(Article updated December 27, 2019)
Parenting, for me, was an adventure. Typical of any adventure, I experienced danger and travel, I met extraordinary people, felt like an outsider in my community, and after a lot of ups and downs, everything turned out well in the end.
In 1992 our first child was born two weeks early, at only five pounds. John seemed to be fine, but there were many subtle indicators that hinted at troubles to come. In his early years he was extremely colicky, had difficulty getting to sleep, was often impulsive, and was very sensitive to noise. On the other hand, he seemed healthy, happy, inquisitive, active, and he played well with others. Even though my husband and I were pleased with how well John was developing, we always had a bad feeling in the pit of our stomachs, a ‘felt’ sense that something wasn’t quite right.
As John entered school, this feeling of apprehension grew as his behavior at home became ever more erratic. He would sometimes race around the house recklessly, and he became unmanageable. An appointment was arranged with a pediatric neurologist, who found John’s behaviors confusing. Next, we met with a psychologist who commented that I probably “didn’t know how to discipline.” In the early days of our search for answers, I heard this view many times, but fortunately I did not accept it.
The first day of John’s grade three year changed everything. Soon after arriving home, he began to rage violently. I felt afraid for my safety, and for that of his younger brother, Alex. Over the next year and a half, my husband and I went through a horrible experience as we explored the local mental health services. We worked with a mental health unit and a mood disorder clinic; we even had John spend a six-week hospital stay in a mental health ward. After this, we were dismissed and told there was no more help available. We felt abandoned by our community. Out of this feeling of desolation, we decided to take matters into our own hands.
Before long we found an independent, supportive psychiatrist who recognized that John was showing signs of Tourette’s Syndrome. Sure enough, John began developing a wide range of symptoms: tics, eye blinking, finger crossing, deep knee bends, all of which varied over time. As things progressed, the doctor found that John’s symptoms were much broader than those normally associated with Tourette’s Syndrome. Most importantly, she looked me in the eye and reassured me that it was not my parenting that was at fault. (I had not realized how beaten down I was feeling after our early experiences of seeking help.)
Soon afterwards, we also found a psychologist who was willing to work with the whole family. While the situation was still pretty horrible, with some medication and real support our lives stabilized.
When John was in middle school I decided to seek out some other views as well. We began by visiting a naturopathic doctor who encouraged us to avoid any processed food, so we began preparing most of our food from scratch; my husband even made our bread each week. However, we did occasionally indulge in canned soups and ‘mac and cheese’.
The naturopath also encouraged us to introduce protein at breakfast time, and suggested that we include meat; in particular she recommended grass-fed meat and wild fish, explaining that the food source of the protein we eat is important. These suggestions gave us something to work with and, over time, we saw some improvement in John’s behavior.
Next, I took John to a homeopathic practitioner who had a good reputation regarding her rigorous allergy testing. John’s test results showed a reaction to many foodstuffs, and the strongest by far was to sugar. The thought of removing sugar from our home with two teenage sons was overwhelming. We considered how and when best to remove sugar for one week and decided that a school holiday seemed the optimal time as John would be home, providing little or less chance to cheat. Around mid-afternoon on the fifth day of his ‘no sugar’ diet, both my husband and I noticed that John did not display his typical screaming outbursts. We were impressed by this new development, and resolved to keep our home sugar-free by using honey as our new substitute sweetener.
Over the next few weeks, a number of his symptoms lessened and, though they did gradually return, they were less severe. This was a pattern we were to observe throughout John’s recovery. He would show observable initial improvement but gradually some symptoms would return, although they would be much less intense than before. Also, we realized that neither of our alternative practitioners wanted to work with us on an ongoing basis; they were uncomfortable taking on a role of responsibility for a child with the diagnosis, symptoms, and medications associated with John’s case. Though it wasn’t stated explicitly, I assumed the concern involved liability.
Given the improvement we saw after having removed sugar from John’s diet, we decided to continue researching and experimenting with food. After reading that wheat could also be a problem, we switched to ancient grains like spelt and kamut. Next we went gluten-free. Subsequently, John’s tics were diminished, and the skin rashes on both of our boys gradually disappeared (both the extensive rash on John’s arms and torso, and the pronounced patches of raised spots on Alex’s chest). We were never given a confirmed diagnosis, but came to understand that, in John’s case at least, it may have been eczema.
Around this time, our younger son Alex began getting headaches, and then severe migraines. I took him to the homeopathic practitioner for allergy testing. Alex showed a strong response to dairy products. This was disappointing as we were finding that our newly adopted diet already made socializing difficult; removing milk and cheese as well would now present an additional challenge. However, we went ahead, removing dairy from our diet. A week later, Alex’s headaches disappeared. John’s symptoms also improved somewhat. We did not look for a replacement for dairy; we just drank water with meals. It gradually happened that we adopted a diet that consisted only of meat, vegetables, fruit, nuts, and seeds.
Having the whole family participate in each dietary experiment led us to discover that wheat, sugar, and dairy had impacted all of us, though in different ways. At the beginning, as John was the only family member to display ‘inappropriate’ behavior, it had been easy for us to ignore the role that diet played in all of our lives. For instance, we had all become somewhat overweight. After removing wheat and dairy, we all now registered in the normal weight range, and felt better for it. In addition, the 20-year-old cysts on my husband’s back and arms gradually diminished, then disappeared.
As for myself – the bladder infections I had been experiencing, and for which I had been prescribed antibiotics for years, disappeared. We realized that John was not the only family member to benefit from our family’s dietary changes.
Our life was definitely improving, but my husband and I were still not satisfied. Next, supplementing with vitamins and minerals began to interest us. At around this time, John went through puberty, and his symptoms suddenly worsened.
I began reading about the work of orthomolecular psychiatrist Dr. Abram Hoffer, and also that of Dr. Pfeiffer. I also learned of a family who had recently visited Dr. Hoffer in Victoria, B.C. Dr. Hoffer, a pioneer in vitamin therapy, was still running his clinic – even in his late 80’s. In early 2006 (John’s grade 8 year), he and I flew to Victoria to meet with Dr. Hoffer. After observing the white spots on John’s fingernails, he recommended supplementing his diet with zinc. He also recommended that John take therapeutic doses of Vitamin C (3 grams daily), and a range of B vitamins. In addition, an appointment was arranged for John to have his hair analyzed to determine if he was carrying an excessive load of heavy metals. The results indicated elevated levels of aluminum, along with nutritional deficiencies. Metabolic testing later noted these findings in more detail. After we returned home, Dr. Hoffer remained helpful and available through email until his passing in 2009.
Again, John improved – most notably regarding his writing coordination. The vitamin supplementation next led us to the idea of metabolic testing. I took John to the blood clinic at our local hospital and the nurse extracted some of his blood (the urine sample required no supervision). We then sent the samples to Nutrichem, a reputable testing lab in Ottawa that provided excellent and helpful instructions. The lab has a long history of customer service, and their processes are well developed.
The test results revealed that John had multiple nutrient deficiencies. In addition, it was revealed that his urine contained high levels of the waste products of fungus, indicating a fungal overgrowth in his bowel. Nutrichem recommended we follow a diet fairly similar to the one we were already on, and that we try a tailored vitamin/mineral blend. This blend would include moderate doses of some vitamins like vitamin C, a range of B vitamins, and low doses of a broad range of minerals including zinc, selenium, magnesium, and other supporting nutrients.
We decided to have John’s supplements compounded in gelatin capsules at Dr. Peter Ford’s Apothecary in Moncton, New Brunswick. Generous with his time, Dr. Ford worked with us to develop a modified blend that best suited our financial situation. He is very approachable and easy to talk to and his reputation continues to expand as his business supplies specifically designed supplements to people across Canada and into the U.S. With these changes implemented, John’s tics became barely visible and his energy levels improved; he was however still very irritable.
A couple of years later, our family chiropractor suggested that we put John on a therapeutic dose of probiotics as he had become aware of the positive results people were getting from them. A therapeutic dose would include at least 25 billion cells of a good multi-strain bacterial preparation. We followed his advice and, again, John improved.
As a result of these health improvements, the psychiatrist was by now significantly reducing the dosage of John’s medications. Finally, when John was in grade 11, the chiropractor suggested we try Saccharomyces boulardeii, a probiotic made of fungus. We tried this, and after a couple of months John suddenly changed his social group. Up to this point, he had hung around mostly with ‘special needs’ kids, but now he no longer ‘fit in’ with them.
This seemed to be the final change that John needed; he became very active socially, and he gained a whole new group of friends. This resulted, unfortunately, in some hurt feelings, but he no longer belonged in the old setting.
Over the next year, the psychiatrist weaned John off of all medications and, by the time of his high school graduation, he was dismissed from her practice. Since that time, John has been fine. He has graduated from university and is supporting himself. While still avoiding milk, he has stopped taking most supplements and has broadened his diet. John continues to monitor himself, making changes if and when he notices his body responding negatively to anything.
Our family’s experience has been a true adventure, and one with a great outcome. I can only encourage any family struggling with a ‘difficult’ child to experiment with alternative practices that make sense, and are available to you.
– Nutrichem Testing Lab, Ottawa: https://www.nutrichem.com/
– Harkla is a small and dedicated company whose goal is to provide families with the best products and resources for raising a child with special needs. This includes a range of sensory and autism products, as well as supplements. For more information visit: https://harkla.co/
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