Killian - aka Honey Badger - aka Lil Bit - aka Baby

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KillysMama
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Killian - aka Honey Badger - aka Lil Bit - aka Baby

Post by KillysMama » Thu Jul 26, 2018 9:45 pm

How is everyone tonight? I'm Lea... and I'm Killian's mama. I wish none of us had to be here, but it is what it is - we started presenting seizures on May 24, 2017 at 1 year 11 months old. At first we thought it was a fluke - he had one at 2 in the afternoon and one at 2 in the morning, and then it was over. Exactly two weeks later, the flood gates opened, and we were introduced to our new idea of life.

The second week of June 2017, Killian started seizing at 630am. He had at least 8 seizures between that Saturday morning and the following Sunday morning - he spent Sunday on seizure watch at the vet and we came home at 1030 that night to our first experience with a post ipical puppy and a pheno barb prescription. They started him at 60mgs twice daily, with a loading dose of 90mgs four times daily for the three days. After that, we had 31 days of blessed peace, considered ourselves lucky, and moved on.

Then came July. Between July and September we were on a ranging minimum 5 day to maximum 11 day cycle - most were at 7 days. He would seize 3-4 times each 24 hour period and then move on until the next cycle started. Our hearts broke, my mind broke, everything fell apart as we rushed back and forth to the vet. Blood tests were normal, pheno was presenting treatable levels, everything was right, but his little brain just wasn't. In August, my cousins gave me some hope - their dog had been seizing and it was a simple thyroid issue - 1 pill a day and he's not had a seizure in two years. So I rushed home from our family picnic, packed up the pup and took him in for a thyroid test. Sadly, he tested normal.

When we cycled down to every 5 days, they started him on keppra alongside the pheno. 1 500mg tablet every 8 hours. So we adjusted our schedules and we made it work. He went 17 days - and then the new way of life started. First week of September, he seized for four days - 1 seizure on day 1, 2 on day 2, 3 on day 3 and 4 on day four... and then he went 32 days. Then it started again - four days of increasing seizures in the middle of october and then nothing for 40 days. He had one seizure on December 17th.. and then it compounded from there - 3 on New Years Day, and then a few days later, and then a few days later... fast forward to January 14th at 330am, and he went into status. 8 seizures in 20 minutes - he just couldn't stop.

We loaded him into the car, and ran for the emergency vet - crying the whole way there, sure that he wasn't coming home this time. They dosed him heavily with diazapem injections until my vet opened, and then we headed to my vet. My wonderous, glorious vet got us a neural consult at the OVC, so a half an hour after I dropped off Killian, I was back to pick him up and haul the poor puppy to Guelph to meet with the neurologist. He did great in the waiting room, great in the exam room, and they told me he had to stay. So I gave a university kid in a white coat my puppy, told them they had permission to put him to sleep if they couldn't help him, and drove home alone. My poor boss had to deal with me not showing up on a Monday, and then when I came in Tuesday, I wasn't able to stop crying - the vets had called and said it wasn't looking good, he'd seized all afternoon and all night, did I want them to keep trying? I told them to keep going, just try, if they couldn't help him, then do what they had to do. My boss sent me home, told me to take the week off - how awesome is my boss? Seriously? That night the news was better - no seizures in 12 hours. I was able to pick him up on Wednesday. He was blind and lame, but he was home. That time both his sight and his legs came back within a week.

He came home with his pheno upped to 125mgs twice daily and his keppra upped to 1500mgs three times daily. But he came home. And we got 62 glorious days. Then March 17, he had one. March 25th he had two. April 2nd, he had five, and he was off to the OVC again. Three more days hospitalized, and he came home with 1000mgs daily of potassium bromide - 2ml of the concentrated 500mgs per mil liquid. He also came with a small prescription of a fourth anti seizure drug who's name I can't remember right at the moment, and a couple of weeks of a sedative to help with the diazapem withdrawal. This time his sight was back by the time I picked him up, but his little legs weren't fully on board with the seizures and medicine - they have only just started to come back to full strength in the last three weeks.

His pheno has been dropped to 100mgs twice daily, but the keppra and the potassium bromide are the same - we had to drop the pheno a bit due to him presenting some ataxia on the final high doses of the drugs. He's only 25kgs, so he was pretty drugged. We dropped the pheno at 92 days, on day 102 (on the 16th of July) he had two seizures.. one at 1230am and one at 5am. We took him to the vets for seizure watch on Monday morning and they accidentally overdosed him on his keppra - I sent in 24 hours of meds, with instructions for pheno at 630 and keppra at 230 and 1030 - we dropped him off at 830 in the morning, so they ended up dosing him at 1030 and 230 instead of 230 and 1030... but whatever - he was a little stoned, and the cluster broke - so I'm not going to complain.

He has grand mal seizures - full body. He presents 15 seconds before the seizure at most, and generally just confusion until his body stiffens - that's normally what wakes us or alerts us to the pending seizure. From there, his entire body locks in a half arch and he screams (that is the absolute worst part of it). I usually have enough time to get my hands between his head and the floor and just let him have at it. On the more violent ones he's crushed my fingers with the strength of his head hitting them, on the quieter ones it's just a matter of making it easier on him. I have scars from his claws catching my chest (he's crawled up on top of me and dropped into a full seizure several times), I've caught teeth during the thrashing, and I've had to put the pieces of my heart back together too many times to count over the last year, but we are still here.

So, that's Killian's story - here we are on day 10 - mama sleeps with one ear open, brother freaks out every time baby twitches, and baby just carries on like nothing is wrong. I hate our new life, but I love him too much to stop fighting. This beast isn't getting my little Honey Badger without a fight to his very last breath or my very last dollar.
Lea and Killian
3 year old Barbet/Shepherd
1st Seizure 5/24/17
Last Seizure 7/16/18
We will not go gently.

xxcesarxx
Posts: 11
Joined: Thu Apr 12, 2018 9:59 pm

Re: Killian - aka Honey Badger - aka Lil Bit - aka Baby

Post by xxcesarxx » Sat Jul 28, 2018 12:58 am

I love your bravery. Stay strong.

Alliezig
Posts: 21
Joined: Tue Jan 02, 2018 1:35 pm

Re: Killian - aka Honey Badger - aka Lil Bit - aka Baby

Post by Alliezig » Mon Jul 30, 2018 3:55 pm

I know it is so stressful. My Ziggy, lab/shepherd mix, 6 years old, had his first seizure 12/13/17 and continues to have seizures. I had so much trouble sleeping at night as Ziggy sleeps with me and he has had a few seizures in the early morning in bed. No helpful suggestions, just wanted you to know I know what you are going through.
Mary Lou and Ziggy
1000 mg Keppra 3 x day; 1.5 grams Phenobarbital 2 x day

KillysMama
Posts: 8
Joined: Tue Jul 24, 2018 8:15 pm
Location: Cambridge, Ontario
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Re: Killian - aka Honey Badger - aka Lil Bit - aka Baby

Post by KillysMama » Mon Jul 30, 2018 6:35 pm

Sleeping is the worst - most of his seizures start while he's sleeping, so nights are stressful. In the beginning, I barely slept at night - I would sleep on the sofa to make sure I slept light just in case. Now that I realize there is nothing, absolutely nothing we can do, I'm back to sleeping in bed - but I still sleep very very light.

I fly as soon as I hear that tell tale THUMP. Always 1 single thump as his body stiffens, and I've got about 15 seconds to get to him and guard his head before it starts. I watched it happen once on one of his bad days, the shot that went through him prior to the actual seizure actually had him back flip when he stiffened it happened so fast. It was like he'd been electrocuted. Fortunately, since then, it hasn't been that bad - usually he just hits the ground as a dead weight now instead of flipping... but you can always tell, the initial thump sounds so much different than anything else. We've learned to tell the difference between him crashing to the floor to go to sleep (he is graceless and hits the ground hard when he decides he's laying down) and the thump of a pending seizure.

Of course, if we don't hear it, that horrible scream will always wake us up - usually that's what gets my s/o's attention. By then, mama's already on the ground pulling the pup away from the wall and getting fingers under his head so he doesn't hurt himself and daddy is just looking on going, is he okay? How he can't freaking tell frustrates me to no end, but I'd rather it be me holding him anyway. He doesn't hold him right when he seizes.. I feel like such a bitch all the time because I'm constantly snapping at him not to try and hold him down, just let him do his thing and protect his head at all costs. I know he loves the dog, I've seen how hard it was on him when we thought we were going to lose him in January, but the guy has absolutely no nurturing instincts.

Killian has to have a specific routine, if we fall out of it, he tends to have a seizure - pills 630am and then out to pee, breakfast 7 am, walkies 9am, pills 230pm and out to pee, walkies 5pm, pills 630pm, dinner and out to pee, liquid 9pm and out to pee, pills 1030pm, snack and walkies... 12pm out to pee and bed. Very specific, every day - happy puppy is a calm puppy, calm puppy tends to go longer between events.

I've had dogs for 32 years - usually 2 - 3 dogs at a time - we've had our issues with cancer in one of my old english, our golden and in my shep/collie - all corrected through surgery, we had hip displaysia in one of my old english that forced our hand when she was 10, we've had our issues with a rogue birth defect in my doodle - corrected through surgery, we had strokes in 2 of my old english that took them at 15 and 16 respectively - about 2 years apart, and my 17 year old shep/collie had a couple of seizures in the last few days before he passed, but I've NEVER seen anything like this.

Sometimes it's really nice to just vent at people who just GET how hard it is... and have adopted the same outlook I have - just get through it and look forward to the next good day. At least, in our case, there are more good days than bad. I know we could have it worse, just on those dark days it doesn't always feel like it. But here we are at day 14 1/2...
Lea and Killian
3 year old Barbet/Shepherd
1st Seizure 5/24/17
Last Seizure 7/16/18
We will not go gently.

GentleJacob's Mom
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Joined: Wed Feb 14, 2018 11:05 am

Re: Killian - aka Honey Badger - aka Lil Bit - aka Baby

Post by GentleJacob's Mom » Tue Jul 31, 2018 6:43 am

This disease taxes you on so many levels and you adjust and fall, stand back up, adjust, fall and stand again. I've always said that you have to pull up your big girl pants or this thing will run right over you. Jake and I grew up through this disease together. You'll find things that work and don't and want to scream often. Give yourself time to do exactly that, even if you just scream into a pillow.
We always kept throw pillows under chairs and under or near our bed so we could easily put it under Jake's head as he seized. They helped a lot to protect his head and freed us up to help him more. About three years into it he started sleeping at the foot of our bed and I found that I slept a lot better. The only downside is that I got so used to this huge dog laying his big head on my feet for eight years and since he died I've have a very hard time sleeping. But it definitely helped us know as soon as he started seizing. There were several times we were able to stop the seizures in their tracks with acupressure and ocular compression.
During the first year my husband seemed disconnected. He seemed to pull away when Jake seized. I talked to him about it several times but he just said he was tired. Finally after one horrible weekend of clusters and me getting sick from a tick bite, he told me that one of his sisters had had seizures when he was a little boy and how he always felt helpless to do anything. When Jake started seizing it brought it all back. Once he got that out he was more hands on than ever, and every time I felt as though he knew even if he couldn't help his sister (she passed away) he could help Jake. Your s/o may just feel completely helpless. Not making excuses here at all, but we all have a very hard time reconciling what's happening, but for some it's next to impossible especially when they know there's nothing they can do to fix it and make it stop. I tend to be the queen of denial at times so that came in very handy in this situation.
I do wish you luck as you find your way through this journey. You can vent here any time you need to.

Take Care,
Lynne

KillysMama
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Joined: Tue Jul 24, 2018 8:15 pm
Location: Cambridge, Ontario
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Re: Killian - aka Honey Badger - aka Lil Bit - aka Baby

Post by KillysMama » Tue Jul 31, 2018 6:35 pm

Hi Lynne,

Thanks for taking the time to reach out - I've followed Jake's story through your posts - he sounds like he was an amazing boy - I was so sorry to read when you lost him.

Personally, I'm not a screamer - I'm a crier. At Killian's worst, there were times I needed nothing more than just to be left alone so I could curl up in a ball and cry until my heart didn't feel so broken... but because I am his main caregiver, I can't do that to him - some times I just have to remember, he has it worse than I do and I keep going on for him.

I wish throw pillows would work for him - but Killy's head thrashes as well as jerks up and down. I've tried pillows before, it just ends up thrown around. I have bath mats all through my house for him - really thick mats, one every few feet so unless he drops in the kitchen, there is always one in reach - they also help when his little legs don't want to work. He's usually fine after the 1st seizure, a bit blind after the 2nd, and then if we go any more than 2 he'll start going fully blind and lame. His one rear leg never came back after his first cluster in June 2017 - not entirely - you wouldn't know it to see him running around, but when he's tired it drags and he usually doesn't have a lot of weight on it. The mats help with his head and with stability when he's ready to get to his feet - my wood floors are hell on him on a bad day.

Your poor husband! That had to be awful for him to re-experience. Mine just has no grace. He loves the dog, he probably wants to help? But when I start freaking out I get really controlling - it's the only way I know to deal with something - control the hell out of it. So I think a lot of it is him just getting out of my way - which ticks me off even more because what I really want is to have it taken off my shoulders now and then... but it's a vicious circle because I can't give over the control lmao - so when Killy seizes he needs to walk at least 2 kilometers after each one - I'm out walking him at 2 in the morning and then I get angry at my husband because why should I be the one walking the dog every freaking time? Or I insist on someone being with him for 2 hours after each seizure... then husband goes to bed so I get angry because I'm the one left awake. The poor guy takes it from every direction on a bad day.

The best part of it all? Jericho is our mama's boy.. Killian is a daddy's boy through and through - when he's feeling poorly, all he wants is his daddy... mama is a poor, tired substitute that wishes he loved her as much as he loves his daddy lmao!

And as to venting - I'm just learning now that it's okay to talk about - I'm one of those ocd people that finds a pattern in everything - so last year when we had less than a week before cluster events, my brain linked talking about it to it actually happening - I've spent a year not willing to talk about it at all - terrified that saying anything would make it happen again. My minister at church used to ask every few weeks how many days we were.. and EVERY time he asked, hubby would answer even while I'm standing there shaking my head to stop him, and it was ALWAYS that night he'd have a seizure. Stupid coincidences... so yeah, now I'm starting to get it. I didn't do this to him. We didn't do this to him. Talking about it didn't do this to him... but talking about it will help me cope.

And that's why we joined and why I've started Killian's blog... it's time to stop hiding and just deal with it.
Lea and Killian
3 year old Barbet/Shepherd
1st Seizure 5/24/17
Last Seizure 7/16/18
We will not go gently.

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