Cluster seizures / status epilepticus

[Debbie-Spain]

My wheelie dog Bombón (6 yr old female Pek cross, HBC with rear paralysis) had previously had brief seizures when she had urine infections/uterine stump pyometra. In November last year she had her first prolonged seizure, at that stage she wasn't diagnosed as epileptic. She was in hospital for several days, they had problems to stop her seizing and then she was in a post-ictus "paddling" situation for 2 or 3 days.

Since then she has been on phenobarbital (later added Potassium bromide) but was still having seizures every 1-2 weeks, mainly at night. Sometimes she would have several seizures in one day. Under my vet's supervision I started using the protocol at http://www.canine-epilepsy-guardian-ang ... otocol.htm which was really helpful and if I used it right at the start of the seizure it was helping.

A couple of weeks ago she started seizuring during the night and for the first time ever I didn't wake up straight away, so when I did I don't know how long she had been seizuring. Anyhow, I couldn't stop her using the protocol, took her to the vet and again it took us days to stabilize her using a valium drip, propofol and occasionally thiobarbital.

We finally got her into an "induced coma" type state but didn't know if she would wake up, and had to stop all IV meds because her veins kept collapsing (not just in her legs, in her neck too). She did wake up and for the first couple of days was extremely sleepy, which is normal.

After her last "status e." in November she was blind and it took several weeks for her to partially regain her sight. Apart from some sight loss she was back to normal before this latest episode. She has been "awake" a week now, and this time has severe balance problems. It is hard for her to remain in a sitting position. She seems to be disoriented and confused. She cries for me to pick her up and if I do she starts screaming, really screaming. She doesn't appear to be blind this time.

I don't think the problem is pain because she can be screaming one second and wolfing down her food the next. It seems to be more of a comfort thing. Sometimes after a "normal" epileptic fit she desperately looks for me for comfort and becomes very clingy. This seems the same but much more exaggerated.

There is little experience of this kind of situation here, most dogs are PTS long before, so we don't know if her current situation is due to the massive amount of medication, or whether it might be permanent brain damage due to the seizure. The last week has been terribly difficult. If I think she is going to remain as she is now, I would take her to be put to sleep because I feel she has no quality of life. I'm not even sure if she's aware of my presence. But if it could be temporary I would carry on in the hope that there will be some improvement.

Ever since I took Bombón in 5 years ago it has always been a fight, she had constant urine infections, despite being spayed she had uterine stump pyometras, bladder diverticulum, splenomegaly and we had to remove her spleen. We feel that the epilepsy is probably due to scarring on the brain from being hit by a car when she was a stray. We have dealt with so many things but I just feel that we have won so many battles but are losing the war. Just a couple of days before she had this latest attack I was walking her near the vet's and everyone was saying how happy and well adapted to her disability she was.

I'd be interested to know if anyone has had similar experiences, I have found one person whose experience was similar but after a week the dog had improved considerably... If I had to quantify it I would say that Bombón has improved by about 2%, and that is the improvement I have noticed today.

I'm going to try bandaging her neck because it seems to make her feel more stable...

Any input would be appreciated; the attached photo is a couple of years old now...

Debbie

[GabrielDeafBlindPupFamily]

Debbie, My heart goes out to you both. From my friends whose dogs suffer a LOT of seizures, I'm told that crying is common afterward. I've only exp. one and her post - ictal lasted 4 hours. She didn't even know i was there, completely unaware of her surroundings. She was blind to start with but her mapping abilities are second to none. Her confusion scared me worse than the seizing. You can do the cotton ball test, drop a cotton ball at different fields of vision and at different distances. See if she follows it or realizes. Her crying may be the fear factor, but her crying when you pick her up has me baffled. Is she deaf? I'm thinking Angel's screams are because he can't hear, and he doesn't know if I can either. Maybe your girl is losing hearing? I'm sorry I can't help you, but my heart is with you.

[Debbie-Spain]

Thanks Karen for reading what turned out to be a very long post, sorry!

Yes, Bombón always had hearing problems, from when I first took her in. It was very strange, she can't pick up a human voice (at least not mine) but if I whistle, or make loud hissing/kissing noises etc. she can hear those. Sometimes (before her epilepsy) she would look for me and not find me and I would call her and she would still not find me but if I whistled etc. she would find me straight away. I don't know if her hearing has worsened now, because she isn't particularly responsive at the moment to anything. If I make her noise I see a faint movement of her ears but not the kind of reaction I would have seen previously.

With the screaming, if I pick her up and hold her, she still carries on screaming, but if I wrap her tight in a towel or blanket, she calms down. That reminds me of the anxiety wrap technique, and makes me think it is more an anxiety/confusion thing than physical pain. I feel she doesn't know where she is in space but I don't know if that will improve. I don't know whether to try wrapping her up or whether it's better to do it when she starts screaming to calm her down. Because if she gets used to being "wrapped up" and still screams then I have nothing else to use to make her feel better.

She has fought so many problems and always come through and been fine again, she is such a happy little thing normally, she literally bounces in her wheelchair or out of it. If I have to let go I will but I want to make sure that I have done everything I can. I'm giving her neuro supplements and a liver protector as well as her meds. I had been hoping previously that we could start reducing the phenobarbital but that is looking impossible right now, we had to increase her phenobarbital, but at the moment the seizures are the thing that most threatens her life.

My vets call her a miracle and say that she is indestructible because they have seen her close to death so many times and she has made it through, and via the web she has a a wonderful group of "fans" who are constantly sending her positive energy and urging us on, but I wonder if I'm asking too much of her. That said, I'm ready to let go, but only if she is, does that make sense? I feel that she is fighting and that I have to support her, but it's so tough. Of all the problems I have had to face with disabled pets the whole epilepsy thing is the hardest I have encountered. I was coping okay with the occasional seizure but this situation of clusters/status e. is just so hard to deal with... I imagine there is more experience and expertise in the US but here in Spain we are really at the limit, most vets here would have put her to sleep five years ago because she was paralysed.

I'll try the cotton ball test. She does have a threat response (closes eyes if I move hands nearby), she lost that in November in both eyes but one eye recovered vision almost completely and the other less so, but it did recover the threat response, it took maybe about a month. So I'm tempted to say well, I'll wait a month and see what happens, but it's so hard seeing her screaming, and I honestly worry the neighbours will call the police, thinking that I'm torturing her. The screaming is probably for between 2-5 minutes about 6-8 times a day but it seems like an eternity every time. Today is the quietest she has been... it's 1 p.m. here and only 2 screaming sessions so far.

Thanks again,

Debbie

[critters]

^@#*^ thing just ate my reply...

If I had to guess, I'd say the new problems are from the seizure. I wonder if she now has visual processing problems since you now have to make noise for her to recognize you? Personally, I'd try wrapping her up more frequently in an attempt to circumvent the screaming fits in hopes of reducing the frequency. Maybe in time, if she has enough mental ability left, you might teach her a new behavior, such as a single bark, to get what she wants.

[nez]

This is very dear to my heart debbie,hi and nice to meet you.I am soo sorry about your sweet furbaby,cluster seizures are heartbreaking.
I lost my furbaby to this in june of last year,all same things that are happening to your furbaby.
My (poco) would have the screaming right when the seizures started ,chill your right to your heart.
Its all part of those dreaded seizures,not even sure if they even know ther doing it.
I understand completely how helpless your are feeling.My poco spiked a high fever,then the coma,and there was not stoping the seizures.
Your furbaby seems very strong and a will to live. I am praying all goes well with your precious furbaby,and the pheno will help control them.
Any questions that i might be able to answer ,feel free to ask.I am no vet,but when youhave gone through this ,some things might help.
Wishing the best for your furbaby,, nez

[GabrielDeafBlindPupFamily]

nez, what a heartfelt, wonderful post. On behalf of most of us who just don't know what to say, thank you, and thank you for being there for Debbie who means the world to all of us.

[Debbie-Spain]

You are all very kind. Nez, thank you for your support and offer of help. I'm sorry about Poco and the fact you had to go through all this. It really is the most stressful situation so I really feel for you. Twice while Bombon was still in Status E. I was ready to put her to sleep, both times she made a sudden improvement that we weren't expecting. Even my vets went from "maybe it's time" to "oh my goodness it's a miracle" at least twice. She is an incredible fighter, I couldn't list all the things she has been through when we thought she would die and she made it through.

Today we went to the vet to have some stitches removed (when she was still seizing and all her veins were collapsing at some time way past midnight, my vet eventually cut her leg in a desperate attempt to find a vein to get a line into it for the drip... fortunately that leg is paralysed with no sensation). Anyway, she coped okay with the journey then screamed all the way from the car to the clinic and back, I mean really screamed. At the clinic I asked for a towel and managed to calm her down by wrapping her in it.

It seems that she is blind, at the moment, there is no threat response (not sure that's what it's called in English, but if you wave something near her eyes she doesn't blink in response). She has horizontal nystagmus at times but it seems to be reducing.

It is hard to tell because I'm so worn out, but I do think that yesterday and today there has been a gradual small reduction in the amount of shrieking. Sometimes she is quiet and I assume she is asleep then when I look I see she is awake and quiet. She is tending to moan quietly more but not shriek as loudly. I tend to think that the crying is like "pathological crying" in humans, a kind of exaggerated reaction; possibly even an "incorrect" reaction (pathological crying can occur in humans even when not upset. etc.). I think that is all controlled mainly by the cerebellum, and with her balance problems too it would make some sense to think there could be cerebellar damage. The thing is to see whether it is permanent damage or not. At times I feel she can pull through, at others I feel maybe I'm asking too much of her. She has surprised us all so many times.

She is eating well (fish and rice diet, trying to keep her liver detoxed) and drinking fine too, although she tends now to lick her food whereas before she would have bitten at it, and she has some trouble finding the level of the water in her drinking bowl. I'm wondering whether to make her a "den" that she can try and find her way around, maybe with the bottom of a large transport crate or something, I think she might feel safer and more protected that way.

Will keep you updated if there are any changes in her condition, she has just started crying again but it's not at a volume that the neighbours down the road can hear, which is a big improvement.

Thanks again just for being there while I witter on and try and make some sense of it all. Here's a photo of Bombon in January, about 2 months after her previous status e. ...the clothes were to keep her warm, not a fashion statement!

Hugs
Debbie

[nez]

Debbie,your photo made me cry,she is absolutely beautiful ,i so understand what you are going through. Thank you gabriels mom ,very kind of you.
What i can remember debbie,is when poco first started haven his seizures,there was no warning the first seizure was him just running around the deck and screaming and trying to hide.
I was freaked,i had no idea what was going on.This went on every time a seizure would start ,i wonder if this is happening to ya furbaby.Some could be mild,perhaps ask your vet?Also,he paddled with every seizure ,was heartbreaking.
my poco started haven them on a friday night at 7 oclock ,and had them every hour allnight,took him to our vet,they gave him fluid and valium shots.We came home,never haven a dog with seizures i had no idea what to do,if i had known what i know now perhaps poco could of survived.I do blame myself ,and am so glad your looking for answers to save your baby.Poco started not being able to move his back legs as quick as sat night,then we rushed him to the uga college vets sunday morning.By then ,he was so weak ,and i dont think he even was able to stand.He stayed there for 6 days,every test available like you are going through. They told me ,that there was no more they could do ,and when they tried to bring him out of the coma,the paddling started again ,and he was 3 lbs when he went in the hospital and looked like he was 1 lb then.
So there is hope for your furbaby,she has shown you she is strong and will beat this.IF i had it to do over again,i would of struggled with more time,because not one day goes by ,i dont think of him .
Have you had the cat scan done yet? Just dont understand so many dogs haven seizures now.Honestly she is the cutest furbaby,i so feel for you ,and wish and pray she gets better Please God!! Sorry this was long,but i understand completely how you feel.When they have the screaming,i too could not stop poco ,nomatter what i tried. I wish i could help you more ,only thing that helped was valium to calm them. ok ,i wrote enough good luck ,my best wishes. nez

[critters]

What a cute pic!!! The nystagmus and balance problems fit cerebellum damage, true, but nystagmus alone can cause wobbling.

It was warm enough Christmas for Ari to go to my sister's house. While we were eating, I put my sister's Golden's ginormous cup-style bed into his similarly-sized crate. It was GREAT and kept her from crashing anywhere while I was distracted.

[Debbie-Spain]

Nez, please don't blame yourself. When Bombón was still sedated and paddling (2 days after the status episode began), it got to the point where I decided that if she hadn't stopped paddling by that afternoon, I would ask the vets to put her to sleep. I got to the clinic in the afternoon as prepared as I could ever be, to go ahead . When I got there the vets said "you aren't going to believe this, she stopped paddling about half an hour ago". When we finally stopped sedating her (24 hours later) we didn't know what would happen when she woke up, but I said that if she woke up and started with more seizures, or paddling, etc. that I would go ahead and euthanise since at that stage we couldn't put any more IV meds in her and oral medication was out of the question. I was really worried that she would suffer terribly when she woke up. She slept solid through the night (2 friends were with me and helped take turns to watch her but none of us really slept!) and when she finally did wake up I was ready to run to the clinic. So I came really close to taking the decision you took, and I think it would have been the right decision if Bombón hadn't stopped. I totally understand your situation and I am sure that you did the right thing. If I didn't have to do it this time I may well have to do it next time. I think you have to go through this to understand how terrifying it can be watching constant, unstoppable seizures.

We haven't done a CAT scan nor an MRI for the following reason. Bombón came to me originally with several bones broken and two spinal cord fractures having been abandoned and hit by a car. She had been dragging herself along the road for days. She had a small injury on her head with blood. The vets are pretty sure that her epilepsy is caused by scarring on the brain from that injury. She had to have her spleen removed some time after the accident, the spleen helps inhibit tumor growth, without a spleen tumors can grow out of control very quickly. If the epilepsy were caused by a tumor, they feel that she just wouldn't have lasted this long, and in between times been so happy and playful. She had been having occasional seizures for some time but always when she had a urine infection, and we didn't understand why, it seemed to be some kind of "febrile convulsions" thing. She would be fine for months, start with a urine infection and have a seizure. She never had more than one seizure at a time, before the cluster/status she had in November. The vets feel that her seizure threshold is lowered by her urinary infections, which have been a problem that have plagued her from the beginning. To add to it all she is hypothyroid but medicated and under control for that. So doing a CAT or an MRI might confirm the scarring, but I don't see it would help much in improving her treatment, and operating here in Spain on something like that is virtually impossible. I have many other disabled pets here, some my own and some fosters, and I can't really afford or justify the expense unless it is a possible cure. I can't think of a situation where the CAT or MRI might lead to an improvement, neither can my vets, so they have advised me against doing one.

Anyway, I have some small good news. Bombón was quieter last night and is very quiet today. I took her twice to the bathroom and for the first time in a week she didn't scream the place down. She just complained a little as I emptied her bladder, which is normal for her. Also she seems to be starting to react to me touching her, i.e. calming down if I stroke her to reassure her etc.

Of course, now I am worried that maybe she is too quiet...

Critters, I am going to try and make her a den!

Will write later, she just moaned...

Thanks again,
Debbie

[CarolC]

Oh Debbie,that's the most precious picture. I tried to find a link but was short on time. I know it's not the same thing but going from memory (Bendy's) Mimosa who was brain injured through anaesthesia took a month to recover. I hope Bendy or someone will confirm or correct this. I'm only trying to say it took more than a week for vision to return in that case. I think you need to worry about caregiver breakdown where your nerves just go. For your own protection against that I would suggest you get some earplugs or headphones so the crying will not go right through you and make you break down further while you give her as much time as you can. I am so sorry. When you say this is the hardest thing you have been through, that is saying a world.

And check your PMs, I am sending you something.

[Debbie-Spain]

Thanks Carol, I got your PM too. I think we're just going to have to wait it out. It's difficult because of the screaming, you always get that nagging doubt that maybe you're reading it wrongly and life is too unbearable for her. But I think she is slightly calmer, we just had a screaming session now but it was because I opened the door to go outside, I think (not sure how she knew that, probably the waft of air from outside, she doesn't seem to be able to see or hear at the moment). She sleeps through the night with me next to her and hardly complains. Usually after seizures she is very clingy and this is very exaggerated clingy. After her last status episode it took her weeks to regain her vision, so I think we'll just have to see how it goes. Hope she doesn't have any more seizures and see if she improves little by little.

I'm worn out, but coping, the less she screams the better I cope It's more of a physical thing, I'm tired, but not stressed like I was while she was still in status with the seizures... I don't know of anything that is that stressful, I really don't.

She just took her first rather wobbly "steps" forward, not sure if it was by accident, but if it was intentional it was an improvement. Problem is protecting her when she falls, I have everywhere covered in blankets and cushions but she manages to find the spaces...

Thanks again

Debbie

[nez]

Good morning,just wondering how your cute fubaby is doing??I pray she is doing better,,,,nez

[Debbie-Spain]

Thanks Nez, I haven't seen any major improvements but I think there is some minor improvement. She is quieter for longer, and seems to be a bit more stable. She still has the screaming fits but they are not as violent or as long-lasting, she tends to stop squealing and start moaning. If I lift her up to take her to the bathroom, she screams. But if I wrap her tight in a towel, she stops screaming. She is starting to try and move forward with her front legs but having some trouble coordinating her head and body to go with them. If I lift her rear end she will try and run forward with her front end but her head ends up on the ground. It does remind me of the cerebellar cases I have had. I don't think she's strong enough yet to go back in her wheelchair, but may try in a few days. I've decided we're just going to have to take things slow and hope the little improvements continue. If we can keep her seizure free maybe we are in with a chance of carrying on. I've added artichoke to her diet to try and keep her kidneys detoxed and have ordered melatonin which supposedly might help with the epilepsy as her attacks tend to be during the night/very early morning. Next week we'll do a check on her phenobarbital and potassium bromide levels and I'll ask them to check liver and kidney values too.

So, we're keeping busy. Fortunately I work from home so don't have to leave her, how anybody could do this if they have to go to work I really don't know, it would be very difficult, it's virtually 24-hour care at the moment.

Will let you know if there is any change,

Thanks again

Debbie

[nez]

Ahh,bless that little furbaby,saying a prayer she gets better,never give up hope, ,,nez