What a long strange trip it’s been! At first I was going to do this as a newsletter, then as a novel. Stack on top of that all sorts of events, tid bits and adventures I haven’t kept you up to date with, and, well, I give up. You get the short version so I can try to play catch up on all the other events.
While Vito’s seizures were disturbing, his post ictal states were even scarier. Where the seizures maintained at less than a minute, 4 times within 24 hours, then they went away, the post ictals got progressively worse. Vito would be so agitated he was practically scaling the walls. He could never get enough to eat, often times being caught trying to munch on electrical chords, dog beds, sticks, stones, and the list goes on. His constant crying was the worst. Until he collapsed from exhaustion, some time after the 4th seizure, he was non-stop. But we were told we were over reacting. The seizure, and not the post ictal, was the more serious condition. Just confine Vito to a crate if he won’t calm down. None of the experts were there to see what Vito was like in these episodes. Be rest assured if it were their dog going through the torture Vito did, they would DO something. But we were given no options other than to lock Vito up – not going to happen.
In January, I gathered up the Vito Book containing all narratives and lab reports, the ultrasounds, his diet, etc. etc. and sought the opinion from a second internal specialist. The only way to stop the post ictals was to stop the seizures, and to do that, we had to medicate. I caved.
Because of Vito’s idiopathic elevated bile acids, phenobarbitol was not an option, so we were started on KBr. The KBr side effects were identical to Vito in a post ictal state – highly agitated, voraciously hungry, constantly vocal, and his eyes looked worse than they did in a seizure episode, probably because his stomach was always upset. He felt crappy. We felt helpless.
We were told to stay the course, that the side effects would dissipate. For weeks Vito couldn’t sleep through the night, and neither could I. Most disturbing, the seizures, previously no closer than 30 days apart, got closer. Even more disturbing, his between seizures, usually normal liver profile values were starting to skew.
Eventually, we just took Vito off the drug. Our bad, we didn’t wean him, we just stopped it. Within a week Vito was Vito again, and within another week, he had another seizure episode, and shortly after, yet another one.
A new vet, yadda yadda, and we were told the problem with the KBr is that it was 4 times the dosage Vito should have been getting. With great reluctance on our part, KBr was re-started, but at 1/3 the dose, to be given until the Br reached therapeutic levels in his blood, then we would reduce it. The side effects returned, though not as severe as before, serious enough to mean we only woke up once or twice a night rather than many times, and Vito still felt crappy. The seizures continued – by now, Vito having had more in a few months than he had in the previous year – and eventually Keppra was added as a back up until the Br reached therapeutic levels.
2 days after blood was drawn to confirm the sought after therapeutic Br level was reached, and while Vito was simultaneously taking Keppra, he had his first ever longer than a minute seizures, and first ever more than 4 in a 24 hour period. When we got 2 weeks away from this episode, a liver panel was run and every parameter was seriously elevated.
Now, let me take you back to pre-medicated Vito: Seizures never reached a minute, there were never more than 4 in a 24 hour period, and they were never, with the exception of 1 event in 2014, less than 30 days apart, more often than not, longer – we made it 108 days once. Immediately after a seizure episode, his liver values were elevated, but within a week, they would return to normal.
Medicated Vito has only gone 30 days between seizures once since being medicated, he was in a permanent post ictal state, and his liver was taking a hit.
I did some research on my own and found that an alternative to KBr for dogs who experience side effects is NaBr. The vet had never heard of it. With more than a little begging, Vito was converted to NaBr. Within 2 weeks, the side effects, except for the hunger issues, went away. Which brings us to April.
Remember that few months when I fell off the map? Now you know why. It was all about Vito.
Right now, Vito still takes both NaBr and Keppra. No medication prevents all seizures, and the intention all along was to use Keppra to calm at the first seizure when it occurs. In order for that to happen, he has to be off regular Keppra. Our instructions were that if we ever reached 30 days without a seizure, to stop giving Keppra and see what happens. We did, and 22 hours later, the seizure happened. It was only 1, but still. Since it was possible Vito was ‘due’ for a seizure, medicated or not, after several days, the Keppra was stopped again. We made it 18 hours that time. Again it was just a single seizure. That was June 8.
So, Keppra is confirmed as controlling(?) Vito’s seizures.
We have no clue whether or not the NaBr is doing anything. If we can go another 30 days, actually 45, we will try weaning (as opposed to rapid stop) of the NaBr. Keppra is forever no matter what, and if we can maintain him on just that, all the better.
That, believe it or not, was the short version. I was going to tell you about life with Keppra Vito, but by now you’re probably tired of reading, so I’ll save it for a future post.
In the end, I wish we never started medicating Vito. It made his seizures worse and his life between them miserable. I haven’t run a recent liver profile, but other than those weird bile acids, his liver was fine before. I wish I could have found a vet who would listen to what I was saying rather than assume I was over reacting. Sedation during a post ictal could have solved the problem and it would have had less long-term side effects. But I’m just a crazy dog lady. What do I know.
If anyone wants to start a GoFundMe for the purposes of paying my tuition at the new vet school that opened in Phoenix, I’d be all over it 🙂 Just saying…