Take back control: what can you do to help a child with CASK?

CONDUCTIVE EDUCATION – Created in Hungary in the 1940s to help children with cerebral palsy, there are a number of conductive education institutions in the UK. They use repeated exercises and songs to teach the individual how to specifically and consciously move and perform actions. 

INTENSIVE THERAPY –  There are growing numbers of studies that show that intensive sessions once or twice a year have more affect on a child’s development than regular weekly sessions over a year period. For example, physiotherapy three hours a day for a month is likely to have more benefits than an hour of physio once a week for twelve months. The VTCRI neuromotor research centre in Virginia, USA specialises in treating CASK children using intensive therapy.

Click here for a list of centres around the world that provide intensive therapy.

CUEVAS MEDEK EXERCISE (CME) – This is a form of therapy that is used to treat children who have a motor delay, which could be a result of several different conditions. The therapy aims to encourage the recovery of children’s motor functions. It was developed by Ramon Cuevas in Venezuela in the 1970s. Watch him providing treatment in the video below. There are very few practitioners in the UK but a number of CASK families have found this treatment effective for their child.

WHOLE BODY VIBRATION TECHNOLOGY – There is no scientific evidence that vibration platforms work for severe neurological conditions like CASK. There is limited evidence it can help with nerve regeneration. Vibration plates may be used as part of intensive therapy sessions. Several CASK pupils have shown improvements after using vibration platforms as part of intensive therapy sessions.

PRIMATIVE REFLEX INTEGRATION – There is evidence that many children with developmental problems have retained primitive reflexes. In order for the child to progress they must become integrated. Specific exercises can help with this and they are often included in intensive therapy session. B.I.R.D. is a charity that specialises in primitive relflex integration. The book “The Symphony of Reflexes” by Bonnie Brandes is educational in this matter.

LYCRA SUITS – These are often provided by the NHS. They support the body, provide sensory feedback, proprioception and promote improved posture and stability. Ask your physio about this.

EQUINE THERAPY – Horse riding is a form of physiotherapy, providing the child with lots of sensory feedback whilst also working the core muscles. Contact your local Riding for the Disabled to find out if they can help your family.

MUSIC THERAPY – CASK children seem to universally love music.

REBOUND THERAPY – This is a therapy where trampolines are used to exercise the body. It provides opportunities for enhanced movement patterns, therapeutic positioning, exercise and recreation for a wide range of users with additional needs.

LOW LEVEL LASER THERAPY (LLLT) – Sometimes known as Low Level Light Therapy or Photobiomodulation (PBM) this is therapy that uses light boxes emitting red and/or near infrared light. The light triggers biochemical changes within cells. It is thought that the mitochondria in cells can absorb and harness the energy, increasing cellular efficiency and proliferation. There is substantial evidence that LLLT is effective in pain management. It is inconclusive whether it can help neurological or metabolic conditions, but the science is suggestive that it may.

SUPPLEMENTS – The child should be tested for deficiencies, such as iron, zinc, B12, folic acid and carnitine. Most of these can be detected by a simple blood test, but some may require a lumbar puncture. Taking other, more common supplements, such as multi vitamins and Omega 3 is also recommended by neurologists.

What help should a CASK child be offered?

PHYSIOTHERAPY – the child should be offered regular physiotherapy sessions. The cerebellum is the brain’s movement control centre and so it is unsurprising that affected individuals suffer from poor balance, coordination and impaired motor skills. It is important that they do regular exercises.

SPEECH AND LANGUAGE – It is essential that an SLT (speech and language therapist) is assigned to the child since language and communication problems are common in every CASK child. They are also necessary to check safe swallowing and any feeding problems that may occur.

OCCUPATIONAL THERAPIST – NHS occupational therapists tend to focus more on equipment that enables them to do day to day activities (sleeping, eating and playing) rather than the actual life skills, although this may depend on the Local Authority.

SPECIALIST EQUIPMENT – depending on the severity of the symptoms, a child should be provided with a chair offering postural support to eat and play in, a standing frame (standing is necessary for bone density and helps with correct hip formation), a wheel chair (although the age at which this is provided will vary depending on the child’s needs and size), a medical bed if required, a bath chair (a child should be able to bathe safely) and, when/if the time comes, a council OT to assess housing and implement a plan to adapt it for future needs. The child’s physio and OT should organise these. Do not be afraid to request equipment or chase up appointments.

DIETICIAN – If the child’s weight or feeding is an issue, a dietician must be provided by the NHS. They will help with ideas on weight gain, nutrition and safe feeding.