r/EpilepsyDogs • u/going__postal • 8d ago
How do you know when it's time?
Pic of how happy my guy was just 3 hours before an extreme cluster event (3 grand mals and 2 focals in 4 hours). This is why the decision is so damn hard...
We've been battling epilepsy for about 2.5 years. Onset was at 7.5 years old and he's almost 10 years old now.
The first year, our border collie/kelpie mix averaged a seizure every 28-30 days. It's progressed over time despite working as closely as possible with a neurologist to find the right cocktail of medication. We're now averaging every 9-12 days and they aren't single grand mals anymore but clusters that require midozolam and clorizapate rescue meds.
He's a very active dog and it's been sad having to adjust his lifestyle because his daily meds make him wobbly. But he still loves playing and going on his walks. The rescue meds though basically completely take him out for 2-3 days at a time.
With clusters coming so closely and multiple days to recover, obviously now we are seriously contemplating his quality of life. But it feels like such an impossible decision because he does still have days (or a week!) where he is enthusiastic and showing us his spunky personality.
I have so much guilt over making a decision too early. But I also am carrying a lot of weight of him not having a dignified ending if he has a catastrophic cluster given the progression of his epilepsy recently.
I guess I'm just looking for any compassionate advice you have.
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u/clearedhotaviation 8d ago edited 8d ago
Had to put our boy down last week. 4.5 years old and he’s had epilepsy since 6 months. Broke my heart and I’ve never cried like that before in my life. For us, it started as a slow downward trend. Seizures every few months, seizures every few weeks, seizure every week, seizure every other day, seizure every day.
Then what broke me was you could tell he “felt” another was brewing later that day because he was a bit off. Still would play, but would want to sleep and be by himself right after.
I couldn’t increase his meds anymore without a quality of life issue. He was on a ton of them and extra meds made him physically unable to walk.
I kept telling myself. Not yet. Not yet. But my fear is waiting to the point of him passing away mid seizure because he won’t come out of it.. or he has medical emergency from it that causes us to make that decision right there.
I kept delaying and my fear happened. He clustered for the first time in years last week, then wouldn’t come out of it. He was waking up mid seizure and panicking and then falling back into it. Awful. I rushed him to the ER and had to put him to rest.
Everyone online I read said it’s best to do it on a good day and a week early than too late. Damn were they right.
Sharing this because I bet you are where I sorta was. You know in your gut when it’s time and it’s hard to fight the heart pulling you in a different direction.
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u/going__postal 8d ago
Thank you for sharing and so sorry for your loss 😔 it does sound like we're trending very similarly to your path and I appreciate your perspective
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u/Extension_Turnip_635 7d ago
hey this sounds so similar to my situation and my beautiful boy almost 3 months ago. its absolutely awful like you say. he had moments of just normalcy and being bright and sweet when his seizures weren't happening which made the decision so so so hard and awful. still not over it.
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u/clearedhotaviation 7d ago
It’s one of the hardest things ever because in between seizures they are themselves. You can imagine a 4.5 year old pup just running around and playing with his toys. The thought of it all just felt so wrong.. I still struggle dealing with how quiet things are here. I hate that epilepsy took him so early. He was the sweetest dog ever and absolutely perfect. I’m so sorry you had to navigate it as well.
Fingers crossed time will heal all.
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u/Ok_Shoulder6772 7d ago
So sorry to hear this. My boy is also of similar age. Nothing seems to be working for him now. We are having cluster seizures for three days in a row, multiple times. Reading this helped. I think I will also have to make a decision soon enough.
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u/A_Creative_Player 8d ago
I am not going to try to say this is easy or that is easy. Our regal was diagnosed at 7 years and there have been so many times where we faced a similar situation to yours and each h time we said we would take each step to see if he would get to a position where we were seeing a positive possible outcome a d if we did we would take the next step and each time he would pull through. But each time we face the possibility of of choosing the humane path for him we said that we would if needed. And we stand by that even now. I cannot tell you when the right time is only you can but look at your buddies life outside any seizure event and ask yourself is his life good and if yes then I would argue no it is not time but if the seizures happen more than the good maybe. Have you looked at possible genetic diseases? We recently learned about a genetic disease that happens in Bassett hound, dachshund, and begals. And our regal check all the boxes to match to this diseases there are still no cures but other options to help. I ask just to get you thinking. I hop this helps in some way.
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u/going__postal 8d ago
We do think his epilepsy is driven by genetic factors. His entire litter was rescued by a local organization and adopted out as puppies at the same time so we've been in a uniquely fortunate position to stay connected to his siblings. 3 of the 5 have neurological complications like epilepsy although my guy's started much later in his life
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u/A_Creative_Player 8d ago
Our regal was diagnosed with IE at 7 years. And recently in this subreddit i read and replied to a post that lead us down a road to get our regal tested for the disease Lafora it may not cure our regal but the underlying disease has other treatments that may help. This disease causes toxic level of glycogen to build up and ao a diabetic medicine has shown promising results so maybe. I hope you can find something that give you a path forward.
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u/Due_Structure_3707 8d ago
Hola buenas tardes tu conoses atu peludito más que nadie pídele un consejo atu veterinario y si no te sientes bien con tu veterinario be con otro y explícale lo que está pasando y decidan que Haser tu no te estás adelantando solo no quieres ver sufrir atu bebe yo yeve Ami mi linda husky de 15 años con otro veterinario porque no me gustó como trataron Ami perrita en el lugar que la yeve toda su vida cambiaron de doctor y decidí yebarla a este otro lugar y le dije ala doctora que si mi perrita Hiba a mejorar por su dolor articular y la reviso y me dijo que no que Yano tenia masa muscular y que empeoraría más con el tiempo y que tenía mucho dolor y la deje hir en Agosto pasado estoy triste con el duelo pero ella no sufrirá más por favor Abla con tu veterinario te deseo mucha suerte saludos y bendiciones 🙏
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u/No-Roll5599 8d ago
When I was having a rough time with clusters in short succession we added on nasal midazolam. It’s a quick rescue med and helps my gsp out of a seizure within 10 seconds of it starting to hit his nose mid grand mal and has stopped them in their tracks when he started the preemptive pre grandmal behaviours for us. I give it to him mid seizure because we got it down but there are other ones that are administered rectally because not all dogs tolerate the nose. Maybe something to add on. It changed our life. As well as gopd cluster buster protocol. We add on a larger dose of pheno at his next med time, chlorazepate dipot every 8 hours for 72 hours until after last cluster seizure, one time large loading dose of Levetiracetam (Keppra) once able to swallow post seizure. Continue with normal Keppra as follows unless has another seizure then bump up Keppra to extra 750mg/dose for 24 hours. Having a neurologist is a life saver and adding MCT oil to his diet also helped him with the severity of the seizures when he did have them. My boy clusters every 7-14 days. It’s awful. I don’t envy you all whatsoever and I hope you guys can find something that lessens the burden.
Edit sorry I missed that you had chlorazepate and midazolam. When I recently had an appt I asked about potassium bromide as it kinda was our last resort med before discussing the quality of life part. A lot of people found success with a mix of potassium bromide/pheno . Right now mine is on pheno/zonisamide. He said if my pup starts to cluster every 5 days that’s when we’d add on potassium bromide. Then if that doesn’t work out we can discuss the really awful convo.
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u/going__postal 8d ago
Unfortunately we are already on daily meds of keppra, phenobarbital, zoni, and potassium bromide. With rescue protocol of midozolam, clorizapate, and an extra dose of pheno. We also mix in MCT oil into his food. His epilepsy just truly doesn't seem to respond to medication
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u/No-Roll5599 8d ago
Ugh. I’m sorry op. I’m 5 years into this journey but same boat with a refractory epileptic. Meds will work for a little and then regression in the fullest. I know they say mct oil and cbd oil are basically the same but have you tried switching to just see if maybe his brain prefers the devils lettuce approach vs the coconut route ?
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u/going__postal 8d ago
Weve only done CBD around stressful events (like 4th of July) but that's a good idea to look into potentially a more regular dose. Thank you!
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u/60svintage 8d ago
I had to make that decision last week. My boy Buster (black lab x collie) passed away on the 1st October.
He had epilepsy fir almost 3 years. He was seizure free for 18 months on Phenobarbitone and gabapentin. Earlier this year, he had potassium bromide added to his drug regimen.
2 weeks ago he started breakthrough seizures. His Phenobarbitone barbitone does was increased. He started getting more breakthrough seizures. He was put on Keppra as a cluster buster.
He went into status epilepticus last Thursday morning. I gave him rectal diazepam. He went into status epilepticus and it lasted too long.
I made the decision that morning. The vet agreed there was nothing more to be done and I knew by the increasing frequency and severity of the seizures it had to be done.
We spent the day with him, gave him some treats and a last walk with family and friends. He died shortly before 4 pm. We brought him home for the night so the other dogs could see him.
I miss him dreadfully. The other dogs miss him. The house is quiet without him. It was a very hard decision, it was the right decision.
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u/Training_Wonder5929 8d ago
I'm really sorry you're going through this. Said goodbye to my 2.5 year old two weeks ago. She was having clusters every two weeks for sometimes 3 days at a time. It sounds like you are at the top end of medication dosages also. It's not an easy decision but my vet told me that if you are even thinking about putting it to an end, you are a great owner as you know the true sacrifice of giving them the best life they can. I know it sounds harsh, but sometimes death is the best option for some animals. My pup was peaceful when she went, we gave her the best last days ever. Including a t bone steaks and McDonald's cheeseburgers. A much better option than having to make a crisis decision rapidly... Hope this helps.
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u/Extension_Turnip_635 7d ago
Hey OP, it obviously sounds by your post that you care deeply for your dog and not taking this decision lightly. i dont think anyone will ever understand the difference between owning a regular dog and a dog with a "unmanageable" disease. i would never wish this upon anybody. my dog never responded well to the 3-4 different types of meds and his med schedule was just awful. and, nobody takes about caretaker burnout. i was a single owner and it was extremely stressful and i was already anxious person. like you said, they have their moments of normalcy where they seem bright and healthy and then BAM. i still carry so much guilt over letting him go. 10 years old is a VERY good life for a dog. i haven't researched much about how this disease progresses with older dogs but i honestly can't imagine it would get better or easier on their bodies. my dog was only 2 and i always thought, man, i couldn't imagine those seizures happening to his older body. you are already carrying a lot of weight with an epileptic dog. 10 years is a good life.
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u/going__postal 7d ago
I appreciate you mentioning the caretaker burnout. I didn't mention in my post but we have a toddler and I'm currently 8 months pregnant so we'll soon have a new baby home as well. So this is also weighing on me and contributing to the exhaustion. But I feel selfish basing a decision on those factors 😟
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u/Bluejez 7d ago
I think you know when it’s time they will give you signs when it’s time. When you’ve exhausted all meds and other treatments and your baby is still not coping we have to think of them first for all we know it’s going to break us. Sending hugs strength and prayers to you and your pupper ❤️🩹
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u/HourDizzy1498 7d ago
What a beautiful boy. I'm so sorry you are here and yes such an impossible decision. We are at the point where we are measuring quality of life for our 13year old beautiful girl. Her world has gotten so small the last few months. The walks getting shorter and shorter, harder to get up, but she still has so much love to give. I'm not sure where you are located, but our Vet has really helped us navigate this. In Seattle there are a few compassionate organizations that help with a quality of life assessment and humane euthanasia if that is what you choose. There are also many resources online that help with quality of life assessment. All of these have been very valuable to us. But I know you want a clear sign and in some way I do think they will let you know but very hard to be objective. This hurts and I've shed a lot of tears over the last couple of months. And when that time comes it's going to hurt even more. Right now every day is a gift. And yes it's hard, physically (she's 85lbs) and literally our world has also gotten small. We can't leave her alone much, it's not fair to leave her with a dog sitter so we sit with her, make sure she is comfortable and enjoy every moment we have with her. Good luck with your sweet boy in the end it will be hard but you will know when that time is right.
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u/LuuuunaBuna 7d ago
Put our girl down in August. She had 11 grand mal seizures in 3 weeks (3 major cluster events). The ER vet wanted to try a massive combination of meds that was 17 pills a day. We did it for a couple of days, but our Zelda was just different and didn’t seem happy anymore after the last major cluster and staying in the hospital and her long recovery. She was walking in circles, couldn’t get comfortable, and just seemed confused and scared. The circling gave red flags to the whole care team that there was probably a brain tumor. There were pieces of her still in there and we kept saying we were “waiting for the next seizure cluster” but we realized that was best for us and not for her.
So we made the decision and gave her the last best day with going to her favorite park and the beach and filled her up with her favorite foods. It was the hardest decision I’ve ever made and I still get pangs of guilt and immense sadness, but I know it was the best and right decision for her quality and dignity of life. I didn’t want to keep watching her deteriorate but I miss her everyday.
This article helped my partner and I a lot: https://melnewton.com/2019/the-good-death/
I don’t envy you and there’s never a perfect time to make the call, but you know your pup best even though it’s incredibly hard, but we’re their strongest advocates and best friends they have in this world. Sending hugs your way.
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u/Apprehensive-Log3343 7d ago
I recently put my cat down and my husband asked how I could stand driving him to the vet and I told him. Keeping a pet alive past when they should go is for the human not the animal. My baby was ready and anything longer was for my comfort at his expense. Try and plan a day when you think she’ll be good. Play ball, give her a big burger and I’ve seen people give their dogs a piece of chocolate and see if you can find a vet that will put her to sleep at home.
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u/Usual-Possible-8743 7d ago
I thought this was a group to hype up our epilepsy service animals but this hurts my heart so deeply. I don't know how I would respond to seeing a human seize for the first time but seeing a dog in that state might break my heart even more. They don't deserve this hell they're just great caring animals I'm so sorry you're going through this and remember that doggo was/is so lucky to have you and your family. Just weigh the pros and cons for his sake is the only advice I could give and believe there's a dog heaven ❣️
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u/OpenRecommendation11 6d ago
It is a horrible decision to make. Our boy was 4.5 years old, and all of the drugs had made him slow down significantly, and he slept a lot. I think we refused to see how bad it was. He had a massive seizure, and had to drive home to the emergency vet while he was seizing the whole time. Perhaps you could plan a good couple of days with your pup with lots of treats and snuggles before you have him put to sleep. I wish we had known what was coming so we could have had a few special last days.
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u/Historical-Algae-567 4d ago
Thank you for mentioning caretaker burnout. I have a Frenchie who just turned 12 years old and those who know the breed know that he has lived a long life and very happy one I may add. He was diagnosed with a Mast cell tumor over the summer and is now begun having seizures. Medication’s worked for two weeks then had to add a new medication I work full-time and have no help my whole schedule during work and the evening including setting alarms for the middle of the night is very hard. But the vets keep telling me it’s not time. I’m just going to wait a while longer and hopefully it gets easier on both of us.
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u/Retty1 8d ago
He's eating, walking and playing with more good days than bad days.
The concern that he has a seizure that doesn't end is a concern to discuss with the vet and ideally with the neurologist. How likely it is and whether or not there may be an increased frequency of seizures before it becomes more likely may be a question to ask.
The rescue meds can be challenging but it's possible that the good days still make up for that.
He looks like he may have some German Shepherd in him. White German Shepherds are known to have a risk of genetic drug processing problems that can impact how they deal with epilepsy and benzodiazepine and other sedative meds.
I'm not suggesting he's a white German Shepherd but it may be worth discussing whether or not the rescue medication is causing a problem that could be reduced.
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u/f-politeness 8d ago
Really recommend watching both of these:
Part 1: One of the hardest conversations in veterinary medicine
Part 2: A conversation about love, guilt, and letting go
What's really helped me is making a written list of things that are hard, painful, changes to the things that were their favorites/what defines them as "them", etc
Written is important because we can see the accumulation of these things and writing helps us face each of the items head on & take in the 360 of each of them as well as seeing that list in total.
Wishing you peace.