Pbmom's Blog

Patrick’s Story Continued

Once Patrick was diagnosed in 1997, I learned everything I could about autism. Truth be told, there wasn’t much on the internet yet about it. When kind people were sending me information, the chances were high that I already read about it. There was an interesting site I found that described different versions of autism. Two of the things on the list were “diet-induced” autism and “Candida-induced” autism (or autism that was induced by a systemic yeast infection. Long before I knew about Dr. Wakefield, I was already reading peer-reviewed research on the role of diet and autism.

When we returned to our pediatrician after the vaccine, and exclaimed, “Where did our child go?”, she ordered an ABR (auditory brain stem response — to check for deafness caused by the vaccine) and some initial lab work which returned showing high liver enzymes and a high platelet count. His pediatrician told us this indicated that his liver was overburdened, processing out some toxicity. This was 2 months after his MMR/DPT/polio. “This happened within 24 hours of the vaccine.  There has to be a connection.”  There was a long pause and a deep breath: “It would correlate” was the response.  A more comprehensive battery of testing was ordered.  While we were waiting to get this back, the psychiatrist who diagnosed him officially with autism also ordered a Fragile X and a few more lab values.   The heavy metal toxin screen came back indicating that he had high levels of zinc, nickel, mercury, aluminum. He had low levels of magnesium, potassium, iron, manganese, silicon, and cesium. He had a high calcium/magnesium, zinc/iron, zinc/cadmium, levels and low calcium/copper, calcium/zinc, and iron/copper. I know that probably is Greek to most people. Low magnesium levels may be implicated in fatigue, muscle cramping, and depression (hyperirritability, hyperactivity, muscle twitching and nervousness as a response). Low potassium may indicate fatigue and stress, effects neuromuscular response, ion transport, and energy production. Low iron most people are familiar with being associated with iron-deficiency anemia whose symptoms are weakness, fatigue, paleness, palpitation, headache and shortness of breath. High zinc levels were associated with poor utilization and may be preliminary to zinc depletion. Pyridoxine needed to be added to help maintain proper zinc levels. Low manganese levels could be seen in connective tissues disorders (this was fascinating to me because of our family history of autoimmune disorders). Low vanadium levels may affect bone morphology and aortic cholesterol. Low silicon levels may be associated with decreased calcification of the bones and teeth and abnormalities of the articular cartilage and connective tissue. It is a biological cross-linking agent in collagen and connective tissue. High nickel levels show high tissue destruction, especially in epithelial tissue. Mercury and aluminum are neurotoxins. 

I learned about a group called ANDI (Autism Network for Dietary Intervention) from the Developmental Delay Registry website which was founded by Lisa Lewis and Karyn Seroussi, parents of children who had changed dramatically through careful implementation of home-based dietary programs. They helped other parents by showing them how to support their child’s immune system, combating yeast and bacterial overgrowths, eliminating certain foods. “Recovery from PDD” founded by Jean Lash had a child with autism who was then considered recovered by professionals. “The Association for the Promotion of Better Health” was founded to help parents interested in homeovitics which aimed to remove a child’s toxin burden.

The file I have on autism is about 2 feet deep just in the research papers I chose to print out. While other people were reading for pleasure, I was reading on how to heal my child.

I journeyed to the site of the highly regarded Dr. Bernard Rimland of the Autism Research Institute. His son had been diagnosed with autism when it was still considered very rare. He earned credibility in his field when Dr. Leo Kanner, a psychiatrist who first identified autism as a syndrome, wrote the foreword in Dr. Rimland’s book which put autism as a neurological disorder, not a psychiatric one. Dr. Rimland went on to co-found the Autism Society of America. His site had extensive information on the biomedical treatment approach to autism. We tried DMG (dimethylglycine) with Patrick but he seemed to have a reaction to it. With no biomedical experts in our area, I decided to place a call to them to see if they had heard of anything since it seemed relatively benign. The woman actually put me through to Dr. Rimland himself. Things were different back in 1997. He suggested that perhaps Patrick was reacting to an additive in the product and gave me a few places where we could purchase it in a pure form. We also put Patrick on a special vitamin product made specifically for children with autism called Supra Nu Thera from Kirkman Laboratories because it was researched that children with autism tended to have low levels of vitamin B and zinc. The list of things we tried for Patrick would blow your mind and I honestly don’t have enough space here to list all the different things and the different combinations.

I have meticulous notes that I have kept over the years. One of these includes a note for Patrick’s well visit in December of 1997 when he was 2 years old. He was being seen twice a week for occupational therapy for 45-minute sessions. Speech therapy saw him twice a week for 45 minutes. He was no longer in day care and home with me and making better progress. I was excited by the following: “Will tolerate us washing his hair now.” “Isn’t catatonic in his winter coat this year (which proves that I saw signs of his vaccine-injury long before his 15-month injection when he totally left us). “Gave me 3 half-hugs in the last 3 weeks.” He still wasn’t stacking things, talking, imitating, feeding himself, drinking from a cup, eating regular food, not pointing to things, not engaging in pretend play. Our concerns were about a rash on his face, biting his fingers. Things that made him dry heave and eventually throw up: A mylar balloon, Christmas tree, a different pacifier, or if he chokes on his own. He could only eat stage 2 baby food. The pediatrician, not knowing a lot about biomedical approaches, but certainly seeing the progress Patrick was making with whatever interventions we were trying, supported us in our efforts. If we needed a prescription for a certain item, all we needed was to send her some case studies to look over and she would let us know if she felt comfortable or not doing it. Sometimes she did; sometimes she didn’t. If she did not, we went on to try something else.

I read testimony from Washington, DC about parents whose children had reactions after the vaccine that were very similar to ours, but more than 20 years previous to my child’s injury.

I need to skip over how we decided on which home program to do because it is not relevant to the topic of vaccines except that the program we did choose had biomedical education as part of its curriculum. After Jeff attended the start-up program in early 1998, we received a letter dated May 1998 from other parents who attended who told us about how changing their child’s diet made huge improvements for them.

In November, 1998, our psychiatrist wrote us a letter for something that made us feel great. “I have examined him over the last year and worked with he and his family regarding guidelines and advance for Patrick. Over the course of our relationship, Patrick has made substantial gains given his parents high level of motivation and interest in his care. It is my opinion that given his parents’ motivation, interest and hard work, Patrick’s prognosis is excellent.”

In January of 1999, we attended our intensive program where we both learned the importance of diet in recovery from autism. Yes, you read that correctly: RECOVERY FROM AUTISM. We also had lunch with the now-recovered child who went on to graduate from Brown University. Can you believe that the medical community was so threatened that a mere parent could figure out a treatment approach that was considered quackery by modern medicine that this family received death threats? We asked him if he remembered any part of his life during autism and he told us of remembering swirls in yogurt.

It was then we worked on changing Patrick’s diet, switching him from his sugar-laden soy baby formula to rice milk. We turned his diet into a gluten-free, casein-free, sugar-free diet.  The child looked like he was on morphine (see picture below) before we started this diet.

Patrick in late 1998 right before we started the diet Jan 1999

Previous to the 15-month immunization, he looked like this:

Patrick with chicken pox March 1997 right before MMR/DPT/polio

By the year 2000, Patrick’s lab values were back to normal. However, the damage was already done.   But by 2000, he was no longer getting sick so often.   No more reflux, no more colds, no more ear problems, no more sinus infections.  Several times we went a whole year without stepping foot in a pediatrician’s office for so much as a cold.  When going for a well-check, the nurse was shocked, “Oh, you haven’t been here in….a year?”  And he didn’t look like he was on morphine anymore. 

Our pediatrician gave us a permanent immunization waiver. In 2002, she wrote this: “Please continue Patrick’s medical exemption from further immunization boosters. For the foreseeable future, the possible consequences of further vaccination appear to outweigh the possible benefits and I have recommended to his mother that we not pursue further immunization at this time. I anticipate this exemption for the polio booster to be indefinite.”

In part 3 of this series, I’ll give you a look at what was being documented at the time in case studies.