Annnnd, they're back :(.

[lisakathryn87]

So, it's been nearly a year, and - with the exception of two or three small focals - Bailey has been seizure-free! However, they are now back worse than ever.

I recently moved from Philly to Chicago, and while I am getting settled, my parents have been watching her. They have been following the "seizure bylaws" and have been doing a great job with her! But, now they are scared out of their minds as she has been clustering the past few days. They live in Southern Illinois, so smaller area...less experienced vets with extreme epileptics.

Anyways - her meds are: 62.4 mg Pheno 2x day and 2.3 mL 400mg/mL KBr 1x day. We have now raised her KBr to 2.8 mL, and she is taking 1 10 mg Diazepam 1x a day for the next few days. Her post-ictal is still lasting, though - over a day later. She is apparently super restless and can't sleep, and doesn't want to eat or drink. Not being there, I am more concerned than ever. They ran blood work, and her levels are fine. KBr is a little lower in the "okay" range, but still okay. The vet only wanted to raise her KBr to 2.6, but I insisted on more. Sad, but I'd rather her be stable and dopey than having clusters. I am scared to death this won't work and we will have to end up putting her to sleep. It makes me so sad that I'm not there with by baby girl when she needs me the most.

The vet brought up Zonisimide (sp) - does anyone have thoughts on this? She was on 1500 mg of Keppra a day before and it worked about a month, then the seizures were worse than ever (hence the addition of KBr). Weaning her off the Keppra was a pain, and I'd hate to do the entire process over with the Zonisimide if it's also more of a "honeymoon" drug. Does anyone whose dog clusters badly have any other ideas or solutions?

I can't afford ER trip after ER trip, and I'm so sad that it seems the KBr has stopped working. I really thought that that was our saving grace, and now all the hope that I had gotten back is starting to diminish again... .

Suggestions would be MUCH appreciated.

xo,
Lisa and Bailey

[Gentle Jacob's mom]

Hi Lisa,
I would say that Zonisamide might be a good option. Jake's isn't taking it but there are some epi dog owners here that have used it and it has worked really well for them.
I'm sorry to hear that Bailey is clustering again, especially when you're in the process of moving. It must be so scary being away from her when this is happening. We just went through a big upheaval here, and Jake did really well until we got moved back in and things settled down. I call it The Storm After The Calm. He's doing better but we're still on guard. This disease is so unpredictable. It can turn on a dime. I can't count how many times we thought we were onto something good with Jake just to have this stupid disease prove to us it still has the upper hand. Don't give up hope, it may be a matter of getting settled in and adding on the Zonisamide to get things back on track. I agree that it's better for them to be sleeping than seizing. I've always thought that after they've been through so much they deserve time to rest. I think it can be much harder on us watching them sleeping and being dopey. They can be very resilient. It amazes me how these dogs bounce back and then look at us like we're nuts for hovering over them so much.
Keep us posted.

Lynne

[MK's mom]

I'm wondering why your pup is getting KBr only once per day? My previous epi boy got it BID as I believe it's to be given.

My current epi boy is on zonisamide and (knock on wood) has been seizure free for 7.5 months. He clusters, too and the Pb alone wasn't keeping him in check, but the added zonisamide has so far. The zonisamide only helped my previous epi boy for about 4 months and he, too, started seizing worse than ever.. it was the KBr that helped with his seizures, but I'm convinced it also caused him the issues that led to his death. Every dog is different and you won't know what will work until you try it. I'd still look into KBr twice per say, that may be what he needs.

[Eley's Mom]

I don't have any experience with Zonisamide, but Eley just started on KBr about 6 weeks ago. She's gets 1ml once daily. She's on the liquid form, not the pill form. I know there's a difference, but I'm not sure how much of a difference other than the liquid form is easier to adjust.

I'm curious about what part of Southern Illinois your parents are located. I'm from the Peoria area originally (just moved to the west suburbs of Chicago about 2 years ago). When Eley was diagnosed I asked around and found out friends of mine from the area had dogs with epilepsy. Depending on where your parents are, I might be able to get vet recommendations if they're close enough.

[SpencerBhumi]

Hi Lisa,

I am sorry to hear about your predicament.

We gave Zoni a good try but it really did not make a lot of difference in Spencer so we carefully stopped it. There was no change after we stopped it either.

With the potassium bromide, it is best given twice daily (12 hourly) – please check this with your vet and/or get a second opinion. If they firmly recommend once daily please let us know what the new reasoning is.
I give Spencer (c22Kg) 800mg KBrom twice a day in tablet form.
Make sure you give Bailey’s KBrom with meals as it is very gut irritating.

Good luck with all of your changes.

Trevor & Spencer

Grateful for the good days, weeks (months)

[ShilohsMom]

Hi Lisa,

I'm sorry that Bailey has been having a rough go of it. It's never easy to deal with but with your move and not having her close by I'm sure that makes it all the more difficult.

Shiloh has been on Zonisamide since April. I really don't know if it's made a difference. His meds have been through so many adjustments the past 1 1/2 years I'm just not sure any more if any of them are really helping. Shiloh can do fairly well for a while then cluster. He had 16 seizures in September but none since and he's been on Prednisone for 2 weeks which can cause seizures and we've reduced his Keppra a bit.

The hard thing is that this disease is so unpredictable and what will work for one won't work for another. I too am curious to the once a day dosage on the KBr and wonder if giving it twice a day would be better for Bailey. Let us know how it goes.

[beaglemum]

Hi Lisa,

So sorry that you are going through this. To not be there, know that they are occurring and for your parents to have to deal with Bailey's post-ictal behavior is a tough one to swallow.

As for Zonisamide, (touch wood) we are one of the more successful ones who have tried it. Saxon was into clusters, every 7-10 weeks, then two or three days of clusters, gradually getting worse, nothing seemed to break them except an IV of diazapam and hospitalsation. When Zonisamide was eventually available in Australia, we put Saxon on it and withdrew him from Keppra (cold turkey, big mistake, but vet recommended). He was also on Potassium Bromide and Phenomav at the time. Once withdrawal/adjustment seizure behaviour settled down after stopping Keppra (and no hospitalisation was required), all the clusters seemed to reduce to one very mild seizure at the same previous frequency, with minimal post ictal. We kept the liquid Keppra and still give it to him for 24hours after a seizure and the combination has been working for the past two years. Somewhere in there we, very carefully, weaned him of Potassium Bromide as it never seemed to help and gastric related side effects and increasing ataxia was a worry. There was no drama. He is still on Phenomav though.

Having said that, over the past six months, the seizure frequency has reduced from every 7 - 10 weeks, sometimes longer, down to three weeks. However, the seizures remain short and mild avoiding clusters - which is a big win for us. ( I am trying not to hyperventilate at the thought that the Zonisamide may be losing its efficacy for us.)

The impression I have from the neurologist is that it has minimal side efffects, so haven't had to deal with increased sedation or ataxia, and if necessary there is room to move if we need to increase his dosage in the future. Plus it has a 15 hour half life, so I'm more relaxed if I have to shift his 12 hourly medication regime out by an hour on the rare occasion.

That is our experience of Zonisamide, perhaps it can help you.

I wish you all the best with dealing with Bailey's seizures and hope it settles down soon.

[cesullivan]

Sorry...Cali's neurologist said the KBro only needed to be given once a day as it has a very long half life, her regular vet said the same thing.

Jim's regular vet questioned that and has me giving his twice a day.