7 . Apart from seizures, which manifestations will you and your child have to deal with ?

Dravet syndrome is more than epilepsy. It is considered as a genetic disease with various neurological symptoms starting in the first year of life.

Cognitive decline, behavioural disorders and motor impairment are always observed at some point in all patients but with various severity degrees.

Lack of attention and delay in language acquisitions are the first noticeable symptoms, which may emerge from kindergarten to elementary school. Once these symptoms are fully visible, you will notice that is difficult for your child to express his/her wishes. It will therefore generate frustration and consequently behavioural troubles. Speech therapy can be helpful for socialisation. Retardation in the acquisition of eye-hand coordination and visuo-perception will also become evident, impacting your child’s school learning abilities. As your child grows up, you will notice an extreme slowness in all intellectual processes. Special education or institutions may help dealing with these difficulties and allow your child gain autonomy in daily life activities.

Assessing your child’s psychomotor development is important to build up activities adapted to his needs. Behavioural improvement may be noticed after specific therapies such as speech or ergotherapy/psychomotor therapy.

The eye-hand coordination is the coordinated control of eye movement with hand movement, and the processing of visual input to guide reaching and grasping. The visuo-perception or visual perception is the ability to interpret the surrounding environment by processing visual information.

Other disorders are noticeable. Indeed, you may see changes in your child’s behaviour such as hyperactivity. This means that he/she will have issues focusing his/her attention for more than a couple of minutes and will frequently need to switch activities. Later on, this hyperactivity will disappear.

It is also frequent that children with Dravet syndrome do not listen to adults and act according to their own impulsions. This oppositional disorder is a frequent learning obstacle, persisting throughout life. A lot of these children may show autistic features (perseveration, repetitive activities) but they do not suffer from autism. Among other behaviour changes, sleep disorders or feedings disorders are not uncommon. Nevertheless, normal education rules should still be applied.

Many motor impairments affect all these children, but to a variable degree. Ataxia is one of them. Indeed your child should start walking at an appropriate age, but with an unsteadiness that will last longer than usual. The evolution is variable, but it will not prevent your child from walking alone during his/her childhood. Mild orthopaedic defects such as pes valgus can be treated with orthoses, which also may benefit balance. Other orthopaedic defects such as scoliosis or kyphosis will require a close monitoring, especially at the ages of maximal growth. A child physiotherapist can help at this point and maybe later in life.

Indeed, in teenagers and adults, other orthopaedic disorders may appear. Some may suffer from a specific gait disturbance called “crouch gait”. It is characterised by an increased flexion of the hips, knees and ankles making long distances walking difficult. However, a number of them are capable of riding bikes, skiing, swimming. Do not hesitate to try sport activities that the whole family enjoys.

More information will be exposed in Question 16.

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