Trying to figure it all out, newbie to site....

Hello - I am not new to epilepsy, but I feel like I am. I have three little boys and a husband who all have a rare syndrome called Rieger Syndrome. Until fairly recently we didn't realize how invasive it could be, as over the years all my boys have been diagnosed with siezures. My oldest son has been diagnosed epileptic since he was two (five years ago). My baby (2 years) was diagnosed just over a year ago. My middle son just got diagnosed about six months ago. And my husband was diagnosed a couple months back, but we're still working on his diagnosis... They each have different stories but behind them all is the link to Riegers'. My oldest is also autistic and visually impaired. My middle child is mildly autistic with other issues. And my youngest was a bit of a preemie and had a brain bleed, he has PVL and CP as a result. My husband is a brittle diabetic. My middle guy is completely controlled with medication (Thank God). My oldest pushes himself into siezures almost daily when he has horrid meltdowns. My youngest has siezures often, we are working on upping his med currently. He is prone to status siezures so it gets scary with him. My husband's diagnosis has hit me about the hardest as he's still having daily siezure activity after being upped to 1200 Trileptol daily. I'm trying to understand all the different siezures and what kind my gang has. They are all prone to partials primarily, but my oldest and youngest have gone into generalized secondary. My husband has had mostly simple and complex partials but also absence (maybe complex's in disguise???) and grand mal (only one). All in all, I feel like I have to know way too much about all of this. And it's become overwhelming, mostly because I don't ever feel like I understand enough about how thier siezures are, etc. I'm sure I'll post lots of different messages regarding thier various complications, but I guess I am wondering if anyone else has the kind of inclusiveness we seem to have, where almost everyone in a given family is affected? It would be nice to know there are others that deal with the extra emotions that multiple diagnosis' like that bring on. I mentioned we are still in the diagnostic phase for Jim - his 45 minute sleep deprived EEG cam back normal but his MRI was abnormal, showing spots in the white matter and some areas of abnormal development. We are waiting to hear back regarding a time and date for a VEEG for him. He'll be admitted for 24-48 hours to try and gather more information and "capture" a siezure in progress so we can identify the focus. I'm thinking we might have to change him to a different medication since this one doesn't seem to be helping as much. His sugars drop drastically after having one too - adding further concerns with his diabetes. We have strong faith and I am not overwhlemed in the sense of "why me" or anything like that (well, I do occasionally have my pity party moments, lol) but more like overwhelmed because I don't feel like I know and understand enough about "thier" siezures in relation to the information I've found on the web. Does that make any sense???