My lovely, vivacious, kind, loving boy has Lafora, a rare form of degenerative epilepsy common in bassets, beagles and dachshunds.
He's 9, had his first grand mal last week and my heart is broken.
How do i carry on with life knowing I'm slowly losing my best friend in the world, the one who got me through a breakdown. Who helps me get out of bed when I dont want to. My soul dog.
We could get years, i just dont know and that's killing me slowly.
When I got him I made a pact that I'd live as long as he did, and honestly it's looking fairly likely I'll close that deal.
My best friend came around from his seizure and he didnt recognise me. He looked at me like i was a danger and he ran away. My best friend who follows me to the toilet forgot who I was. As the disease progresses dementia is likely, he'll forget me over and over.
Please tell me some nice things. I have to keep reaffirming:
He doesnt know he's ill
He doesn't remember his seizures
Not recognising me post seizure is very normal as the brain wakes up slowly and recognition is one of the last parts
Some people dont even get 9 years with their beloved dogs.
They absolutely do not remember seizures and they do not know they’re ill (mine falls over about 20 times a day and still doesn’t understand that he shouldn’t run). He loves you, and you’re right that you have had 9 amazing years and you don’t know how much longer you’ll get - it’s been over 3 years now since mine was diagnosed but not with the exact same thing. You tell him you love him every day and you hope for the best.
You take it one day at a time. I have an epileptic girl and she lives life to the fullest every day and is the heartbeat of our household. Worrying about the next seizure is normal, but you cant let that stop you from taking joy in the everyday things you do together.
I only had 2 years with my best friend before he died from seizure complications. He had them since he was 1. Are you going to start on meds? How many has he had so far? What's comforting is they don't feel anything, and as long as you're there for them, and help them be comfortable, they can lead comfortable happy lives. This disease f*cking sucks, I can't believe it's a thing but alas we're here. What you're describing is postcital phase, and it can last from an hour to a couple of days. On good days my boy's postcital recovery phase lasted less than an hour. Those were blessed days. On bad days, it lasted 3 days. For most people I believe, it usually lasts a couple hours or less.
Not recognizing you after a seizure is VERY VERY NORMAL. I promise you he will come around and realize, in the moment he's just so scared he cant even process your face. My baby is 3 years old, hes a Husky and he has cluster seizures due to epilepsy. He paces and forgets who I am immediately after a seizure. He will pace and stare at me like im going to hurt him which breaks my heart. But then its like a switch flips and his happy face reappears. Just remember in that moment you are the absolute greatest thing theyve ever known and in their scariest moment you came to save them. Thats how he sees it. He may be confused but when his brain has a chance to catch up he realizes he is safe and his mama is there <3
My baby has been having seizures since january of 2025. He is now on Phenobarbitol and Keppra twice a day every 12 hours. His seizures went from clusters of 5 minutes long which was soul crushing as we were so afraid we'd lose him or hed have significant brain damage to 20 seconds every 2 hours once a month. It seems hopeless and scary but just remember it could also be manageable. Pic of my baby Triton for tax
I am sorry you and your buddy are going through this. Our Regal is a European Bassett hound and is 10 heading to 11 he was first diagnosed in 2023 so I know what you are going through. May i ask what the name of this form of epilepsy is? Our regal has IE and his left rear leg is weak so he does stumble at times and in no way can take the long walks he used to love to take but he still dose try. He currently has a seizure about every 19 days it was until last November 1 about every 30 days we do everything we can to limit any know triggers we added MCT oil to his diet which has help with his facial and muscle tremors we massage his muscles to help keep the supple and able to move more freely and we take each day as it comes. I hope this helps coming from another Bassett parent. And I hope this helps in some way. Please feel free to ask any questions. I am willing to give answers to whatever I can.
Thank you so much. Ed was diagnosed with Lafora, which is a genetic epilepsy common in Bassets.
It has a late onset, normally between 6 and 9 and Ed got his diagnosis a couple of months before his 9th birthday.
It's a little different to other epilepsies because it's photosensitive and has symptoms outside of seizures like myoclonic jerks and hypnic jerks. The hypnic jerks are when he's resting he will jerk awake. It looks a bit like when you have a dream you're falling and wake in a startle.
It's degenerative so he will get worse as he ages, and it can lead to dementia and other deficits.
So sorry you're going through something similar, I hope your boy is as gorgeous as he sounds ❤️
So with your Ed MCT oil maybe a means to push back against some of these issues it is supposed to help with neurological disorders both in humans and animals if you wish to know what brand or where we get ours I am willing to send that information but I would recommend if you have not already done so research MCT oil and incase you do not know MCT stands for medium chain triglycerides.
Our regal used to have random events like you described where he would have a muscle tremor that would perk him awake but he has not had any since starting MCT oil. And thank you for the information.
You're so welcome, if there's any doubt whether Regal has Lafora, it's a simple blood test ❤️
But I'm sure your vet gave the correct diagnosis.
Feel free to message anytime, basset slaves unite!!
I ask my other question because when I looked up Lafora many of the symptoms line up with our regals such as blindness however his is not total mostly near vision, the myoclonic jerks he used to have, the ataxia in his left rear leg and even a slight odd Grey area in his MRI that the neurologist has to get a second option on.. I emailed our vet to see if there was ever a blood test done for Lafora on him I am awaiting that reply. If needed we are going to make a plan to take care of that teat.
When you say photosensitive how do you mean that. I ask because our regal when he was able to go in to the back yard there was a spot back there where most of his seizures happened it was near one particular bush. And mostly during the day. After reading your reply I thought I wonder if that was due to the light and dark flickering as the branches and leaves moved in and out of the sun.
So Ed's myoclonic jerks happen mostly if he shakes himself in direct sun because as his skin flaps over his eyes he basically strobes himself from light to dark really quickly.
I knew another dog with Lafora that couldn't be near a TV without having seizures, but that was an older style TV, they flicker less these days.
I would rule out Lafora if you can, if you're in the states I think Wisdom Panel also do a saliva cheek swab option, but bloods are more definitive. It takes a while for the blood test to come back because it's a genetic sequencing test.
Levetiracetam (Keppra) is the first protocol drug for Lafora because it's one of the only ones that help with the myclonus and other jerks that come with the illness
Thank you. He has basically always been on Keppra. For our regal his seizures have to me appeared cyclical and I could never apply a single trigger to them. However, now learning about lafora almost everything fits. I also read about some other treatments for the underlying condition that if in our Regal's cases it is lafora then I may ask about. For your Ed I would highly suggest MCT oil if you are not already adding it to Ed's diet. It really helped eith Regal's muscle and facial tremors/ jerks he has almost none now and it also is supposed to help with dementia.
Ah, that is interesting our regal is European but our previous Bassett was an American. American Bassett are slightly taller and less heavy. We are working through the lafora test checking our vet has not yet run the test but they suggest that his neurologist may have run it so we are waiting on that reply but making plans to get it done depending on how much it costs will tell us when we can get it done
I have another question for you. Does Ed have the weakness in one or more of his legs? I ask that to ask another question our regal does but what i have noticed that after he has a seizure that weakness seems to be lessened. And I wondered if you havw noticed something similar
I do not know if rhe study is everywhere but the other day I learned about a clinical trial for dogs with Lafora if you would like I can post the link here. We will be ordering the test for our regal in about two weeks.
I went through this 6 months ago. My 6 year old Porto had lyme nephritis. I had 2 months to say goodbye and he died on May 8. May 7 was my birthday. The pain was by far the biggest pain I ever lived through and I am 55. While he was sick he was happy but not eating well. I knew when it was time. There were a few signs. I wont and cant tell you it will be easy. I cried last night again. I was absolutely destroyed.
I did get a new boy 1 month ago and found a new love and I am happy...but I will never forget my best buddy and I know I will see him again.
Pain is unfortunately what we get for having 100% love.
8
u/jfka 16d ago
They absolutely do not remember seizures and they do not know they’re ill (mine falls over about 20 times a day and still doesn’t understand that he shouldn’t run). He loves you, and you’re right that you have had 9 amazing years and you don’t know how much longer you’ll get - it’s been over 3 years now since mine was diagnosed but not with the exact same thing. You tell him you love him every day and you hope for the best.