Just back from the hospital, ds, 11 months just been diagnosed with epilepsy. Myoclonic seizures. Wat to expect?

[caitlinnjacksmummy]

Hi, I posted a while back thinking my son , 11 months, had some sort of epilepsy, have just had it confirmed, he takes myoclonic seizures, and is to get an mri scan, bn started on medication, but was warned that the fits can change dramatically in a year, I am worried sick, can someone advise me on this please, I am lost

well, dd and many kids I know have a course of ACTH for when the epilepsy is 'serious'. Its bloody awful but better than the child regressing mentally.
Epilim isn't that great, there's much much better drugs. Keppra is fantstaic for myoclonic epilepsies.

Yeah well I can only go on wat my consultant wants to put Jack on and keppra may not b available for Jacks age, I can't really go over wat the consultant thinks, wat is ACTH?

ACTH is a steroid that is injected. Its worth mentioning it. I always mention stuff I've heard and dd's neuro will spend ages either researching it, agree to try it or will tell me honestly why it might not work.
If it wasn't for him she would no longer have her intellect.

Well that is excellent, may have t be certain period of time before we can try ACTH tho as Jack only bn diagnosed 31 Jan, and only on 2nd medication, he is still on nitrazepam 4ml, morning and night and Epilim 1.5ml morning and night, and of course the diazepam if seizing 5 mins or more. Wat was yr DD started on? x

Hey everyone, just outta hospital AGAIN, got out yesterday t time, wed morning went in by ambulance, losing faith now, rapidly....... this is sooo hard, wen we went in, also discovered Jack had viral infection and his temp was at 39, still not better, he is not drinking either, so having to syringe milk and water into his mouth, just so deflated........

dd strated on epilim but as soon as it was realised that these were serious seizures (infantile spasms) they switched her to vigabatrin and then ACTH.
She's now on keppra.