Helping families cope with the devastation of Dravet syndrome
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Dravet syndrome shakes family life to the core. Seizure control is rarely complete, and simply prescribing medication is inadequate to help families. Our suggestions are based on structured interviews with >25 Dravet families. In Stage 1 (up to 1-1½ years), a written protocol for an organized approach to status epilepticus is mandatory. In Stage 2 (age from 1½ to ~6-10 years), assistance in finding qualified baby sitters (extended family and others) is required. Equipment, rescue medication and protocols should accompany the child. Siblings may benefit from assigning one parent to be "on call", and an Internet support group provides an invaluable lifeline. In Stage 3 (after ~10 years), family isolation may become extreme: respite care and personal time for parents are important. An epilepsy transition clinic that can effectively liaise with adult emergency services is optimal. Attention to these realities may improve the quality of life for the child and family.
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