Toby's progress....

[Maysie]

Hi All!

Not sure that this is a success story, perhaps more a 'we are still here and managing ok' story

Havent been in for a while so thought i'd check in. To recap, my boy Toby (9yo greyhound) started on pheno in feb this year. At first we had good results and managed to get 7-8 weeks between seizures. Then the time between dropped back down to 4 weeks. We started to put the pheno up but this hasnt really helped. He is now seizing every 4-5 weeks on 120mg twice daily. His pheno levels seem good - 87 last check (i think its supposed to sit between 60-170??).

But after this last seizure, i was a bit worried as he really hit his head hard on a table as he went down. He seemed ok the following day, but i am afraid he looks a bit weaker and more clumsy. And perhaps acting a bit scatty sometimes. His hind legs lost form and have gotten a bit weak since we started on the pheno anyway. But i can deal with it as long as they dont get worse. I just worry that sometimes he seems a bit clumsier. I hope its just the back legs and not the brain cells going!

We are seeing the neurologist next week so i was wondering if we should talk about adding some kbr (?) into the mix? I just feel like if we keep upping the pheno and still only getting 4 weeks its not really helping - yet he still has the side effects to deal with. Or should we just be happy with 4 weeks? But that's where we were at before meds...

I suppose the seizures themselves are shorter with the pheno - the violent thrashing only lasts a minute. Then he sits very still and stares ahead unresponsive for around 4-5 minutes, drooling and with his facial and ear muscles slightly twitching. Does anyone else witness this period after the thrashing and paddling? I assume its recovery or post ictal and not part of the actual seizure.... after this, he jumps up and starts the toy-biting, wandering and sniffing for about 20-30 mins.

Anyway, if anyone has any advice on when to look at using kbr, id much appreciate it. I suppose we should be happy with a monthly cycle - but the more he seizes, the more i worry about possible brain damage and him hurting himself.

Oh, the other thing i wondered - is there big risks putting epi dogs under anaesthetic? Toby is 9 and a half years old and has some TERRIBLE teeth up the back. His age worries me but id rather do it now than wait til he's even older. He at least needs a clean, if not extractions. But i am really worried about how he will go under anaesthetic and whether it has the potential to trigger a seizure. I suppose if it does he is in the best possible place ie. vets can manage it. And if i leave the teeth he could get really ill down the track...
He also has pannus, so for us its all about minimising his ailments theses days!

Anyway, thanks for listening/reading!
Hope you and your furry friends are all doing ok

Maysie x

[Chris]

Please give yourself credit for being "still here and managing ok." You are giving Toby the best care you can.

I would discuss KBR with your neuro and then make the best, informed decision you can. Perhaps Toby would respond better to KBR and his pheno could be lessened. But who knows? There are no guarantees. I'd always been told that one seizure per month was considered acceptable---easy to say when it's not your dog, right? Our Trinity started KBR 3-4 months after starting pheno. However, her seizures had worsened and she had begun to have clusters.

We did not see twitching after the thrashing had stopped. In our case, if there was any further twitching, it was due to continuing seizure activity. Trinity's post-ictal phase consisted of hours of pacing before she would finally be able to rest.

The one piece of encouraging information I can offer you is our experience regarding surgery and general anesthesia (sp?). Trinity had to have a vulvaplasty to address chronic UTIs. I was worried sick about seizures and a disruption of the good seizure-control that we had at the time. However, there were no problems whatsoever. While hospitalized, she remained in the critical care unit where there was always observation. It cost more, but was worth it.

[Apache]

Hi, Maysie,

Sorry to hear that Toby's seizing has become a little more frequent of late. Like you, we had initial success with the Pheno. However, when they upped Apache's dosage, he did in fact extend from having one/two seizures per month, to a little over two months. They have once again increased his dosage, and only time will tell if it does any good in extending his seizure times. In our last visit, which was just recently, the vet mentioned having Keppra added to his mix if in fact the higher dosage of Pheno doesn't do much this time around. This worries me, especially long term,...as is the case with his high dosages of Pheno.

As far as the hind end weakness, that too has become the norm with Apache. He is rather unstable at times whenever he wants to relieve himself, so he often urinates in a four legged squat position. Some mornings it's too much to ask of him to lift that one rear leg. Tell me, is Toby willing to exercise?

Toby's seizures sound very much like Apache's. His seizures are not too long, and yes, afterward he stares a lot and is highly unresponsive. Then comes the pacing. We have not noticed any facial twitching immediately after his seizure, though.

Please let us know how your visit to the neuro goes. I'm very interested to hear what they have to say, especially knowing that Toby is only on Pheno at the moment.

Good luck!

Brian

[Maysie]

Thanks Chris & Brian,

I will have a chat to our neuro friday - but i take the point about 1 monthly seizure is considered good control i remember when we talked about pheno initially, the neuro said that as a basic rule of thumb, it doesnt do much better than 1 per month. But i was still optimistic that we would do a bit better than that. I am of course thankful that it is not more than one a month - as i know how hard it must be for those who are dealing with more frequent seizures and clusters.

We saw the vet saturday about Toby's teeth and they have booked him for next week. Thanks for you reassurance - the vet also explained that they give anaesthetics to epi dogs all the time and its fine - she was more worried about his age. However, as she hadnt examined him before (my sister is a vet nurse so i took him to her new practice) she picked up on some things my usual vet didnt. She was actually a bit concerned about the weakness in his back legs and thought it seemed too much to be linked to the pheno. She did that test where they fold the back foot forward and wait for their reflex to kick the foot back to a standing position... Toby was really bad at this I have always just assumed that because the legs went weak at the same time we started pheno, their continued weakness was a side effect. But as she felt up and down his spine, he was very sensitive. He also has a bit of muscle wastage on his hind legs which i again put down to side effects of pheno. But she has suggested we do xrays while he's under for his teeth just to see if there are any other probs. Could just be arthritic. She has told me to ask the neuro too so we will see what he thinks too...

The other thing that is slightly worrying me which i will talk to neuro about is the 5 minute period after the thrashing where he is still and staring straight ahead unresponsive. Up until this last one i didnt really notice facial/ear twitching. But now im wondering if the facial twitching could be continued seizure activity. This scares me because it means the seizure has actually gone for 6 minutes! I will have a chat to the neuro about this too...

I find it really helpful to compare notes with you all on this forum, because unlike the vets and neuros, we all actually SEE the seizures and deal with them regularly. Not to take any respect away from the experts - but its just interesting and comforting to relate to each others experiences with types of seizures, how our dogs behave during and recovery etc..

Anyway, will keep you all posted on the neuro's thoughts and how we get on.

Thanks!

Cheers,
Maysie

[Gentle Jacob's mom]

Hi Maysie,
I'm sorry to hear that Toby isn't going as long between seizures, this disease can be so frustrating. Jake had major surgery back in June and came through it really well. Better than anyone thought he would. He ate part of a corn cob that our cat knocked from the counter and a small piece was lodged in his intestine. I was a mess, but I do remember the surgeon telling us that they were well equipped to handle any risk putting him under, and that it is extremely rare that anything goes wrong. Jake was very sick (throwing up) which added to the problem and he came through perfectly. We did notice a big improvement post op with his seizures, and we're working with our vet looking into the anti inflammatory connection. I will let everyone know when we find out anything. As far as Pb, when we first started it I wasn't even sure it was doing anything for Jake. At that point he was seizing every 2 weeks, but then a year or so later he started clustering. We decided to add Keppra instead of Kbr because of the side effects. Keppra works for some and not for others, and a study from NC State recently said that there wasn't a big difference between dogs put on it and the ones put on placebo. With Jake though it has worked really well. The Pb works much better for him now, and most of all it stopped the clusters. His seizures are now about once every 3-4 weeks, and last about 20-30 seconds. He also goes into the dazed state right after but only for about a minute. There is a term for that, but I've forgotten what it is. Then he goes into a very mild focal seizure for a few minutes, and after that he wanders around for about 15-20 minutes, then lays down and goes to sleep. We started out a lot worse than that because his first seizure was very violent and lasted almost 7 minutes. I know this is such a scary and frustrating thing to go through with Toby, but you're doing everything possible for him, most of all he knows you love him. That counts for so much!
Good Luck with the neuro.
Let us know how you're doing.

Linda

[Helena]

Hello Maizie,

i have only just come across this web site.
my dog Jake is nearly 4 years old, he has been an epileptic since he was 2. except for his first couple of fits he has had clusters. Unfortunately he isn't doing very well. He has seen a neurologist and there is nothing on his brain.
Jake is on a cocktail of drugs at the moment because he started fitting on the 1st Nov 2010 and they couldn't be broke. Every time he was brought round from sedation he went straight into another one. This carried on for three days.
Jake has been on pbarbs from the beginning, at the moment he had 90mg a day, he also has Keppra 750mg a day and they have added kbr. Hopefully this will help him as he is my baby.
Jake has a bad reaction to kbr as he has been on it before, hopefully this time it will be better.
I know I sound low, but Jake means the world to my husband and myself and things don't look bright for him.
Hopefully Toby will have better luck.

best wishes

Helena

[MK's mom]

MK used to get focal twitching towards the end of his life, they're called focal seizures and it means there's still abnormal electrical activity going on in the brain. My neuro said had MK not been on meds, those focals (or partials) would be grand mal seizures. As for him laying quietly and staring, my guess is that he's exhausted from the seizure or just discombobulated and needs to lay there trying to gather himself, but I could be wrong. MK used to pace and crash into things after a seizure, so I usually had to crate him afterwards. The seizures seem to change all the time, it's hard to get them down pat because they pull a switcheroonie on us to keep us on our toes!!!

Vivian

[MK's mom]

Welcome Helena, sorry you had to join us.

Don't apologize for loving your boy, we all love our dogs and that's why we come here trying to find something that will help them.

What adverse effects are you seeing from the KBr? The bromide was very hard on my boy, too, but unfortunately it seemed to be the drug that gave him the best control.

Vivian

[Helena]

Hello Vivian

When Jake was on the kbr before (end of last year, beginning of this year) he started to act very odd. He couldn't keep his balance on the snow and ice, hated for us to touch his head. After Christmas he couldn't stand, always falling, even when he shook himself, we thought he'd had a stroke. We took him back to the vet thinking the worse. Thankfully it wasn't a stroke but it was just as bad. His brain swelled and it was pressing onto his skull.

Because of the severity of his last episode we agreed to try again but at a lower dose. At the moment it is still making him wobbly, tired and diarrhea. He wants to go to the toilet all of the time, even at night. Its like having a baby, but at the end of the day if it works and he gets back to himself I don't care, he deserves a chance. The neurologist did say that having large clusters every three weeks is not good especially when they can't break them.

Regards

Helena

[MK's mom]

His brain swelled from the KBr???? I've never heard of this before, is the neurologist sure the meds caused this? has the boy had an MRI to be sure nothing else is going on in his head? What kind of dog do you have? I know there's a condition in King Charles Spaniels (primarily) where the heads were bred to be smaller and the skulls cannot accomodate the size of the brain, I think it's called Chiari syndrome (or something like that). If the KBr does this to him, can you try one of the other anticonvulsants, like zonisamide?

Vivian

[Helena]

Hi, Vivian,
Yes Jake's brain swelled because of the kbr in his notes it said that he had an edema. Jake is a Patterdale Terrier. He has been to a neurologist and has had an MRI, thankfully that and the spinal tap came back ok. I've never heard of zonisamide, there was another drug that the neurologist did mention (the name fails me at the moment), but she wants to retry the kbr but at a lower dose.
How is your dog doing?
regards
Helena

[MK's mom]

My boy passed away last year.

[Helena]

Hello Vivian,

I'm so so sorry, I didn't realize that he passed away.
I'm keeping everything crossed for my Jake, who at the moment has gone to bed with his dad. The sun shines through the bedroom window and is quite warm, he is a true sun worshiper, not good when you're all black as he warms up very quickly.

best wishes

Helena