Epilepsy in Dogs, what is it and what is it like living with a dog who suffers from seizures? Our personal story.

This is the story of Matteo, which means Gift of God in Spanish. 

I’d like to introduce you to our little 20 month old miniature dachshund, Matteo. Today, I want to share from a parents point of view what our journey has been like over the last couple of years with this little cutie who suffers from what we now know is Severe Idiopathic Epilepsy. How we mange life with him, how we feel, our emotions, because no one ever explains what it feels like loving a tiny little sentient being, & watching them live with this disease. We are sharing our experience in the hopes that it helps other people, so it’s a very personal story today.

I wanted to write this Blog because having a dog with severe epilepsy is hard, and, we have come to understand that the brain is so complex that we really don’t understand it very well. There was no ‘this is why’ or ‘here is something to fix this’ answers. It’s a slow and often painful journey that as humans we can’t really understand until we go through it ourselves.

Epilepsy in Dogs is not a Death Sentence

Yes, I have had several people tell me to have him put to sleep, that I was causing him pain, I was being selfish. To this day I pick my conversations with some people because they have straight up told me I was cruel keeping him alive. My husband & I spoke about this, were we being cruel, was there no hope? Should we put him to sleep? And it took us about 2 minutes to come to the decision hell no, his quality of life for the most part is excellent, he’s happy, playful, loving & very much loved by us. But, we also came to the realisation, he’s here for a good time, probably not a long time. And when his  quality of life is no longer, we will let him pass peacefully & without any pain.

'Teo came to us at 9 weeks of age with what we thought was going to be some hearing problems. Easy peasy, a deaf dog, I got this! He was flown from interstate, and we collected him at the airport and brought him home armed with what we thought was a solid plan on introducing him to our other dogs. A huge scary experience for a puppy that weighed in at just over 1 kilo! We popped him down onto a bed with a hot water bottle and a fluffy blanket. He then froze, curled up and literally shut down for the next 5 hours. He did not move. I sat with him for ages hoping he’d wake up and start to explore his new home, but no. Five hours is a long time to constantly check his breathing. And that was the beginning of our huge learning curve. 

Once he had woken up, met the rest of his new family and had his first meal we thought all was good. I had a feeling something was a bit off with him, I rang his breeder &d asked her is he had shown any weird behaviours, she said no, we just assumed it was because his hearing was compromised - for those that don’t know white dashies are an abnormality and often come with hearing or sight issues due to a gene missing, it’s called Double Dapple. 

Anyhoo, life continued on, we transitioned him easily onto a complete raw diet - there’s a link below to 2 videos on his first couple of weeks and how we did this. He seemed to come out of his shell, eating sleeping & doing all the normal stuff, but he did not, & still does not have a dog ’filter’, that is he can’t read the room, he has no idea when another dog is telling him enough, just stop, get out of my face. No ability to be able to read the room whatsoever.

Puppy School & a Dog 'On The Spectrum'

Puppy preschool came around at 10 weeks, and off we went. He had his mat, & all dogs were on leash at all times so no interactions were negative. And then he shut down again. Every class he did everything perfectly, sit, stay, down. Everything but the socialisation, it was like he had no idea how to behave with the other kids. And this is where I liken his behaviour to a child with Autism or ADHD, he was super smart, but not able to have a simple conversation. No aggression, just head down, if I can’t see you, you can’t see me. All dogs have personalities, just like people and that’s cool. We dismissed it.

Then the rat bag behaviour started at home at about 4/5 months. Just naughty stuff, all our dogs can be cheeky, but they know what the rules are, they know what we expect of them. His puppy play with the other dogs became more aggressive, to the point I had to call in the expertise of a my good friend, a behaviourist to see what her thoughts were. We went through some psychology conversations, she gave me some knowledge & help. But then the peeing began, every where. On the furniture, the floors, every single dog bed in the house - and at that point there was a dog bed zone in pretty much every room. I was washing at least 2 loads of dog blankets every day. Out of control. So the topic of desexing came up at 6 months, I was against it, he’s too young, he’s just a handful. We eventually decided when things got out of control & he bit the tip of Amarah’s tail, really badly - blood all over the place - he was over stimulated because we had been out & just gotten home & he had no outlet to express his excitement. Right-o, let’s desex him & try to calm all that testosterone.

Now, you’re probably thinking  he is just a shit of a dog. And, if I am being honest, he was a total arse. But, in between these bouts of manic behaviour there was this gorgeous, sweet smooch of a dog who could literally melt you with his eyes. So, desexed at 7 months, all good, blood tests good. Then the first seizure happed 2 weeks later. And it was a doozy.

Cane Toad Country

I was out, we have cane toads here in Brisbane & are very used to dealing with them, Tapita is our stoner dog- she is literally addicted to the poison they secrete, it’s a hallucinogenic drug. Matteo came into the house covered in foamy saliva & shaking & completely erratic. Lost, no idea where he was. My husband grabbed him, it looked exactly like cane toad poisoning & tried to wipe his mouth out, just a normal day at the office if you live in a cane toad zone.

https://animalemergencyservice.com.au/blog/what-to-do-if-your-pet-licks-a-toad/

Expect it wasn’t, he was in the middle of having multiple grand mal (which literally means very big) seizures. In the throws of this he bit Jose’s face, & then bit his stomach - he still has the perfect bite mark scar there. I came home to a very freaked husband with blood all over the kitchen & blood up the hallway. (that was my husbands, not 'Teos!)

We watched him for a couple of hours, he slept & seemed okay, then another big seizure. I have seen these before, but Jose had not. And this is where I want to explain to you that these seizures are very, very confronting, they are bloody scary. We flew down to the emergency hospital with what we though was an ongoing cane toad reaction. And that’s not normal, once they’ve gotten the poison out of their system they are usually fine, so I knew something was up. At the emergency vet, and this was at 10 o’clock at night, asked if he suffered from epilepsy. No, not that I’m aware of, this has got to be the toad. Total shock & denial. 

I can retrospectively look back on these events and it was a plain as the nose on my face, but at the time we didn’t put the pieces together. This is the most important thing to take out from this blog. I knew he was not normal, I knew there was a problem, but I chose to let my fear cover up my mummy sense, always listen to your intuition, your gut! If something is a little off, look into it.

I look back now and I would have done things differently if I had known he was born with this condition. But, I can’t turn back the clock, & I have done a lot of beating myself up, I feel responsible for triggering his disease. Desexing added a lot of chemicals into his system, the anesthesia, the antibiotics, the pain meds. But the rapid removal of his testosterone hormone changed his brain chemistry in my opinion. And this is all speculation, just my thoughts, nothing has ever proven this is what happened, & could have caused his epilepsy. Just my thoughts.

So we put that first horrible series of seizures down to a cane toad. And then it happened again, a couple of days later, and it was a huge, long grand mal seizure. I was with him at the time, he was playing roughly with Amarah, & down he went, onto his side, all legs paddling like he was swimming, mouth snapping like a crocodile, saliva foaming everywhere. It felt like 10 minutes, I was on the floor holding his head so he didn’t smash it over and over on the tiles. He stopped, had no idea what had happened & tried to get up, he didn’t know who I was. Then he fell over like he was drunk several times. So, this was the point I knew we had bigger problems than just an over active, manic dog.

https://www.vet.cornell.edu/departments-centers-and-institutes/riney-canine-health-center/canine-health-information/managing-seizures

Off to our amazing vet to get some tests done, some scans, basically a LOT of money later he was prescribed his first lot of medication,  Phenobarbital, it’s common name is Phenomav. Three quarters of a tablet two times a day. So, now Jose, my husband and I are stalking him, literally every minute we would check in to see where he was, if he was okay. The term helicopter parents was a pretty good description!. And, it was exhausting.

At he time we both worked from home, & the seizures kept happening, so, for the most part of the day Jose would have him on his lap while he worked, lucky Teams meetings allow you to not have your screen on! It was hard, we both slept with one eye open, as they happened at anytime. Sleeping in the middle of the night & being woken up to the sounds of paddling & snapping teeth was getting to both of us, we were exhausted, felt so guilty. It’s the worse feeling watching this happen over and over & literally just hold his head & tell him he was safe, mummy & daddy were here. He’d come out of them, & be confused, lost & pace for a good hour before crashing into a deep sleep. And Jose spent countless hours holding his head on the sofa afterwards, it seemed to calm him. And, I cried more than once, it’s so heartbreaking loving him & watching him suffer. 

The specialist neurologist wanted to do an MRI on his brain, but, after talking to our regular vet we decided against it for 3 reasons. One, the cost - around $7000, the second, the general anaesthetic, we had no way to know if he would have a bad reaction, & thirdly, if there was some sort of malformation, the thought of a major operation, costing upwards of $10,000. still with no way to determine the outcome seemed an exercise in futility. After doing a lot of research myself, & both vets being of the opinion that it is Juvenile Epilepsy not some sort of tumour, as he had been ‘special’ since day one. 

Keppra Treatment for Epilepsy in Dogs & Humans

So, next set of blood work, a very expensive trip to the specialist neurological vet again, more tests, and then came the Keppra, a human epilepsy drug. This one was half a tablet three times a day, evenly spaced. Our daily routines changed, they became centered around his medication times, 7 am, 12 noon & 5pm. On the dot. Never miss one, and alway be on time (we learn't this the hard way after missing a lunchtime tablet and the resulting 3 big seizures over the next 24 hours were a lesson we never want to learn again) He seemed to have some improvements, the seizures would stop for about 3 weeks, other than the small twitches which happened almost every hour. Lots of twitching, eye blinking & pacing. Every time he looked up at us, which for a dashie is all the time, it looked like he had Parkinsons. This went on for another couple of months, back to the vet for his 8 week blood check up. His knick name by this point was twitches!

Prescription CBD for Epilepsy in Dogs

So, now 10 months in, we had a twitchy little dude who was a little more settled, the drugs slowed him down a bit, but still getting break through grand mals once or twice a month. So, next medication we added to the mix was  prescribed CBD. And I just want to touch on this. In Australia your need a prescription for CBD oil, and there are very few vets licensed to do this. CBD is not Hemp Oil. There are some published studies on the benefits, particular to epilepsy, in calming them and slowing down his sometimes manic mind. I use the word manic as a clinical term, basically he just becomes incredibly active, similar to normal dog having an attack of the voomies, crazy fast running, but there was jumping, throwing himself at doors & cupboards. Throwing himself on and off the sofa, really rough aggressive play with his brother and sisters. Usually this is part of his seizures, kind of a warm up I suppose! This behaviour was what were experiencing when he was younger, and we just thought he was super naughty!

So a Vet in Sydney prescribed & compounded the CBD for him. I found them through the licensed CBD Vets Australia website. https://cbdvetsaustralia.com.au/

The 2 types of meds in conjunction with the CBD have some pretty bad side effects & are known to cause liver damage, so he’s on milk thistle daily, & gets turmeric, and once a week I make up a batch of Dandelion Tea. I let it seep for a long time, strain out the woody roots and add it to their water bowl. All the dogs seem to quite like it fortunately! We feed him a lot of anti-oxident rich foods like Blueberries and Bone Broth as well as MCT Oil (refined Coconut Oil).

Still the twitching was happening, & every now & then he’d have a big one, which were taking longer to recover from, sometimes almost a week. He’d be so quiet, sleeping & withdrawn, not at all himself. I think it was about now we realised that he needed to be kept calm & quiet, too much stimulation would mess with his head and we’d end up having a big one. So, what would be easy for most dogs became hard for him, and us. A simple walk around the block sometimes resulted in a series of seizures. It’s really hard to keep a puppy calm with other dogs around, or when people visited, or a simple home delivery would set him off!

Off to the vet from his 8 week blood work again - this is necessary to make sure he’s getting the correct doses & his kidneys & liver are not failing or under too much stress. And I must of been having a bad day that day, I got a bit teary on our vet, so he decided to throw the last option into the mix, a drug called Bromav, which is basically potassium bromide. This is a super old-school treatment, & it was used on human epilepsy for around 150 years. It’s not prescribed very often for human use as it’s got a couple of bad side effects, the most severe being loss of coordination, dizziness, & lack of control of your arms & legs. Yey us! So, about a week later we started to notice he was walking around like a drunk sailor, banging his head on doors, walls & pretty much everything else. His legs were slipping out from underneath him which made running up the hall difficult, or jumping up on the sofa, getting off was worse, he face planted a lot. 

Accepting Epilepsy and Living a Normal Life

The twitches became less over the following months, & his big seizures were about 4 or 5 weeks apart, so victory! Fast forward to now, he’s still on all 3 medications & the CBD, he still falls over, but we reduced to Bromav by a quarter as that’s improved as well. Our lives are now a little easier, we’ve settled into a routine, sure, things like going out for lunch or dinner need to be planned around his tablet times, but we’ve relaxed a lot from those first couple of months. He is still watched closely, when they all go outside I check in every couple of minutes to make sure he’s okay and not seizing & hurting himself.

We are now experts at reading his body language, his manic behaviour has calmed a little, but we know it's a warning that one’s coming. We try to keep them all calm, but that’s really hard when we get home or someone comes to visit. We can see when he checks out, he sort of just freezes & stares, that happened today when we took him out for a short trip in the car. He got lost, so we both had to let him smell us and work out we weren’t strangers. I think we are both at peace with his illness to a certain degree, every now and then I have a bit of a cry, but I don’t feel like it’s all consuming like it was for the first 6 months.

I hope this has helped any one how is going through the journey we have, if you’ve got any questions pop them in a comment below. And remember, we would not euthanise a human who suffers from Epilepsy, there is no reason to consider this for your pets either.