Hi, I'm the mother of an 11 year old daughter who has refractory (drug resistant) epilepsy and is on the autistic spectrum. My daughter was diagnosed with epilepsy at the age of 5, which was controlled by medication for two and a half years. Drugs were withdrawn, believing that her epilepsy had gone into remission. Six months later, seizures returned and were more varied and frequent, resulting in her being diagnosed with refractory epilepsy. She has just finished two years of ketogenic dietary therapy with mixed success. Because her seizures are generalised, we have been told by her consultant at Addenbrooke's that surgery isn't an option, neither is VNS. The drug zonisamide has been suggested as the next option but in the same breath, our consultant has said it's unlikely to have any benefit. I'm not sure whether our consultant is particularly pessimistic or realistic but I'd like to feel more positive about the future than I currently do. Has anyone had a similar experience with lack of available and creative treatment for refractory epilepsy? Thanks.
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