Nikolai had another seizure this morning around 7:15. I was really confident that he wasn't going to have one for awhile because we had just made it over the 6 week mark and everything was looking great. This one seemed a lot different to, which was scary in itself. He got sick before, and there seemed to be a lot less shaking, but more stiff and like he just couldn't come out it. His eyes weren't even really rolled back this time so it was awful to watch. So I'm praying it does not happen again today.

I spoke to my vet this morning and she said we can put him on medicine but I'm just not ready to do that yet, where we are on number two and he did pass the mark that she did not want to medicate him for. She said that she does not need to see him today unless he has another, which doesn't comfort me to much but I really do trust her, and she loves Nikolai so I will believe her.

There is a neurology specialist in Scarborough where we would eventually have to send him if we wanted more answers, that she is getting us in for in the next two weeks. They are actually currently doing research on dogs with epilepsy so they are going to do complete work  up on him for free because he fits the description of what they are looking for. I said that it is something that we would be interested in as long as there are no experimental drugs involved. She said they would just do there normal blood work, a MRI and everything else that they would do if he was sent there for that reason at another time. I am going to ask more questions when they call to schedule my appointment but it sounds pretty good for us. Plus if it helps other dogs in the long run and we get answers or at least peace of mind, then I'm all for it. I'm nervous that he will have to be put to sleep for all of this but where they are specialist this is where you would want it to happen.

If you were doing this with your dog (especially Meredith if you are on today) would it be something that you would do, or do you see any kind of downside? I'm open to opinions and suggestions. I don't want me just wanting answers to cloud what is best for us.

Here is the website for the vet: http://www.maineveterinaryreferralcenter.com/neurologyneurosurgery.htm

Erica

Really sorry to hear this news.

When our little red starting having seizures, her neurologist suggested that the MRI was not really needed unless we had several thousand that we had nothing else to do with. After reviewing Lyra's history, she was pretty sure that the MRI would not show any abnormalities, and that we would have the same diagnosis: that the cause of her seizures was epilepsy. Understand that the diagnosis of epilepsy comes when there is no other cause for seizures. Lyra was just a year old, so a tumor was unlikely.  

Still, if we had had the chance to have the MRI done without having to bear the cost, I think we would have had it done.

Time appears to have proven her neurologist correct. We have good spells, then bad spells, and nights spent on the floor holding her and hoping that that was the last seizure of the cluster. Several times the medications she is on no longer work, so then it is a new medication or a higher dosage, and it is back to good spells.

Good luck with Nikolai!

Kevin

Thanks, I am hoping that they call today, and as long as it isn't like a lifetime of research with this neurologist I think we will do it. At the very least we will have answers, and will know that it isn't something little that we over looked caused them. I'm just nervous for him to be put to sleep, but I just want to get it over with and see what they have to say. I was just finally able to start sleeping again and not wake up at the sound of him moving every time but then he had another one. I am glad though that if he is going to have them he has them at night or early morning because then at least we are home, and he isn't alone/scared.

Oh no. Keeping you guys in my thoughts.

Why are you nervous about her being put under for testing? Has there been bad reactions in the past? I know with my lab I let me vet know he didn't handle his teeth cleaning well when he was about 9 or 10. So they used a different sedative and he bounced right back to normal pretty quick at 12 years old. I would just let them know you are nervous about that and they should have a good option for you.

I would talk to your current vet and ask them about the validity of the research. I know the university by us does do research trials and are very specific about those accepted into their programs. My vet and the specialist in my area highly recommended the university.

He has reacted fine to the anesthesia in the past, but he hadn't had his seizures back then, and the fact that we would just be so close to him having one makes me a little uneasy.

My current vet was the one who told me about the research and she thinks that we should do it. She has to send in the referral form for us to even get in. She said that Nikolai is the perfect candidate (not sure exactly why) but that if they are willing to do it for free for us now that we mind as well not wait a couple more months when its going to cost us.

I just have a lot of questions about the research and want them to call. But after looking over the website, I do feel a lot more confident with them. Both of the neurologists have a lot of experience.

Can anyone think of any questions that I should ask before saying yes or no to them?

I can't look at the website, my work internet is blocking it for some reason, so sorry if this is covered, but I would ask:

Who is paying for the study?

What is the purpose of the study?

Is there an obligation to continue should I decide I want to stop participation?

Is there a drug being tested? What drug, what manufacturer?

What is the long term follow up?

Will you discuss treatment options with me?

I think it's probably a pretty safe study, just make sure you know what the expectations are and it might help to know the goals of the study. Many animal studies are paid for by pharmaceutical companies hoping to use the research to begin to produce drugs for humans (which I think is actually a good thing). My mom worked as a med tech at Colorado State Vet Hospital and she told me they did a lot of studies there with the ultimate goal of having an impact not only on vet medicine, but also for humans. I wouldn't worry about putting Nikolai under anesthesia, I know Meredith had Shadow spayed pretty soon after her seizures were under control. I'm sure they have a specific protocol in mind for dogs with these issues. On a side note, it's great that your vet is up on research going on and thought of you when he/she came across something that could be helpful.

I am so lucky to have the vet that we have now. Honestly leaving her when/if we move is going to be the hardest part, which is kind of crazy to say, but I just trust her so much and she is the most caring vet that I have ever come across. If we move to Vermont, I honestly think we will schedule some appointments when I come home to visit my parents just because she is so knowledgeable and great.

I will ask those questions for sure, thank you! The only one that I have asked so far is the drugs being tested, because I just won't do that. I don't like the risk that is involved in those, and I know that they will go over treatment options with me.

The good thing is though, if I don't like their answers at least pet insurance will cover all those costs anyway if we choose to continue this root.

Oh no, Erica, I'm so sorry The two times that Kody has had a seizure was around that time as well. Not a good way to wake up! Do you have any Valium on hand? I have a few just in case (fingers crossed) that it ever does happen again. I'm with you on the giving him the meds, I actually wrote to Meredith about it the other day. I think I might take Kody to the neurologist as well. This sucks!

Sorry to hear this, and unfortunately I know what it is like Yukon started having seizures last November. It started out one night before bed, and he had one again the next morning. I took him to the vet, and they said if he has a third one within the next few days to put him on pheno. That same night he had his third one so I filled the prescription the next morning.

We have been lucky that he has not had any since then, so it has been almost 4 months now seizure free. They did the blood work, and nothing out of the ordinary came back, so they diagnosed him with epilepsy. My vet never suggested the neurology specialist, so that is something I will need to read up on.

Good luck though, and hopefully Nikolai will be seizure free

Jason, she suggested it because everything as far as blood work came back normal, so she said they have a lot more extensive work ups that could quite possibly give us answers and she thought this would be a great opportunity for us to take advantage of.

Melissa, I don't have any Valium. I'm hoping to get into the neurologist asap so we can get on some what of a treatment plan. Like if this happens, then we will need to do this kind of thing. Where they are 6 weeks apart (if this is going to be the trend), we are going to start acupuncture at our holistic vet and see if we can't stretch that out. I think I asked you this last time, but how far apart were Kody's?

Kody's bloodwork came back perfect also and my vet didn't suggest the neurologist either, but I figure it can't hurt. Both of his were a month apart and both times happened because of puking up a sock. The first time he puked up the sock and it happened within seconds after. The 2nd time he started heaving and had the seizure (no sock came out at that point). I immediately gave him the valium and took him to the vet. That night, he threw up the sock (which we didn't know he had eaten, but I was suspicious of it). He didn't have a seizure (thank goodness) b/c he was on the valium. I have the Pheno at home, if he (god forbid) has another I'm putting him on it, as much as I don't want to.

Yeah, I'm in the same boat if he has another one then it will be time to medicate no matter how much I wish I didn't have to!

Nikolai used to be a sock eater too, luckily it was something that he grew out of cause those are like the hardest things to keep away from them!

Grr, I'm sorry I missed this on Saturday. I had a busy day, and so I really wasn't on much.

If they are covering the cost of that whole work up to be a part of the study, I'd say go for it. I know with Shadow I wanted as much information as I could possibly get, but especially since we pretty much knew from the beginning hers wasn't a simple idiopathic epilepsy. The only real downside on this is the MRI, and that's only because not all epi dogs handle anesthesia very well. That being said, it's being done by a neurologist and I'm sure they have the equipment on hand for proper management.

As far as the meds go, at the very least I would have valium on hand just in case he would start clustering. Valium will help break that, and it also relaxes them to help with the post-ictal phase. I'd also seriously considering adding the meds at this point. Every time they seize, it does affect the brain and makes it easier to cross that seizure threshold the next time. See about starting him on a low dose of phenobarb, that's what we did. We've been able to keep Shadow seizure free (until yesterday) with a low dose and keeping her in the low end of the therapeutic range for the phenobarb levels. I messed up yesterday though, overslept, and was almost 2 hours late with the morning meds. Needless to say we had a little baby focal seizure right after she got her meds and before they had a chance to absorb. I'm pretty pissed at myself for that one.

Well that was insanely disappointing. So my vet was way off about what the key part of the study. Yes they are doing them, and it sounded all great to me until she had mentioned that it does include a medication that is not yet on the market and or approved by the FDA. Plus he would be on this drug for like 84 days and he could possibly have the placebo drug and not even be getting treated. I just don't mess around with seizures like that. So I said thank you, but no freakin way! That would NEVER be worth the free care to me.

So back to square one. I will call my vet today, and see about getting him on the medication and seeing if there are any more tests that we can do.

What a bummer, but at least you can still get the workup since you have the insurance. I know it's disappointing, but i don't blame you for not wanting to be part of a trial, especially if it could cause him to not receive treatment of any kind for the duration of the study. Either way, it sounds like you have a great vet that will give you other options to consider.

Yeah, and now I'm on the fence about the work up too! I mean its something that I want to do, but I might just take a step back and get all my thoughts/research together and then see about going to them. My vet tomorrow should set me on the right track, plus I have the holistic vet option as well since he would like to see him.

All of this is just so overwhelming and I do not want to make the wrong decision that could hurt him in the long run.

I understand and that makes sense. I think it's smart of you to research it and think about it. Since it had been so long since his last one, hopefully that means that you have some time to really think things over and research before you have to make a decision. Just take a deep breath. I know you will make the right decision for Nikolai.

Erica

I was thinking about what research on epilepsy someone would be doing and suspected that they would want to be testing a new drug. After all, there aren't any other choices for treatment at this point in time but to use drugs. Epilepsy is probably caused by a damaged gene, but our current state of science doesn't really allow for us to fix bad genes. Maybe someday.

I completely understand not wanting to be part of a drug test experiment. I would make the same call for Lyra  

I suspect it is a problem to find people who are willing to let their dogs potentially be off medication (should they be on the placebo) or on an ineffective drug (not all new drugs actually work) just for the sake of pushing science forward. After all, drugs are developed mostly to make money (yeah capitalism!). The pushing science forward part sounds nice and all but it doesn't pay the rent, at least not for the experimental subjects.

Best wishes for Nikolai!
Kevin