My son is autistic with epilepsy stopped eating

[IrinaBibikova]

Hello. My son 11 yo got epilepsy and autism. 10 weeks ago he started taking the prescribed Epilim liquid, starting with 2 ml per day and gradually increased the dose to 10 ml per day. Starting from a 4 ml dose we started noticing severe side effects. At 8 ml this became very concerning. He has lost his appetite, is constantly tired, has nausea, and stays in bed most of the time. He also sleeps two times more than he usually does. The fact is due to his autism he is not speaking and cannot explain the condition and what he feels. I am very much concerned about him as he is not eating, and there is nothing we can do about it, convincing is not an option. He looks like even a look of food makes him sick. Every day he becomes weaker and I don't know what to do. Do you have any advice on how to handle this? we cannot stop taking the medicine

[Adlon57]

Epilim is NOT the be all and end all of epilepsy medication, has your soon got a epilepsy specialist? There are plenty of side effects of that medication! Do you have a mental health help centre near you? To find people in the same area with your son's condition, getting advice from them? Has your son's type of epilepsy been diagnosed? Good luck I have had Juvenile Myoclonic Epilepsy since 1970 I am now aged 67, it is NOT a nice medical condition!👍

[IrinaBibikova in reply to Adlon57]

Thanks. We have seen epilepsy doctor and this is the first medicine he prescribed. The type is not determined we are waiting results for that. We know nothing about local mental centre. Any ideas how to deal with side effects? Especially the fact he stopped eating

[Adlon57 in reply to IrinaBibikova]

It very much depends the particular area you are living in, usually your local doctor or GP should know where to get in touch for relevant medical condition support groups? I have had epilepsy for over fifty years, it is such an unknown area, the brain the hardest and least known about organ in the human body! There are that many types of epilepsy, and so many types of epilepsy medications, with so many side effects and reactions, none perfect, every patient is different, sounds so melodramatic but true🙄 I have had the condition for so many years, and run out of medication alternatives, but hopefully another may be just around the corner! I am not a qualified neurologist, good luck👌

[GillyA]

please do get in touch with your epilepsy specialists office asap, they may also have given you a nurse contact number. Your son should not have to suffer this level of side effects and there are many other types of medication that can be prescribed.