Complicated siezure issues w/in my family, need some help here. . .

Hi there - I apologize in advance if this goes rather long, but my family has lots of different siezure issues and I am feeling a bit unsure about the best way to keep things organized and pursue further opinions at some point if needed. So here goes... My husband and three sons all have a rare syndrome called Rieger Syndrome. While not normally linked with nuerological issues, all of my guys have nuerological issues, including siezures. The geneticist and nuerologists are convinced it all links back in some way to the Riegers and malformations within the brain. Since they all have had abnormal MRI's I don't tend to question that assertion a lot. My oldest son was the first diagnosed with seizures over five years ago at just over two years old. We didn't have many problems and his siezures were easily controlled until about a year and a half ago or so. About a year ago my youngest was diagnosed after a particularly scary status siezure (we had suspected beforehand but this "proved" it for all the specialists) and about six months ago my middle boy was diagnosed after a rather nasty pc at school with loss of consciousness, etc. About that time my husband and I started discussing wether we should be getting him checked out. I decided to see what the geneticist had to say when I took the kids back for their next appointment. He is a brittle diabetic, so we at this point were wondering if some of his more unusual blood sugar issues were instead possible siezures. Like he would feel like he was getting weak and stumble to sit down and then go "blank" with a slack jaw and decreased tone all over. We'd check his sugars (he was "conscious" but not really, if you know what I mean????) and it would be normal. So anyway. . . I spoke with the geneticist and he said we needed to check them out ASAP because of the possibility of worsening...that was a friday appointment. That sunday like 2 in the morning, I woke up to Jim in a complete cold sweat. He was cold to the touch, wet all over and through all the sheets too. And he was completely nonresponsive. I first went to get his monitor and check his sugars and they were REALLY low - 32. So I went for syrup and tried to use that...but by this time he was starting to roll to his side and clench his jaw and was making oncoordinated "wierd" movements. When I couldn't get anyhting into him I called 911. Before they arrived he went into twitching/jerking on his right side of the body - it wasn't a full jerk but a small one but it was rythmic and continued for several seconds. By this time I realized I was seeing a seizure but was trying to coordinate trying NOT to wake the kids up with the EMS folks as I heard the ambulance. . . He started coming around just as they got here but was still unable to speak or anything. While we understood it was "normal" for a diabetic to sometimes have a seizure during a sugar low - we felt that this tipped that hat and when we saw his doctor he agreed - getting us into see a nuerologist immedietely. Because of the genetic syndrome and all three boys having siezures - the nuero was about ready to diagnose on the spot and start meds - but he said he would at least like to do some tests. An EEG and MRI later and we had mixed answers: EEG = normal, MRI = mutliple points of hyperintense foci throughout white matter and other brain abnormalities that would coincide more completely with the Rieger Syndrome as well. We're now two months later and three dosage increases of Tirleptol later as well. He's up to 1200 mg daily with very little improvement in the number of seizures and intensity of them as well. Another visit the nuerologist and he wants to schedule a VEEG. That's all well and good, but his attitude seems more dismissive now. Half the time, at least, after a siezure - Jim's sugars drop markedly. The nuerologist thought that this would point to the siezures or "episodes" being related to his diabetes rather than epilepsy. He says if the VEEG doesn't show anything then he will refer him back to his endocrinologist. I had a really nice, informative phone conversation with his endocrinologist - and she will be writing his nuerologist a nice letter outlining basic diabetic reactions to extreme activity within the brain (ie - siezures) as well as some ohter basic things. But the VEEG isn't scheduled for another month and until that time I don't know what else we can do. . . I feel helpless and my husband feels like it's all in his head. If I hadn't seen them myself I would question it - but who really "wants" to have siezures? Where do we go from here? Should we go ahead and try to get into the Epilepsy Center now or wait until the VEEG and give this nuerologist another chance to work with his condition? I should mention that since his really bad episode that precipitated this flurry of diagnostic activity his siezures have become much worse than they ever were before this. While the medicine has helped to slacken the number of them, within a couple weeks of each new medicine increase they have come back with a vengeance. It's affecting him so badly. Anyone else dealing with the dual diagnosis of siezures and diabetes? How did you go about finding a specialist? What else do we do? How do I go about keeping journals for four different folks with siezures (one is VERY well controlled, but that's it) and not go insane? Thanks, moody_mommy