we have come. When that doubt creeps into my soul, and it happened a lot in the first year after diagnosis and also during the first few months of chelation therapy, my husband was always there to tell me how thoroughly he believes in our son’s ability to recover.
During the first 4 months or so of chelation, we were still operating in “crisis mode.” I am happy to report that after 9 months of chelation and 18 months of biomed, we as a family are no longer in crisis mode, not only that, we are well on our way to recovery as a whole family. I never thought PTSD (post- traumatic stress disorder) could describe me; but that was one hard first year. It’s those challenging days that can bring all those old fears back; I’ll be sailing along for weeks and then all of a sudden we’ll have a tough day or someone will say something hurtful and I’m down for the count; sometimes it takes me a while to recover again. The first year after diagnosis is the hardest. It rocks your world and I mean that in a bad way. It does get better, I promise.
To Talk or Not to Talk About Biomed
This is a very individualized thing to consider. I’m referring to telling other people, family members, your pediatrician, etc that you are doing biomedical treatments with your child. You have to weigh your child’s privacy versus the importance of spreading the message that autism is treatable and you have to try to judge how open to it, the person to whom you’re talking is. I think that I am pretty open compared to some of the other biomed moms I know.
Our family, outside of my parents, does not know about our son’s diagnosis, so I don’t talk about biomed with them. Those that know about the diagnosis, like my son’s teachers and his pediatrician, know that I do biomed. I haven’t specified what I do to his teacher; but I make it known that I believe autism is reversible and that I am working toward recovering my son. If his teacher ever asked, I would explain what I do and why it works. I have been honest with the pediatricians. I say exactly what I do and I say right off the bat that we have stopped vaccines and it is not open for debate.
Remember to Take Care of Yourself!
Important Supplements:
Taking care of yourself is important throughout this process regardless if you use chelation therapy or not. I recommend at least taking a good multi-vitamin, something strong and well absorbed, like My Favorite Multiple by Natrol. If you go on to try chelation; it will wear you out to get up at night all weekend long. Because of this, it is a good idea to support your adrenals with an adrenal support formula that contains adrenal cortex and licorice root and thyroid support that contains l-tyrosine. These supplements will help to make facing Monday morning tolerable. A high dose B complex vitamin is also a good bet because B vitamins are coenzymes in many important biochemical pathways and B-100 formulations are readily available.
Probiotics are a good idea for you as well as your child. There is a lot of research and so much info available about all the benefits of probiotics; I can’t recommend them more highly. Great products are Culturelle, Five Lac and Kirkman Labs has some good formulations as well. Be sure to choose a formulation with at least 10-30 billion CFU’s or colony forming units. Anything less would be like throwing a needle in a haystack.
I also strongly recommend taking a multiple amino acid formulation. Amino acids are the building blocks to so many important proteins in the body. Kirkman has a great formulation available in either powder or capsule.
Something that’s been getting a lot of press recently is vitamin D. Not only is it a vitamin, but it’s been discovered to be a precursor hormone, a building block to a powerful steroid hormone called: calcitriol. We already know that vitamin D increases absorption of calcium and phosporus, building strong bones and teeth; but researcher have also discovered that vitamin D promotes normal cell growth and differentiation, (ie. prevents cancer) promotes insulin sensitivity and blood sugar regulation, is key in maintaining hormonal balance and a healthy immune system and it regulates over 200 genes through binding to vitamin D receptors. Adults can safely take 4000-5000 IU per day. Sunlight is the best, most easily absorbed source of D. However, due to skin concerns, sunscreen usage and depending on the season, it may be in short supply. D deficiency has been linked to obesity, insulin resistance, heart disease, cancer and depression. It has been estimated that about 85% of Americans are vitamin D deficient! Also of note is that almost all people suffering from autoimmune disorders are vitamin D deficient.
An important and easy way to detoxify yourself is through sweating!! I would recommend sweating profusely at least 3 times a week for 30 minutes each. You can use a sauna or the best of all, exercise, whether it’s jogging, cycling, yoga, lifting weights, whatever, it’s a great way to detoxify; you will feel better, look better and your overall health will improve!
Other things to consider:
Another great supplement to consider is l-carnitine or acetyl l-carnitine. Like coenzyme Q10, ALCAR feeds the mitochondria and helps with fat metabolism. One thing we don’t get enough of in our diets is Omega 3 fatty acids; based on my own research, I think DHA is more important than EPA. Try to find a strong formula with a ration of 4:1 DHA to EPA. I take the brand, Health From the Sun because it contains 800mg DHA. Resveratrol has some promising animal studies supporting its use as a powerful antioxidant. In a study on rats, it was able to counter the effects of malnutrition.
I also recommend milk thistle, which aids in liver detoxification. Specific enzymes are optional, used therapeutically and taken between meals. Enzymedica has good quality products and offers a lot of different options. For example, I give my father Lypo Gold, which contains enzymes that breakdown fat, called lipases. Taken between meals, they work to cleanse the blood of fatty deposits; taken with meals, they aid in fat digestion.
Basic Supplements for ASD Kids:
This is a tough topic to tackle, since our kids are so individual. I will share what I give to my son and a brief reason why. It is so important to know why your child is taking each supplement, because it is too easy to just keep adding on as you get advice from different doctors. Always add just one new supplement at a time so you can gauge any positive and negative reaction. For more info on specific vitamins and minerals, you can use Google or read published articles on Pub Med. Vitamin sites are also a good source of information as long as you double check the claims, because the write-ups are a marketing tool for the supplement and may overstate facts.
I avoid tablets and buy either liquid, powder or capsule form, mix into OJ and dispense via a medicine “squirter” which are available at any pharmacy. My son will not eat chewable vitamins, so this is my only option for now. Sometimes I have to bribe him to take his “vities” with cookies or chocolate. If not bribery, then I find myself chasing him around the house, with him giggling all the while!
Andy Cutler requires certain supplements for chealtion. They are: Vitamins A, B complex, C, E, selenium, magnesium and zinc. Check his website or his book for exact dosing.
My Supplement Must-Haves:
Kirkman Labs, Spectrum Complete- I use this as a source for multiple vitamins and minerals. I like Kirkman because they specialize in providing formulations for kids on the spectrum and were one of the first to do so.
New Beginnings, Antioxidant Formula- I give this for immune support and to help prevent oxidative stress. It contains: vitamins A, C, E, calcium and magnesium as well as small amounts of grape seed extract, NAC and pine bark extract.
Health From the Sun, Omega 3 +D3- This is great for immune support and inflammation control, it contains a lot of DHA, plus it has 1,200 IU of vitamin D3, the biologically active form of vitamin D.
VRP’s Advanced Methyl Caps- I give half a capsule to support the methylation pathway. This contains: B6 as P5P, B12 as methylcobalamin, folic acid as 5 MTHF and TMG as betaine. All of these are in the most bioavailable form. The last 3 are methyl donors for the methylation pathway and have demonstrated in studies to increase glutathione levels. I give this in the morning as it is energizing and helps my son stay energized throughout the day.
Enzymatic Therapy, Adrenergize- I give half a capsule for adrenal support. This is best given in the morning, when adrenal glands are naturally more active. Cutler recommends supporting adrenal throughout the course of chelation therapy, to make it more comfortable.
Vitamin A from fish oil- This is great for the eyes. My son used to do the sideways glancing stim, which is a result from G-protein disruption possibly caused by the pertussis vaccine. Since giving 10,000-20,000 IU per day the sideways glancing disappeared.
Thorne, Liquid Vitamin K, 1 mg- I don’t give this every day. It works as a natural calcium channel blocker.
Any Brand of Zinc- I don’t give this every day because my son does not test low for zinc, instead I cycle on and off every few days. Zinc is important for immune health and along with metallothionein acts as a magnet to transport toxins out of the body. Zinc is necessary to give to support chealtion, as chelators may bind to zinc.
Any Brand of Magnesium- A lot of ASD kids are low in magnesium, most supplement with extra magnesium to support immune function and reduce hyperactivity. Magnesium is required in so many biochemical pathways; its importance shouldn’t be overlooked. Because magnesium is calming, I give this in the evening.
Kirkman Labs, GABA with niacinimide and inositol- Gamma Amino Butyric Acid is an inhibitory neurotransmitter. Studies have reported that autistic kids have what is called a glial or micro glial cell activation, where there is too much excitability or over stimulation in certain parts of the brain. GABA has a calming effect and counteracts this over stimulation. I give this in the evening.
Probiotics- I rotate between 3 different probiotics: Kirkman Labs Multi-Flora Spectrum, Kirkman Labs S. Boulardii, which is a beneficial yeast and Culturelle.
Kirkman Labs, Amino Support- Important for kids with GI problems, who cannot properly digest proteins or who do not eat enough protein. Amino acids support protein synthesis throughout the body and are important building blocks to hormones and neurotransmitters as well.
Vitamin C, 1,000mg- I divide this between chelation doses. Vitamin C is a powerful antioxidant and helps the body excrete chelators and fights against free radical damage.
Other Supplements to Consider:
Milk thistle- to aid in liver detoxification
Acetyl l-carnitine and Co Q 10- to feed the mitochondriaCiticoline- there have been some studies that show it helps older people with cognition and MRI’s showed improvement after 6 weeks of supplementation. I know a few moms who say it has helped their kids with speech.
L-carnosine- is thought to regenerate and repair cells in the brain and it protects against glycation, a process where proteins in the body begin to create free radicals. I have not tried this due to my son’s previous bout with allergies; carnosine is the combination of 2 amino acids: histidine and beta-alanine. Too much histadine may aggrevate allergies, hence the use of antihistamines for allergy control.
Phoshatidylserine or phosphatidylcholine- these are phospholipids that are found predominantly in the brain and play a key role in neurotransmission and synaptic function. Early clinical trials reported a positive response for memory enhancement and cognitive performance. I am wary of these because they are soy-based.
This list is by no means complete; there are so many great books and websites that provide in-depth information on vitamins, minerals and other supplements for children on the spectrum. A great site is the Yahoo Recovery From Autism group. It is a private group, so you must request to join. They have an extensive list of supplements, detailing which to take and why as well as what to avoid.
My Favorite Websites for Supplements:
Surprising Sources of Toxins:
I won’t go into a big discussion of all toxic exposure, because the list is quite extensive. Really, toxins are impossible to avoid because they are everywhere, in the air, water and food sources, but there are things you can do to minimize exposure. Here are a few of the ones that surprised me as well as a recap of the biggies.
Poultry that is not organic, has tested positive for arsenic; the feed is mixed with an additive called Roxarsone, which contains arsenic. It is used as a parasite remedy for chickens and turkeys kept in unclean, crowded conditions. Roxarsone is also used in the pork industry. Besides the packaged meats, affected products also include chicken nuggets and eggs. I highly recommend eating organic, as those meats test negative for arsenic.
Wood treatments for outdoor use, like decking and swing sets may also treated with arsenic. Cigarette smoke is a major source of cadmium. Fire retardants used in pajamas contain antimony. Antiperspirants contain a surprising amount of aluminum. Check labels and look for deodorants without aluminum.
Obviously, dental amalgams contain silver and mercury and a few other metals. Mercury, from fillings leak vapor over time, which in turn enters the bloodstream. The FDA's website now contains the following warning: "Dental amalgams contain mercury, which may have neurotoxic effects on the nervous systems of developing children and fetuses." Flu shots still contain mercury in the form of thimerosol. Most vaccines, except for the live virus vaccines, contain aluminum in the form of aluminum phosphate or aluminum sulfate and they may still contain trace amounts of ethyl mercury. Aluminum can leach into food sold in aluminum cans; likewise for aluminum cookware.
Other Therapies We’ve Tried:
Methylcobalamin (MB12) injections:
Methyl B12 was the first therapy we tried as it was the first step in our former DAN doc’s protocol. We started MB12 shots in November 2009, right after our son was diagnosed. I think that the shots definitely turned the lights on for him. At the time, my son was 2.5 years old and had only a couple of words. With methyl B12 over the course of 9 months, his vocabulary increased to over 150 words, but he could not string words together or form simple sentences.
I think it’s a good starting point; it’s worth a try to see how your child does. Many children do very well with just this intervention alone. It is easy, minimally invasive and costs about $100 per month, if you give it every night. While I don’t like the idea of injecting my son long-term, I think this may be an important part of detoxifying and will stick with it until we are through with chelation. I am currently giving MB12 three nights per week. I stopped MB12 for 3 months and noticed an across the board increase in metals excretion in my son’s hair. This lead me to believe that the MB12 had increased GI excretion, resulting in lower hair metals.
MB12 is a methyl donor in the methylation pathway and it raises glutathione levels. Glutathione is a large protein and helps the body to detoxify. Other methyl donors are active folate (5 MTHF) and TMG. Autistic kids tend to be under-methylated. MB12 is given as a subcutaneous injection in order to bypass the gut and go directly into the bloodstream. Intra-muscular injections or inhaled MB12 are absorbed more rapidly where as subcutaneous injection goes into the fat under the skin and disperses over a longer period of time, sort of like a timed-release.
The shots are rather easy to administer. You wait until your child falls asleep and then inject it into the fatty area of the buttocks at about a 45-degree angle, because a straight shot into the buttocks may go into the muscle instead of the subcutaneous fat. My son went through stages where he would wake up and fight me, but mostly he did not wake up and only would scratch at the injection site right after I gave the shot.
CFGF Diet:
This diet is recommended by most DAN docs and that is the reason I started it in April 2010 with my son- my DAN doc required it as part of his protocol. I get the science behind it. The idea is that ASD kids have leaky guts to some extent. Because of this food particles pass through the lining of the gut and into the bloodstream where they are targeted as foreign and initiate an immune response. Also, casein can interact with opioid receptors, which causes a dulling effect in the brain.
We stuck with the diet for 6 months. Honestly, I saw no difference in my son on the diet versus off the diet. Yet I know a lot of moms who swear by it. It is definitely worth a try and it gets you into the habit of reading labels. There are a lot of books and websites that go into great detail on how to implement this diet. My son still does not drink cow’s milk. I found that he really likes almond milk and it has the same amount of calcium as regular milk. I would avoid soymilk; as it’s another large protein that can give our kids problems. Not only is there a lot of new research linking it to diseases, like breast cancer, it is generally not well tolerated by autistic children. In general soy products sold in the US are unfermented, highly processed and may be contaminated.
Even if you don’t want to go the diet route, it is a good idea to incorporate whole foods, like fruit and vegetables and limit processed foods, sugar, salt, artificial flavorings, colorings and preservatives. I don’t think it’s healthy to substitute pretzels and other junk food for CFGF junk food. It depletes vitamin stores to work to digest food if that food contains no nutrition.
My son tested in the low-positive range for multiple foods. Children can outgrow and overcome food allergies. I believe that as my son’s gut heals, he is tolerating food better. His inhaled allergies that he suffered with all-year long, regardless of season are gone. We noticed the constant runny nose was non-existent this past December, 2010.
LDA (Low Dose Antigen) Shots:
I got into this at the urging of my now ex-DAN doc in April 2010. These shots are given over the course of 3 years, totaling around 12 shots, costing about $150-$250 per shot. The first injection seemed to alleviate the runny, stuffy nose from which my son constantly suffered. After that, my son saw no marked improvement. My son took 3 shots total over 6 months at which time I decided to discontinue the treatment as well as discontinue seeing the DAN doc. I had read up on LDA and decided that I didn’t want to mess with the immune system by unnecessarily stimulating it. I opted to continue to support immune function through supplementation. It was also around this time that I started chelating for toxic metals.
Possible Biomed Therapies for the Future:
I have a few things on the back burner that I may consider, if in the next 1-2 years my son plateaus with chelation therapy. Those therapies are homeopathy and (hard chamber) HBOT. I am seeing so much progress with chelation that I don’t want to stop and go off in another direction yet. I want to give chelation at least another year or 2 before I move on.
I have no experience with homeopathy. Homeopathy looks promising for autism, but I don’t know if I have the patience right now to hang in there while a homeopath tests different remedies on my son. From what I have heard, and this was from a homeopath, homeopathy is usually tried as a last resort for autism. The way homeopathy works is that you do not treat for the illness or the symptoms of the illness, you treat the individual, so autism remedies are individualized and not a treatment for autism per se. It takes a good homeopath time to find the right remedy. The ones that usually work for autism are usually the less common remedies.
I want to learn more about HBOT and meet other moms who have used it to successfully treat autism. I like the idea of the hard chamber, because it gives 100% oxygen, where the soft chambers give just slightly more oxygen than regular air. I have also heard that soft chambers can aggrevate yeast in the gut, whereas hard chambers do not.
Therapies to Avoid and Why
I highly recommend avoiding any immunosuppressive drug therapies. This includes using high doses of ibuprofen and steroids. I really don’t think it’s a good idea to suppress the immune system. I have read research on MS patients and it’s the ones who have used long-term immunosuppressive therapy that are not able to then succeed with milder interventions and supplementation. I understand that these kids suffer from encephalopathy or inflammation, but I wouldn’t go so far as to suppress immune response. This increases susceptibility and leaves them open to serious diseases, like cancer. A better alternative would be to enhance immune function through proper supplementation and to remove the excitotoxins that are most likely the source of the inflammation.
A Note On Tylenol:
Advice to avoid Tylenol was included amid my hundreds of pages of sign-out sheets from our ex-DAN doc. At the time I didn’t understand why. I have since read many articles and books advising parents of ASD kids to avoid using Tylenol because it depletes the liver of an important detoxifying enzyme called phenol sulfur transferase. When administered after vaccines, it’s like a double whammy for the child, because they have just been injected with viruses and adjuvants and really need to detoxify. I would not use Tylenol at all for yourself or any children for that reason. I would also use Advil sparingly as well, because it is immunosuppressive.
