He has recently come out of ICU and the doctors have told him there's nothing more they can do for him as his epilepsy is so severe and it's inevitable that his heart will stop again. So his father, and myself are looking into private practices and alternative options. Can anyone please offer some advice.
Thank you.
Hi Robin, I am sorry to hear this news and to hear how severe this little guy's seizures are. Surely, there must be a Neurologist somewhere that can help him. Please don't just listen to the doctors in the hospital. Try and find a more qualified doctor/specialist to dig deeper down into the cause of the seizures. I have had epilepsy for 40 years now and am currently only under Govt. Hospital doctors, whose knowledge is nil compared to a specialist, but I am now controlled. Have they even bothered to consider surgery for him? How has he been treated at the hospital and with what medication? I hope a Specialist can be found!
I concur with lesmal's reply... you could also contact Epilepsy Action. I went to one of their conferences and a neurologist/surgeon talked about the operation you can have when nothing else works to control the seizures... do go beyond this negative advice and find another neurologist who specialises in epilepsy. There have also been some recent discoveries about the effect of magnesium supplements on uncontrollable epilepsy in children.
Work not willing to listen 
Recording seizures in sleep.