Have the doctors put your granddaughter on Phenobarbital? Although doctors don’t usually like giving it to children now days, at least in the United States, in this case being so extreme I’d think they would have tried it. It is after all one of the main treatments for Status Epileptcus. It’s been around over 100 years and although I know how we all react differently to meds it stopped my Convulsive Status episodes on more than one occasion. Lorazepam is currently the drug of choice for Status but Benzodiazepines although usually affective especially in children do not always control Status. Dilantin, Phenobarbital, midazolam are although usually given as first line meds. My guess and it’s only an educated guess based on my personal experience is that your granddaughter is likely in part or stage 1 or 2 not sure of the exact terminology of Refractory Status. My apologies if I’m not making the most since here but this is a very emotional issue for me to try and talk about. There is hope, I remember people being in comas for extended times, some not having any side bad effects. One lady being in a coma for well over a year. Like me she didn’t remember anyone after waking but even though we both continued to have refractory Epilepsy including being in more induced comas we both overcame our seizures and I haven’t had one in six or so years now. Leigh at last check was doing good as well. I know what an awful time you and your family are going through and my heart goes out to you all. May God be with your granddaughter and her doctors and your entire family. I’m so very sorry.
Jake

Jump to this post