18 .What kind of help may you need and get when your child is a teenager or an adult ?

Teenagers and young adults still have an active epilepsy with predominantly nocturnal seizures. Even if the outcome is child-dependent, the cognitive and motor impairments are generally severe. 

Along with the supports previously evoked in Question 15, and according to what is available in your country, hereunder is the best recommendation that could help you. First, keep in mind that it will be very difficult to manage everything by your own. Even if you can gather a multidisciplinary team around you and your child, it is also essential to keep an enlarged-family cocoon. Throughout the course of the disease, as parents, along with your child’s siblings you will need moments of rest. For example, during the seizures or hospitalisations, have a “parent oncall”, meaning that only one parent is going to the emergency room, allowing the rest of the family to have a life as normal as possible.

The multidisciplinary team will first proceed to an evaluation of the needs for individual assistance or for specific school. Regardless of his/her cognitive level, specific stimulations and social interaction will help your child to progress. Teenage Dravet patients are often not well accepted by others because of their poor language and their peculiar behaviour. First, speech therapy with a specialist can help your child improve his/her language skills and express his/her feelings and concerns more easily. But he/she could also have small groups activities supervised by an instructor trained to manage seizures. Always try to favour autonomy, relationships with others and social integration. To achieve it various activities can be offered by local Dravet syndrome associations or associations for disabled persons, in scouts communities or even your local communities: walking, camping, gyms, gardening, animals caring, horse-riding, swimming (under close monitoring), acting classes, dancing, painting, shopping, music, movies, etc. Summer camps can offer the same activities, allowing teenagers to be less dependent from their parents and to socialise with others of the same age.

On the psychological point of view, a therapist can be of great help to detect subtle signs of depression. Indeed, teenage and adult Dravet patients are aware of their difference and it makes them suffer. As parents you might also feel the need to seek for psychological support.

When your child is an adult, it will be important to give him/her an understanding environment where caregivers are well informed about the disease and offer adapted activities. Continue to provide physical therapy and psychological stimulation in order to avoid a worsening of the physical and psychological decline. Finally, the admission in adapted structures (as an in-patient, or out-patient) can be helpful.

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