Merry Christmas!

The middle-of-the-night freight train

Well, we're still having the periods of intense activity during the night. Every night. As I said before, better this than seizures...... In a way, it's kind of funny. He spends endless amounts of time either stealing the straws from my tea mug, or finding the out-of-the-way places he's hidden them, and triumphantly carrying them around all over the house. Twice last night, he woke me up - I thought he was having a seizure - the jaw-clicking - but it was actually the straw snapping when he chewed on it.

His need to always be snuggled up against one of the other cats has diminished recently, and now, he wants to be curled up in my armpit as soon as I sit in my chair. (Which does interfere with knitting.) It's very touching. He keeps trying to get closer and closer, and then he stretches his skinny little front leg out and pats me with his paw. Honestly, I am convinced that inside this wispy little white cat is some sort of miraculous being that I've been blessed to find. I look in his eyes and see - well, I can't even describe it. I was so driven to see him in that cage at Petsmart almost two years ago for some reason I can't explain, but I am absolutely positive that it was meant to be. And I am so glad.

Well, it happened again.

Only earlier. Up at 4AM this morning - no seizure, but bouncing all over the place for two hours. I really wonder if this is related to the Keppra. None of my cats wakes me up anymore before the alarm goes off. And once he finally did get back to sleep, he was really out of it. I am worrying - hopefully unnecessarily - about this huge dosage. Although, I don't see any physical signs that there's anything going on aside from this weird middle-of-the-night thing. His coordination is quite normal, appetite about as stinky as usual, everything in general the same. I'd like to call and leave a message for Dr. Axlund to ask him if this is normal, and if he thinks that maybe we should do the Keppra blood test he mentioned somewhere along the way. Or someone who knows about Keppra. (I was even questioning the technician at Dr. G's, who takes it. Of course, she's not a cat....)

Also ordered the compounded phenobarb from the pharmacy in Michigan that Hope uses. I didn't even ask what the cost would be. I just hope that it gets here by Friday.

Curious/weird

Milk just woke me at 5:20. Prime seizure time, but he wasn't having a seizure. He walked around on me a little bit, hopped on and off the furniture, and eventually raced around the living room. It was definitely odd behavior, but since it didn't seem to involve incipient brain damage, I wasn't about to discourage it. I thought maybe he'd want something to eat - if it was actually some sort of "substitute seizure" - but he really didn't. After maybe 10 minutes of activity, he hopped to the top of the cat tree tunnel - a good five feet off the ground - and just sat there, quite relaxed. At 5:40, he closed his eyes and started to nod off, which made me nervous for no particular reason. I went into the kitchen to record this, and he followed me, then went back out to sit on the short cat tree.

I'm not sure what to think. The timing makes me think that, if he hadn't awakened, this would probably have been a seizure, but I don't know if that's likely to happen or not. I would happily be awakened every day at 5:30 if he just wants to wander around and no seizures are involved.

He seemed to be feeling the effects of the greatly increased dosage more late yesterday. There were a couple of times that I noticed that he had a sort of hard-to-describe "startled" look on his face. (Yeah, I know, I know, but he did. Something odd about his eyes....) And when he was ready to go to sleep for the night, he just flopped down and never moved a muscle . No turning around to make a nest, no last minute grooming, just awake one minute and sound asleep the next.

It's possible that one of the other cats woke him at 5:20. I'm beginning to think that the four of them spend the night stomping around on top of me, and I'm such a sound sleeper that I just don't know it. I have noticed that the ones I start out with when I go to sleep are not necessarily the ones who are there when I wake up, no matter what time that is.

And now I kind of hate to go back to sleep - it's 6AM, though - because I'm afraid that I'll be unpleasantly awakened by snarling and growling in a half hour. Rats. Never satisfied.

And another one, huge dose of Keppra and all....

#37 . Although, I want to make myself feel somewhat cautiously optimistic that it was "better", somehow. Near as I can figure, the new dosage of Keppra is 187mg and a little more. That's a lot, it seems to me; at least, it's a lot more than he was taking before, especially when you multiply it by TID. He's had four of the increased doses. But there was a noticeable difference in this seizure compared to the last four or five. It didn't take as long to get started - he did a small amount of preliminary jaw snapping, but the growling started almost immediately, and it continued as almost a high-pitched wail until it abruptly ended. The flopping was very strong - I was almost sure he was going to end up on the floor - but very quickly over. I would estimate that the entire seizure lasted somewhere between 20 and 25 seconds. It ended like the video seizure did - he just stopped flopping and growling, and laid still. There was a minimal amount of jerking after it was over, too - his tail did a sort of "whiplash" thing twice, but that was really pretty much the extent of it. He laid for at least a minute, possibly more. When he jumped down, he was more coordinated than he has been - he didn't fall or act shaky. He did start to walk off in the opposite direction of the kitchen, but when I called him to come and eat, he came and did eat. He seemed to want to walk, but it wasn't the pacing that I used to see with the earlier seizures, either; then, he would rapidly, almost seeming driven, walk in a huge circle all around the living room and kitchen. This time, he seemed more interesting in being in the living room/dining room than eating. Right now, he's meatloafing nearby. Waiting for me to finish this so he can go back to sleep, I guess. Except that the blanket's soaked.....

I don't know now who exactly to report this to. Dr. A., the neurologist from Ohio, said that Dr. L, the Internal Medicine vet from here, should be our contact, but I don't have any idea what her reaction to the dosage increase (and the lack of pressure to have an MRI) is. I feel like he's the one that should know that there are differences in this seizure, not that there's anything I want him to do or say, I suppose. But it would seem like he's the one who would know if the change means anything or not - if it represents positive improvement because the seizure was so much shorter, or if it represents negative/failure because it happened so soon after the last one, or if it doesn't mean anything at all. I wish I could just email him or something. I just realized that it's Saturday. Maybe next week, I'll call his office and ask what they think I should do. It would be different/better if I had more of a relationship with Dr. L., or if I could actually talk to her when I call, instead of relaying messages through a technician. And it just occurred to me that I don't know if there is any testing/bloodwork that should be done on a regular basis or what, to see if his liver's okay or his kidneys, since Keppra's processed through the kidneys, I believe.

Milk's been calmly sitting in the same place, looking around but not jerking or acting very post-seizure-ish for more than a half hour. I guess I'll record Scruffy's information and see if he needs to be shot, and then try to sleep a little more, till time for Milk's next pill. Not much of a life for any of the three of us, sadly.

Neurologist appointment in Akron.

more to follow; just wanted to make sure the date got recorded.

Dr. Todd Axlund
Metropolitan Veterinary Referral Group
1053 S. Cleveland-Massillon Road
Akron, OH 44321

1-330-670-2358 (office)
1-330-666-2976 (main reception desk)



Also to remember:

Physician's Compounding Pharmacy
1-248-758-9100
1-248-758-1831 (fax)

ordered 3 mo. worth of compounded 10mg phenobarb capsules - great service. Cost $78.


And:

Universal Drug Services Ltd.
5B 851 LagimodiereBlvd
Winnipeg, Manitoba R2J 3K4

toll free #: 1-866-456-2456
toll free fax #: 1-866-783-4223

email: info@universaldrugstore.com
website: www.universaldrugstore.com

Free shipping is available for pet medications, but not for human ones. BUT - the price for the generic Keppra is still significantly lower than other Canadian drugstores even with the shipping.

(generic) Levetiracetam:

250 mg 150 tablets $179.50 +$10 shipping (10/12/07)
250 mg. 200 tablets $225.00 + $10 shipping (1/15/08)
250 mg. 200 tablets $225.00 (Coupon for shipping - $10) 3/18/08 (arrived in SIX days!)

#36.

This one makes me question how long all of Milk's seizures have been. I had the camera sitting beside me, so I was able to video from shortly after it started until he jumped down. And it was around 3 minutes, which was a surprise. Very violent, very harsh growling.

Only three days since the last seizure. This is exactly what I was afraid of. I will call Dr. L. again, I guess, although she didn't offer any suggestions about what to do two days ago, except for the bile acids test, which I can't do now because he has to fast for 12 hours, and he has to eat after he has a seizure. Once again, there was a lot of physical movement, and I had to worry about his falling on the floor. There was less jerking after most of the activity ended than usual. He started to jump down and then was too wobbly, so he just sat and stared into space for a minute or so. I was distracted by trying to keep the camera on him.

I don't know if anyone would want to see the video anyway. It is very distressing. I'm feeling a little numb now. This seems to be way out of control, and I have no way to help my sweet boy.

Somehow, this video finally got uploaded. It's very disturbing, to me anyway. Anyone who watches might want to turn down the volume on their computer.

The Plan.

Talked with Dr. L this afternoon. She feels that Milk is at the maximum dosage of Keppra that she has heard of cats using. We don't want to increase the phenobarb. There is another drug that might be a possibility, but she hasn't used it herself, or in combination with Keppra and phenobarb. She seemed to feel that, if a third drug were to be used (and I can't remember what it was called) - it should be prescribed and monitored by a neurologist.

I explained my concerns about Milk:

1) increased severity of seizures
2) increased frequency
3) diminished appetite, although it is improved somewhat

Dr. L feels that we need to get a post-prandial bile acids test done as soon as possible, and based on that (and the comparison between the previous test, which was pre-prandial), she would refer me to a veterinary neurologist in Akron. Where it would be decided, I guess, about doing an MRI and spinal tap. Neither of which I'm eager to do. The neurologist's name, I believe, is Todd Ecklund or Acklund - can't find the paper I wrote it down on a couple weeks ago. (Correction: Axlund.) He was a professor at Auburn. I asked if it was customary for seizures to escalate in severity, and if not, what it might mean. She said it wasn't necessarily usual, but since they don't have the information from an MRI to be sure exactly what's going on in Milk's head, there's really no way to know. She felt that, given his age, it was not particularly likely that he has a brain tumor, but that inflammation might be a possibility, along with something else that I can't remember. Speaking of possible brain tumors.... Anyway, I will have another bile acids test done this week, and then I guess we will go from there. She did say that the 25 he had on the previous bile acid test was not a huge reason for concern - that the area of 50 is more of a problem. I guess that's good news. I'm not totally convinced/positive that he was absolutely food free during the last test anyway. Although, Antech said that they do a "random" bile acids test that does not require fasting and retesting after food. I asked about the urine bile acids test, but Dr. L felt that it would be as traumatic to Milk to have the cystocentesis (and I don't know what Dr. G.'s experience with doing it is) as it would be to have the blood work done. I told her that I would prefer getting blood work done at his office because of the distance, the waiting time, the dogs in the waiting room, and the way that her technicians take the blood. She didn't react with horror.

I am in a state of panic about all of this. I couldn't sleep last night. I stayed up till 6AM, when I was so exhausted that I figured I wouldn't be laying there waiting for Milk to have a seizure. That is disfunctional, obviously. There has to be an answer to this. I feel like he's a bomb, ready to explode at the least provocation, and that there doesn't seem to be any solution. Even if we have the MRI, and it shows something fixable (affordable?), or if it shows something UNfixable, then what?

this was horrible.

#35. Absolutely the worst one yet. Started off kind of slowly, laying on his side on a blanket between and parallel to my calves. By the time the growling and snarling started, he was also beginning to flop violently. He flopped (like a fish out of water) so hard that he sat himself up in the meatloaf position. I couldn't get to him because he was facing me, and all that snarling is very scary - lots of teeth showing. A couple of his claws were stuck in my right calf. And he kept bouncing and bouncing. I was scared that he was going to fall off onto the floor, and all I could think to do was to try to gather the blanket up tightly to try to keep him from falling and to pull him closer, but also to not have to get too close. It sounds like Three Stooges, but it was truly awful. And for the second time, I forgot to put the camera out before I went to sleep, but I don't think that 1) I would have been able to manage taking a video without letting him fall on the floor, and 2) I ever want to see that again. I was so afraid he would hurt himself.

It took about 30 seconds after the flopping stopped for him to come out of it. There wasn't the "moment of consciousness" that was so distinct the last two seizures. He still seemed out of it when he jumped down, and he was very wobbly on his feet. He went to the kitchen to look for something to eat. He ate about 1/3 of one can and then came looking for something else, so I opened another can. He's huddled on the living room floor right now, almost a half hour afterwards.

There were no indications that he was going to have a seizure today. No excessive sleepiness, no differences in food preferences, or activity level, no changes with medication (except that his second Keppra was about 45 minutes early because I had to go out.) Early, you wouldn't think would make a difference, right?

This was a rarity - a "full moon" seizure. I truthfully don't think that the moon phase seems to have anything to do with it. What does worry me is that it's only been six days since the last seizure. This happened before, where they kept getting closer together, until they got to the place where there was only two days between events. I do NOT want that to happen again. I can't say that I've seen anything in his personality or abilities or anything that has been damaged by having three dozen seizures in eight months, but it can't be doing his brain any good, and it's breaking my heart.

I am really upset by this one.

#34, damn it

Totally out of the blue, except that it's been on my mind today that it's been almost 10 days since the last seizure. Is ten days going to be the time frame that has to be acceptable? Well, anyway, it's the 9th day. I was sitting in the kitchen when the growling started. Milk was sleeping in one of the caves on the heated mat in front of the furnace vent - could hardly get much warmer and snugglier. The minute he started growling, all three of the other cats came running, which has almost never happened. And, because he was in the cave - very soft, but confined area, with only two round circular holes at each end, he was thrashing around without much room for the flopping stuff he did during the last seizure. I manuevered the cave around so that he could work his way out of it. Then he could stretch out on the floor.

Lots of saliva this time. A LOT of jerking and body-snapping movement. Again, it seemed like a much more physical, unpleasant seizure than his norm. Even after most of the movements stopped and he was just laying on his side, there were still frequent hard jerks - of his torso, not of his extremities - no paddling movements. He lay for probably a minute unblinking, and then got up but was very wobbly. He didn't come into the kitchen for food until I called him, which is odd, too - usually, he's out here waiting for me to get him something to eat. He seems okay now. No pacing. Ate almost two whole cans of Fancy Feast. His appetite the last week or so has been very poor, and I've been bottlefeeding him again at least once a day, so eating that much is good to see. The only other thing of note today is that he has slept most of the day - in the cave, instead of with me or one of the other cats. He really seems to appreciate the heated mat. I guess I'll watch and see if extra sleeping happens before the next seizure. It might be helpful to have some idea of triggers/forecasters. Not that there's anything to do about any of it....

I would like to know if it's possible to just use Keppra by itself. And if his phenobarb could be decreased any more - I'm thinking that maybe he should have his levels checked again, even though it's only been a couple of weeks since the last test. And if the Keppra could be safely increased. And I don't have a mechanism for conveying information to Dr. L. about what's going on with Milk, either. I would like to be able to email her the seizure record, or this stuff, or whatever. Faxing doesn't seem to be something I'm gonna be good at.

A very different quality, somehow.

This morning's seizure was very different from the last five or six. It was very short, and much more physical. I was going to say "violent" - but it wasn't really violent, I guess. He must have been laying on his side when it started, and the jaw-clicking that accompanies the salivation seemed to take a very long time to get going. I usually try to gently stroke and wipe him up and talk to him during a seizure, but he was a little too far away to reach. (And I'd had the camera sitting there at night for days now; forgot to put it out last night...) The "violence" was mainly his body flopping like a fish; there almost appeared to be a sort of rippling from his head to his tail. There hasn't been that much movement during a seizure for quite a while. Growling started a few seconds after the beginning of the seizure, and was much reduced in volume. This was a quick but mean one, I guess. Over rapidly and very abruptly, with a distinct moment in time when it appeared he was himself again, although he didn't move. After it ended, he just laid there, with his eyes wide open and unblinking for a good minute and a half. And then, he abruptly stood up, jumped down, and headed for the kitchen to eat.

It's been 10 days since the last seizure, which is good, not that it wouldn't be nice if it had been 10 weeks, or years...... He started the generic Keppra from Canada earlier this week, and last night, he had the last of the 6 month old phenobarb Vet Chews. He's a little wobblier these days than he was, say, a few weeks ago. And he's not eating as well. I've started giving him the occasional bottle of Wellness again; he won't eat it from a dish on his own.

Today he's scheduled for another chiropractic appointment. I was thinking that maybe I should cancel it, but upon further consideration, this might be a good time for the treatment, since his muscles and joints have been through this ordeal so recently. Boy, I hope he never has a seizure in the carrier.

A whole big screw-up with the medication

We're coming to the end of the brand name Keppra, and at the same time, of the now-expired chicken-flavored phenobarb Vet Chews from BCP. I called the compounding pharmacy that was so unhelpful about fixing the liquid Keppra, and they were even more unhelpful about making me capsules with 10mg of phenobarb in them - they said they wouldn't do it; they would only make a 10mg liquid. We didn't have much luck with liquid before, and it was very traumatic for Milk (and for me!), so I guess we'll have to spend the $40 a month for Vet Chews. Tuna flavor, this time.

Milk won't eat the Chews - apparently regards them as being too similar to Pill Pockets - but they do make pilling him simpler. I asked Dr. G. to fax them another prescription, as the original refills had mysteriously expired (less than a week ago, of course) in only six months. I thought that everything was arranged, only to find out that, because phenobarb is a controlled substance, they have to have the actual prescription in their hands. I am HOPING that Dr. G's office was able to get the prescription in the mail yesterday, because I only have enough 10mg chews left to last until Friday. If the mail works efficiently, and BCP does the same and gets the chews in the overnight mail, hopefully, it won't screw things up any further. It's been another week since the last seizure. I could live with two a month. I'm a little nervous about the generic Keppra working the same, and they're larger than the brand name was. I wrap them in Pill Pockets and pop them into Milk's throat, so they should go down just like the other ones. If only they WORK like the other ones.....

A very unpleasant surprise

Milk's been so "normal" lately that I really had sort of put seizures out of my mind. Well, not totally, but there was absolutely nothing that would have made me think that he'd wake me this morning in the beginning of one.

I'd guess it lasted about 30 seconds - it's hard to judge. There was a digital clock right there, and it said 5:20 when I first looked at it, and 5:21 when the seizure activity appeared to be over. This one continued the recent pattern of having very little physical involvement, but lots of growling/snarling. He was laying on his side, and never changed position at all until he got up to jump down and go to the kitchen to get something to eat. My mind was caught on his tail, which had extended out from his body in a sort of "c" shape when the seizure started, and just stayed in the same place the whole time. There was a moderate amount of foaming, not a ton. He ate most of two cans of Fancy Feast afterward, and then curled up on the floor, waiting, it appeared, for me to finish typing this.

I'm really disappointed, but at least it's been two weeks since the last seizure, instead of two days....

Chiropracty and bloodwork

I took Milk on Thursday and had blood drawn to test his lead levels, phenobarbital levels, and bile acids. (I also wanted the ALT and AST, etc, but Dr. G. didn't seem to feel that that was significant if we had the bile acids.) Results came back on Friday: phenobarb level - 25, lead level - 0, and bile acids, 17. Previous bile acids result, done when he was first diagnosed, was 6.8. I don't know how significant this result is, though. He wasn't really fasted prior to the test, because he ate a few pieces of dry kitten food three or four hours beforehand. And there wasn't any feeding/follow-up blood test. The fact remains, the bile acids are supposed to be below 10. I assume that I'll hear from Dr. L next week when she gets her copy of the testing. I still don't know what this test shows about the condition or function of his liver, particularly after the excessive phenobarbital levels. I would like to know if there are supplements (milk thistle, actigall, etc ) that might be helpful for him to take. Not that I'm eager to give him a whole mess of new pills.

Saturday, we went to Dr. Doug for a chiropractic exam and treatment. There were a whole mess of vertebrae out of whack; I counted 9 times when the Dr. stopped and worked on an area. Milk was his usual sweet, silent little person - not a peep out of him during the two hours in the car, or while we were at the vet's. He was very glad to be home again, and ran around and let everyone else sniff him. He spent most of the evening napping in the dining room under the rocking chair; he just seemed worn out.

Eleven days without a seizure......

Phenobarb reaction again?

I don't like what I'm seeing here. I've noticed a distinct increase in Milk's wobbliness earlier this week. This morning, he jumped up on the bathroom sink, and stepped off into space twice with one of his back legs. His appetite is decreasing again, too; I've been giving him a kitten bottle or two of Wellness again every day for a week.

I called the Speciality Hospital this afternoon, but Dr. L. wasn't in. Milk's supposed to have bloodwork done next week anyway - phenobarb levels, bile acids, and something else I can't think of. I made an appointment with Dr. L for him for Tuesday, but I am going to call Dr. G tomorrow and see if he might have time in the AM (before I take Scruffy to the chiropractic appointment) to do the bloodwork. I prefer his method of getting blood - he uses Milk's thigh, rather than the jugular or wherever it is the Speciality Hospital technicians have to make multiple pokes around his knees. Plus, I don't like them taking him away to do it; he's such a shy little person, and I think it matters to him to have me there. Additionally, someone posted the other day on the epifelines site that Antech has a - well, I don' t know what it's called - system, program, schedule - whatever - they do a bunch of tests all at once to determine blood levels of therapeutic drugs. Antech isn't the same company that the SH uses, but I'd rather know on Sunday if his phenobarbital level is high again than wait till the middle of the week. Plus, if I can't get him in to Dr. G on Saturday, I can do it Sunday and still be ahead of the report game.

I would like to know if there are people whose cats are just on Keppra. Or what about the person on the epifelines board whose cat takes 250mg TID of Keppra? Would that work for Milk? That 250mg cat weighs 20 pounds or something, though; Dr. L seemed to believe that weight is significant in Keppra dosing.

Speaking of which - the Canadian generic Keppra came today. It's been maybe four days since I got the email saying that it had been shipped. The whole experience - except for my faxing disaster - was relatively painless, and I will be happy to do it again. www.universaldrugstore.com. They were very pleasant and cooperative. Someplace in Manitoba. Interestingly, although the package came in a big plastic mailing pouch, and you could hear the pills banging around if you shook it, and it was addressed to me and to "pet Milkshake" - there was no indication anywhere on the bag that it contained medication.

Around 9:00, I heard a funny noise in the kitchen. I thought Milk was having a seizure. When I went to see, there was a huge dark yellow puddle of clear liquid all over the floor. And a smaller puddle beside where he was sitting. He plainly looked like he didn't feel well. There was no solid stuff in the puddles, and no sign of his 6:00 Keppra pill, thank goodness. He hadn't eaten anything at 8:00 when I fed everyone, and he kept licking his lips. Hope didn't think it was anything to get hysterical about, though. (I immediately was imagining liver failure from the phenobarb.) Anyway, when I got up the next day, there was a fairly large spot on the rug of orangish stuff - ick - with three very tiny little hairballs in the middle. So, presumably that's what the problem was. Hopefully. I had gone to the store for Pepcid AC last night, and gave him 1/4 tablet then, and another 1/4 with this morning's Keppra. He ate a few treats, although I didn't see him eating any cat food. He's peppier today anyway, so I guess that's what it was....

How come nothing's ever simple?

#31.

This is really getting me down.

Sitting in the kitchen, reading on FDMB about Tucker's Mom's cat and valium. I heard the snarling/growling that now accompanies Milk's seizures. He had been napping in a cat bed under the rocking chair in the dining room. I couldn't get at him to wipe him up while the seizure was going on because he was sitting upright and the seat of the rocker was right at his head. I don't know how long it went on before the growling started - not too long, I don't think, because the other three cats all went racing out of the kitchen to go and stare at him. Very unusual. Not so much foaming this time, mostly on the right side of his face and his right front leg. He just sat there with an occasional jerk of his head and shoulders for a few seconds afterwards, and then came into the kitchen to look for food. All in all, this was a shorter seizure, the growling was much louder and more aggressive sounding, and the recovery period was quicker. I wonder if any of that is significant. Does this mean that the increased phenobarbital and Keppra together have not had much impact?

Supposed to go to dinner with the Hotel Ladies, but I don't like to leave him after a seizure. We were going to Max and Erma's, and the last time we were there, I couldn't find anything I liked anyway. The conversation would have been nice, though......

Guess I'll go and see if little Milk would like to snuggle. Sometimes he seems sleepy afterwards.

This is depressing.

Dr. L. called late this afternoon. I told her that he'd had two seizures today. She felt that it would probably be necessary but hopefully safe to increase the phenobarbital again. I mentioned that I have 10mg VetChews I got from BCP. (Didn't know that it said on them that they expired 6 months after the date on the prescription, which is exactly October 30. Crap. On the other hand, how much difference could it make, would you think?) Milk wouldn't have anything to do with them when I first got them, and I wasn't sufficiently accustomed to pilling him to force them. I think they're worth trying - as long as they don't do any further damage to his liver. The major problem is the necessity for mail-ordering them, too - and the fact that they cost $40 for a prescription of 60 pills. I wonder if there's any sense in contacting the compounding pharmacy in Avalon to see about getting 10 mg pills or capsules.....

Just to reinforce with Dr. L what a dope I am, she wanted the dates and information about Milk's seizures since two weeks ago when I left her a copy after Milk's bloodwork. I, the eternal optimist or whatever, said that I'd learned to fax, and I could fax them to her. I'd been planning to do it on my own, and I had already figured out what I wanted to send and how I could print it out first and then fax it. And, once again, I spent two hours trying frantically to get the stupid fax to work. I tried over and over. I kept getting messages in the log that there was "no data" in the message, and printed-out captions that it was sent. I couldn't figure out how to get the printer to show me what exactly it faxed. Finally, I just gave up and called the dr's office, and explained that I'd been trying to send her a fax and I didn't know if it worked or not. The receptionist said, "Oh, honey, I'll go check for you." And when she came back, she said that there were dozens of pages from me hanging out of their fax machine. I said, "Well, yeah, but do any of them contain the "Seizure Record and Weight Record" for Milkshake Guckert?" And she insisted that they did. Oh, I hope so. I sat and read the directions and clicked all the stuff the printer said to click, and still had no idea what I'm doing. I can't understand how I managed to get anything to the Canadian pharmacy the other day, illegible or not.... Dr. L. was kind enough not to mention the excessive faxing when she called. I'll be getting a bill for wasting paper.

Milk's very agitated tonight. Jumpy at noises, and doing a lot of padding around and going up and down the steps. He didn't eat much. He slept most of the afternoon on my ankle in the recliner, smashed up against Busy.

Rats - I forgot the two most important things the doctor said: 1) to increase the phenobarb to 10mg BID - using the almost expired VetChews and to bring him in for bloodwork - liver function tests and bile acid testing - in two weeks, and 2) she's got a friend who's a veterinary neurologist and has opened a practice in Akron. Todd Axlund. I don't know anything about him, experience or qualifications or whatever. Akron's about the same distance as Cleveland or Columbus. It's doable. Dr. L did mention that it's probably going to be necessary to do the MRI at some point. I don't want to think about it. Me and Scarlett O'Hara.

#30

Sitting in the kitchen, playing on Pogo, when I hear growling and snarling from the living room. I couldn't find Milk. The other three cats were all pointed toward the couch, though, and while I was looking for him, his little white tail emerged from under the couch skirt. It was awful, because I couldn't get to him - the couch is too heavy for me to hold up with one hand and try to do anything for him with the other. I could hear him banging against the frame of the couch. Probably about a minute long seizure. Then there was quiet, and eventually, he crawled out from underneath the couch. He was soaked. Even his right back leg was wet, for some reason, and his tail - much more than the usual places where he foams on his jaw and cheek and neck. He ate some more, fairly frantically - probably more than he's eaten all at once in months, and wandered around a little. He seemed alert and coordinated.

I called Dr. L, and she is supposed to call me back. A friend and I had planned to go gambling, but now I need to wait for her to call, and I'm not comfortable about leaving Milk here by himself. This is where my unresolved questions about "What's a cluster seizure?" and "Are all more-than-one seizures clusters and cause for panic and valium?" come up again. I haven't felt, other times when he's had more than one seizure - even the day when he had two distinct seizures in ten minutes - that they were connected or fueling each other or whatever. And it seems like the decision to use rectal valium should hinge on more than just the fact of the seizure occurring. Shouldn't the length and violence and timing be taken into consideration?

I always feel like the medical people involved think that I'm thrown into a panic about Milk's having an occasional seizure. Which isn't the case at all. I'd be perfectly satisfied to get to a point where he has one seizure a month. The question is - how do we GET to that point? I was thinking the other day, looking at the seizure record down the side of this blog - Milk's had, well, as of right this minute - 30 seizures, and for all of them but the first two weeks - around 9 seizures or so, he was on medication, lots of medication that doesn't seem to be working all that well. I don't think there's anyone else on the epifelines board who has had so many seizures in six months. Apparently, Milk's epilepsy is going to turn out like Puffer's diabetes - atypical and impossible to get a handle on. These poor cats - they would probably both have been better off if they'd ended up with someone more competent.

I gave Milk his first Keppra pill of the day a couple hours after the first seizure, and I just gave him his phenobarb pill a half hour after the second seizure. I HOPE that's enough medication to control things for the rest of the day, till the next pill. Please....

My shirt smells like Milk's saliva.

Well, this one was a surprise.

And an unpleasant one, at that. It seems like every time I look at Milk and think how well he's doing, bingo - another seizure to add to the list. Twice yesterday, he climbed up and stood on my chest and looked into my eyes, and he just seemed so normal.

Description - I'd have to say this one seemed more "violent", and yet, in reality, he didn't move much at all. In the middle of it, he was actually bouncing up and down while laying on his side - there was huge amount of movement, but it was very small in scope. He was sopping wet all over with saliva by the time it was over. I think it's the growling that makes these last few seizures seem worse than the earlier ones - it gives me the sensation, listening to him and watching him, that he's angry or vicious or something. Which is clearly not true, of course. I didn't put the light on until he'd climbed down, so I don't know if there was all of the blinking and jerking of his head and eyes again, but I kind of think that there wasn't; at least, I didn't feel any movement at all once the seizure ended, and he was laying between my ankles. He laid afterward without moving or making any noise for almost three minutes - I had to restrain myself from poking him to make sure he was alive - and the seizure itself lasted less than a minute. He jumped down and headed for the kitchen to eat. By the time I got out a can of food and got it ready for him, he'd circled the living room/dining room/kitchen, but it didn't have the character of pacing that he used to demonstrate after a seizure. He ate and ate. I was typing this by the time he was done eating, and he came over and jumped up onto the keyboard and looked around. He seemed very alert and coordinated. His fur was a mess from the saliva - all stiff and sticking up in clumps. And now he's sitting on the arm of the sofa, surveying the territory.

The reaction of the other three is interesting. They have always seemed minimally curious during a seizure, but once the growling and snarling started, they now seem a little scared. Burble and Busy climbed up onto the couch and sat in their kitty pi's, and Puffy just sat in the middle of the floor staring. He was sleeping beside Milk when the seizure started, and it surprised me that I had to actually put him down to wipe up Milk - I would have thought that all the noise and jerking would have made him move on his own. They don't do any "checking" afterwards, either - no sniffing or watching him suspiciously or anything. Life just goes on....

This is the fourth day on the increased dosage of Keppra (brand name prescription from Sam's Club.) I have to hope that using the generic from Canada when it gets here doesn't make things worse. He's still getting 8mg of phenobarbital every 12 hours, too. That's five doses of medication spread out over 24 hours every single day, and yet the seizures keep coming.

I was just looking down below to add the date to the moon information, and realized from the previous post that it has only been since September 26 - a little more than two weeks - that Milk's seizures have included the creepy, noisy growling. I wonder if it's normal that the features of seizures change over time, or if it's a factor of the kind/amount of medication. Not that it makes much difference, one way or another. I'm still dreading waking up to find that he's peed all over the place. Puhleeze don't let that happen, God.

I'd like to be reassured that all of this isn't causing some sort of brain damage. Actually, I'd like it to just STOP. Period.

So far, so good.

No seizures since 10/7. How sad to be happy about going three days without a seizure. At first, Milk seemed a little wobblier than usual (even for him these days), but today, he's pretty much back to normal. He seems more interested in food, too. Someone on the EpiFelines board said that her cat was inappetant on Keppra. Never know, I guess.

This afternoon, after fiddling around for an hour with my new found/lost faxing skills, I managed to get the prescription for the generic Keppra sent to Canada. They have some sort of rule about only sending unopened packages of pills, which means that what's on your prescription isn't necessarily what's in the order they send you, apparently, but that actually works to my benefit. I don't know how many pills exactly I'll be receiving. The prescription was for 45 pills, with two refills. The Customer Service person I talked to at Universal Drugstore.Com (who has a cat that's been newly diagnosed with asthma and a vet she's not very happy with...) said that the pills come in 100 unit lots, so I will be getting 200, I guess. Or maybe 150. I really don't care which - it gives me a little more flexibility about ordering refills and dealing with the Canadian postal system. The total price - and I don't know if this includes the $10 for shipping or not - is $179. Which is still much better than the US price (for the brand name Keppra because the generic isn't approved here yet); I was told on Saturday that 45 pills would cost $92.32, and when I went to pick them up on Monday, the price had increased to $107.something. I hope the generic works.

Seizure #28

I didn't know this one was occurring until I heard Milk growling from the bedroom, and Busy and Burble went running in. Milk and Puffy must have been sleeping on the bed - they snuggle up in there frequently. There was a wide swath of spots on the bedspread from his saliva, and the cuticles of two claws. By the time I got there, he was laying on his side and was quiet. The only body motion I saw was a large amount of blinking and jerking around his eyes and his head. He lay still for a little while, then jumped down and went to look for food. No pacing. He meowed while I was getting his food, which hasn't happened before, and he ate most of the contents of three bowls. He groomed a little bit, and now he's sitting like a meatloaf behind my chair. I know that they say that people are not aware of what happens when they have a seizure, and the animal communicator said that he told her he just goes away from his body until it's over, but it makes me so very sad to think that this keeps happening to him.

I had a bad feeling about this today - he slept most of the afternoon and early evening in my computer chair, where I could see him from the living room, and I kept expecting that he'd have another seizure there, like the last one. He seems generally alert these days, but much of the physical stuff he's been doing since the last phenobarb reduction - leaping up onto the top of the cat tree, jumping from the wing chair to the back of the couch, chasing Burble up and down the steps - has pretty much disappeared. I don't know if he's aware that his balance isn't quite right again or what, but there is much less activity now.

I have the name and phone number and a form to fax to a Canadian pharmacy tomorrow. (If only I had a fax machine...) I have to call them to see if the prescription I have that is for an odd number of pills and only two refills is acceptable. (Their form says that they only ship whole bottles of pills - regardless of what the prescription says. Which could be a plus, actually. And that they prefer to fill three months worth of prescriptions at a time. I hope that I don't have to drag all the way back to Etna again to get more prescriptions from Dr. L.) The price difference is significant - 45 pills at Sam's Club - the cheapest around here, with the discount from the AAA - costs $92.32. ($2.05 per pill of the brand name Keppra - no generic in the US.) The Canadian price for 50 brand name Keppra pills is $72.50, or 1.45 per pill, and the generic pills are sold in lots of 100 for $112.50, $1.12 per pill. Shipping is an additional $10 unless the cost of the pills is more than $100. Which I could do, if I can get the prescription stuff straightened out. The length of time for shipping says to expect at least two weeks, which means that there's going to have to be a lot of planning and keeping track if this is going to work. And I'll have to figure out how to get the fax on the printer working....

There was a big argument about the treatment of cluster seizures in cats on the epifelines' board this week. I don't know for sure, but I suppose that Milk's seizures on several occasions would have been considered "clusters" - there were more than one in a short period of time. The worst was three, I think, in an 8 hour span. Dr. L did give me a vial of valium to use in case of status seizures. I can't even bear to think about it.

and yet another....

I really don't like how the amount of time between seizures is decreasing. First it was 10 days, then 5, and now 4. It's been a long time since he had one in the daytime. Tonight's, he was sleeping on my computer desk chair. This one seemed to have a little trouble getting going, or something - I was in the living room, and I could tell that he was having a seizure, but aside from very minimal foaming, he seemed to be just laying on his side. It was very short, too - probably not more than 45 seconds. He moved very little, but the growling/snarling noise started about a third of the way into it. There was some mild shoulder jerking. When it was over, he let me wipe his face, and lay without moving - virtually in his original position - for about a minute. (Sounds short, but when it's happening, it seems endless.) He was making eye contact - in fact, his left eye was jerking - but I'm pretty sure he wasn't seeing me. Eventually, he jumped down. I got a can of food out for him, and he ate about 2/3 of it. No pacing. I added a little water and some dry food, and he ate almost all the rest. His coordination appears to be off now, which I didn't notice happening before. He's not walking quite right, and he's just sitting erect and looking around. Usually, there don't appear to be any lingering effects after a seizure. I wish I'd thought to grab the camera since it's daylight.

I have been a little worried for the last few days - Milk's balance doesn't seem to be as good as it was recently. I noticed that, when he shakes his head, there's that instant of "tilting" that I haven't seen since the phenobarb was reduced. It may just be the magnification of my concern about him, I don't know. He seems fine otherwise.

Just fifteen minutes before the seizure, I opened the envelope containing the Keppra prescriptions from the IM specialist. A little late, huh? I called Sam's Club, which had the best price ($93 for 45 pills - if they didn't make a mistake when I originally called them or something). They can order the pills in the 250mg size that we need, but it won't arrive until Monday. Which is very annoying, since all that time from last Saturday - when the phenobarb levels came back, until today (Friday) when the prescription arrived - was essentially wasted. I never did get to talk to Dr. L. She kept having technicians call me. I'd ask a question, the tech would say "Wait a minute", and then come back with the answer. I don't know why the doctor couldn't just have picked up the phone herself, when she was obviously standing right there. I still have a couple of things I wanted to ask her. Like, what about the liver function - I would have thought that they would have done those blood tests on Friday, too. And what about giving him milk thistle?

I hope he makes it through the rest of the weekend without any more seizures so we can start the increased Keppra dosage. And that I can find a Canadian pharmacy to fill the other prescription, and quickly (especially with the Canadian customs ordeals), since there are no refills on this prescription for Sam's..... There seems to be some sort of trust issue with this vet hospital and prescriptions; they wanted me to return the initial prescription they gave me - not just tear it up, but drive back down there and hand it to them. I'm hardly likely to abuse seizure medication that my poor cat needs desperately.

I have a huge knot in my stomach, worrying about how many more seizures he's going to have and how close together before we start the increased Keppra. And if it's going to work.

And another......

Well, aside from the time - 5:35 AM (how come these always happen when I've only had an hour's sleep?) - this was a pretty atypical seizure. He was lying on his side, and there was hardly any motion at all. Very little jerking of his shoulders until almost the end, and no movement of his legs at all. A minimal amount of foaming. Almost constant snarling sounds during the whole short seizure. And when it ended, he just lay there. His back was to me, so I couldn't see his face, but I could tell that his eyes were open. Otherwise, I would have thought that he fell asleep again. After three or four minutes, he jumped up and went over to an empty food bowl, looking for something to eat. No pacing. I gave him a can of FF, which he devoured quickly. When it was gone, he was still looking for food, so I gave him a few pieces of dry. He went into the living room after eating and sat in the meat loaf position.

A technician called from the Specialty Hospital on Saturday morning and left a message that Milk's bloodwork results were in. Unfortunately, and stupidly, she didn't leave the number for his phenobarb level in the message, so we've had another two days of stewing about whether the current dosage - 8mg BID - is still threatening his liver function. I don't know what number of seizures Dr. L. would consider acceptable or when she would make some dosage adjustment. Hopefully, I'll be able to talk to her today.

Every time Milk starts acting totally normal, bingo - another seizure.

I am depressed.

Addition: The phenobarb level was 21, which is good, except for the fact that he's had four seizures in two weeks and the interval between them is shrinking rapidly..... I was surprised that the vet didn't order liver function tests to be done at the same time, considering that the ALT and AST were way out of whack a couple weeks ago. And Dr. L didn't call, so I don't know if there's anything to be done about adjusting the medication, either. It was my impression that Keppra dosing is done strictly on weight, which would make it less likely that his dose would be increased, I guess. Hopefully, maybe she'll call tomorrow. Or I can leave a message for her. As much as I am not crazy about pushing more pills down his throat, I would also like him to be on Milk Thistle, too. (I'm convinced it's what saved my liver and put me into remission.)

Not much correlation

As I said, just for curiosity's sake, I was interested to see the correlation between Milk's seizures and the full moon. There wasn't much. Or maybe there was, and I just don't know how to figure it. Anyway, here are the dates (and it is noted if there were multiple seizures, although some clusters may be spread over more than one date, which isn't noted. geez. ) and the percentage of the full moon for that date. I don't know how you would allow for the presence/quantity/variety of medication, either, come to think of it.

3/23/07 ***** 23% (waxing)
3/24 (2x) ***** 34% (waxing)
3/25 ***** 50% (waxing)
3/27 ***** 65% (waxing)
3/29 ***** 83% (waxing)
3/31 ***** 95% (waxing)
4/1 ***** 98% (waxing)
4/2 FULL MOON
4/3 FULL MOON
4/4 ***** 98% (waning)
6/11 ***** 20% (waning)
6/15 (2x) ***** 0% New moon
7/12 (3x) ***** 7% (waning)
7/15 (2x) ***** 1% (waxing)
7/17 ***** 8% (waxing)
7/19 (2x) ***** 23% (waxing)
9/16 (2x) ***** 23% (waxing
9/26 FULL MOON
10/1 ***** 72% (waning)
10/5 ***** 31% (waning)
10/7 ***** 14% (waning)
10/12 (2x) *****1% (waxing)
10/17/07*****30% (waxing)Now, does anyone have any brilliant interpretations?

Same time and place, different day........

One more seizure. Crap. Well, I should be grateful it was only one, right?

He was sleeping between my feet, as usual. It took a few seconds to realize what was happening. There was less jaw snapping than usual, the body jerking was pretty much the normal amount, but towards the end, as I was wiping up some of the saliva from his face, he made these three very loud, scary-sounding, gutteral noises. Not exactly a shriek, but creepy. This is only the second time he's ever made noise during a seizure. The seizure ended five or six seconds later, and he just laid there. I wiped some more. Then suddenly, he jumped down and dashed off. It wasn't the usual pacing from before though. Not as long, and not covering as much territory. I went to the kitchen to fix him a bowl of food, expecting that he'd come in to eat, but he didn't. I went into the living room, and he was cleaning up a bowl that I'd left for Scruffy in case he dropped too low. (Couldn't we just please have one problem at a time, for Pete's sake?) I put the new bowl down and he eagerly started eating. I went to the bathroom, and when I came back, he had moved to the first bowl again. I'm a little nervous, remembering that the last seizures had come only five minutes apart, but so far, it's been about twenty minutes and nothing more has happened.

I wonder if the changing of parts of the seizure routine indicates some sort of progression of the disease? (Always dreading the possibility that he's going to start peeing during a seizure....) I'm surprised at this one happening, too, because we've been very regular with the medications, and he's been incredibly himself again. You'd never know, except that he still needs to gain a little weight and start eating a little better, that he'd even been that sad, falling-down, overdosed little white cat just a couple weeks ago. He has been very active - sometimes I worry that all that flying around all over the house might trigger a seizure, but so far, he's only had seizures when he's asleep.

I want to be more calm about this one. The last two really came as a shock, and I didn't handle the disappointment very well. At least it's been 10 days since the previous seizures. Think positively. I wonder if they increase Keppra based on breakthrough seizures. It would seem not, since Dr. L. was concerned about his weight for prescribing the dosage. Aha - he's gained six or seven ounces in the last few days - I wonder if that's significant. I didn't call about an appointment for his blood work because I have to take Scruffy to the eye doctor this week, but maybe if Stephen can go with me, I could just have the technician appointment for bloodwork...... Dr. L. can be happy that I didn't get her out of bed this time, anyway.

One last thing - Hope suggested keeping track of the full moons to see if there is any relationship between them and the seizures. There is a full moon now. I "borrowed" the moon phases thingy that Steve put on FDMB, and have added it to the blogs for both Scruffy and Milkshake. I believe there's also a way to use the moon phase website to go back and check other full moon dates - when I have a lot of extra energy, I'm going to do that, just for curiousity's sake, to the dates of Milk's seizures.

Still going well.....

Between the ease of giving the Keppra in capsules and only bottlefeeding little Milk twice a day, I feel like I'm on vacation! Well, not exactly, but.... He has eaten willingly from a bowl for the last two or three days. Not a lot, but enough to give me hope that he'll be able to regain a little of his weight. It's going to be a shock to Busy when Milk is once again eating completely on his own - he thinks Milk's his own personal smorgasbord. He hangs around while I'm feeding Milk so he can get the clumps of cat food that I missed with the washcloth. (This looks like affection, but it's actually a careful surveillance for Turkey Wellness!)




Milkshake has become the great bug chaser. All those bugs that manage to get into the house in September have NO idea that he's waiting for them. Yesterday, he found another of those nasty-looking, unidentified black bugs with the big mean pincers on its head. I stepped on it before it took a chunk out of my little white boy. Right now, he's behind me, pursuing what I think/hope is a cricket. Unsuccessfully.

There are no words to describe how incredible it is to see my Milkshake once again bounding around the house and playing and watching the birds, and snuggling with the other cats. It makes me sick to realize how badly he was affected by the unintentional phenobarbital overdose. I need to take him next week for blood levels again. If you can judge by his behavior and activity level, they should once again be in a safe range. Fingers crossed.

Two was enough.

Hopefully, those two seizures were the last for a very long time. I can't understand Milk's even having them, because in the last couple of days, the change in him has been drastic and amazing. He looks like himself again - still thin, but sleek and tall and somehow confident again. He hasn't fallen off anything for two weeks. When I'm holding him and I set him on the floor, his back legs no longer collapse under him. And this morning, miracle of miracles, I put his food bowl down in front of him - well, he walked off and I had to follow him around a little while - but eventually, he ATE the food. I have continued to give him the same canned food that everyone else gets, even though he didn't eat any of it, but he wants dry too; until his weight begins to improve and he develops an actual appetite again, that's fine. He's eating a ton of treats, too, now; besides Rege's treat routine with them, I've been giving him treats as a bribe with his pills.

He doesn't seem to be absolutely sure that the grape-squirting phase is over. I dip the end of his Keppra capsules in butter, which he really likes the taste of. Doesn't encourage him to be any more cooperative, but at least I know how much Keppra is getting into his body.

I love to look at him now - you can tell that he's feeling so much more normal. Such a sweet boy.

oh, no. two seizures in ten minutes.

I woke at 5:00 AM to the sound of Milk's having a seizure. At first, I didn't realize what was happening. It's been quite a while, and things have been going so well with him. I thought last night that it was amazing how much back to normal he is with the reduced phenobarbital, except for the continued anorexia. He's been getting the compounded capsules instead of the awful grape liquid Keppra for four days. I can't imagine that he's getting any less Keppra from the pills than from the uncertain amounts I was squirting into his mouth three times a day.

It was dark when the first seizure started, and I didn't want to turn on the light or move him. There was the usual jerking body movements and foaming. When it stopped, after probably less than a minute - I don't know how long it was going on before I woke up - he didn't do his usual pacing. He just sat and let me wipe his chest and face. Then he snuggled up against me. I thought that it was over, and was wondering why he didn't want food like he did after previous seizures. And then, he sort of looked over my shoulder with a kind of haunted look in his eyes - hard to describe, but it was like he saw something unpleasant coming. And then saliva started to drip from the corner of his mouth. He looked scared, and his eyes got real pink around the outside edges. I thought, like a dope, that maybe I could interrupt the seizure before it started by talking to him and stroking him. Didn't work. He collapsed on his side and the jerking and foaming started again. It seemed shorter this time than the previous time. I cleaned him up again, and then he wanted to get down. I gave him a can of food, and he ate almost all of it. There was still none of the ritualistic pacing.

I went back to the living room with the phone and called the emergency hospital. (Dr. L. had left me valium and catheters there, but I didn't get them picked up.) Short of bringing him in for them to look at, the emergency people didn't have anything to offer. The receptionist said to call the regular number for Dr. L and they'd leave a message in her voicemail. Which I did. The 2nd receptionist took the information and I thought she said that she'd have the doctor on call return my call. When the phone rang, I had to ask who it was - it's now 5:45 AM - and it turned out to be a very sleepy Dr. L, who had been awakened for my call. Apparently, there isn't a doctor on call, exactly. She asked how long Milk had been at the reduced phenobarb dosage of 8mg bid, and I wasn't sure - I thought it had been two weeks - then I looked on here, and it's only been 11 days. She said I could bring him to the emergency hospital if I thought it was necessary. Othewise, I should watch him and see if there are more seizures, and that I could make a "technician appointment" for blood work next week. Which I guess I will do. And I need to pick up the stupid valium, too.

This is very upsetting. Things were going so well. He is - except for the still very diminished appetite - pretty much totally himself again. I can't remember the last time he fell. He looks alert and aware. He's hopping and jumping all over the place, and snuggling with the other cats just like before. I wanted it all to be over with.

To make things even worse, while I was mopping up Milk from the second seizure, Burble jumped on Scruffy, who dragged himself and the orange pain-in-the-neck toward the kitchen. When Scruffy came out - apparently having eaten some of the food that Milk didn't finish from his second can - he was noticeably limping on his right front foot. He let me pick him up and test him, and touch his foot. I didn't see anything wrong with it - no blood or anything. He didn't fuss about my lightly squeezing it. I put him down and he limped over to the tv stand and tried to crawl behind it. I don't need TWO of them to be dragging to the emergency hospital.

My mother wanted me to come down and take pictures of her hundred year old mulberry tree, or whatever it is, today. Now I'm afraid to leave both Scruffy and Milk. This was NOT supposed to happen.

Shhhh! (Still no seizures!)

9/4/07 - reduced phenobarb dosage to 8mg BID. I'm a wreck about it. While the Keppra certainly appears to be working so far, because it's liquid, I never have any idea how much he's actually gotten in his body. Sometimes it appears there's quite a significant quantity on ME. I'm working on a less complicated (subtracting the towel from the equation) way of administering the stuff. It's worked the last couple of doses to get him when he's asleep, pry open his mouth, and squirt it in. I wish it was pills. I wish it didn't have that grape taste. I wish I didn't have this enormous bottle that cost $125 to get into him, and I wish he would hurry up and gain enough weight to be able to order pills from Canada. It would be so much less of an ordeal to have to pill him five times a day than it is with this smelly liquid.

That whining over with, there has been a very noticeable difference with the reduction from 36mg to 24 mg per day. He's much more alert and coordinated. And jumping around like he never had back legs that were useless. I've taken a ton of pictures in the past week or so of him snuggled up to the other guys just like in the good old days. (He told the animal communicator how much he loves Scruffy and Burble and Busy, and you can see that so clearly in the pictures.) He's still not eating voluntarily anywhere near an adequate amount, but two mornings in a row, he has spent a couple minutes grazing in his bowl. This morning, he didn't even try to bury it first. I switched from AD to Wellness for his bottle, and while he doesn't seem to be gaining any weight, at least he's staying about the same. (Let's have a cheer here: Chunk it up, Chunk it up, Waaaaaaaay Up! Eat, Milkshake!) I couldn't get Dr. L to commit to a weight that would mean that he can take pills instead of liquid. I'm hoping that it's ten pounds, which would be a not-too-huge gain.

Best of all, now when I look in his eyes, he's IN there again.

Keppra is working(?)

I'm almost afraid to post anything about this. Don't want to jinx what looks like it might be successful. Milk started the liquid, grape-flavored Keppra (I apologize to him every time I squirt it into his mouth) on Saturday, August 25, 2007. I was able to use the prescription that Dr. L gave me for Canada to buy a bottle of the liquid at a compounding pharmacy on Friday, but the pharmacist added chicken flavor to the grape flavor, and I couldn't bring myself to give him that horrible crap. So, on Saturday, Dr. G. called in a prescription for a couple days' worth of the liquid Keppra until I can talk to Dr. L.

So far, so good. (It's Friday, one week later.) No seizures. But my life has disappeared. He's still not eating, so I'm still bottlefeeding him four times a day. (He will eat treats, thank goodness. Bribery exists.) I did switch from AD (full of all sorts of liver and chemicals) to Wellness, which seems to have been an okay idea. Then he gets .9 ml of grape Keppra liquid three times a day - has to be every 8 hours exactly. He hates this. I have to capture him, wrap him in a towel, and then figure out a way to squirt the Keppra into his mouth without getting it all over both of us. The last two doses, I have no idea how much got into him - it was all over my chin and shoulder, and there is, of course, no way to know how much was wasted, or what the actual dosage given was. Then we add the lowered phenobarbital dosage of 12mg BID, which also is supposed to be at exactly 12 hours apart. In between that, I feed the other three, and test and shoot Scruffy whenever. I've got - with luck - (it didn't work today because Scruffy for the first time in weeks was actually dropping - way too fast and too much, but dropping - when I wanted to go out) four hours in the afternoon for my life. I can't figure out a better schedule for Milk's medication, either. I don't want them too close together, in case one or the other makes him throw up. I'd rather not be chasing him around all day to shove stuff into his mouth. I asked Dr. L this afternoon when he will be able to switch from Keppra liquid to pills, which would hopefully be cheaper, and which would definitely be more dependably dosed, and less messy and less repulsive to poor little Milk. She said, given that he still won't eat, it's going to be quite a while, since she's basing the dosage on his weight. I don't know what they'll do if he starts to have seizures again. The phenobarb is to be lowered again on Monday or Tuesday, with a goal of having him on 8mg BID. She didn't say anything about increasing the Keppra. Maybe she wants to see if he has a seizure first. He's much less clumsy and uncoordinated, he's not sleeping as much, and he's more active. If only he'd eat...

Shocking lab report

Well, Milk had his appointment with Dr. L on 8/23/07. She didn't have much opportunity to observe him walking, as he was too scared to do much but slink around, flatter than a pancake. His weight on their scale was down to 9 pounds, 8 ounces. She wants to add Keppra to his medications, and calculated that he would need, based on his weight, 90mg three times a day.

On 8/24, a technician called and said that the blood work results were back, and there "didn't appear to be any liver failure yet." I thought that was a kind of peculiar remark, until she then said that his phenobarb levels were 56. FIFTY SIX. (The standard, which was established on dogs, is 15 to 45, and cats are supposed to be as close to 20 as possible. ) I was stunned. He's been essentially on the same dosage (well, right now, he's taking 4mg/day more than in the beginning) for going on five months. The last pheno level was 25.6. At any rate, the phenobarb was to be cut back - per Dr. J, who isn't the actual doctor we saw - to 16mg AM and 8 mg PM. (Someone suggested on the epifeline board that it'd be better to do 12 and 12. I don't understand their emphasis on making the dosages even, but it's doable. I still have a bunch of those little skinny pills from Costco that can be easily broken into quarters. The small but very thick pills from CVS - it wouldn't be possible with them, I don't think.)

After a whole mess that I don't even want to think about - but which ended up with me paying $55 for chicken AND grape flavored liquid Keppra - makes me shudder just thinking about that mixture! - on Friday afternoon at a compounding pharmacy in Avalon - I am really unhappy about the whole thing, and even though this guy has the prescription, I'm not going back there - I heard from Dr. J., Dr. W in Ohio, and Dr. G, all within the space of an hour or so on Saturday. Dr. L, our actual IM physician, is to be back in on Monday, the 27th, so I assume I'll hear from her then. I want to know how close Milk is to being able to use a standard (non-compounded) amount, preferably in pill form. The grape liquid is torture for both Milk and I. The amount is large enough to make the plunger of the syringe be almost all the way out of the barrel, and I have not yet been able to get the whole dosage into him in one try. He doesn't foam, which is a blessing, but he really doesn't like the stuff, and I would prefer to give him pills that I don't have to pay an arm and a leg for. Between the 3 times a day Keppra and the 2 times a day phenobarbital and the 4 feedings a day, Milk has gotten to the point where, when I walk in his direction, he speeds up his wobbly little bod and disappears. He did eat a little from his own bowl yesterday morning, but not enough. I'm going to change from AD to Wellness for his bottlefeeding; practically the only ingredient in AD is liver from pigs and cows and chickens, etc. At almost $2 a can, I'd really rather he had better quality food.

On the positive side, with the decrease in phenobarbital and the addition of Keppra, he seems to be navigating a little better. The appetite still needs work, although he's more than willing to eat all the treats I offer him - working on making that a more effective bribe! He's been successfully jumping from the back of the armchair over to the back of the couch, which I don't think he would have been able to do a week ago. And he seems a little more alert. Now if he'd just EAT.

Oh, where, oh, where has his appetite gone?

We have about reached the point where Milk's not eating much of anything on his own. Even the dry that I put down for him to eat after his pill usually ends up getting eaten by Busy or Burble. So wonderful, I'm damaging THREE cats, instead of just one.... Feeding him four times a day with the AD - an entire can - seems to make it possible to maintain him at 9 pounds, 14 ounces. Sunday, I only fed him three times, and he lost 3 ounces that he can hardly afford. He's a fur bag full of bones. A lot of nights (and very early mornings!) he and Burble and Busy go careening around all over the house. The last couple days, not so much - he seems sort of weaker, and is definitely wobblier. He had a terrible fall off the cat tree. I'd just poked Scruffy's ear, so I couldn't get up in time, and in literally a split second, Milk jumped up, slipped, hung on with one claw, and then fell about three feet and landed flat on his back. I couldn't get to him before he got back up. He seemed to be okay - more surprised than anything. He never seems to remember that he's likely to fall until it's too late. I'm sick to death of watching him be unable to do all the stuff he worked so hard to do after he first came here.

I posted on the epifeline board today to ask about Keppra. I wanted to know if it replaces phenobarbital. (Wouldn't that be wonderful!) There were a bunch of posts from January from people using Keppra, and it seems as though some of the cats were wobblier on it, and at least one lost his appetite. That's not good news. Someone also posted (from Germany) that someone - an authority, I assume, although I didn't recognize the name - preferred Topamax to Keppra. I hadn't seen that before. I just want something that will let my cat be himself again, and make him want to eat. The smell of AD is turning my stomach. It's everywhere - not just the smell, the AD - it sticks to my watch and to my clothes, and to poor little Milk's fur. Fortunately, Busy has decided that it's his job to clean up after Milk eats. He licks and licks and gets all those lumps of food off the little boy. (Busy can use a few extra calories, too.) It's a good thing - I would hate to have the specialist see him on Thursday with that stinky food all over him. It's almost impossible to wipe it off - it just turns into smaller lumps and clings all the harder to his fur.

I'm nervous about Thursday. I don't want to leave him there for them to do stuff to all afternoon. He's such a shy little cat, and he feels lousy. How do I know they'll be nice to him? What kind of awful things are they going to do? How is he going to understand any of this?

This is not going well.

I love pictures of Busy and Milkshake together. The contrast of their fur, and the cuddling they do is so appealing. I like, too, that it's a very similar kind of nurturing relationship to the one Busy and Britty had for the first five years of his life.

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It has become increasingly difficult to get Milk to eat. Wonderful Hope sent me a scale that actually tells you what the weight is in understandable numbers (as opposed to the one I've been using that doesn't), and he's down to 9 pounds, 14 ounces. Back in March, before he started having seizures, he weighed something close to 12 pounds on my other weird scale. He's very wobbly - when he shakes his head, the way cats do, he can hardly stay on his feet. I've been getting at least a jar of baby food meat, mixed with lactose free milk, into him every day, but it's clearly not enough maintain his weight, it doesn't contain all the nutrients he needs, and I guess I'm gonna have to see if Dr. G. has any AD at his office. The only things Milk will willingly eat are treats; not much nutrition there, either. I now have three different kinds of dry food to give him with his pills - Wellness Core, Nature's Variety Chicken and Rice, and Wellness Kitten. He seems to prefer the NV, although as of yesterday, he doesn't eat more than two or three pieces of any of them. Maybe I should go out and buy a bucket of Meow Mix or something.

Okay, I got ten cans of AD this afternoon, and so far, have gotten about a half can into Milk. He also ate a few little pieces of baked chicken breast, and a bunch of treats. I'm going to weigh him often.

We have an appointment on August 23rd with the internal medicine specialist (not the doctor that the Ohio State neurologist recommended - when I said that I was told specifically to see him, the receptionist said that my appointment was with his associate. Which might be okay anyway; I know two people who took their cats to the original doctor and were not happy with him. He's supposed to stay the whole day, although I don't know what for exactly. The estimate was somewhere around $500; with ultrasound (which I'd been told wasn't useful for diagnosing the cause of seizures, so maybe the receptionist just made it up), $1200, and with the MRI (which I believe they don't even DO at this office), $2200.

The dosage reduction last week (1/4 pill less each day) seems to have been not a problem, thank goodness. As far as I know, he hasn't had any seizures since the reduction, and I haven't seen any of the "mini-seizures" - the odd behaviors that didn't include the seeming loss of awareness and foaming of the real thing. I wish I knew how rare a result this almost total lack of appetite is with phenobarbital. I have to assume that the phenobarb is the cause, because his appetite diminished immediately after he started taking the stuff.

I was just reminded of one of little Milk's funniest habits (which has disappeared, along with virtually everything else about him that was so wonderful) - he was the self-appointed litter box monitor. He'd sit in the kitchen and watch for the others to use the box, and then he'd make sure everything was properly buried. He'd scritch and scritch and scritch, and the other three would watch him like he was nuts....

This is really getting me down.

Making progress, hopefully.

The veterinary neurologist from Ohio called me back this morning. She isn't in practice any more, so she doesn't need to see Milk. She recommended making an appointment with Dr. J., the IM specialist in Etna. (Which required a referral from Dr. G.) I called them, and their earliest appointment, assuming that I get the referral in, is the last week of August. Which isn't too bad at all. Dr. W., the neurologist, also recommended that I give Milk the herbs that the animal communicator gave me - Gava and Cudweed. She said that they do not impact the phenobarbital. She also suggested the possiblity of using Keppra with the phenobarb, in the hope of reducing what is quite a large dosage. She is concerned with the dosage, and with the weight loss and lack of appetite. So, we're all on the same page, I guess. She was very nice, and is apparently doing this for free....... (She also mentioned that she has been experimenting with a carbohydrate called PSP that is supposed to have a very significant effect on FD. Now that'd be a blessing, too.)

I called Dr. G. and requested a referral, which the technician said she'd send out this afternoon. So tomorrow I'll call and make the appointment. I am pretty sure that this is the same doctor that I was referred to for Scruffy back when they thought that he had FIP, or when he was first diagnosed with diabetes, or something, and the initial appointment was like $800 or something. But, Milkshake's circumstances are so dire at this point that something has to be done. This is unbearable.

Weak and starving both?

Milk's had two very bad days. He has fallen repeatedly. His back legs just don't support him. I don't know if this is caused by the phenobarb; other people on the epi-feline message board also said they had rear leg weakness. But maybe, maybe this is because he's not eating enough, too? The last thing I want to do is recreate his days of being starved. He's so skinny. I weighed him this morning, on that stupid scale that the ounces only go up to .9. The last time he was at the vet's, he weighed 9 pounds, 15 ounces. I'd weighed him at home before we left, and he was 9.9. This morning, on my stupid scale, he was 9.8. Not a lot, I guess - although who knows what he actually weighs, but it's still a loss. Even when I give him two dozen or so pieces of Wellness Kitten dry with his pills, he never finishes more than half. I'm thinking that I need to get some baby food and start bottle feeding him. I don't like poking syringes in their mouths. Or should I ask Dr. G. for cyproheptadine? How come the appetite stimulant part of phenobarbital isn't working at all for him?

Giving him phenobarb is getting more and more depressing; he's still a zombie from the previous dose, and it's time for the next one. Am I supposed to choose for him between this state of being totally out of it or having seizures that have the potential to increase in frequency and severity? I don't want either one for him. I have been periodically giving him one 1/4 tablet instead of two per day(the last dosage increase), which I know isn't recommended, but this is so hard to watch. He hasn't had any seizures since the last increase on July 19, but the cost to him has been enormous. He rarely plays, he falls all the time, and his interactions with the other cats is frequently very agressive and unpleasant when he is awake - a lot of neck-chewing and everyone meowing. Sleeping, he's snuggled up against one of the others just like he used to be when his life was actually a life. The communicator said that it's important to be positive and to affirm the good parts of his life, but truthfully, all I see is a poor little cat that has had a horrible beginning, a decent "middle", and back to horror again, and he's only two years old. I can't watch him wasting away.

The Animal Communicator

Hope, and Dale, and Linda (and Wild Thing) got together and gave me an hour with Morgan the animal communicator for my birthday. The appointment was this afternoon. I was a wreck, thinking that all four cats would tell her that I make them crazy and they'd like to live elsewhere. But she said they like me, they realllly like me. (HA!)

We talked a long time about little Milkshake. He wanted me to know that he'd been with me before, when he had another life. (I wish I'd thought to say, "What life?" - I think so slowly on my feet.) I think he was actually my beloved Black Kitty, who died in 2000. It would seem to explain the instant attachment I felt to him, even in his cage at PetSmart. Anyway, she did a "body scan" on Milk, and she said she saw inflammation and pressure in his head, but no tumor. She suggested the use of two herbs - cudweed and gaba, I think they were (boy, did I have those names screwed up!) - that she'd used for animals with seizures before successfully. I'm willing to try them, although I don't know how I could tell if they were working or not since he's taking phenobarbital. Maybe I could call her again and she'd get him to tell her? It was very touching, and made me cry again and again. There is something undeniably connecting me to this little white cat; I've never had eye contact with a cat before like with him. Phenobarb has sadly taken away some of the things that were most meaningful with him, but maybe they'll come back eventually. She said that he does love the other cats, even Burble. My mind doesn't retain stuff much any more, so fortunately, Dale was recording the conversation at her radio station, and I'll be able to refresh my memory when I get the CD. Another significant thing Morgan said was that Milk's got four or five vertebrae that are severely out of whack and causing him pain. (Could that be contributing to the rear leg weakness? Or could all the falling down have added to the problem?) She said that he said he feels "hazy" before a seizure, but that he "goes away" from his body during one, so it's not scary to him. She also has a friend who teaches neurology at the Ohio State Vet School, but is in private practice, and suggested that I call her friend - Sue W, I believe her name was - and ask her to look at Milk's blood work and tests and stuff and consult with Dr. G. She's in Columbus, which is about a two or three hour drive - so maybe she'd be a possibility for an actual hands-on visit. She practices "integrative" medicine - both the allopathic and the homeopathic, I think Morgan said. (Every time I think about using herbs, I remember the Chinese herbs that kind Dr. Doug had made for Scruffy - a liver flavored liquid that made him foam and foam, and an incredibly stinky pill that was so enormous that even cut in half, I couldn't get it down Muffer's throat. I hope that these herbs are more palatable.)

Little Milk's not having a very good day today. He seems weak and pretty out of it. He's been asleep almost the entire day. And he ate almost nothing but a little of the dry food that I gave him with his pills. He's really back to the "bag of bones" stage. Morgan suggested giving him milk. (Actually, she said, "The word "milk" keeps coming to me." I said, "Well, yeah, that's his name." Anyway, she thought he might enjoy having some milk - and if he'd drink it, I'd be glad to give him some of Rege's lactose free stuff. Any extra calories are welcome.) I want him to be okay. Now.

No seizures, but......

So far, so good - no seizures since July 19. (That's 5 days. Yippee.) The increased amount of phenobarb so far seems to be controlling the seizures, but Milk's spending an awful lot of his daytime hours under the bed, and his rear leg "weakness" has doubled or tripled. He's fallen off just about everything he tried to jump up onto for the last day or so. If I pick him up to set him on the floor, his back legs just sort of collapse under him. Walking across soft surfaces , he's hardly able to manuever. Given the loss of muscle tissue when he was rescued and the consequent walking problems then that seem to resolve themselves with adequate nutrition, I wonder if he is having more severe problems now. Especially since his appetite has been so negatively affected by the medication. I reread the Patient Information sheet that comes with the phenobarbital, but it doesn't mention "rear leg weakness". (Probably because humans don't HAVE rear legs........) I am concerned. I searched for "rear leg weakness" on the Yahoo epifelines website - where I distinctly remember reading something about it, but couldn't find anything except a discussion a day or so ago in which four people agreed that their cats had it, too. I was spending so much time and energy trying to ensure that Milk didn't fall during a seizure, and now I'm worrying about the non-seizure times, too. This poor sweet little cat. It's not fair. I'm thinking that, even though Dr. G. said it was okay to give him the extra 1/2 tablet once a day, I'm going to divide it in two and give 1/4 tablet twice a day. Although, it doesn't make sense to me - if they don't have to worry about how long it's been before/after a shot when they do the bloodwork because the amount of phenobarb in the blood evens itself out, what difference does it make if the two daily doses are uneven?

#18, #19, #20, #21, #22. Enough, already.

Seizure #18 - 7/15/07, 5:14 AM. He was sleeping, I assume. I don't know how long it had been going on when it woke me up, but this seemed like a short one. He was just laying on his side, and once I wiped the foam off his face and neck, he put his head back down and just laid there. It crossed my mind to wonder if he was still breathing. He was, thank goodness. There had been foaming, jaw snapping, and some body jerking. It took him a while - probably nearly a minute - to get up and start pacing. He moved really fast when he did, and by the second round, when he'd returned to the kitchen, I had food ready for him. He immediately stopped to eat, and I went back to bed because I thought that would be the end of it. Not. Burble refused to let Milk alone. And Busy joined in. From 5:15 to a little after 7:00, they were thumping and racing and banging into things, up and down the steps, meowing, and carrying on. I was so afraid that it would trigger another seizure. I got to pet him a half dozen times when he paused in exhaustion, but he wouldn't sit on my lap, and Burble wouldn't stay away.

So much for my different manufacturer theory. He had both pills yesterday from the brand new/old manufacturer prescription that I picked up yesterday morning. Maybe they just haven't had time to start working? How much delusion can I churn up here? I'm thinking, since I have to go to the dentist tomorrow afternoon and maybe we could see if the phenobarb blood levels are deficient today while the pills are new - maybe it'd be worth taking him down there this afternoon. I supposed they'd have to hold the blood till tomorrow afternoon anyway.

Seizure #19, 7/15/07, 9:00 PM I didn't see this one, but Milk came into the kitchen meowing his seizure meow - frantic and urgent - and started looking for a bowl of something to eat. When I got close to him, his fur was soaked, all down his chest and up around the back of his head. When I went to the kitchen to fix their food, he was asleep in a Kitty Pi on the couch. I hate hate hate when he has to come to after a seizure and I'm not there to clean him up and feed him right away.

#20 7/ 17/07, 8:15 AM Mild seizure. He woke me because of the foaming sounds, but he was sitting, leaning against the back of the couch, and there was very little jerking - very little movement of any kind, actually. I wiped up the saliva, and he just sat there. I left the living room twice, and he still didn't change position. He did eventually jump down, but skipped the pacing and meowing. He found the remnants of last night's late night snack and tried to eat it, so I gave him a can of FF, which he ate. Then he and Burble did a lot of running around and he meowed quite a bit. Sometimes it seems odd that he is so much more coordinated and active directly after a seizure than he normally is on medication. I wonder if that's significant.

Took him to Dr. G. yesterday afternoon to have bloodwork done for phenobarb levels. The results will hopefully be in this afternoon, although I'm not sure what the possible responses will be. His levels were already high the last time, and he wasn't having seizures at all then. This really stinks.

Blood work results came back on 7/17 - phenobarbital level is 25. (Can't remember if there's a decimal there or not.) So he does, at the present moment, have slightly less of the drug circulating in his blood than he did when he was seizure free. However, if the blood level is supposed to be as close to 20 as possible, which is what I have read, is that a problem with increasing the dosage? Dr. G. wants to begin by increasing the dosage by another 1/2 tablet - that'd be around 24 mg one time a day, and 16 the second. Which comes to 40 mg total, I believe. I think the accepted dosage is .2 -.4 mg/kg of weight. He weighs almost exactly 10 pounds - down from 12 pounds the week before the seizures started, by the way. So, he'd be close to the maximum dosage. I don't know. I just want the multiple seizures a day/week to stop. Right now.

Seizure #21 - 7/19/07 at 8:00 AM. Now this was an odd one. He had been asleep on the footrest of my chair. There was a minimal amount of just about everything by the time I realized it was happening. Not a ton of foaming, hardly any jerking, but while I was wiping his face and chest, he made a horrible growling/moaning sort of howl - only the second time he's ever made noise during a seizure. And it seemed totally involuntary. He really didn't appear to be aware that he had done it, or that he'd even heard it, although the other three cats all came running to see what was going on. Once I had his face wiped off, everything just stopped. It had been only a matter of seconds. He just laid there, totally relaxed. There was none of the usual after-seizure activity - no pacing, no meowing, no eating. He seemed alert, though, more than usual. After a few minutes, he jumped down. And in about 15 minutes, I had his food ready, and he did want to eat. (He has so little appetite on phenobarb that about the only time he really eats enthusiastically is after a seizure.) He's still wandering around a half hour afterward in total silence, which is unusual.

It would appear - or my GUESS is - that the increased dosage is actually affecting both the length and severity of his seizure. I don't know how to explain that awful noise. Maybe it was coming from a different part of the brain or something. So maybe there's some hope that giving what seems like a LOT of phenobarb - especially when he's lost so much weight (2 pounds since March when the seizures began) will actually control them again. Hopefully.

Seizure #22: 7/19/07 2:15 PM or so. Enough already. Milk just came out of the bedroom, walking kind of tentatively. I'm starting to recognize when something's happened. Sure enough, his chest was soaked. And as soon as I mopped him up, he started his seizure meow and headed for the kitchen. He's very wobbly this time, though, and he threw up a tiny little bit after he ate - he's never had a hairball, but maybe.... Tiny little bit of pacing and meowing.