Co-morbidities

Epilepsy and developmental delays are the main problems for children with Dravet syndrome; however, they also have a number of other health problems. Some conditions are common, other less so, and all will vary in severity from child-to-child. Secondary conditions can include the following:

Autistic Spectrum Disorder

Autism affects how a person communicates with, and relates to, other people and how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light or colours.

It is not unusual for Dravet patients to receive a secondary diagnosis of autism. As autism and Dravet syndrome are both spectrum disorders patients will vary considerably, with some children perhaps showing mild autistic traits through to others having a full diagnosis of profound autism. Dravet patients often display communication and social difficulties and it can be useful to be referred to an ASD specialist if you are at all concerned.

ADHD/Behavioural Difficulties

Attention deficit-hyperactivity disorder (ADHD) is common, affecting up to 10% of all school-age children, particularly boys. It normally emerges before seven years of age. Children with ADHD act without thinking; they are hyperactive, impulsive and have trouble focusing. They may understand what is expected of them but struggle to complete a task because they cannot sit still, pay attention, or focus to details. All children act like this sometimes, but with ADHD these symptoms are present more often. They impair a child’s ability to function socially, academically and at home. The positive news is that with good treatment, children with ADHD can manage their symptoms.

Dysautonomia

Dysautonomia, or problems with autonomic body functions, are present in more than 60% of people with Dravet syndrome. Issues include problems with temperature regulation, decreased sweating, fast heart rate (tachycardia), and sluggish digestion and blood circulation.

Growth and Nutrition Concerns

These include so-called ‘failure to thrive’ (underweight, slow growth, small stature), osteopenia (poor bone density), scoliosis (curvature of the spine), and problems with eating, appetite or with the absorption of nutrients. Each child is unlikely to get all of these issues, but about 60% of children with Dravet syndrome show some growth and nutrition issues of varying extent.

Coordination and Orthopaedic Disorders

Up to 80% of families of people with Dravet syndrome report symptoms including gait (walking) disturbances, such as lack of coordination (ataxia) and crouch-gait. Flat feet and turned-out toes are common along with poor muscle tone (hypertonia), tight muscles (spasticity) or hypermobile (over-flexible) joints.

Infections and Immune Problems

Frequent ear, nose, throat, lung and digestive infections can be a problem for some people with Dravet syndrome. At this point in time it is unknown whether this is because of the overall disability or a more specific relationship to Dravet syndrome.

Sleep Problems

Sleep disturbances that are severe, persistent and difficult to treat are also common in children with Dravet syndrome.