My daughter has hemiplegia and seizures, but both are side-effects of another condition which only 4 children in a million have so unlikely to be the same thing.
Re: effects of seizures - seizures themselves are not generally dangerous. What is risky is getting "stuck" in a seizure (medical term: "status"), or in a series of seizures. So both consultants are correct, in a way. If they withdraw the phenobarbitone and seizures resume, they will look to control them with something else. That can be a bit of a process, as other meds are effective and have less side-effects, but take a while (weeks, even months in some cases) to work which can be a stressful time.
Kids have broadly three types of seizures:
- febrile convulsions: 20% of little kids get these and they don't necessarily indicate any predisposition to Epilepsy
- seizures caused by something physically wrong in the brain (can be a tiny anomaly) which are generally lifelong
- seizures that "just happen" which usually run in the family and often the child will grow out of
Tests - and a bit of "wait and see", alas - should show them what sort you are dealing with if the seizures are still with you when the phenobarbitone is withdrawn. If so, remember that 1 in 100 people have Epilepsy at some stage in their lives, most of which are well controlled on medication and live normal lives.
Don't know if that helps at all - fyi there is also a forum on the National Society for Epilepsy web site and there is a doc on there who often answers questions from worried parents - out of the kindness of her heart rather than officially, so no guarantees she is around, but when she is she's very helpful.