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For young people / I pobl ifanc

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For young people / I pobl ifanc

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Understanding Deafness - Educational Video

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We are the UKs leading charity for autistic people and their families. Since 1962, we have been providing support, guidance and advice, as well as campaigning for improved rights, services and opportunities to help create a society that works for autistic people.

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We are experts in assessment and support of dyslexia and related conditions. Based in Hertford, we work with individuals to empower them to unleash their full potential.

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For young people / I pobl ifanc

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Additional Learning Needs in Wales – what’s happening?

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A definition of autism with an overview of communication, behaviours and interests, and sensory processing differences needed for an autism diagnosis.

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"Kirsty was so understanding. Although I was made aware that calls were approximately 15 minutes, I didn't feel rushed."

Helpline enquirer

"Rob was very helpful and completely understanding at a time when I felt very isolated about my daughter's education."

Helpline enquirer

"Vivien gave me so many ways forward. Having an email detailing the conversation was incredibly beneficial."

Helpline enquirer

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"Kirsty was so understanding. Although I was made aware that calls were approximately 15 minutes, I didn't feel rushed." Helpline enquirer "Rob was very helpful and completely understanding at a time when I felt very isolated about my daughter's education." Helpline enquirer "Vivien gave me so many ways forward.

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For young people / I pobl ifanc

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Additional learning needs (special educational needs)

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Guidance on supporting children and young people with additional learning needs

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For young people / I pobl ifanc

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Associated health conditions

Common associated health conditions for people with a learning disability include mental health problems, epilepsy, and being underweight or overweight.

Click the conditions below to reveal more information.

Mental health

In 2017/18 severe mental illness was 8.4 times more common in patients with a learning disability than those without.

In 2017/18, 13.3% of patients with a learning disability had an active diagnosis of depression, compared to 12.2% in 2014/15 (NHS Digital, 2019).
Learn more about mental health in people with a learning disability here.

Epilepsy

Research suggests that epilepsy is more common in adults with a learning disability than those without a learning disability; and is more common amongst men and those with a higher level of impairment (McGrother et al. 2006; Epilepsy Society, 2019 ; Robertson et al., 2015).

Estimates vary but in a review of 38 studies, the pooled estimate of prevalence of epilepsy in people with a learning disability was 22% (Robertson et al., 2015).

Being underweight or overweight

The proportion of people with a learning disability receiving body mass index (BMI) checks has increased from 58.3% in 2016/17 to 61.5% in 2017/18.

Of those receiving BMI checks, 6.4% of patients with a recorded learning disability were classified as underweight (BMI ≤18.4), this was higher than for those with no recorded learning disability (4.9%).

Meanwhile, 37.5% of people with a learning disability were classified as obese, this was also greater than those without a learning disability (29.9%) (NHS Digital, 2019).

Dementia

The rate of dementia is high in all people with a learning disability, but is particularly high in people with Down's syndrome.

In 2017/18, the prevalence rate for people with a learning disability aged 55-64 was 4.3%, compared to 0.3% of those with no learning disability.

For a ges 65-74 it was 5.9% for people with a learning disability, compared to 1.1% for those without.

For those aged 75 and over it was 11.2% for people with a learning disability, compared to 8.7% for those without (NIHS Digital, 2019).

Reasonable adjustments

A lack of reasonable adjustments can be a barrier to accessing healthcare settings and to equal healthcare (Ali et al., 2013; Heslop et al., 2013).

The Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) reviews showed the lack of reasonable adjustments provided to people with a learning disability (especially in accessing clinic appointments and investigations) as a contributory factor in a number of avoidable deaths (Heslop et al., 2013).

Healthcare professionals have a legal duty to provide reasonable adjustments for disabled people (Public Health England, 2016). This can include providing easy-read information, avoiding medical jargon or longer appointment times.
Learn more about reasonable adjustments here.

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Common associated health conditions for people with a learning disability include mental health problems, epilepsy, and being underweight or overweight. Click the conditions below to reveal more information. Mental health In 2017/18 severe mental illness was 8.4 times more common in patients with a learning disability than those without.

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For young people / I pobl ifanc

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A learning disability affects the way a person learns new things throughout their lifetime.

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This website places cookies on your computer to improve your experience. By continuing to browse the site, you are agreeing to our use of cookies. For more details, see our privacy policy. I agree

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The British Dyslexia Association is the voice for the 10% of the population that are dyslexic

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For young people / I pobl ifanc

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For young people / I pobl ifanc

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Supporting children, adults & their families affected by Cerebral Palsy. This website is a useful net based resource only, providing information, support & advice for those affected with and by cerebral palsy in the uk.

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Supporting children, adults & their families affected by Cerebral Palsy. This website is a useful net based resource only, providing information, support & advice for those affected with and by cerebral palsy in the uk.

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For young people / I pobl ifanc

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Epilepsy Action support for people with epilepsy. Epilepsy Action is a charity that improves the lives of everyone affected by epilepsy.

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For young people / I pobl ifanc

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Supporting people affected by Osteogenesis Imperfecta
throughout the UK and Ireland

The Brittle Bone Society is the national charity that supports individuals and families affected by Osteogenesis Imperfecta (OI).
We're here to help and support you and your loved ones.

RT @MMU_MSSM: Collaborative @RudyStudy work between researchers in Oxford and @GioOrl1986 @ProfNeilReeves @adireland from MSSM (funded by @...

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RT @MMU_MSSM: Collaborative @RudyStudy work between researchers in Oxford and @GioOrl1986 @ProfNeilReeves @adireland from MSSM (funded by @... Cookies are being used on this site. Please agree to accept these cookies to enjoy the full benefits of the site's features More info

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Welcome to the website for the Children with Diabetes UK Advocacy Group.

We have a large online community of Facebook Groups and a Yahoo email and support group. Having a child diagnosed with Type 1 Diabetes can be a frightening experience. Join our group on Facebook which will put you in touch with other families who are raising children with diabetes. It is open to UK parents and carers who would like to discuss all of the personal and scientific aspects of this condition and how it affects their family's lives. We aim to support families with newly diagnosed children or any families who wish to discuss raising a child with diabetes.

Facebook Groups
UK CWD AG (UK Children with Diabetes Advocacy Group) group for Parents and Carers of Children with Diabetes CWD UK Education - from nursery through to University CWD UK Teens with Diabetes for kids aged 13-15 years old CWD Young Adults with Diabetes 16-25 years old For those not on facebook we have a Yahoo group which can be used like a mailing list: CWD UK Yahoo support and discussion group
Who are we?

The Children with Diabetes UK (CWD UK) online groups and the Children with Diabetes UK Advocacy Group are patient-led support groups for families of children with diabetes living in the UK. It is run by families of children with diabetes. The UK mailing list was founded in 2002 and the UK CWD Advocacy Group was formed in 2006. For over 13 years the mailing list service was provided and supported by Children with Diabetes which operates as an Ohio-based. a not-for-profit corporation, but as technology changed we are now based on Facebook and have a Yahoo Group in place of the original mailing list.

What do we do?

The groups are open to parents/carers who want to discuss all of the personal and scientific aspects of diabetes in children and how it affects their family's lives. We aim to support families with newly diagnosed children or any families who wish to discuss raising a child with diabetes. Our objectives are to increase knowledge and awareness about diabetes and its treatment in children and young people. We share experiences of living with diabetes. We support families who are having problems achieving good control, we increase awareness about new treatments and insulin pump therapy, we support families who are experiencing difficulties in getting support for their children while they are at school or in hospitals. We feel strongly that schools should be given the necessary help and guidance to provide excellent support for children at school. We advocate working in partnership with schools/school personnel with the help of other Patient Groups such as Diabetes UK, INPUT, iPAG, and Juvenile Diabetes Research Foundation to help schools and hospitals to help our children.

All families in England and Wales should join their local Network Group to make their voice heard - More information and all Groups are listed Here

Friends for Life

We have many friends around the world as Children With Diabetes originally hosted our mailing lists when we started as an Advocacy Group. CWD launched a new UK Charity which will run and host their original Friends For Life Conference in the UK. The third UK conference by T-1 Today will be held at Staverton Estate, Daventry, Northamptonshire, October 25-27, 2019. More details to follow.

It promises to be a wonderful weekend of meeting old and making new Friends For Life and seeing our T1 children and their siblings have a wonderful time. If you would like more information, please do not hesitate to contact Gwen Sutherland, at gwen@childrenwithdiabetes.com

Gwen, Ash and their team look forward to meeting lots of new families this year. For more information and how to book visit our events page here

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Children with Diabetes uk, type 1 diabetes support groups. For parents of children with diabetes

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Welcome to the website for the Children with Diabetes UK Advocacy Group. We have a large online community of Facebook Groups and a Yahoo email and support group. Having a child diagnosed with Type 1 Diabetes can be a frightening experience.

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For young people / I pobl ifanc

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Welcome to the BSRF website. Our vision is to have, within 10 years, contributed to discovering the cause of idiopathic scoliosis and to have improved the quality of life for people with all types of scoliosis.

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Welcome to the BSRF website. Our vision is to have, within 10 years, contributed to discovering the cause of idiopathic scoliosis and to have improved the quality of life for people with all types of scoliosis.

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For parents and carers / I rhino a gofalwyr

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Whether you are a new or expectant parent, a professional interested to know about Down syndrome or a member of the public - you've come to the right place!

We hope that our stories and photos reassure you, inspire you and show you the reality of life with Down syndrome. There is a lot of negativity, fear of and ignorance around Down syndrome, but we are the experts on living with someone with Down syndrome and these stories are written honestly from experience and absolute understanding.

#NobodyToldMe is a collection of personal experiences written by young people with Down syndrome, their friends and family.

#NobodyToldMe challenges outdated perceptions and attitudes towards those with Down syndrome by showing the reality of our lives.

We, too, have experienced receiving the news that our baby has Down syndrome, so we know how you're feeling, what you're worried about, or what you are feeling guilty for thinking. We are delighted to have this opportunity to share a little of our lives with you to try to address some of those feelings.

There are groups all around the UK, offering a range of support and community.

Click the button below to see a map showing what groups there are near you.

The stories here are our true and personal experiences. PADS is not affiliated with any religious or political organisation.

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Positive About Down Syndrome - A website by parents for parents and parents-to-be

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Whether you are a new or expectant parent, a professional interested to know about Down syndrome or a member of the public - you've come to the right place! We hope that our stories and photos reassure you, inspire you and show you the reality of life with Down syndrome.

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What is it?

Tourette syndrome (TS) is a neurological disorder that was first diagnosed and described by the French neurologist Dr George Gilles de la Tourette in 1825, though several historical figures are now thought to have been sufferers before then, including Samuel Johnson and Mozart. Tourette syndrome is characterised by the occurrence of a combination of involuntary physical (motor) and vocal tics (not necessarily simultaneously), nearly every day or intermittently over the course of a year. It tends to develop before the age of 21, and most often around the age of 7. The condition is not life threatening, and is very often so mild that it does not require treatment. It may become worse through adolescence, and sometimes improves with age.

Symptoms

Common examples of motor tics include eye twitching/blinking, facial grimacing, head jerking, shoulder shrugging, jumping, kicking, finger movements, jaw snapping, tooth clicking, frowning and touching people. Vocal tics include throat clearing, hissing, yelping, sniffing, grunting, tongue clicking, uttering words or phrases inappropriately (echoing others, or blurting out obscene words), repeating the same phrase several times.

People with TS often have an IQ equal to their peers. However, the condition is often associated with other behavioural and neurological problems, such as obsessions, compulsive behaviour, autism, hyperactivity and ADHD, impulse control difficulty, sleep disorders, anxiety, depression, restless leg syndrome, heightened sensitivity to sensory stimuli and learning difficulties.

What causes Tourette syndrome?

It is thought that tics are caused by the abnormal metabolising of certain brain neurotransmitters, including dopamine and serotonin, which results in inappropriate signals being sent from the brain. Neurotransmitters are natural chemicals that carry a signal from one nerve cell to another at specific spots called receptors. Research indicates that tics are related to dopamine receptors which are supersensitive to dopamine in the basal ganglia the area of the brain involved with movement control and activity. Other studies suggest that tics may be caused by higher than normal levels of dopamine production and use.

Some researchers also claim that TS patients have low levels of serotonin, which has been linked with some of the symptoms of TS including obsessive compulsive disorder (OCD), depression and sleep disturbances.

There is almost certainly some genetic influence on the development of Tourette syndrome it is observed to run in families (an individual with TS has a 50% chance of passing the predisposition on to each child); however, there is growing evidence that environmental and dietary factors can play a significant part in aggravating the symptoms. In fact, some diagnosed sufferers claim that they do not actually have Tourette syndrome, but a collection of allergies which mimic the symptoms of TS. Since diagnosis is made by observation, and the elimination of other possible conditions such as Sydenham's Chorea, this cannot be ruled out. Although there is no comprehensive cure for TS there are many approaches to controlling the symptoms.

What are the treatment options?

Conventional approach

Medication
Different medications are used to target specific symptoms associated with TS. This makes the drugs more effective to treat one symptom but can result sometimes in exacerbating the other symptoms.

Medication to reduce tics

Neuroleptics (tranquilisers)
They counteract dopamine over-activity by blocking dopamine receptors.

Haloperidol (Haldol, Dozic, Serenace)

Pimozide (Orap)

Risperidone (Risperdal)

Mellaril

Navane

Fluphenazine (Prolixin)

Sulpiride (Dolmatil, Sulparex, Sulpitil)

Clonazepam (Rivotril)

Side effects: Patients need to be monitored carefully, there is a risk that they may develop an involuntary movement disorder called tardive dyskinesia. Other side effects include drooling, contraction of the facial and neck muscles, slow movement (bradykinesia), restlessness, tremors, fatigue, depression, anxiety, weight gain, irritability, dizziness, headaches, and insomnia.

Botulinum toxin (BTX)
Tiny amounts of this chemical poison, which comes from the bacteriumClostridium Botulinum, were found to temporarily paralyse muscles and nerves. BTX has therefore been used as a treatment option for cerebral palsy and dystonia. In Tourette, it is injected into the muscles involved in tics.

The antihypertensive agents clonidine (trade name Catapres) and guanfacine (Tenex) are also used to treat tics; studies show variable efficacy, but a lower side effect profile than the neuroleptics

Medication to reduce Obsessive Compulsive Disorder tendencies

Medication to reduce Attention Deficit Hyperactivity Disorder tendencies

Behavioural therapies

Habit reversal training
This technique helps people deal with their habits through awareness and new patterns of behaviours. Sometimes a mirror is used.

Awareness training
Individuals with TS are taught to become more aware of their tics. The therapist or member of the family alerts the patient each time a tic is observed. Individuals also learn to self monitor their behaviour and identify situations, persons or places in which symptoms are better or worse

Competing response training
Individuals learn a new and opposite response to a usual behaviour such as motor or verbal tics. For instance patients who usually blurt out obscene words learn to substitute these words for a more acceptable one. For head jerking back they are taught to contract the neck flexors and keep their chin slightly down and in.

Reward charts
Tasks can be set up for children to perform. They can then write their achievements on a chart which helps them track their progress and earn small rewards for treatment gains. You can download charts from the Latitudes website at: http://www.latitudes.org/behavioral_charts.html

Exposure response prevention
This technique is used in the treatment of OCD. It is beloved that compulsions are created because they provide temporary relief from obsessions and anxiety. Situations or objects that trigger obsessions and compulsions are first identified by the therapist. They are then presented to the patient who is prevented from reacting with the usual compulsive behaviours until he/she become habituated to the obsessions and dismiss them.

Complementary approach

Many people who have identified particular allergens that trigger their tics claim that contact with the substance explains the 'mysterious waxing and waning' of the symptoms which many conventional doctors accept as part of the nature of the condition.

Allergens may be natural or artificial chemicals in food or in the environment. They may be identified by means of blood tests, or by eliminating them and observing any changes. People can react in very different ways to certain substances - two individuals who are allergic to the same substance may express this allergy in quite different ways; it has been suggested that some people have 'target organs' that are affected by environmental exposure: this could be the lungs (asthma), the skin or the joints for example while those with neurological allergies may develop ticcing.

The Association for Comprehensive NeuroTherapy (ACN), in America, conducted a survey on 51 people who suffered from TS in 1996 . All were asked the following question: "Have you ever suspected that something, aside from stress, triggered or aggravated TS symptoms?" The following answers were given:

Other possible allergens include: pesticides, sodium nitrate, nightshade foods (tomatoes, potatoes, peppers, aubergine), Sudafed.

- It is also believed that a deficiency in phenol sulfur-transferaes (PST), an essential enzyme that breaks down products of foods, hormones and chemicals no longer needed, may create a build up of the neurotransmitter dopamine. In 1998 Rosemary Waring from the School of Biochemistry at the University of Birmingham showed that salicylates, natural chemicals found in fruits, vegetables, plants, nuts and aspirin, can suppress the production of PST.

- According to Stephen Edelson* food, chemical and environmental allergens may trigger a release of serotonin which causes decreased blood flow in the basal ganglia (see page 1) thus resulting in tics.

- Dr Doris Rapp, a paediatric allergist, has written several articles and books on allergies and behavioural problems. For more information visit her website at: http://www.drrapp.com/.

- Further interesting articles can be found on the internet at: www.mothering.com (search for 'tourette')

For more information on allergies ask for our fact sheets on allergies, the Feingold food programme, candida, gluten and casein allergies.

Latitudes - a publication produced by: Association for Comprehensive NeuroTherapy P.O. Box 210848
Royal Palm Beach, FL 33421-0848
USA
Tel: (001) 561.798.0472
www.latitudes.org
A nonprofit organisation dedicated to exploring advanced and complementary treatments for neurological conditions.

Anecdotal reports suggest that many TS sufferers have benefited from the use of nutritional supplements, though there is little research in this area. There are no specific deficiencies associated with TS, but the following supplements have proved effective for some:

B-Complex vitamins: Vitamin B3 (niacin), B6, folic acid, inositol, choline and B12. They act like natural tranquilisers on the nervous system.

Zinc: Another tranquilliser.

Magnesium plays an essential role in the nervous system and promotes muscle action as well as proper absorption of vitamins B, C and E.

Antioxidants - A, C, E, selenium

Pycnogenol: It regulates enzymes that help control dopamine.

Tryptophan: This amino acid is essential for the production of vitamin B3 which is vital for the brain to manufacture serotonin. Tryptophan is naturally found in bananas, beans, brewer's yeast, brown rice, soy, cottage cheese, dairy products, dates, eggs, nuts, peanuts, seeds, seafood, fish, and turkey. Its synthetic form has been banned in several countries for safety reasons.
For more information on the action of Tryptophan and TS visit the Cognitive Enhancement Research Institute's webpage at:http://www.ceri.com/tourett.htm

Lecithin

Glycine

Taurine

Flaxseed oil

Evening primrose oil

DMAE (Dimethylaminoethanol)

DMG (Dimethylglycine)

Blue green algae

See our fact sheets on magnesium, pycnogenol and evening primrose oil.

Bonnie Grimaldi, a medical technologist and mother of a teenage boy with TS, has devised an extensive regime of dietary supplements. She recently wrote an article on the correlation between magnesium deficiency and Tourette:
Grimaldi BL. The central role of magnesium deficiency in Tourette's syndrome: causal relationships between magnesium deficiency, altered biochemical pathways and symptoms relating to Tourette's syndrome and several reported comorbid conditions.Med Hypotheses 2002 Jan;58(1):47-60.

For more information on Bonnie Grimaldi's supplements contact:

Bontech Supplements Ltd *
PO Box 171
Pickerington
Ohio 43147
USA
Tel: (001) 614-837-7545
http://bonniegr.com/
*Please note this is a commercial company.

Homeopathy comes from the Greek words " homios" which means similar and " pathos" which means suffering, Homeopathy is based on three principles:

1 The principle of similars or that "like cures like": homeopathic remedies treat illnesses with a substance that produces, in a healthy person, similar symptoms to those displayed by the person who is ill, for example Allium Cepia, a remedy created from red onion, is used to treat patients whose symptoms include watery eyes and a runny nose.

2 The principle of infinitesimal dose: Homeopathy works the opposite way of conventional medicine where a minimum dose is required for effect. the more a remedy is diluted the more potent it becomes, the more specific its effects are and the longer they last.
It is believed that homeopathic remedies are diluted to such a degree that no atom of the original substance is left in the final remedy, how the remedies work is not well understood hence the scepticism of many physicians. Homeopaths believe the answer is to be found in the domain of quantum physics, the water and alcohol mixture remember that the substance was once there. They claim that continued dilution and shaking or"succussion" can imprint the electromagnetic signal of a substance in the water.

3 The principle of specificity of the individual: The treatments are individualised: each individual has a symptom profile and it is likely that two individuals with the same condition will be given different medicines. Practitioners look at the whole person not just the condition. They will ask a series of questions about the medical history, moods, likes and dislikes, diet, chronic disorders or traumas of the patient in order to draw a list of symptoms, they pay special attention to unusual symptoms. The choice of remedies depends more on the patient's individual reaction to illness, mentally and emotionally, than on the signs and symptoms characteristic of the disease. The remedy that fits all the symptoms of a person is called "similimum" for that person.

There are over 2000 homeopathic remedies. They are made from plants, minerals, metals or animals. Their Latin name indicates the substance they were created from. The remedies are extremely pure, they come in the form of lactose tablets, powder, granules, or as a liquid. Parts of the original substance are dissolved in alcohol to create the mother tincture (MT). This liquid is shaken ("succussed") several times, 1 drop is mixed with various ratios of distilled water: 1 in 10 (x dilutions), or 1 in 100 (c dilutions). For example 2C (2CH in Europe) dilution means that 1 part of mother tincture is mixed with 99 parts of water and alcohol, then shaken (1C), then 1 part of this liquid is mixed with another 99 parts and shaken (2C).

Remedies should be taken at least half an hour before or after taking food or drink. Avoid strong-tasting substances such as peppermint (toothpaste that doesn't contain mint is available at health food stores), eucalyptus, camomile, camphor, coffee and tobacco. Granules or tablets should be dissolved under the tongue for best results and it is advised not to touch them with fingers otherwise they will lose their properties.

Long-standing complaints are believed to take longer to treat. Symptoms may often get worse before they begin to get better, this reaction is called "the healing crisis".

There are a number of basic principles behind the administering of herbs to treat illness: One is that people are treated, not the symptoms. This means that it is hard to say which of a number of possible herbs will be most effective on an individual's symptom, without a full understanding of the individual's physiological and psychological make-up and general state of health. It is a holistic treatment, and the cause of the symptoms must be addressed for it to be most effective. For example, St John's Wort is now fairly well recognised as a useful anti-depressant; however, it is only effective on the type of person who needs their nervous system calmed, whereas some depressives need their nervous system stimulated.

Another, related, principle is that the body heals itself - herbs are prescribed not to artificially introduce an action into the system, as is the case with conventional medicine, but rather to restore balance in the body. Different herbs stimulate or suppress the action of different systems in the body.

Further, 'herbal synergy' is important - this is the idea that the different natural chemicals that are found in a single plant all work together in the body. It is thought to explain why the chemicals, when extracted and used in isolation may have side effects, which do not occur if the whole plant is taken.

Before a herb, or most often a combination of herbs, can be prescribed the practitioner will first assess the patient's condition by means of verbal and physical examination. It is particularly important to ascertain whether the body is predominantly hot or cold, as indicated by blood heat. Heat is symptomatic of over-activity in the functions of organs, and coldness, under-activity. It is also important to learn whether the body is damp (as indicated by clamminess and urine flow) or dry.

Many herbal preparations are available over-the-counter from health food shops and pharmacies. It is important to choose good suppliers, and to follow the instructions on the label. It is also possible to prepare simple herbal teas: however herbalism is holistic and does not treat symptoms in isolation. For this reason, it is often best to seek professional advice.

200-300 different herbs are used by Western herbalists. The petals, seeds, leaves, flowers, roots, berries and internal gel of plants are all used medicinally - the different parts of the same plant can have quite different properties. They tend to be dried, but may also be used fresh.

The plants can be prepared in a variety of ways, and are often combined. The most common forms of preparation are:

decoctions - tough parts of the plant are boiled in water; the liquid containing the active ingredients is then strained.
tinctures - the herb is soaked in alcohol and water for two weeks, then strained in a muslin-lined wine press.
infusions - the herbs are covered with very hot water and left to steep for ten minutes. The resulting liquid is much like a tea, and may be sweetened with honey.
infused oils - used for massage, these oils may be made by placing the herbs and oil over heat, or they may just be left in sunlight.
creams - oil, water, glycerine and herbs are simmered for several hours, before being strained and left to set.
ointments - oil and herbs are combined over heat, then strained and left to set. These are particularly useful for when the skin needs to be protected from moisture.
Tablets/capsules

Cautions
Well-prescribed and well-prepared herbal remedies are usually free from unpleasant side-effects, after-effects and allergic reactions. However, excessive intake of beneficial herbal remedies can be toxic. If you are taking any conventional medicines, seek advice from a herbalist to avoid herb/drug interactions. For example, ginseng may react with the anti-depressant phenelzine. Do not discontinue medication without consulting your doctor.

Never buy herbal products by mail order - you have no guarantee that they are safe.

Essential oils, extracted from the roots, flowers, fruits, leaves and stalks of plants and certain trees, are absorbed in the body by inhalation and through the skin. The scents released in aromatherapy stimulate the hypothalamus, the area of the brain influencing the body's hormone system. It is thought that mood, metabolism and stress levels can be affected by smell. It is not well understood how the oil molecules actually enter the bloodstream, but the psychological effects have been well studied. Some essential oils are believed to be uplifting while others have a relaxing and calming effect.

A range of oils is used in treatment (some are not appropriate in pregnancy, for young children or for certain conditions). Trained aromatherapists use high-quality, natural oils diluted in a "'carrier" oil or blended into a cream. Lower dilutions are used for sensitive skin and in pregnancy. Practitioners should only use oils that are organic and bought from reputable companies. Aromatherapy massage techniques are based on Swedish massage which aims to relieve tension in the body and to improve circulation as well as stimulating the lymphatic system to assist removal of metabolic wastes from the body. The patient may also be asked to use certain oils under the supervision of the practitioner in inhalations: adding a few drops on a handkerchief or in a bowl of hot water, or by using compresses and baths. Light bulb, candle lit or electric diffusers are also popular and relatively safe.

Essential oils should not be used neat on the skin or applied near the eyes.
Although aromatherapy can be beneficial during pregnancy the following oils should not be used by pregnant women: German camomile, clary sage, rosemary, basil, peppermint, cedarwood, cypress, juniper, hyssop, myrrh, nutmeg, origanum, fennel, pennyroyal, marjoram, cinnamon, and clove.
Rosemary, hyssop, sweet fennel, sage and wormwood should also be avoided by epileptics while peppermint and thyme must not be given to small children.
Peppermint and camomile block the therapeutic effects of homeopathy, these oils should be used at least half an hour before taking homeopathy.

International Society of Professional Aromatherapists
ISPA House
82 Ashby Road
Hinckley
Leicestershire LE10 1SN
Tel: 01455 637987

Acupuncture consists of the insertion of one or several small metal needles into the skin and underlying tissues at precise points on the body as a treatment for various disorders.

Acupuncture is only one element of traditional Chinese medicine, which also includes herbs, acupressure, exercise and diet. Acupuncture grew out of ancient Chinese philosophy of the yin and the yang. The forces of yin and yang are thought to act in the human body as they do throughout the natural universe as a whole. Disease or physical disharmony is caused by an imbalance or dominance of one of these two forces in the body, and the goal of Chinese medicine is to bring the yin and the yang back into balance with each other, thus restoring health.

An imbalance of yin and yang is thought to obstruct the vital life force, or the chi, in the body. The fundamental energy of the chi flows through 14 main meridians, or pathways, in the body, each in turn is associated with a major organ (liver, kidney, etc.) or body function. Acupuncture aims to affect the distribution of yin and yang in these channels so that the chi can flow freely and harmoniously. Disruption on a meridian can create illness at other points along it; for example, a disorder of the stomach meridian could be manifested as pain in the gums.

The actual practice of acupuncture consists of inserting needles into any of hundreds of points located over the 12 basic meridians and over a number of specialised meridians. Once inserted, a needle may be twisted, twirled, or connected to a low-voltage alternating current.

The stimulation of acupuncture selectively acts on impulse transmission to the central nervous system, thus closing certain neurological "gates" and blocking the transmission of impulses from other parts of the body.

The practitioner often inserts needles at a considerable distance from the point on which they are to act; for example, a needle inserted into the pad of the thumb is used to produce analgesia in the abdomen. Similarly, successive points on a specific meridian may affect widely different areas or conditions.

Other acupuncture techniques include moxibustion in which the herb moxa is burnt to create heat to stimulate the acupoints. In cupping, glass cups may be placed over the points in order to draw blood towards them.

Electro-acupuncture was developed in China in the 1950s. A low-intensity pulsing electric current is applied to the needles to stimulate the acupoints and can reach a number of acupoints simultaneously. Laser acupuncture directs a fine, low-energy laser beam on to the acupoint - particularly useful for patients with an aversion to needles.

Chinese researchers Wu, Li and Kang claim that out of 156 cases of Tourette syndrome, 92.3% were effectively treated by acupuncture. (J Tradit Chin Med 1996 Sep;16(3):211-3).

Always see a qualified practitioner. Acupuncture is an invasive therapy and therefore not without risk. Ensure needles used are sterilised or preferably that new disposable needles are used each time.

Researchers believe that there are many cannabinoid and nicotine receptors in the brain. When these two substances are absorbed in the body they bind to the receptors and inhibit the release of dopamine.

Nicotine
Neuroleptics block the release of dopamine which results in a decrease of tics (see page 2) but conversely researchers found that low levels of dopamine were causing tremors, shaking and sedation. Sanberg studied the effect of nicotine patches on children with TS who were taking medication and discovered that nicotine enhanced the therapeutic properties of neuroleptics without causing the above side effects. (Sanberg PR, Silver AA, Shytle RD. Nicotine for the treatment of Tourette's syndrome. Pharmacol Ther 1997;74(1):21-5).

Although no evidence was found to show that these children became dependent on nicotine, signs of nausea and dizziness were reported. Researchers are currently looking into possible nicotine substitutes that would eradicate these side effects.

Several studies have been conducted on the effects of nicotine on TS:

- Tizabi Y, Russell LT, Johnson M, Darmani NA. Nicotine attenuates DOI-induced head-twitch response in mice implications for Tourette syndrome. Prog Neuropsychopharmacol Biol Psychiatry. 2001 Oct;25(7):1445-57..

- Gaynor CM, Handley SL Effects of nicotine on head-shakes and tryptophan metabolites.Psychopharmacology. Psychopharmacology (Berl). 2001 Jan;153(3):327-33.

- Silver AA, Shytle RD, Philipp MK, Wilkinson BJ, McConville B, Sanberg PR. Transdermal nicotine and haloperidol in Tourette's disorder: a double-blind placebo-controlled study. J Clin Psychiatry 2001 Sep; 62(9): 707-14.

- Elazar Z, Paz M Potentiation of haloperidol catalepsy by microinjections of nicotine into the striatum or pons in rats. Life Sci.1999; 64(13): 117-25.

Cautions: medication containing nicotine is not yet available. Do not use nicotine products on children.

Cannabis
It is still not clear how cannabis can reduce tics but it has been suggested that cannabinoid receptors may interact with dopamine receptors.

Studies conducted by Dr Muller-Vahl showed that the action of one of the main active chemical compounds in cannabis, Delta(9)-THC, can reduce tics.

- Muller-Vahl KR, Schneider U, Koblenz A Treatment of Tourette's Syndrome with Delta9-Tetrahydrocannabinol (THC): A Randomized Crossover Trial. Pharmacopsychiatry 2002 Mar;35(2):57-61.

- Muller-Vahl KR, Kolbe H, Schneider U, Emrich HM. Cannabis in movement disorders. Forsch Komplementarmed 1999 Oct;6 Suppl 3:23-7.

- Muller-Vahl KR, Kolbe H, Schneider U, Emrich HM. Cannabinoids: possible role in patho-physiology and therapy of Gilles de la Tourette syndrome. Acta Psychiatr Scand 1998 Dec;98(6):502-6.

- Muller-Vahl KR, Kolbe H, Dengler R.[Gilles de la Tourette syndrome. Effect of nicotine, alcohol and marihuana on clinical symptoms] Nervenarzt 1997 Dec;68(12):985.

Caution: cannabis is an illegal substance in most countries.

With this method, alternative patterns of movement are explored. The aim is to enhance easy movement by creating minimum effort for maximum efficiency. Physical movement is used to re-educate the brain.
The method is based on two principles: " awareness through movement" and " functional Integration":

"Awareness through movement" is usually taught in a group, Feldenkrais practitioners see themselves as teachers, they make their students aware of how they carry out movements out of habit, and then they work on re-training them to use a proper sequence of movements by giving them verbal directions. During each session movements are organised around a theme.

In "functional Integration" sessions take place on a one-on-one basis and are custom-tailored. The therapist uses slow and gentle touch on the client who lies on a padded table fully clothed. The therapist feeds back information to the client who in turn is asked to make the changes. According to Feldenkrais there is a strong connection between the body and the mind, for instance bad posture reflects the state of the nervous system, based on this idea individuals can subconsciously answer to movement and touch.

The International Feldenkrais Federation
http://www.feldenkrais-method.org/

MIND TECHNIQUES
It is believed that stress can trigger tics. Relaxation techniques can reduce stress and help individuals to better control their mind.

- Michultka DM, Blanchard EB, Rosenblum EL. Stress management and Gilles de la Tourette's syndrome. Biofeedback Self Regul 1989 Jun;14(2):115-23. "The present study examined relaxation training and desensitization training as a method of reducing the frequency and intensity of tics and the distress they caused in a young adult diagnosed with Tourette's syndrome. Inspection of data suggests that both components of stress management added to total treatment efficacy."

Based on the principle that the mind is intrinsically linked to the body and that our emotions affect our body, biofeedback teaches patients how to be aware of physiological functions that are normally automatic and unconscious and how to use this internal information to improve their health. Using measuring devices patients learn how to monitor their body responses (heart beat, skin temperature, blood pressure, respiratory patterns, brain wave activity or muscle tension) in order to control them.
Biofeedback is a non-invasive and painless process, the information is fed back in the form of a light, sound or needle sign on a screen. Once the patients recognise changes in their physical states, they learn how to alter them with guided imaginary or relaxation techniques. After a few sessions they are able to notice these responses and to control them without devices.

Neurotherapy used in neurofeedback, is an advanced form of biofeedback. Neurotherapy means increasing moments of heightened alertness. It uses a specialised brain scan to observe the brain waves of children with ADD/ADHD. These children show brain waves which are smaller and/or slower than normal psychological reactions to brain stimuli. For ADD children medication with amphetamines is believed to stimulate the brain enough for them to focus and pay attention. Hyperactivity is believed to be a coping mechanism to maintain normal arousal. When hyperactive children are first able to sit still, they rapidly go into a drowsy state.

The child has metal discs placed on the scalp that pick up electrical signals from the brain (a simple and painless procedure). An attached computer analyses the brain waves and by means of sounds and changing screen displays, lets the child know when they are producing patterns consistent with alertness. These periods of activation are then reinforced with exercises. With this aid the child can learn self-control. Initially the increases in alertness are small and fleeting, but through practice and encouragement, greater improvements can be seen.

The average length of neurotherapy treatment is 50 sessions. Though benefits can be noticed after about 10 sessions, it is recommended that treatment be continued in order to solidify skills learned. Two sessions per week are normal. The 50 sessions include a weaning off period, aimed at maximising the likelihood that the benefits of neurotherapy will last beyond the sessions.

A study by Tansey showed that biofeedback may be a successful treatment to reduce tics because it increases voluntary muscle control (A simple and a complex tic (Gilles de la Tourette's syndrome): their response to EEG sensorimotor rhythm biofeedback training. Int J Psychophysiol 1986 Jul;4(2):91-7).

Association for Applied Psychophysiology and Biofeedback (AAPB)
10200 W. 44th Avenue
Suite 304
Wheat Ridge
CO 80033-2840
USA
Tel: (001) 303 422 8436
http://www.aapb.org/

EEG Spectrum
Neurofeedback Research and Clinical Services
16500 Ventura Blvd
Suite 418
Encino
CA 91436-2011
Tel: (001) 818 789 3456
http://www.eegspectrum.com/

EEG Neurofeedback Services
Dolphin Lodge
Dolphin Yard
Holywell Hill
St. Albans
Herts AL1 1EZ
Tel: 01727 839533
http://www.eegneurofeedback.net/

Neuro-linguistic programming is a form of psychotherapy that was devised in the 1970s by linguist John Grinder and therapist Richard Bandler. The main principle is that our life experiences programme the way we see the world and ourselves, and the way we communicate with others. The way we think is revealed not only by our choice of words, but through our body language and eye movements and even subtle changes in skin colour/perspiration. The therapist draws the patient's attention to any unconscious thought patterns that may be having a detrimental effect on the patient's overall mental and even physical well-being, and attempts to 're-programme' their responses to the situation.

Neuro-linguistic programming has applications in the general contexts of sport, business, sales and education, as it can be a powerful tool in fostering self-confidence and effective communication. However, as a form of therapy, the focus tends to be the patient's attitude towards their illness. For example, a neuro-linguistic therapist would interpret someone who views themselves as 'an asthmatic', rather than 'a person with asthma', as having let the condition take over. Negative patterns of thought are modified, so that the patient feels less limited by their illness, and their body's natural healing systems can be more effective; it is thought that the immune system may be stimulated by such a process.

Although neuro-linguistic programming is related to hypnotherapy, the practitioner does not usually induce a trance state in the patient. The patient and therapist will discuss the desired outcome of the therapy at each session, and what the patient feels they are doing to achieve it. The number of sessions required varies, but results are often seen after a relatively short period.

Many self-help books and videos are available, but it is advisable to consult a practitioner at the first stage.

The nature of the hypnotic trance is not as mysterious as some people think. It is a state that most of us naturally drift in and out of during the course of a day: when we become engrossed in a task or a film, when we drive home on 'automatic pilot', when daydreaming. The conscious mind has been likened to the tip of an iceberg, (with the unconscious underneath the surface, much larger, and very powerful), and to the ram power on a computer (which is only a fraction of the hard drive's capacity).

In physical terms, it is thought that the left, analytical side of the brain becomes less active, while the right, imaginative, emotional side becomes more active. During deep hypnosis the metabolism, breathing and heartbeat slow down, and the brain produces alpha-waves, which indicate deep relaxation and are also induced by meditation.

Although the word derives from the Greek hypnos - 'sleep', the hypnotic state is quite different from sleep, and the patient will almost certainly remember the whole experience. The hypnotist encourages the patient to enter the trance-state, more or less deeply, but it is not possible for it to be imposed upon the patient. Further, patients cannot be encouraged to do anything they don't want to, as they are still in control and their conscious mind is protecting them from unreasonable suggestions.

Hypnotherapy itself can take several different forms. The most usual form is 'suggestion hypnotherapy', which aims to break patterns of thought and behaviour by means of positive suggestions and imagery. Pain can also be managed in a similar way. Less common is analytical 'age regression' hypnotherapy, during which a patient is encouraged to recall buried memories or emotions, which may be at the root of the present problem. This process may be traumatic unless carried out by a competent therapist.

Initially the therapist will ask about the patient's physical and mental health, likes and dislikes and motivation to resolve any problem. When the patient is ready to enter the hypnotic trance, the therapist will make him/her relax by asking him/her to visualise a place or scene, or a counting method may be used. Depending on the problem, the therapist may proceed straight to implanting positive suggestions, or some analytic discussion may take place.

A successful story using hypnotherapy on an adolescent was reported by Culbertson:A four-step hypnotherapy model for Gilles de la Tourette's syndrome. Am J Clin Hypn 1989 Apr;31(4):252-6

British Society of Experimental and Clinical Hypnosis
c/o Dept of Psychology
Grimsby General Hospital
Scartho Road
Grimsby DN33 2BA
Tel: 01472 879 238

Other therapies that induce relaxation and control of the mind and body include yoga, autogenic therapy and meditation. (See individual fact sheets).

Therapies used in the treatment of ADHD and autism may also be beneficial to patients with TS. See our fact sheets on Auditory Integration Training, the Tomatis method, brushing therapy, Irlen lenses, Sunflower, Son Rise, Teacch, cranial osteopathy, Lovaas therapy, secretin and smart drugs.

Resources

Organisations

Tourette Syndrome Support UK
http://www.tourettesyndrome.co.uk/ Website created by a mother

These are some of the references that have been passed to us; the list is not exhaustive. We have not necessarily read the books, and cannot say how easy it will be to get them.

- R Anderson. First steps to a physical basis of concentration ISBN: 1899836349
- T Krueger. Taking Tourette syndrome to school. ISBN: 1891383124
- JF Leckman, DJ Cohen. Tourette's Syndrome - Tics, Obsessions, Compulsions. Developmental Psychopathology and Clinical Care. ISBN: 0471113751
- D Comings. Tourette Syndrome and Human Behavior. ISBN: 1878267280
- A Ward Seligman, J.S. Hilkevich. Don't Think About Monkeys. Extraordinary Stories Written by People with Tourette Syndrome. ISBN: 1878267337.
- M.M. Robertson, S. Baron-Cohen Tourette Syndrome: the Facts. ISBN: 019852398X
- D Rapp – Is This Your Child? ISBN 0688119077

http://www.tourette-syndrome.com/ Tourette Syndrome Online
http://www.tourettesyndrome.net/ Tourette Syndrome Plus - comprehensive information

www.counselling-directory.org.uk Counselling Directory is a comprehensive database of UK counsellors and psychotherapists, with information on their training and experience, fees and contact details.

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Tourette syndrome (TS) is a neurological disorder that was first diagnosed and described by the French neurologist Dr George Gilles de la Tourette in 1825, though several historical figures are now thought to have been sufferers before then, including Samuel Johnson and Mozart.

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For young people / I pobl ifanc

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Muscular Dystrophy UK is the UK's leading charity bringing together more than 60 rare and very rare progressive muscle-weakening and wasting conditions,

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About one in 400 children born alive has cerebral palsy. An expert explains causes, symptoms and treatment

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The Epilepsy Space: What do people get wrong about epilepsy?

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Real Families: Living with Tourette's Syndrome | Children's Journey

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Foundation for People with Learning Disabilities

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