Vet expertise vs. Owner familiarity - please weigh in

General questions about tests and procedures for diagnosing canine epilepsy. Please note that we cannot make a diagnosis or interpret specific test results via this forum - please consult your veterinarian for specific advice for your individual pet.

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Stoid
Posts: 20
Joined: Tue Oct 27, 2015 5:56 am

Vet expertise vs. Owner familiarity - please weigh in

Post by Stoid » Wed Nov 25, 2015 11:15 am

First, this is strictly speculative; my epi girl, Zusje, died almost a month ago. And it's a bit long. But I'm trying to give enough information for you all to give your opinions. ESPECIALLY THE VETS.

Zusje had a very consistent pattern when she had seizures. She always clustered, first of all. Always grand mal-generalized-tonic/clonic: stop, stiffen, fall over, all muscles spasm and contract, teeth chatter, urinate, drool...transition to "clonic" paddling motions, begin to gain awareness, fight to stand, proceed to pace in a very disengaged, clumsy, but incredibly persistent and forceful manner for anywhere from 30 -45 minutes, depending on the recurrence of the seizures. Essentially deaf and blind, her entire being would become focused on moving forward, no matter what. She'd crash into anything in her way and push through or past it if she could, only turning around when it was no longer possible to go forward. (I didn't just let her do this, but it was a struggle to protect her. She was a very powerful little pit bull. I would usually hold her as much as I could and create a small zone in the bedroom with padding everywhere for her to bounce back and forth in.) Then she would pass out into a very heavy sleep for about 5 hours, and wake up like nothing had happened.

Zusje's final spiral began late on Wednesday afternoon (Oct 28) when I found her cycling rapidly through generalized seizures and drooling copiously, never regaining enough mentally to even try to stand. I have no idea how long she was in that state when I found her, but she didn't get any meds until we got her to the emergency vet about 45 minutes later.

I could not afford to hospitalize her at the emergency vet (although if I had known how it was going to go down, I would have- my regular vet cost what the additional would have cost at the emergency and she might have made it.. ) They gave her midazolam. She was very loaded and just barely awake at all when they brought her to me a few hours later. I had to call them not long after we got home: they told me the medication was very strong and her very strange behavior (twisting up in her kennel, making strange noises, sort of fighting with herself. The door was open but she wasn't aware of it, I couldn't get her to calm down and sleep and at some point she tore off the last inch of her tail...) was the cause.

Finally, at about 3am, she got quiet. I was enormously relieved, briefly. I don't know why I was uneasy, but after about an hour I looked closer at her and I saw that she wasn't sleeping, she was having petit mals: her eyes were open and her face was twitching. She wasn't trying to stand or walk. It was at that point that I started to realize it might be the end.

She remained like that, and I took her to my regular vet as soon as they opened, 8am. still no attempt to stand or walk, no awareness, eyes open, face twitching. (Heartbreaking, very very hard.) My vet hospitalized her, gave her a lot of tranquilizers and fluids, knocked her out and stopped the twitching. But every time they backed off the medication and tried to bring her out of it, the twitching would start.

IMy vet didn't have overnight facilities. Ideally I would have taken her to another facility with a near specialist, but that wasn't a financial option. The vet gave me one syringe of valium and I took her home. I had to go to a compounding pharmacy to pick up the zonisimide that evening about 9 and she finally got it about 10. (Rectally: she was still gone, eyes open, twitching. Some apparently reactive body twitches when she was moved or I stepped over her, pulling her head up. But it was not normal. Occasionally her eyes seemed to track a little, but mostly staring and twitching. Yeah, it was exactly as f*cking horrible and distressing as it sounds, in case you were wondering.)

I made the room as quiet and dark as I could and got a little bit of sleep. When I woke about 5am Zusje was extremely quiet. (She hadn't been very noisy anyway, just noisiER). But when I turned not he lights she wasn't sleeping, eyes were open and twitching, just much less so. I gave her all her meds, I think maybe a little extra or a little early, I can't remember, I just know I did something a little more. I put her on my bed and started trying to find a neurologist to talk to to see if it was going to be possible for her to br brought back with minimal measures done primarily by me.

At about 11am I heard her snoring (she was big snorer) and when I looked at her I nearly wept with relief: her eyes were closed for the first time that I had seen in about 40 hours! Sleep! Normal sleep! But a few minutes later they popped open again.. but about an hour later they were closed and she seemed to be sleeping! So I left her alone while I got ready to go to the neurologist at 2pm for a final consult I had to have before I made any decision.

At about 1:30, I think, she began paddling her legs. I was thrilled. Because there was nothing about it that looked like "clonic" paddling of seizures at all, there was no drool, no stiffening, no heavy panting... absolutely nothing else going on that was in any way similar to her seizures. To my eyes, she was postictal. She was "pacing" in the only way she was capable at that point, because she had been seizing in some way or another for almost two days and her body and brain were exhausted to a degree beyond imagining, there was no way in hell she was capable of anything more than the paddling.

The paddling persisted, absolutely as though she was postictal, all the way to the vet and into the exam room. So it had been happening for something like an hour. But aside from that she couldn't even hold her head up. She looked dead at a glance, actually, when I was taking her in, because her head was hanging over and her tongue was hanging out. The neurology tech came in to check her out first and I quickly gave him my thoughts, and he agreed that it looked postictal.

I was feeling really hopeful that she was starting to respond to the meds and her brain was going to come around. I was just hoping I would be able to care for her at home.

Then the neurologist came in and instantly began essentially berating me, telling me that Zusje was actively seizing and we had to do something immediately one way or another, etc. She wouldn't let me speak, she was shutting me down when I was three words in, and was just all about "we have to take action" or euthanasia, totally shaming me. She finally heard me a little and told me there was no way it was postictal, it was seizing. And I asked her to tell me why she was so convinced, she barked at me that Zusje was unconscious (Zusje's eyes were closed. Remember, she had NO IDEA what the history was at that point...) and I said to her of COURSE she's unconscious (sort of) she's been seizing for nearly 48 hours! She is at a point beyond exhaustion and this is all she can do... and I would have continued, but the neuro was SO not interested in hearing it.

I was pretty battered myself at that point and so, without getting anything close to the conversation I had come for, really explaining to me what was possible or necessary or not possible, and certainly no consideration of the signs I was taking as the beginning of her coming back, I agreed to let her go.

Understand, I'm not looking to torture myself with the "what if"s - she's gone. And in the end, for a variety of reasons, it was almost certainly the only decision I could have made. I have made my peace with it.

BUT... I want to know from you all who have been dealing with your epi-kids and their idiosyncrasies and peculiarities, and I would LOVE to hear from the veterinarian moderators: am I really so wrong to believe that Zu really was postictal? Not because I am thinking myself more of an expert about epilepsy than a veterinary neurologist, but only because I AM an expert about my dog specifically, especially my dog's specific experience and symptoms over the previous 48 hours.

And further, given the many ways this disorder manifests, shouldn't the vet have listened to me? She was so absolutely certain she absolutely knew exactly what was going on, and the paddling could only be active seizures, and she thought this without any background, and she didn't WANT any background, she just wanted to describe for me the ways my dog was dying in front of my eyes. And totally aside from EVERYTHING else: she sees a dog with closed eyes, the front legs paddling, no muscle spasms, no drooling, no twitching, absolutely nothing else, and hears that the paddling has been going on for at least 45 minutes to an hour, and the only possibility is active seizure?

Thoughts? opinions? Assuming anyone had the patience stop make it this far...

MK's mom
Posts: 1708
Joined: Wed Mar 01, 2006 9:48 am
Location: Michigan

Re: Vet expertise vs. Owner familiarity - please weigh in

Post by MK's mom » Mon Nov 30, 2015 8:19 am

How horrible for your Zu AND you! How dare that neuro treat you as though you were negligent. I'm sure they see a lot that makes them think people just don't care about their dogs, but you had your girl at two vets and she was medicated when you ended up at the neurology clinic. Her treatment towards you was not acceptable, I think I'd call the owner of that clinic and let them know how you were talked to.

I wasn't there to see what your girl was going thru, but the paddling would have probably made me believe that her brain was still misfiring and she wasn't completely out of the seizure pattern yet. You're not a neurologist and you did the best you could, it's not like you just shut the door and allowed her to die slowly from the seizures all by herself!! I feel so badly for the poor animals that get this danged disorder and it's no picnic for the humans that love them either.

Be gentle with yourself, we all know what you're going thru.
Nathan
3.5 yo Irish Setter boy
First seizure 7/26/2013
Last seizure 3/24/2014
__________________________________
MK
5 yo Irish Setter boy
First seizure 1/25/06
Last seizure 9/4/2009

Aug 17, 2004- Sept. 22, 2009
May the shamrocks fall softly sweetpea

Stoid
Posts: 20
Joined: Tue Oct 27, 2015 5:56 am

Re: Vet expertise vs. Owner familiarity - please weigh in

Post by Stoid » Tue Dec 01, 2015 1:24 pm

First of all, thank you so much for taking the time to read my post... sometimes, as we grapple with this horribly painful disorder and everything that comes with it, it's good just to be heard. Just to tell our stories and know that someone listened. (This is true about everything in life, of course, most particularly the difficulties and pains in life. We all want to be seen, to be witnessed, to be heard.)

One thing that I cling to is the fact that generally speaking, no matter how awful it all looks to us, the animals themselves experience very little in the way of suffering as we understand it. They are not conscious when they are having seizures. It's the coming out of it that's toughest on them, and of course, dogs being dogs they get over it quickly. Dogs live in the now, which is where we all should live.

As for the way I was treated: they did hear about it, and I was treated poorly by a second physician as well, but in the wraparound to those experiences, I was given extraordinary support and kindness by another member of the staff who sat with me for FOUR HOURS while I readied myself to let Zu go. They knocked her out with valium so there was no seizing or anything, then the staff member and I sat and talked, and I cried (A LOT) and laughed and showed her pictures and we drank tea and I made a few phone calls and the whole time the staff member told me I could take however long I needed. She was amazing and I am eternally grateful for being given that time and support. I am an extremely emotional person who very much needs to express my emotions, and losing Zu so young after all that had happened, well, I needed to do a lot of processing.

Eley's Mom
Posts: 198
Joined: Fri Feb 28, 2014 6:54 am
Location: Chicago, West Suburbs

Re: Vet expertise vs. Owner familiarity - please weigh in

Post by Eley's Mom » Wed Dec 02, 2015 9:30 am

I'm glad you got support from at least one member of the staff. This is such a torturous disease and extremely trying emotionally (and physically) for us.

As for your particular case, it's hard to tell if it could be post-ictal or still some sort of seizure activity.
Eley tends to paddle her legs and not be conscious for sometimes and hour or two after the grand mal. I have discussed with my vet to get their opinions on whether or not it is an active seizure. The general consensus is that while she may not be actively seizing, her brain isn't back to normal yet.
It's so difficult since each case is so different.

I really hope you have found the comfort in knowing you did the best you could with the resources you have.
I think sometimes vets have a difficult time being too understanding to the reality of the disease. I know they studied it and neurologists even specialized it, but how many have actually lived it 24/7. My guess is that most only deal with it during business hours and go home.

Here, we all have stayed awake (or mostly awake) for days taking care of seizing and postictal dogs. We've spent money we didn't have and wondered if there was still more that we can do. I think we've probably all questioned ourselves on whether or not we're doing the right things. I know I question myself each and every time a seizure happens...
We understand and feel free to vent or tell your story as much as you want here. We get it :)
Diana & Eley
Boston Terrier (23 lbs)
DOB: 11/12/09
First Seizure 2/8/14
Last Seizure 10/9/16
Phenobarbital 48.6mg (morning), 56.7mg p.m. (night)
3 mL Potasium Bromide, once daily
Clorazepate as needed after seizures

jaragr
Posts: 39
Joined: Wed Dec 23, 2015 2:34 pm

Re: Vet expertise vs. Owner familiarity - please weigh in

Post by jaragr » Mon Jan 04, 2016 11:52 am

Wow being treated like that would have made me do or say something I'd regret later. Sounds like your dog went through a lot, and you went through it with him. I want to cry just reading your post. My dog will stiffen up and at the same time be turning, and his teeth are bared. He falls over and immediately starts paddling, drooling and peeing. They last about 2-3 minutes, then he lays still for a few seconds before he lifts his head up. Then he's disoriented and confused for a couple of hours. This is SO hard to watch, so I cannot imagine what you have been through. It really sounds like your dog had no quality of life left, and I truly believe you proved your love for him by letting him go. I feel your pain.

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