Therapies

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Dravet Syndrome is considered one of the catastrophic paediatric epilepsy syndromes. It is highly resistant to treatment and seizures persist into adulthood. Dravet Syndrome leaves children cognitively and developmentally impaired - often severely and affects almost every aspect of their lives. Developmental assessments should begin as early as possible and be repeated regularly. Early implementation of global therapies is essential. Children with Dravet Syndrome should receive physical, occupational, speech, and social/play therapies and an enriched environment is encouraged. Children with Dravet Syndrome may also benefit from alternative therapies.

We supplement NHS therapies with private therapists to give her as much help as we can. Below are details of the treatments/therapies Neve is currently receiving. Neve will need these therapies on an ongoing basis.

Autism Home Programme

Neve has a tutor for 18-hours a week in addition to now attending school 3-days-a-week. The programme is managed by an autism consultant and we have seen improvements in her language and understanding, her play skills and her fine motor skills as a result of this intensive intervention. Our Local Authority fund a tutor for 12-hours-a-week during term time and Neve's Trust pays forher tutors on weekends and in the school holidays.

Chiropractic

Clinical studies have reported on the effectiveness of chiropractic care for children with many kinds of neurological conditions including learning disorders and behavioural problems. Chiropractic releases stress on the brain and spinal chord and related nerves and can improve many aspects of a child's wellbeing.

Cranial Osteopathy

Neve’s Osteopath applies very specific, skilled, light pressure where necessary to help assist the natural ability of the body to release stresses and tensions. He helps to put right the damage done to the central nervous system after Neve’s seizures and helps to restore balance to Neve's central nervous system.

Developmental Therapy

This is a non-intrusive, drug-free form of treatment for Neve’s developmental delay. The therapy acts to inhibit the obsolete primitive reflexes and allow the adult responses to mature and development to progress.

Ketogenic Diet

The ketogenic diet is a very high fat, adequate protein and low carbohydrate diet that in some children can help to control seizures. The fat is used as the major energy source and the bi-product of this is ketones. This process causes fewer seizures in some children although nobody really knows why. Neve started the diet on 15 March 2010 and since starting the diet has not been in intensive care, the length of her seizures has reduced significantly and her recovery time following a seizure has improved. We have reduced her drugs and she is continuing to make forward developmental progress. You can find out more about the diet at www.thedaisygarland.org.uk

Occupational Therapy

We are working with Paediatric Occupational Therapist to improve Neve’s fine motor skills in order to help her to achieve maximum independence.  This is an area Neve is significantly delayed in. www.hemispheres.org.uk/

Physiotherapy

Physiotherapy helps to develop and maximise each child’s ability to achieve his/her maximum level of functional independence by working towards specific measurable goals. It is also used to prevent the development of, and minimise the effects of recognised complications that can develop on the nature of the child’s underlying condition. Neve started walking at 23 months but is often very wobbly with very poor muscle tone and hypermobility in her ankles and hips. Every seizure seems to have a direct impact on her mobility and so this therapy must be ongoing.

Special Needs Yoga

The benefits of yoga therapy for children with special needs include improving motor control and planning skills, developing muscle tone, balance and respiratory strength, promoting flexibility and correcting posture. Yoga therapy encourages self-regulation of emotions and establishes calm, organised emotional states. It can help children to improve their concentration, the quality and quantity of their sleep, reduce fear and anxiety and release tension. Neve really enjoys her sessions with Sarah, her yoga teacher. www.oaktreeyoga.co.uk

Speech and Language Therapy

Speech is often severely impared in Dravet children and some children have no speech at all. We work very hard every day to help Neve with both her expressive and receptive language i.e. her ability to speak and to understand what is said to her. Her spoken language is improving all the time in both clarity and functionality although she is still very repetitive and echolaic.

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