When Tracey Hall-Roberts rushed her 11-month-old daughter, Tatijana, to hospital in December 1993, she had no idea this was a journey she was going to have to make time and time again.
Tatijana had suffered a seizure that had lasted a full hour and a half before doctors could bring her out of it. Two months later, after the same thing happened again, Tracey, who was 29 at the time, was told her daughter had epilepsy caused by mesial temporal sclerosis—scarring in the brain’s temporal lobe. Tatijana’s seizures were classified as ‘partial’, as they did not affect all of the brain, and ‘complex’, meaning her consciousness was impaired or lost during the episode.
Tatijana was prescribed a powerful antiepileptic drug, but it failed to stop the seizures even at the maximum dose allowed for her age; worse, the episodes gradually increased in frequency and severity.
When Tatijana was three years old, she was having up to seven seizures a day, and the hospital was like a second home. Tracey had to become an expert in first aid, and plan everything around Tatijana’s epilepsy.
Over the next decade, Tatijana was prescribed a variety of different drugs, but none of them made any difference to her condition. In fact, they made life significantly more difficult for both Tatijana and her mother because of the side-effects. One drug, Tegretol (carbamazepine), caused “horrendous night terrors”, which made Tatijana too frightened to go to sleep. Tracey also noticed Tatijana’s hair thinning, and her complexion becoming pale and mottled.
A visit to Great Ormond Street Hospital eventually confirmed what Tracey had suspected for some time. “The doctor told me Tatijana’s epilepsy was intractable,” said Tracey, “and that no drugs would be able to help.”
Despite this, Tracey was told she would have to keep Tatijana on some form of antiepileptic medicine, or risk her daughter being taken away by social services.
The only real hope was brain surgery, they informed Tracey, and this would involve removing the scarred portion of Tatijana’s brain. “There was about a 70 per cent chance it could work,” said Tracey, but it was not without serious risks.
Reluctantly, Tracey agreed to put Tatijana on the surgery waiting list, although she immediately starting looking
A non-surgical solution
By this point, Tracey, an accountant and life coach who has always been passionate about holistic healthcare, had already taken Tatijana to see a number of complementary and alternative therapists—from homeopaths to cranial osteopaths and bioresonance practitioners. But nothing she tried had helped control the seizures. She’d heard about the success of the ketogenic diet, a high-fat low-carb diet often recommended for childhood epilepsy, but Tatijana’s food allergies meant that such a diet was not an option. “She would have had nothing left to eat,” said Tracey.
It was while looking online for treatments to help with Tatijana’s developmental problems that Tracey stumbled upon the therapy that was to be the game changer. Tatijana, now a teenager, was struggling at school and had got to the stage where she would barely even talk to teachers or other pupils, but spent most of her time “hiding in the bushes”. Aware that Tatijana had some behavioural issues similar to those seen in children with autism spectrum disorder (ASD), Tracey figured that alternative therapies for ASD might prove useful, so it was on an autism website that she came across The Scotson Technique (TST).
Developed by Linda Scotson to treat her brain-damaged son, TST is a massage technique based on the theory that neurological problems are connected to abnormal breathing. Designed to be taught to parents so they could treat their own children, it involves applying light pressure to the muscles involved in breathing and posture, with the goal of increasing the supply of oxygen to the brain.
As oxygen starvation is a known cause of mesial temporal sclerosis, the condition Tatijana had been diagnosed with, TST made perfect sense to Tracey, and she was buoyed by the positive testimonials from parents whose epileptic children had been helped by the technique.
“Parents trust other parents,” said Tracey, “especially when you’ve got to the stage of no longer believing in the conventional medical approach.”
After making contact with Linda, Tracey and Tatijana made the two-and-a-half-hour drive from their home in Thurston, Suffolk, to the Advance Centre in East Grinstead, West Sussex. A registered charity, the Centre was set up by Linda in 1993 to help brain-injured children and their families. It’s where Linda teaches parents about TST and how to administer it.
After a two-hour assessment of Tatijana, Tracey learnt the first set of massages to use on her daughter; this is generally given to all the children treated there to build a stronger diaphragm and lungs. Later she would learn different massages tailored to Tatijana’s specific needs.
“It was really simple to learn,” said Tracey, “and all you need is a space for your child to lie down and a face cloth.” While hand pressure alone is used for some of the massages, a rolled-up face cloth is also incorporated to apply pressure to a wider area.
Within two weeks of starting TST, Tracey noticed a difference in Tatijana. “She was sleeping better and had lots more energy.”
Tatijana’s appearance also improved. Her complexion cleared and her whole body appeared more toned. “She developed a waist and looked a lot stronger,” Tracey recalls.
As for Tatijana’s seizures, they got worse at first, which Tracey believes was down to her brain adjusting. “It wasn’t used to having a proper supply of oxygen,” she explains.
But gradually the seizures happened less and less, and Tracey found she was no longer rushing Tatijana to hospital on a weekly basis.
Living with TST
By the time Tatijana was 18, her health, confidence and communication skills had improved to such an extent that she applied for the highly competitive fashion course at Norwich University of the Arts. After securing one of only 45 places, she went on to receive the Penelope Hewes Award for Achievement at the university, and remained seizure-free for almost two years. However, at the end of her second year, the seizures started again, coinciding with the increased pressure of her coursework. “Stress was definitely a trigger,” said Tracey. “But we’d stopped doing the massages too. Now I realize that it’s something we have to keep up.”
Sadly, Tatijana had to give up her course, but she then restarted TST with her mother and is regaining her confidence again little by little. She can now do some of the massages on herself and also incorporates stress-management techniques into her daily routine, like going for a 10-minute walk or boxing with a punch bag. Tatijana has even learned how to detect and prevent the onset of a seizure.
It’s this element of being in control that Tracey says is one of the best things about TST.
“When you have a child who is ill or with special needs, you relinquish control to the doctor or therapist and, ultimately, you become distanced from your own child. With TST, you are back in control of your child’s health and wellbeing—and it’s so lovely to have that connection back again.”
Tatijana, now 23, is also pleased to have more control over her own health. Surgery is no longer on the cards and, although Tatijana is still taking medication, the dosage is gradually being reduced and she hopes soon to be able to come off the drugs completely.
“I’m happy to have a method I can use on myself to reduce and hopefully stop the seizures altogether,” says Tatijana.
Conventional treatments for epilepsy
Treating epilepsy—a disorder of brain electrical activity resulting in recurrent seizures—usually involves antiepileptic drugs (AEDs), or ‘anticonvulsants’. These drugs don’t cure the condition, but can prevent seizures by either altering electrical transmissions in the brain or changing the brain’s chemicals.
Around two-thirds of patients with newly diagnosed epilepsy become seizure-free when treated with AEDs.1
But there’s a high price to pay. All AEDs depress central nervous system function, so all of them are associated with sedation, dizziness, ataxia (loss of body movement control), cognitive and visual disturbances, and gastrointestinal symptoms.2
Several AEDs, including the newer, supposedly safer, ones, have even been linked to psychiatric side-effects such as suicidal behaviours.
In one study investigating second-generation AEDs like gabapentin, lamotrigine, oxcarbazepine and tiagabine, all increased the risk of suicide, attempted suicide or violent death.3
Other serious side-effects associated with AEDs include multiple organ toxicity, including the liver, Stevens–Johnson syndrome (SJS; a potentially deadly hypersensitivity complex affecting the skin and mucous membranes),4 and blood-related disorders like aplastic anaemia, increased bleeding time and thrombocytopenia (low blood platelets).5
AEDs can even make seizures worse,6 while 30–40 per cent of patients continue to have seizures despite taking the drugs.4
Another treatment option is brain surgery, usually recommended for drug-resistant epilepsy in which a single, discrete area of the brain is causing the seizures. Around 65 per cent can achieve a good outcome, according to one review,7 but the risks are many and include memory loss, double vision, one-sided paralysis and increased seizures.8
The Scotson Technique
TST was born of a mother’s desire and determination to help her severely brain-damaged son. Linda Scotson was a painter and lecturer in Fine Art, but when her son, Doran, was born with cerebral palsy and hearing loss—and doctors told her he would never be able to sit, stand, walk or eat by himself—she gave up her job to focus on finding ways to help him.
When various alternative therapies and approaches proved fruitless, Linda started doing her own research into neurological problems in children, and became convinced that abnormal breathing lay at the heart of them.
Linda took her ideas to Professor Patrick Wall, Head of Cerebral Studies at University College London, and went on to be accepted into the Department of Neuroscience as a PhD student.
Through her research, Linda was able to show how abnormal breathing impacted the development of brain growth, posture, circulation, musculoskeletal structure and limb control, as well as influencing cerebrospinal fluid flow, speech production, sleep, learning ability and digestion. She also found evidence of a link between abnormal breathing and seizures, which are commonly seen in autistic children.
Linda then gradually developed a way to mimic the changes in bodily pressures created by healthy breathing. “These pressures compress and decompress blood vessels, increasing blood flow through organ tissue and gently bringing increased oxygen to the nerves which send
signals from the joints and internal organs to the brain,” Linda explains.
The light, pulse-like massages Linda came up with became The Scotson Technique (TST) and, after seeing it benefit her son, Linda started treating other children with cerebral palsy as well as those with autism, epilepsy and other neurological problems. “All outcomes were similarly encouraging,” said Linda, “because I wasn’t trying to treat the individual disease, but to restore the dynamics of normal processes that depend on normal breathing.”
In 1993, Linda set up the Advance Centre to train parents in TST, and she’s now witnessed many amazing transformations in children with a wide range of neurological conditions.
As for Doran, he is now an athletic 37-year-old who runs half-marathons, travels independently and is a talented artist. “Doran has achieved more than any medical professional ever believed,” said Linda.
She is now preparing for her PhD viva, and is applying for a research grant to conduct a controlled study of TST with a view to getting it incorporated into mainstream therapy.
To find out more about TST, visit www.advancecentres.com or call 01342 311 137.
Diet and epilepsy
Diet is known to play a role in epilepsy. In fact, the ketogenic diet—a high-fat, adequate-protein, low-carbohydrate diet that’s been around since the 1920s—may be even more effective than most of the newer medications for treating epilepsy.1
But the highly restrictive diet won’t work for everyone. In Tatijana’s case, her many food allergies made the diet impossible. Instead, Tatijana follows an alkaline diet that’s 100 per cent organic and free of all her known allergens.
Since starting The Scotson Technique, Tatijana also eats plenty of fermented vegetables and raw kefir milk, as recommended by Linda Scotson because of their high levels of pre- and probiotics—thought to be beneficial for the brain as well as the gut.