Any ideas would be sooo helpful!!! (Looong post)

Hi everyone! I apologise in advance, this will be a long post, but please read it!! I'm new to the site, but far from new to having a child with e. Keirah is 8.5 yrs old, and had her first seizure (tonic clonic) at the age of 3 mos. Since then she has been on many meds....some that did more harm than good, but we thought we had finally found the "magic combination" for her 2 yrs ago. She was on Topamax, Lamictal, and Phenobarb, and had only a few breakthrough absence seizures, and a couple because she had gotten the stomach flu and couldn't keep meds down. Other than that things were goinge great seizure wise. We noticed she was having trouble retaing info, and her personality seemed "suppressed", so our ped and neuro decided we should slowly get off the Phenobarb. So, we weaned her off over 6 mos and things were great...she was remembering more and her personality had come through again. At this time they had also slowly tapered the Lamictal up to compensate for the med loss and to ensure no breakthrough seizures. She had been on this dosage for about 1.5yrs and doing great. A few night seizures here and there, but those had never completely stopped, and they werent overly worried about them. This November I noticed Keirah had some fine tremors on her limbs at times. I asked her about them and she was able to tell me they started during her Rememberance Day assembly at school (Nov. 10th) Like I said, they were really fine, hard to see, but you could feel the limb with the tremor really vibrating at the time. They only happened on one side at a time, but would involve one or both limbs on that side of the body. Usually starting in her hand/arm, and then going into her leg. Wee took her to our ped who consulted with our neuro (in a city 3 hours away) and they decided that she needed an eeg. The machine here never detects seizure activity from her, it's done over a phone line and the leads have to be just right, so she usually has to go to the Childrens hospital where our neuro is. The only problem is that they are waaay backed up and it takes like a couple mos to get into the lab. They also usually like to do hers sleep deprived, which also is harder to get in for. So our ped was keeping an eye on her and we just had to wait it out. Well, the tremors became way more frequent and more intense and lasted much longer than they had before. They also had started in her jaw. They were still really fine, but sometimes you could hear her teeth chattering. We kept in touch with our ped, who kept in touch with the neuro, but we still had to watch and wait. Finally on January 18th (my birthday) they had an eeg machine brought down here from the Childrens hospital, and a really qualified tech. The eeg showed seizure activity (not a huge suprise as it was a sleep deprived eeg) and so we went home to schedule an appt with our ped to discuss it. The next day Keirah, Jayda (our 8 mos old baby) and I were out shopping and the tremors in her arms and jaw were pretty bad, but she had gotten used to them to a degree by now. She was walking slightly behind me and I heard her call me. I turned around and her body was swaying, and she said her legs were shaking. I sat her down (fearing a tonic clonic on the horizon) and her legs just jumped all around. The odd thing was she was alert and talking to me through the whole thing. I got on the phone to the hospital right away and talked to my ped, and went home so he could call us back. Hewr legs had stopped after a couple miniutes, but would start again off and on. Later that afternoon the ped had called and we decided she would be better off in the hospital for observation. While I was packing and arranging care for Jayda, the started again, this time lasting 75 mins. We finally got to the hospital nad her ped seen what was happening and was stumped. He said the only idea he had was that the Lamictal was too high in her system and causing tremors (which can happen on high doses-her dose is high-theraputic for her weight) She has also had issues before metabolizing meds, a nightmare with liquid phenobarb( a long story, but soooo scary), and we thought perhaps this may be the start of something the same. So they did the blood draw for the level (it had to be sent to Ontario...we are in Alberta) and started tapering down the Lamictal in hopes this might help. But they also started her on Keppra to compensate for the loss of an anticonvulsant. The next day, she had another tremor that lasted 90mins, and they decided to try her rescue med (Ativan) to see if that would stop it under the assumption that if it was a seizure (which they felt it was not) the Ativan would stop it. Well, it did slow down and become less intense, but it finally stopped at 90mins, adter the Ativan had been on board 15 mins. We spent 5 days in hospital (with a night form h#!! on the Keppra) and still no firm diagnosis. The Lamicatal had been tapred 50mgs and things were the same. She had an MRI there which was clear (they never have seen anything on an MRI). Thsi Saturday, she had a great day. A few tremors here and there, but nothing huge. Since then they have been more frequent and intense. We got her Lamictal levels back today, and they were in the high-normal theraputic range which correlates with her meds. She has now been taken down 75mgs total from the Lamictal, and has had some absence seizures. We now have to taper the Keppra up faster because of her history of petit mals going tonic clonic, and also having status seizures. We are going to the Childrens Hospital where our Neuro is later this week and also having an ambulatory eeg to see if seizure activity correlates with the tremors. I guess the big question is HAS ANY ONE HAD EXPERIENCE LIKE THIS!?!?! Right now we are just wondering if it has anything to do with e at all, or if it's something different in the nervous system all together. And since it has progressed this far, is it going to stop at these dibilitating leg tremors or turn into something bigger? I have read a little about kinetic seizures and am wondering if anyone knows anyhting about these? I really am sorry for the long rambeling post, but we are running out of possibilites, and are scared and frusterated. Thanks in advance!