With minimal comment

Keppra level returned from Auburn today (even though I haven't paid for the testing yet) - 38.2. Dr. G said (and I haven't seen the form they use to report, as to whether it has any more detailed information or what) that the approved level is 5-21. Which leaves us almost 2 times the maximum, although there's no way to know exactly what the basis for setting 21 as the max is. (And I think - it sticks in my mind - that those are the HUMAN numbers, which would make sense, since they had said that they don't have enough cats to begin to establish what dosages should be. So, I need to relax about that. I think I will call them on Monday - I know that Karen talked to a researcher there who said that they regard Keppra as being so safe and unlikely to cause side effects that they don't worry much about dosage. I am envisioning a horrified reaction anyway. And my ending up in tears, because we have virtually no options, since he was toxic on phenobarb before. And since, on this dosage of Keppra, he still had 6 seizures between 4/30 and 5/16.

Just as sickening, I increased the phenobarb just 3 or 4 mg BID (a tiny 1/4 pill) two days ago or so, and this morning, Milk's not even willing to sniff his food bowl. It was so wonderful to have him eating again on his own, and coming into the kitchen when everyone else did, and starting to look less emaciated. And not having to bottle feed him.

This is sickening. Stomach-turning, repulsively sickening. And unfair.

Crummy crummy crummy night.

totally aside from/in addition to the seizure. Milk didn't sleep very well. He was up half a dozen times grooming and licking and making noises that I woke up thinking were pre-seizure. And then he got up at 5:30 and started pacing around. And gnawing on stuff. Back when he first started having seizures, I was convinced that he must have chewed on something with lead in it - he used to gnaw things then, too, but it had slowed down over the last few months. Now it's back again, I guess. He went from the window-opening-crank knobs to my yarn-winder handle to the plug for the lamp. He chewed on the edge of the table beside my chair, and on the drawer shelf of my desk. At the point at which he started endlessly licking the yarn in my afghan, I couldn't stand it any more, and put him on the floor. Maybe he's got pica. Too bad he'll eat all sorts of inanimate objects, but give him a bowl of FF, and he tries to bury it. I have given him two additional 1/4 phenobarb pills so far. Now to watch and see if he starts falling off the furniture again. And I have to call and beg for liquid valium for him today, too.

Then Burble had what must have been a massive hairball about an hour after the seizure, and I CAN'T FIND IT. He woke me up getting rid of it, and I know it's here somewhere...... A couple of weeks ago, he had a moderate sized hairball that he kindly left on the back of the couch. And I heard him throw up, and I actually saw it, but I got distracted and forgot about it. Until Andy and Michelle came to visit, Andy sat down on the sofa, and when he went to lay his arm along the back of it, Michelle jumped up and shrieked, "Oh, don't do that!" She thought it was poop, which is actually not a whole lot more repulsive than a dried up hairball. The whole episode speaks volumes about my housekeeping skills, or lack of them.

Busy spent more than a half hour during the night banging the doors of the cabinet under the kitchen sink. That's where the bin of dry food for the ferals is, and I've got a pair of twisted gumbands on the knobs so he can't open the doors all the way. But unfortunately, he can get his foot in between the doors and get them open just enough to SLAM after they get to a certain point. He knows he can't get in there, but he just keeps trying. Thank goodness he doesn't have opposable thumbs. He'd rule the world.

And my sweet Scruffy - well, suffice it to say, he was 146 this morning. I know he's going to drop, but how much I hate those numbers when he was so beautifully under 100 virtually all the time with Levemir. And no one who's still giving shots twice a day is interested in commiserating with someone whining about their cat's being OTJ. I wrote to Cindy and Tritone and said, I never expected him to be off insulin, and now that it's happened, I thought it would be a whole lot more FUN.

And the damned turkeys - they start gobbling at the bird feeder at 5:30. Not that there's any reason for them to expect that there will be seed for them at that hour. Not that there's ever BEEN seed for them at that hour. Hope springs eternal, I suppose, even if you're a big dumb clucking turkey. Which they are. And male-stupid beside - there's one that keeps "displaying" - that thing they do with all the feathers on their backs that makes you think about Thanksgiving and Pilgrims - every time a car comes down the road. He apparently thinks that he's so attractive that even vehicles will succumb to his featheriness. Geez.

I'd like to go off by myself for about a week and do only things that I want to do, when I want to do them. The ultrasound lab report said yesterday that I have - according to the receptionist at my doctor's office (who won't be my doctor much longer, since the company is changing from Blue Cross to UPMC - another whole set of crises) - "just a little bit of fat in your liver." I said, "Fatty liver disease?" No, just a "little bit of fat." It isn't able to show fibrosis anyway. Probably just a wasted 12 hour fast and insurance money. I still have to have the blood work.

I am whiny.

So much for that.

Seizure # 45. Quite a surprise, as I had dozed off and Milk was curled up in my right arm. I don't know what woke me. When I looked over, he had a little foam dripping off his mouth, but he hadn't started to seize, so I quickly picked him off my arm and put him on my lap, with my hand firmly on his abdomen, hopefully out of reach of his claws. Which I trimmed last night, but which were still like razors. Very little movement of anything but his head - a lot of volume with the growling and snarling, and two very harsh, different pitches during the course of the seizure. When it was done - seemed longer than usual, although I'm not sure and I didn't think to look at the clock - he just lay against my stomach. I started to wipe him off, and it brought on a lot of tiny little jerks from his front legs and from his head, so I stopped. After about 4 or 5 minutes, he jumped down, very uncoordinated, and went to eat. He never eats quite right anyway, even when he hasn't just had a seizure - something about the way he licks up food isn't right - and this looked very awkward. He moved all around the bowl before he was done. And then he wanted more, so he checked out all of the other dishes while I fixed him a fresh can of FF. His coordination is still very poor, almost a half hour after the seizure. He keeps wandering around across my desk and keyboard. Which, come to think of it, he was doing earlier tonight. I had to go out around 7:30, and he was sleeping on the bench beside my desk. When I came back, around 10:00, he was still sleeping there. He got up to see what was for supper, but didn't eat anything. And he was doing the same kind of annoying wandering around on the desk then, too. Very persistent, up and down, onto the floor, onto the bench, onto the desk, knock over my (empty) mug, and around all over again. I wonder if that was significant behavior. There has never been anything in the past year+ that I could say seemed to be a signal that a seizure was about to occur.

I was feeling very glad this morning that I hadn't increased the phenobarbital. It seemed, silly me, like the Keppra increase was going to be sufficient. After all, three days without a seizure? Surely an indication of a cure..... Damn it. I think that I am going to increase the PB, by a small amount - maybe a quarter of a pill for this last dosage of the day at 2 AM and see if that helps. I hate to have to keep dragging him out for blood work, but I don't want to ever get the point where his liver is at risk again. And maybe the report from Auburn will suggest that it would be okay to increase his Keppra. (Although that didn't seem very successful last week when I tried it for one day. And although I don't know if that's even something that Auburn does. If they don't already have standards set, I suppose they'll just give an amount and add him to their database.)

My poor little white boy. When he's had a seizure, the pink areas around his eyes and ears get very discolored and bizarre looking. And his whole face gets sort of pinched-appearing. Plus, Dr. G. had to shave his neck to get the blood from his jugular this time because he couldn't get enough out of his thighs. Both of them. So his wispy little neck has this big gap in it where there's no fur at all. I'm not sure why this one has been so disturbing, but I don't usually cry after he has a seizure, and I'm sitting here now with tears rolling down my cheeks. I just want this to stop. I want him to have a normal life and I want to not have to worry about doing more damage with the stupid medications. It's so unfair to him.

Three days!

Since the last seizure! I'm surprised and pleased. Interestingly (to me, at least) is the fact that he's doing the same thing he did one other time - I tried to go back and find it in the blog, but it was taking too much fiddling around..... Anyway, on each of these last three mornings with no seizures, he's awakened abruptly at 6AM and started roaming aimlessly around. Like it would have been a seizure, but didn't quite get all the way there. He waits till Rege gets his shower and passes out the treats, and then comes back and snuggles until the alarm goes off at 10:00. Today, he didn't even react to the alarm - I really think, if I hadn't had to grab him so I could be sure to get his pills in him on time, he would have slept for quite a while longer. We're all exhausted.

I did pick up a new prescription for the phenobarbital, but haven't increased the dosage. And if it's possible to avoid, I'd really rather not. It seems that the slightly increased Keppra has taken effect even with the previously ineffective phenobarb amount, which is wonderful, I think. (Unless they come up with recommended dosage levels for Keppra that he's way out of range on. A possibility, sadly.) Today, the tests at Auburn should be done. (And they have to send a bill, too, because I can't find my checkbook and they didn't want to use a charge.) I'm a little nervous, but at this point, no matter what their results are, if he continues to be controlled, I am not going to mess it up.

It would be nice to get another three seizure-free months out of this rearrangement...

Seizure Avoidance/Subversion?

First - no seizure this morning, thank God. Although, I still didn't get any sleep, since Milk abruptly jumped down at 6:00 AM - prime seizure time- and started eating out of a bowl of food nearby. So, I had to get up and get him fresh food, and then sit and watch him for an hour and a half to see if he was going to have a seizure or not. Which led me to wonder, can a seizure be knocked off track by some distraction, for example, and then not occur? Since I wake up so immediately when he starts getting ready to have a seizure, I wonder if maybe there is something that could make his brain say to itself, "Oh, that's way more interesting than what I was GOING to do; I'll save this seizure for later....." Like, what if a seizure is just getting ready to start, and he sniffs something he just loves, or something horrible, say, or if - like the last two, I had to pick him up and move him to a safer place to have the seizure? Probably not likely. I'd gladly do all sorts of dances if it'd stop the process.

Yesterday afternoon, after much trauma and agony - Rege screwed up the printer AGAIN, and he never mentions that he's done it; in fact, he always denies that it was him, the jerk - I had made an appointment to take Milk to the vet to get bloodwork done 1) to send to Antech for phenobarb levels, to test my theory about why he's suddenly eating again and having seizures all over the place. (The phenobarb level has fallen to a place where it's not ruining his appetite, but it's also not controlling the seizures.) and 2) to Auburn for testing of the Keppra levels. Which takes at least 10 days, I guess. I couldn't print out the Auburn forms that I had to have because the PRINTER WASN'T WORKING, so I ended up emailing the pages to my friend Sandy, and then she printed them, I went to her house and picked them up, came home and packed up Milk in the carrier and we dashed off to the vet's. With the gas tank on EMPTY and the little gas tank picture all lit up. Story of my life. I'm still waiting to hear from Dr. G. about the phenobarb levels - usually, the results would be back by now. I don't know what I'll do if it turns out that the levels aren't low. I did try a day of increased (by another 1/8 pill) Keppra, but it really made Milk wobbly and uncoordinated. I hadn't ever seen side effects like that till the last increase at the beginning of May when this round of seizures began.

Okay - just got the phenobarb results :
24.? something-or-another-that-I-can't-remember-even-though-I-asked-Dr.-G.
-what-it-was-twice. SO, I do think my theory is right about the level having fallen to too low a point to effectively contribute to controlling his seizures. Now, the question is, how much do we increase the phenobarb by, if anything, before it screws up his eating again? Dr. G. thought that it might be worth trying to see if there's some sort of "pattern" to his seizures - like, it was three months with no seizures, and then a bunch of them, and wait to see if it was repeated. Well, #1, although I didn't say it to him - that's information that's visible with his seizure record (over on the left side here), and there's clearly NO pattern. And my tolerance for never getting more than three hours sleep is pretty much at its end. Plus - it's bad enough that most of his seizures have occurred when he was sleeping on me - what if it starts happening when I'm out? There was a guy on the epikitty board last week who said that his cat wedged itself between the wall and the couch and then had a seizure, and when he got home from work, the cat was covered with blood from bashing his head against the wall. I can't bear the thought of him having seizures (and frantically looking for food!) alone. I need him to be controlled as fully as possible. Period. If I have to go back to bottlefeeding him, so be it.

I still have to call and see if the IM vet will give me another vial of liquid valium. I hate the thought of even asking them. Plus, they are moving to their new office building in June, so the place is probably mass confusion. Nothing's ever simple.

Longer, louder, more violent.

This is really getting me down - I fell asleep around 3:15, and here I sit at 5:05, having just weathered another seizure. Alarmingly shorter interval since the previous one, too. I had tried giving him the phenobarb separately at 12 hours for several days, and it didn't matter; he still had seizures. So last night and tonight, I just gave it at 2AM with the Keppra. No seizure yesterday morning, and one this morning. I am increasingly more convinced that there is a connection between his ability to eat again on his own and phenobarb dosage. I wanted to wait to send away his blood to Auburn and get both Keppra and phenobarb levels done, but maybe that 's not practical to do. I hope to go back to sleep in a few minutes, and when we get up again for the day, I'll print out the forms and call Dr. G.

Description of the seizure, before I forget: only two quick odd lip-licking sounds before it actually started, and again, he was snuggled into my armpit, so I had to get him moved. Which I just barely managed to do before he started practically roaring - very loud snarling. And unlike the last one, this was very physical - a lot of flopping around. For much of the seizure , which lasted probably 40 seconds, his tail was sticking straight up in the air, which struck me as somehow oddly humorous. I don't know how anything can seem funny when your poor little cat's flopping and banging and snarling uncontrollably, but there you have it. And then, which I have never seen before, he started to crane his neck backwards in a pretty alarming position. I kept my hand on his back - only the second time I've ever touched him during a seizure, so I didn't have to worry so much about him flopping onto the floor. When it ended, I had a kleenex that I started to wipe him off with, but it seemed to alarm him - two big post-seizure jerks when I touched him with it, so I just let him be. He laid quite peacefully for a good two minutes, and then jumped down and went to the kitchen to look for food. He ate about 3/4 of a can of FF, and a few pieces of dry. I wiped him up with paper towels. And now he's been circling around from the kitchen to the dining room, in the other kitchen door, up on my desk, and back down again. He's still quite wobbly, and it's been almost a half hour.

Tomorrow, also, I am going to do a dedicated search for the liquid valium/catheter stuff that Dr. L. gave me. I don't like the frequency increase that's going on here. I'm pretty sure the valium's expired, so I'll probably have to call and see if she'll give me another vial of it. If not, I don't know what I'll do, since Dr. G. doesn't have any. Wonder if you can get it from the drugstore?

I am exhausted.

Or this one.

I think I'm being punished for being smug about how well Milk's seizures were being controlled for almost three months. With a vengeance.

This morning's was odd - very short, almost no flopping, but a ton of very harsh growling and snarling. It started without any warning - usually I wake up because he's starting to chatter his jaws, but not today. And even worse, he was sleeping snuggled up in my armpit, where I would have no ability to keep him from flopping onto the floor, or banging into the table, or who knows what. Plus, I didn't want him that close to my face and eyes while he was having a seizure. So, while he was snarling away, I couldn't think of anything to do but to pick him up and plop him down on my lap, where I could keep him in one place. Just a smidge scary. But he really didn't move at all. He continued to growl for just a few seconds. No clawing, no flopping, no bouncing around - just stiffness and noise, for probably not much more than 20 seconds. And then he laid with his eyes huge and round and black (pupils all dilated, I assume) for another minute or so. He jerked three or four times, and then just laid there. Eventually, he jumped down, without seeming uncoordinated, and I thought I saw him disappear down the steps. He always is ravenous after a seizure, so I figured I had a couple of minutes to fix him something to eat. (He used to pace after every seizure, around and around the living room and dining room and kitchen. Hasn't done that for many months, though.) Anyway, he wasn't downstairs, as it turned out, he was going from nearly empty bowl to nearly empty bowl licking up the food that I'd left out for overnight for Scruffy. I put down a fresh can of FF for him, and he ate about half of it. Then he started looking to see what else there was to eat. I try never to miss an opportunity to get food into him, so I gave him a tiny handful of EVO/Wellness dry, which he ate a little of, but by then, the other three had discovered that he was eating crunchies, and started jostling for position to wedge themselves into his bowl. He ate another 1/2 can or so of a different FF, wandered around across the computer desk several times, and then sat down behind me here, seeming perfectly relaxed and just fine.

I'm starting to get nervous about the frequency of this new round of seizures. I was hoping that increasing 1/8th Keppra TID would get things back on track, but apparently not. I can't remember where I put the liquid valium that the IM vet gave me - haven't seen her since she referred us to the neurologist in Ohio, and although I left her his most current seizure record the last time I had Scruffy at the Specialty Hospital, I never heard anything from her. I'm guessing, given that she only saw Milk that one time (although it cost me almost $400 for ONE APPOINTMENT that was pretty much useless), that she doesn't necessarily regard him as her patient. Would she give me a fresh tube of valium if I called? Don't know. There was a six month expiration on the stuff - which is long past. I don't want to panic, but we're sort of beyond a place where I have the least idea what to do, besides increase his Keppra again.

I do have a theory - related to the fact that he has just barely started eating voluntarily again in the last two weeks or so. I wonder if the phenobarb dosage - 1/2 pill (8mg) BID has become somehow ineffective - thus allowing the seizures to start again, and lessening the suppression of his appetite? He just had bloodwork fairly recently, but I suppose it would be worth it to not only check his phenobarb levels, but to send blood to Auburn and let them do the Keppra levels, too. I know that they'll do both, which will save the extra costs of Antech doing the phenobarb levels. Maybe that would be a good place to start. I'll have to call Dr. G. next week and ask them to get the blood pick-up/transportation arranged, and make copies of the information Karen posted from Auburn on the epi-kitty site. Which possibly leads to consideration of what to do if they say that he's on too high a dosage (even though it's not working any more?) I did notice - for the first time - with this last tiny increase in Keppra (generic) that he seemed to have more visible symptoms of the greater dosage. I had never really noticed any wobbliness or incoordination since he's been taking Keppra, although others had mentioned that their cats showed it. But this time, although certainly not even close to what phenobarb did to him, there was a noticeable difference. He was just starting to seem to be getting over it.

I wish this was something you could snap your fingers and Zap! it'd be gone..... I am frankly terrified about the possibility of cluster seizures and the frequency increasing.

No doubt about this one.

8:05 AM. It started with a minimum of jaw-chattering, and I was expecting that there wouldn't be much foam, but his head and neck were soaked. This was very quick - maybe 40 seconds, but quite violent in the middle, when he was flopping around with his butt way up in the air. There was growling, but not as loud as before, I don't think. (I've managed to put all that out of my mind. ) He was laying on his side on the afghan, and his left rear claw got stuck in the yarn. (Which is relevant, I think, because just a few minutes ago, he got up from the window ledge and was limping terribly. Either he was limping because of the claw, or there's something wrong with his whole leg. It's alarming, whichever way. He walked like he'd had a stroke - his leg kept sort of folding in on him.) When the actual seizure ended, he laid there quite calmly. There was one large "jerk", but not the five or ten minutes of stuff that he used to do. He got down easily - without seeming uncoordinated - and went out and ate almost a whole can of FF. He was affectionate and wanted to rub and nuzzle afterwards.

I don't know what to think, or what to do now. When he had the first seizure the other day, I thought that maybe my adjusting the times of his phenobarb had finally caught up with him. (Instead of giving it separately at noon and midnight, a few weeks ago I started giving it with his Keppra at 10 AM and then with the Keppra again at 1:00 or 2:00 AM - just to cut down on the number of times I had to chase him around and shove things down his throat.) So, three days ago, I started giving him the 10:00 PM phenobarb again, by itself. I wouldn't think that that would make the difference, although, who knows? And now, do I try to increase his Keppra? He's getting approximately 3/4 of a 250mg pill (such a stupid oval shape for chopping in four.) I'm tempted to try to add 1/2 of that last quarter, but I'd never be giving the same dosage because of the shape - the top part is usually significantly smaller than the bottom. And the stuff is so expensive that I really don't want to waste any that I don't have to. Maybe I should try Karen's technique of using some sort of apothecary scale. I sort of hate to go right up to 250 mgs TID, for no particular reason other than that it seems like an awful lot. I wonder, too, if it has something to do with the phenobarbital. He's been showing a smidge of interest in eating lately - ever since I discovered that he likes the freeze dried Nature's Variety. He's not exactly "eating" when I put his food down, but he's taking longer to bury the bowl, and he does occasionally lick the stuff a little. Last night, I actually saw him eat five or six bites of FF. So maybe the phenobarb is having a reduced effect, both on his eating and on the seizure control? I hate to put him through more blood work - it's only been a couple of weeks since the last levels were done.

This is so upsetting. He was doing so well. It feels like we're right back to the beginning again. And I haven't learned a thing in the last year to make me think that I can deal with this any better now than I did then.

Enough whining. I guess I'll go and write to Karen and ask her about her scale and where she got it. I wonder if there's any function in trying to call the neurologist to see what he thinks.

Oh, and I've about decided that that wasn't a seizure the other day. Although maybe it was... Decisiveness, one of my best qualities. Anyway, there was meowing, and I've never heard him meow during a seizure, and the fur was sticky on his lower body, not near his head/mouth. Maybe Busy was just chewing on him again.

Did he have another seizure?

I was sitting at the computer in the kitchen when Milk came and jumped up to walk across the keyboard. I noticed an odd looking patch of fur on his side - it was sort of stiff and sticking out. Like he'd been grooming, only not soft. I picked him up, and his tail was damp, as was his stomach. Didn't notice anything around his neck or head, though, where he usually has foam after a seizure. I sniffed him - didn't smell like urine. Maybe he was in the bathtub? I didn't hear any growling or snarling, although, I did think a little while ago that I heard a cat meowing. A lot. (Thought maybe it was Cinnaminnie outside.) I opened a can of FF - the ultimate test of seizure-having - is he willing to eat? And he sniffed it and licked a little of the food. Bad sign? Maybe. I got dry kitten food out for the ferals, and he came over and ate quite a bit of it. Another bad sign? I have no idea.

I walked all over the house, and didn't see anything that looked like a wet spot. If he'd had a seizure upstairs, I'm sure I would have heard him growling. Rats, this makes me sick. I don't know what to think. And it's only been three days since the last one. Do I need to think about increasing the Keppra? Or should I go back to giving the phenobarb at 12 hour intervals, despite the fact that it's been working fine for weeks now stretching it out to longer periods?

The weeks of peace and reduced anxiety about seizures have apparently come to an end.