As anyone who has worked with children with behavioural issues such as ADHD will know, specific foods, colourings, food additives, pollens and chemicals can all trigger hyperactive reactions in sensitive children. When not exposed to their triggers these children remain calm and symptom free. Just check in to the Hyperactive Children’s Support Group site to learn how a child’s life can be turned around when such triggers are removed. Yet although these reactions are well documented, all too often the medical response to ADHD is to medicate, not to look for triggers. But triggers are not only relevant in ADHD.
Sheila Rogers Demare has spent a lifetime working with families with a range of behavioural issues but her especial interest is in Tourette’s syndrome. Amazingly, while just 3 people in every 1,000 suffer from Parkinson’s disease, 1 person in 100 now has Tourette’s syndrome – yet many people have never even heard of it. And the only ways that most doctors think to treat it is with medication, behavioural treatments such as CBT or, more scarily, deep brain stimulation. Yet, as so many of the families that Sheila works with can report, identifying and avoiding environmental triggers can dramatically improve the symptoms of Tourette’s.
What is Tourette’s Syndrome?
For those who don’t know, Tourette’s Syndrome is ‘is a complex neurodevelopmental disorder characterised by tics and beginning in childhood’. These can be motor tics – ‘sudden, rapid, recurrent, non-rhythmic, stereotyped motor movements ‘ (such as blinking, mouth pouting, nodding) or vocal tics (throat clearing, sniffing, coughing). In mild cases they are scarcely noticeable but in severe cases they can include more violent movements, copying what other people say or continually repeating what they say themselves, and in a small number of people, involuntarily using obscenities or being insulting or inappropriate.
The condition is often genetic, usually starts in childhood and around 50% of children grow out of it by the time they reach adulthood. No one understands what causes it although there could be links with streptococcal infections and prenatal and perinatal difficulties.
Even mild cases of Tourette’s in children are often linked to ADHD, obsessive compulsive disorders, behavioural or educational issues, mood swings, anxiety and depression. Although little research has been done, the quality of life enjoyed by children with Tourette’s and their families appears to be significantly worse than that of children with, for example, asthma – although, in one study, it was deemed ‘ better than 145 patients with intractable epilepsy’.
(For a detailed overview of the condition and treatment pathways see the review Gilles de la Tourette’s syndrome and its impact in the UK in the BMJ’s Graduate Medical Journal.)
Conventional management of Tourette’s uses either CBT (Cognitive Behavioural Therapy) and habit reversal training, both designed to literally change the habit of tic-ing, or neuroleptic drugs (usually halperidol) which suppresses tics. But nowhere, including in the excellent study in the BMJ’s journal, is there any mention of environmental triggers. So back to Sheila Rogers Demare.
Why is there no research into environmental triggers?
In an article in the July issue of Latitudes (the magazine of the Association for Comprehensive Neuropathy) she asks why there is no research into the role that environmental triggers can play in Tourette’s when there is a wide recognition that they can play a significant role in Parkinson’s, autism, migraine and ADHD, all also neurological conditions.
She illustrates her point with a series of graphs, developed four years ago but, on a recent review, still an accurate reflection of the situation. These show the research interest in allergy, diet, the environment and other triggers in relation to Parkinson’s, autism, migraine and ADHD compared with Tourette Syndrome. I have copied the table for ‘research interest in environment’ below but the other tables are almost identical.
In the US Sheila Rogers Demare holds the Tourette Association of America at least partially responsible for this omission. Immunotherapy, allergy, nutritional therapy, chemical sensitivity, and environmental medicine fall outside the experience of its board of scientific advisors whose focus is exclusively on conventional neurology, psychiatry, psychology, and behavioural therapy. However, it seems that, if the BMJ report is anything to go by, the Tourette community outside the US is no more open minded.
Managing Tourette’s by eliminating triggers
Families living with Tourette’s in the US at least, seem less willing to accept the conventional approach.
Search Amazon.com for books on Tourette’s Syndrome and the first one that comes up is Sheila’s Tourette Syndrome: Stop Your Tics by Learning What Triggers Them. This is a follow on to her first book, Natural Treatments for Tics and Tourette’s. Both look in detail at the triggers that she identified in her own son 25 years ago and that since then have been identified by so many other Tourette’s families. They fall, she says, under eight headings:
- Allergens – non food
- Food and drink – allergies, sensitivities and nutritional imbalances
- Lifestyle
- Medications
- Physical imbalances
- Sensory influences
- Toxins – including the huge number of chemicals encountered in normal housecare, washing and skincare products.
- Weather
First identifying these and then eliminating them can be life changing for a family dealing with Tourette’s. As Dr James Greenblatt says in a review the book:
‘As an integrative child and adolescent psychiatrist for 28 years, I have treated many struggling with tics and Tourette’s, and find environmental and allergic triggers to be critical factors in helping patients……… Environmental triggers and an understanding of nutritional deficiencies are tragically missed by many physicians treating these conditions.’
All other considerations aside, with health services always strapped for resources, how much cheaper would it be to help families identify and avoid environmental triggers than to treat their children with expensive drugs and psychobehavioural interventions?
No Allergy Tsar in sight