CDD is a neurological disorder with seizure onset during typically in the first 3 months of life, but can be later and for some children they never experience seizures. Download for more information …

Download the factsheet which will cover some of features of CVI which may be noticed in people living with CDKL5

Some quick facts about CDKL5 disorder

It is important to note that not all patients with CDKL5 disorder will have all of these symptoms, this is a guide

Spider Therapy is an intense physiotherapy treatment approach which was originally developed in Poland. It involves suspending the child in the centre of a universal exercise unit (UEU) by using a number of elastic bungee cords of different elasticity.

There is not a lot known about scoliosis in CDKL5. Therefore, these are general comments to reassure and make you aware of the possibility of scoliosis being a feature of CDKL5.

Caring for someone that you love with a disability can be very hard and often lonely. As parents, we find it hard to let go from our duties of providing the vital care that we give to our children.

Whilst this article is focused on a number of similar repeated movements and behaviours that children and adults with CDKL5 can exhibit, it is important to recognise that these are just their versions of some of the odd behavioural quirks we all possess.

For most children and adults with CDKL5, their epilepsy does not respond to medication. This is known as refractory or intractable epilepsy.

Music therapy is an interactive, primarily non-verbal intervention. The purpose of music therapy is to encourage the individual to explore and enjoy the creative process of making music.