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serenamlambe- Questions on Seizure meds

June 3rd, 2012, 05:51 PM
Hi Serena :)

Nookie had his first cluster seizure at 2:29 this morning. There are a couple of things really wrong with this. First, he's never had a seizure while sleeping, and second, never had a cluster. He had 1 seizure once at just before 5 am, but he was getting a drink of water at the time. I'm hoping you can help me. I have googled, and read and ugh... got so confused. I know you have Keely on different meds now, and I would love to know which ones she's currently on, and have they stopped/decreased the frequency/severity and has she had any side effects from them?

My worry is that his seizures are progressing. It's been a little over 7 weeks since his last seizure, but each one seems to be gaining in severity. And 2, back to back, just freaked both Shaun and me out, bad. The Valium did eventually pull him out of it, but he's so exhausted today... all he's done is sleep. I know the more seizures they have, the more they will have due to "Kindling", so I think we're at a point that we need to put him on something. When he was on Pheno, he had quite a bit of liver damage just within the first 2-3 weeks (from what I remember... could have been a bit longer) and he's just SO sensitive to everything. If you see this, and can respond, I would greatly appreciate it!

Thanks :)


June 4th, 2012, 08:26 PM
No advice, Robyn, but I'm just so sorry to hear about Nookie. :grouphug: Have you tried PMing Serena? She may have her email set up to receive notifications of PMs :fingerscr

June 5th, 2012, 09:41 AM
Thank you, Hazel :)
I'll PM her. I didn't even think about that lol. Her little Keely and Nookie have always been quite similar in seizure activity and from around the same age, which is quite unusual for dogs that young. I'm hoping that whatever Keely is on may help Nookie.

June 5th, 2012, 11:11 AM
I hope so, too!!! :pray:

June 5th, 2012, 11:20 AM
That's rotten luck, Robyn, poor Nookie. I hope you find treatment that suits him.

June 5th, 2012, 01:15 PM
Sorry to hear about Nookie. I totally understand the freaking out bit, that's what happened to Theo back in April. Back to back seizure, so so scary.
My vet does not want to put Theo on meds until they are closer together.
However, if the time comes he did not want to start with Pheno, as it can cause liver damage as you know. He did suggest Potassium Bromide, he said he has a few patients on it and it has worked really really well. Its not toxic like the Pheno. Hope Nookie is feeling better.

June 28th, 2012, 10:25 AM
Thanks for the replys all :)

I'm bumping this thread in hopes that Serena may be lurking and will see it.
Nookie had another severe seizure at 3 am this morning. Technically, this one would be classified as Status. It lasted almost 10 minutes and was really odd compared to most of them he's had. The valium did pull him out of it, thank God :pray:. The last one was a cluster, but this one, he had 2 back to back with no period of conciousness between them. Dr. Marsden is out of town for 2 weeks and I'm very worried about our sweet boy. Each one seems to be getting much worse and lasting longer. And the fact that they have shifted from daytime to the middle of the night really has me freaked out. Sorry for going on, I'm just so worried about the monster :cry: :(

June 28th, 2012, 07:58 PM
Thanks for the replys all :)

I'm bumping this thread in hopes that Serena may be lurking and will see it.
Nookie had another severe seizure at 3 am this morning. Technically, this one would be classified as Status. It lasted almost 10 minutes and was really odd compared to most of them he's had. The valium did pull him out of it, thank God :pray:. The last one was a cluster, but this one, he had 2 back to back with no period of conciousness between them. Dr. Marsden is out of town for 2 weeks and I'm very worried about our sweet boy. Each one seems to be getting much worse and lasting longer. And the fact that they have shifted from daytime to the middle of the night really has me freaked out. Sorry for going on, I'm just so worried about the monster :cry: :(

Pleases do not worry about asking for support , I would be very worried if my dog had seizures . I am sad to hear your dog had another one , does your vet have a vet covering for him /her? I would call the vet up and see if they left a number on their voice mail to call if your pet has an emergency.

June 28th, 2012, 09:24 PM
So sorry to hear Nookie had another seizure. I really know how you feel its terrible to go through. Theo's last one was April 9th, but since December 20th, till today, he has only had the two. (and they were back to back but I think he was conscious between the two so maybe was cluster, I don't know anymore) I hate wondering if and when there will be another. You had asked about seizure meds and I mentioned Potassium Bromide, did you have a chance to do some research on it or ask your vet about it? Not toxic like the pheno. I am glad the Valium worked and brought him out but sad he has had another one. Hope your sweet Nookie is feeling better this evening and you as well. Robyn, have you tried acupuncture with Nookie? I have heard some great success stories, I know that it might not stop them, but I do know that it can shorten the length of the seizures and how often he has them. {{{hugs}}}

July 5th, 2012, 03:53 PM
Robyn! I am so sorry I didn't see this sooner. I'm at the dentist now and have logged in on my Blackberry for the first time in months. I'll write you a real response this evening, but there is another thread where I detailed all of Keely's meds. She's on zonisamide now, which is not available in Canada but we import from the States. It's been a lifesaver with only one seizure since she started it at the beginning of December. This is amazing considering they were as frequent as one a week before. The zonisamide has no liver effects as far as my vet has advised, though the phenobarb is catching up on the poor thing now and she's had some elevated liver values. We're reducing the pheno now and no breakthrough seizures thus far. I would recommend talking to your vet about the Zonisamide. It's a new-ish drug and new for dogs... But our specialist in St. Hyacinth recommended it after we were unsuccessful with the phenobarb alone, and with adding the Keppra and the Potassium Bromide. Will write more later! Please let me know if you have any specific questions.

July 5th, 2012, 04:00 PM
Robyn, I just read your post again and though I would mention this while I have the chance. What is your valium protocol? Keely always had cluster seizures, right from the very beginning. Her first day of seizures was four! And she's had up to three on other days. To beat the cycle, our specialist recommended one dose immediately during the seizure, then another dose 20 mins and 40 mins later. Since we've started doing this, we haven't had any clusters. We use the rectal valium. Now, I'm sure Nookie's dose would be a lot more that Keely's, but this might be an idea to ask about. Apparently the valium is metabolized (?) very quickly and it doesn't stay in the bloodstream. I think the extra doses help the system to stay calm. Anyways, it's worth a question to the vet.

July 5th, 2012, 06:13 PM
Hey again. I found my old post about Keely's meds, so I'm going to paste it here and then just update it. Sorry if this is repetitive.

The first medication that Keely was given was phenobarbital - the "go to" drug for epilepsy/seizures in dogs. It took some time to get her to the therapeutic level and we had to go to a specialist to get the correct information. The therapeutic levels given by the drug company are not always what a neurologist would recommend. Our specialist recommends 100 umol/L as the minimum.

Keely is currently at 145. She was even higher at 160 before, but we're weaning her down now due to elevated liver values. We never did have any luck controlling the seizures with the phenobarb on its own. I'm hoping that now we're going to be able to take her off it completely. The only issue with that is that most of the other drugs are meant to be supplements to the phenobarbital.

The first addition we tried was potassium bromide. This option is supposed to be much easier on the liver and we were really anxious to have her on this one. Some vets do use it by itself as the only preventative for seizures, though most use it in conjunction with the phenobarb for dogs with refractory (hard to control) seizures. For Keely, it had no noticeable benefits and it made her extremely stomach-sick, to the point where she was vomiting almost every day. The vet took her off of it very quickly... maybe a month.

The next thing we tried was adding levetiracetam (Keppra) with the phenobarbital. Like potassium bromide, this one is meant to accompany the phenobarb for dogs with refractory seizures. She was on this one for about four months or so. We enjoyed a honeymoon period of two months seizure free in the beginning, then it seemed to make things exponentially worse. She was having seizures pretty much every week after that, which was much more frequently than before she was on the levetiracetam. We decided to abandon this medication as well.

Now Keely is on another drug called zonisamide with the phenobarbital. She's doing extremely well on it and there are little side effects... the only thing that we have noticed is that she lost a lot of hair on her underside. As hair loss is a human side effect of the drug, the vet assumed that this was the case with Keely as well. She's regrown a lot of this fur now though.

She has only had one seizure in the past seven months (and that one was induced by her rabies vaccine, so I barely count it) which is the best she has ever done. There is a study about the use of zonisamide in dogs that I read about... it had a fairly small experimental group, but about 58% of the dogs reacted favorably to the medication. And, for those who did, they seen an average 81% reduction in seizures. It gives me the impression that this is an "all or none" type of medication. It has been working for Keely amazingly, so I'm glad of that at least.

I really wish you luck if you do try it. It's a newer drug for use in pets. We've just moved home to Newfoundland and have had an initial visit with a vet here that was recommended to us by our old one. She had never even heard of it before. Our vet in Ottawa got the suggestion from the neurologist at St. Hyacinth though, so I think it's coming from a good source. We get the drug from a pharmacy in the United States, Diamondback Drugs. It's in AZ. (MODERATOR - Please delete this info if it's not allowed). Our vet faxes the prescription and we get a copy of it as well. We need the copy to clear customs. Fedex does this for us, but we have to fax or email the prescription and they clear it through customs for around $10. I'm trying to remember the price for the zonisamide, but it's just escaping me at the moment. I think it's roughly $150 for Keely's 180 40mg capsules. That will last us three months. Obviously Nookie is a lot bigger than Keely and would probably need a higher dose.

That's all the info I have about the meds for now. Please ask me any questions you have and I'll try to check this periodically over the next couple of days. Oh, one other tip. Along with the valium, we use an ice pack on Keely's back to stop the seizures. I was given this tip on another canine epilepsy forum and it really works. Because it takes two of us to administer the rectal valium, we often use the ice pack to stop the seizure while the other person rushes home to give the valium. It's been a great tip. Maybe that could help Nookie if he gets into another long seizure situation, as well.

Okay, talk soon! Hope this doesn't confuse you too much! Good luck :) Kisses for Nookie and Montana! They have the best parents!

July 6th, 2012, 10:11 PM
Hi Serena!! Thanks for responding, and no need to apologize!!! I'm so happy to see sweet Keely has been without a seizure since Dec. That is fantastic!!! I have an appt. with Dr. Marsden Tuesday, so I'm going to ask him about the Zonisamide. I wouldn't mind trying it just on it's own. The Pheno is really hard on Nookie. He's just so sensitive to everything, so I want to use that again only as a last resort. He's done great on the herbs until the last couple of months. His last seizure would be considered SE. It lasted right around 10 minutes (the actual "ictal" phase) and was terrifying. I really believe the Valium is what pulled him out. If we didn't have that, we may have lost him that night. I didn't know Keely always clustered! I knew she did a couple of times, but not the "norm". That night Nookie did was the first time.

As for the Valium protocol, we give him 2 vials, rectally, while he's seizuring. We've never had to use any additional. I did talk to Dr. Marsden and he said if we feel he needs it, we can give him a second dose after 20-30 minutes. We also have some 5 MG tablets we can give if he starts clustering as a norm (I'm :pray:'ing the last couple were just freak events). The pattern changing from daytime seizures to the middle of the night freaked me out. Though I think it's better for our sweet boy because he wouldn't have that fear that hits before the seizure if he's asleep when it happens. But it sure is a rude (and scary!) awakening for us. Thank you again for responding, you have no idea how much I appreciate it HUGE :2huggers: to you!! And please give Connor and Keely hugs from Nookie, Montana and myself :lovestruck: :cloud9:

I'll let you know what Dr. Marsden says!!

August 3rd, 2012, 10:41 AM
Any update, Robyn? Did you ask your vet about the Zonisamide?

September 15th, 2012, 03:44 PM
Sorry it took so long to respond to this! I did speak with Dr. Marsden about a month ago. He said he was going to do some research on it. We saw him yesterday and he said he had actually met with Dr. Jean Dodds and they went over Nookies history. Due to his auto-immune disorders and a tendency towards Hemolytic Anemia, she recommends we avoid Zonismide as it is in the sulfa drug class, and those are known for bringing on IMHA as well as possibly allowing all the auto-immune issues/symptoms to come flooding back (Dr. Marsden has most of it pretty well under control now). Which also explains why he doesn't use any sulfa-type antibiotics for Nookies bladder issues. He asked that we give him a few months to try and get them under control again (assuming the seizures are not due to a brain tumor), and if we can't manage it with the chinese herbs, we will try potassium bromide. So we agreed. He's given us our beautiful boy for 2 years longer than we should have had him, so he definitely has our trust. I'll let you know how things go, and thank you again for taking the time to repost all this info for me. I really do appreciate it :grouphug:

How is Keely doing now? Have you weened her off the pheno yet? Give both her and Connor hugs for me :)