When Marley was diagnosed with autism, my husband and I already had a big suspicion that autism was the problem. We had already been researching alternative treatments and she was only 2 ½ years old. Her horrible meltdowns that lasted an hour or more were our most pressing problem. A friend suggested I start her on DMG….a supplement that helps the methylation process. Within a day and a half, her tantrums stopped, however she became incredibly hyper.
A few days later, our appointment with the pediatric developmental neurologist at a prominent hospital had finally come. We had waited 5 months for this. Unfortunately, all he had to offer us was an autism diagnosis, and some free advice. “Don’t have any more kids”, he said. “The chance of your second child having autism is 1 in 10 but likely even higher since Marley is a female.” Slightly shocked, but still unwavering, I said, “We have tried DMG to stop her tantrums and it worked, but it is making her hyper. Can you help me figure out a way to calm her down?” Always prepared, I handed him the printed out studies done on DMG and how it helps kids with seizures and kids with autism. His reply was “Oh…I am sure it was a coincidence. These studies are from the 1980’s, so they are very old. There is no reason to get your hopes up.” My blood was boiling. He left the room. I turned to my husband and said, ”See, I TOLD you he wouldn’t listen to me! He thinks I’m crazy!” Then the door opened and it was him again. He said, “I was outside the door and overheard you talking. I don’t think your crazy. I think you are getting your hopes up for her future. I will give you an open-ended prescription for Prozac, which will calm her down and help with the meltdowns. I will run some amino acid tests now. Keep her in OT and I will see her again in a year.” I wanted to punch him. What the hell was he good for? That was when I learned that most doctors are not healers. They are diagnosticians and medicators. But he wasn’t there to HELP my daughter. Just to medicate her so the rest of the world could tolerate her. His suggestion was to drug up my 2 year old! So, we left….deflated and angry but more determined than ever to find Marley some real help.
Next, I turned to a chiropractor, kinesiologist and nutritionist named Dr. Gangemi. Kinesiology is an interesting practice and if you are not prepared for the muscle testing, it may seem very strange. The friend that referred me, somewhat prepared me, but my husband was very skeptical. Dr. G asked us, did you vaccinate her? We said, “yes.” He asked why. Chris said, “Because we don’t want her to get the mumps.” Dr. G looked us directly in the eyes and said, “I would argue that she is already sick.” We knew he was right. The exam showed she needed Magnesium and vitamin B6 and that she had bacterial dysbiosis in her gut. Dr. G also asked me to get a copy of the amino acids tests run by the prior doctor. I said, “why? He said everything was fine.” Dr. G replied that some doctors don’t know what they are looking for.
Boy…was he right. It took me two weeks of phone calls to get Marley’s lab report. And when it finally arrived in the mail, I gasped for air. HOW could a prominent doctor look at this and say THIS is normal? Fourteen of Marley’s amino acids showed high levels. And not just a little high. Four of them had levels 4X the normal range. And the other ten were twice the normal range. So, I jumped on the phone and had the hospital page this “doctor”. When I got him on the phone and asked him why he said the levels are normal, he said, “Oh, the technician reads those reports and if they fit into a specific pattern, they call them abnormal. If they don’t fit into any pattern, they call it normal. I wouldn’t even know how to read one of those reports. I don’t know what all those numbers mean.” My jaw dropped. I couldn’t even speak. He couldn’t read it? God knows how many kids this man sees in a day. All he does is order tests, not look at the results and dole out prescriptions? I was in shock. So armed with this information, I was sure going to figure out how to read these test results and find out what they mean.
Back at home, we tried the ionic magnesium prescribed by Dr. G. Within ONE day, Marley began to follow commands. ONE day. The next week, we tried the P5P, a broken down form of B6. Again, within ONE day, she began to point to objects that we asked her to identify. She couldn’t talk….she was hyper from the DMG….she was disconnected but these two accomplishments were definitely milestones for her. And they were brought about by two simple supplements. We were amazed and needed to learn more. We continued to see Dr. G but I found that Marley was really in trouble. She was having 10 loose stools per day and she was falling further and further behind. She needed a medical HEALER…and fast.
I hand-picked Dr. Ken Bock in Rhinebeck, N.Y. because I saw him speak at a DAN! Conference. He became her healer. We drove her 600 miles once a year to see him and I did phone consults every 2 months. The initial visit was brutal. 14 vials of blood were drawn. Fasting urine collection. But based on those test results (which he COULD read), we started her on a regime of supplements and Marley began to heal.
This was her list of supplements during her healing years with Dr. Ken Bock. We have pared it down to the essentials since then.
*I am not a doctor. I am a mother. We used all these under a doctor’s supervision. * All these were important to my daughter’s healing.
Nordic Naturals Cod Liver Oil w/D3 – 2 tsp (This was a winner right away! We found this helped her focus and attention span) This also helped my second daughter who had delayed language.
Folinic acid (800 mcg of methyltetrahydrofolate - also known as metafolin OR FolaPro)– this was determined by Dr. G and Dr. Bock because she cannot break down folic acid. Turns out neither her little sister nor I can either. I made sure to take this during my subsequent pregnancies as the inability to break down folic acid can result in miscarriage.
P5P – (It is the broken down form of B6) – When I asked Dr. Bock what causes sensory problems in kids, he responded “there are many reasons but the top 3 are: B6 deficiency, problems with sulfation in the body and heavy metals”. We did 50 mg, which we later reduced to 25 mg as her sensory problems got better. This is a must for kids with sensory problems. This was an immediate winner for us too, likely because it helps by supporting the adrenals. Although it is rare, long term high dose use of B6 can cause peripheral neuralgia.
Calcium Powder – I recommend Calcium Citrate and it is best taken with magnesium for optimal absorption.
Curcumin- Anti-inflammatory. Many of our kids struggle with inflammation. This is the active ingredient in turmeric.
Selenium – Gets rid of free radicals in the body and is also supports the immune system because Selenium is an essential component of glutathione, the body's most potent natural antioxidant.
Zinc- most kids with ASD are zinc deficient. It also supports the immune system and is great for PICA (chewing on clothing, putting things in the mouth, etc.)
Niacin as Niacinamide (B3) – 400-800 mg daily. Start low with this supplement and add until you find the ideal dosage. This is nature’s Valium and helps immensely with anxiety. Do not use Niacin as it is hard on the liver.
Pycnogenol (Pine Bark Extract) – 100 mg daily. This is an antioxidant and we found this helps with anxiety & focus. (It can also help women with hot flashes)
Methyl B12 shots – these made my daughter WILD. But they did help her with socialization and verbalization. I later found out that about 20% of the ASD population cannot tolerate these shots but for others, they are great. We have since switched to sublingual B12 as the shots can increase cobalt levels. But beware, as B12 can increase yeast overgrowth, so be sure to take with an anti-fungal such as Grapefruit seed extract.
Amino Acid complex - this was specific to the needs her blood test showed.
For the GUT:
Probiotics – Strong probiotic with no sugar added to help with bowel movements, and bacterial dysbiosis in the gut. This also helps keep your child healthy. The gut is 70% of the immune system, so if the gut is healthy, your child will likely stay healthy. (Best to take on an empty stomach first thing in the morning.)
Ionic Magnesium – helps with constipation and also helps kids that are “chewing” on clothes, fingernails, etc. (Can also give Magnesium Citrate – 140 mg daily)
Digestive Enzymes – Along with a diet free of gluten, dairy and likely Soy, digestive enzymes can help the GI tract to heal. We use enzymedica. Take with food.