Meds not working!!

that is a lot of medications to be on at once. hard to know what to think without asking some questions... is this very recent or has it been going on a while? has she been hooked up to an EEG for much/most of the admission? how much do you know about the seizures she's having - are there seizures they've recorded that you didn't see? are you working with an experienced epileptologist? are you at a well ranked pediatric hospital for neurology/neurosurgery?for the best treatment decisions, one needs to know what type of epilepsy one is dealing with. that can take time to determine. once one knows the type, it can still be difficult as some forms are very hard to treat. but knowing the type usually improves the treatment choices made. our child's last EEG was many days and they reduced her meds. my daughter had new myoclonics that look like little slumps, head or shoulder dropping so briefly. such seizures can show up in all sorts of syndromes. I didn't catch them, they were so brief. I also didn't catch the other new seizures they caught at the time but they were a surprise. given what they saw they changed their understanding of what kind of epilepsy she had. it changed from a supposed symptomatic form of epilepsy to a genetic form, the things they saw caused the doc to believe her epilepsy has a good chance of stopping so that was a much improved outlook. we are seen at a top ten ranked hospital (for neurosurgery and neurology) but it took time for these new seizures to be found, they certainly weren't there when they first diagnosed epilepsy. we had switched to epileptology along the way. there are a lot of types of epilepsy, it can take a while to figure out. it helps to have really experienced pediatric providers. it can still be frustrating. new info can change their understanding.

This is basically new. She was admitted to CHOP for 10 days and got the whole work up. When she seizes her head falls forward although we have not been told what syndrome it is yet and are still waiting for results. The Dr increased her zonegran today and is weaning her off the ONFI. At this point just praying for the zonegran to work. My heart breaks every time she seizes.

well you are at one the better  regarded pediatric hospitals so that's a plus. downside to high volume well regarded hospitals are that they sometimes seem rather impersonal as they deal with a lot of families. hopefully your doc is experienced and can help you adjust.so sorry this is so new, that's a lot to deal with. I'm not sure with the seizures you describe that they would have enough specifics about the epilepsy involved - a lot depends on what else they catch on the veeg.