Going in reverse

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Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Going in reverse

Post by Deacon's Mom » Mon Feb 27, 2017 8:30 am

We had managed to get Deacon's seizures to one a month. We were using a combination of potassium bromide and phenobarbital. This had been working well and we were happy with one seizure a month. Two weeks ago he had three seizure in one day but he recovered well and we had hopes that he'd stick to his one a month even though this episode was not his normal. On Saturday morning I woke up to him having a seizure which is unusal because he tends towards having them around midnight. I gave him a dose of his meds which is our normal procedure. He seemed fine and a little while later I took him outside for a bathroom run. He had a seizure while we were out and then while trying to get him inside he had another one. I then got him in and gave him his rectal valium. He was fine the rest of the day Saturday. On Sunday around noon he then had another seizure which was less intense then most and I gave him his medicine and called the neurologist. They said to bring him up to the hospital. He was so out of it my brother and I carried him in a blanket to the car. (He's 150lb mastiff, it takes two of us.) We got him to the hospital and he actually managed to walk in on his own. They took him and started running blood tests right away. It came back that they were pretty good but he was dehydrated. (No surprise at this point.)

The vet laid out our options that we either hospitalize him so they could monitor him or we take him home and give him additional meds to try to break the cycle. We decided to bring him home because if we needed to come back we are five minutes from the hospital and this way he could be at home with all of us. The vet goes to fill out his paperwork and comes back ten minutes later to say that he'd had another seizure while in back and they were hospitalizing him. He had another about 20 minutes after that as well. Overnight they had him on valium but they took him off of it this morning and today they said he hasn't had a seizure since yesterday afternoon. The vet who was with him overnight said he's not as groogy and he was becoming more normal today. She said in addition to his usual meds they gave him some keppra this morning and diazepam. If he goes 24 hours seizure free they will let me take him home later this afternoon.

Once he is stable we are going to have to decide what medications he's on going forward and what we can do to keep this from happening again or even if we can. It is so difficult because we had been managing so well and then all of a sudden we really went backwards. He has never had this many seizures in one month let alone in one weekend. I'll be honest a couple of times this weekend I thought it was the end for him but we are going to keep fighting and trying to give him a good life. He's only 2.5 years old and he's got a lot of life left that he should get to live. I'm just hoping we can get him back to a good place.

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: Going in reverse

Post by Gentle Jacob's mom » Mon Feb 27, 2017 5:53 pm

I'm so sorry that you and Deacon had such a rough weekend. Clusters are so scary. This is one of the most screwed up things about this disease. You think you've found the right combination, and start feeling like everything has finally fallen into place and then this stupid disease lets you know it's still in control.
Keppra worked for Jake when we added it on after he started clustering and I hope it will work for Deacon.
Let us know how you're doing.

Lynne

Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Re: Going in reverse

Post by Deacon's Mom » Tue Feb 28, 2017 7:53 am

They kept Deacon last night even though he'd been seizure free for 24 hours. Because of all the added meds he needed to break the cluster he was so sedate he wasn't even trying to get up or walk. Today we are 36 hours seizure free and according to the vet he is showing a lot more life today and they are confident that by this afternoon he will be almost back to normal.

They have been giving him keppra and it will be part of his new routine. My concern as always is are we going to turn him into a zombie dog with all these meds but I guess we will wait and see. Either way it's time for my boy to come home.

I try to laugh as much as I can when dealing with this terrible disease. They vet told me he was eating but it was really messy. I laughed and told her he's been a messy eater since he was a puppy, that is his normal! Don't all houses have a mop and broom just to clean up after their dog eats? lol

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: Going in reverse

Post by Gentle Jacob's mom » Tue Feb 28, 2017 10:49 am

I'm glad to hear Deacon's getting better! Even though Keppra has the least side effects it can still take a couple of weeks before they regain their "normal".
Humor will get you very far with this mess. You need a break where you can find it. When Jake had his first surgery from eating something he shouldn't have (the meds made him do it), they called from the hospital very concerned because he'd recovered from the surgery very well, but was just laying around not really wanting to do anything, and stubbornly not wanting to get up. They were concerned that something secondary was happening. I laughed and told them No, that that was just Jake. That's when he got the nickname Eeyore :) It's very fitting for him. When we think of his surgery, that's what we remember.
I hope everything continues to go well.

Lynne

Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Re: Going in reverse

Post by Deacon's Mom » Wed Mar 01, 2017 10:46 am

So I was told Deacon could be picked up yesterday at 4:30 pm. He was still not completely stable on his feet but was able to go out to the bathroom on his own in the morning. So I get there at 4:30 only to have them tell me he'll have to be brought out on a gurney because he refuses to walk. This is not ideal when your dog is 150lbs. I managed to get him in the car, get him home and get him in the house. Let me tell you I don't believe he was walking around yesterday morning. Last night the most he did was pick his head up and look at me, no other movement. I slept on an air mattress downstairs next to him. This morning I woke up to him dragging his back legs across the room. He can manage to get his front legs under him and he is way more alert but he is still struggling to get his back legs under him. I did wrap a towel around his back hips and I was able to assist him in walking just a little. But we can not manage to get outside so for now I'm using pee pads that I tuck under him. He's so big that it takes about three of them for bathroom duty. I'm hoping that we are able to get him walking soon just because he hates doing this, before he goes he tries to drag his body to the door and while he's going he cries. I feed him this morning but because he isn't stable enough to stand at his bowl I held it for him while he ate.

I had to take a day off of work today which I'm sure many people in my life don't understand but that's okay. Hopefully I have better news to report at the end of the day.

Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Re: Going in reverse

Post by Deacon's Mom » Fri Mar 03, 2017 9:35 am

Last night we hit a major milestone following Deacon's hospitilization. He was able to go down a couple of stairs on his own and got outside to go the bathroom. He is so much more himself and I'm starting to relax a little feeling like the meds are finally not dragging him down.

The only problem now is his paw was swollen after the iv he had and the vet said it should go down. It has a little but it is still disturbingly puffy. It's almost like he has a tennis ball at the end of his foot. I called the vet and I am waiting for a call back about it. This poor guy has had quite the week.

He did get to skype with my five year old niece who is his best buddy. The minute he hear her voice he seemed to perk right up. He was trying to lick the phone. She has a natural way with animals, it's very fun to see them when the interact. She drew a picture for him of her walking him and wrote feel better Deacon at the top.

Never a dull moment.

ShilohsMom
Posts: 814
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Going in reverse

Post by ShilohsMom » Fri Mar 03, 2017 9:50 am

Oh my goodness, I'm so sorry to hear all that you have been going through with Deacon and apologize for not getting on the boards more to check in. Could relate to the clusters and how scary that is, don't think you ever forget those moments that come when you think you've got the stupid disease figured out and living with a new normal, your world gets turned upside down. It puts you on pins and needles even more when the next seizure hits and you wonder if it's just going to be the one or a repeat. Shiloh weighed around 70-75 pounds and can't imagine trying to lug a 150 pound dog in and out of a car. Need to find you a wonder woman cape!!!! I'm glad to hear that Deacon seems to be doing better. The meds can really knock them on their rear for a while. Please keep us posted and I'll try to be better about checking the boards.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Re: Going in reverse

Post by Deacon's Mom » Fri Mar 24, 2017 12:26 pm

So Deacon has not had a seizure since we brought him back from the hospital which is a great leap forward. He recovered from his hospital stay and seemed to be almost completely himself again. I was away for about 24 hours, or really three pill cycles. My dad who is with him anyways was in charge of his pills while I was gone. I guess there was some confusion between him and I about what pills to give him. My dad ended up giving him an extra dose of phenobarbital instead of keppra. This past week he has beens struggling to walk and has been asleep almost constantly. I have to wake him up to take him out and he needs help getting his front and back legs up. I thought it was possibly because of the mistake with the pills but my family seems to think that it has only shown slight improvement. I have reached out and left a message for my vet. I'm just really hesitant to even think about him coming off the keppra we added last month because it seems to have helped us get him back to a better place.

Things are not good for me at work and I can't seem to clear my head enough to focus on what my next step is for helping him. Boy could I use some sort of break.

ShilohsMom
Posts: 814
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Going in reverse

Post by ShilohsMom » Fri Mar 24, 2017 2:15 pm

While I'm happy that Deacan hasn't seized since coming home I'm so sorry that he's having the struggle from the PB. Shiloh would have troubles for a while when his PB was increased but eventually would level out, hopefully the same will happen for Deacon. It's hard enough to watch them struggle but to have work be a problem too sure doesn't help. Not sure about you, but find a lot of people truly don't understand what our bond is like with our hairy babies and how much we worry about them. Maybe if you have to leave again it would be helpful to bag each dosage in a baggie with the date and time to be given?

Let us know what the vet says.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Re: Going in reverse

Post by Deacon's Mom » Sun Mar 26, 2017 11:11 am

We were going to try to wait it out and see if with time Deacon got better. Unfortunately he's now not walking, he's been asleep almost constantly. He hasn't eaten in a few days and barely is drinking. He hasn't gone the bathroom since last night. My mom feels strongly that it is not fair to him ifnthis is the only life he'll have. I've emailed the vet to let him know it's getting worse. I wish I knew what the answer was.

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: Going in reverse

Post by Gentle Jacob's mom » Sun Mar 26, 2017 3:46 pm

Has your vet checked his Pb or Keppra levels recently? It sounds like he's still overmedicated. Jake was way overmedicated on Keppra back in 2014 and it was horrible. It took almost 3 weeks before he could begin to walk without both my husband and I holding him up. I can't imagine how hard it would be with a dog that weighs 150 lbs. He couldn't eat unless we propped his head up either. One morning we rushed him to the vet because he'd gotten worse and I honestly thought that we'd lost him, but after a lot of adjusting of his Keppra he started coming back to us. Your vet will be able to tell. I'm not 100% sure how our vet knew what was going on as quickly as she did, but I do know that Jake spleen was enlarged.
I really hope everything works out.
Let us know how you are.

Lynne

Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Re: Going in reverse

Post by Deacon's Mom » Mon Mar 27, 2017 10:16 am

So I have not heard from the vet yet. I don't even know what to say about that. This is the first time I have felt like I'm having trouble getting him to talk to me. I will say yesterday morning I couldn't get Deacon up to go out, to do anything. I'll admit that I got desperate and gave him one less of his pheno because we had talked about working him off that further during the spring and I was getting no response from the vet so I was desperate. So I followed the proceedure we had discussed with the vet, I just started a month or so earlier then we had talked about. I know this is a big no no to handle medicine changes without the vet but Deacon had not moved in over ten hours. By about 2:30 we still couldn't get him to get up, go the bathroom, pretty much move at all. I was so desperate I got a shallow bowl and let him drink from it while I held it. He drank it right down. I tried to get him to eat but he was struggling with the bowl. So I ended up filled my hands and feeding him. He ate the equivilant of one bowl of food. With some help he then managed to go outside and go the bathroom. When we came in he then went over to the bag of food and started to chew on it. So I filled his food bowl up and he ate it all. After that he was walking around, he still was a little off but he was moving on his own. He was drinking water out of his regular bowl and was able to go up and down the three stairs to go outside. My parents and I literally thought in the morning that it was the end but by the time we went to bed he was so much different. He hasn't been on Keppra that long so he hasn't been tested for that. When he was in the hospital his pheno level was a little high and his Pb level was low.

I'm going to call the vet again now and see if I can actually get a response. I just don't know what to do. I feel like we dodged a bullet yesterday but I don't think we're in the clear yet.

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: Going in reverse

Post by Gentle Jacob's mom » Mon Mar 27, 2017 1:31 pm

If you don't get a response from your vet, if you can, I'd go to another vet. They should be working with you through this. That's their job. I'm sorry if I'm sounding harsh toward your vet, but they really need to be on top of this.
I hope they call you back and things continue to get better.

Lynne

Deacon's Mom
Posts: 46
Joined: Wed Mar 02, 2016 9:34 am

Re: Going in reverse

Post by Deacon's Mom » Wed Mar 29, 2017 1:39 pm

I want to scream, use every swear I know and kick a lot of things. But I'm not going to because I'm also really tired. lol

I finally after numerous calls talked to our vet. Deacon had been improving but by that I mean he can get up, he'll go the bathroom and he spends about two hours a day awake. Marginal improvement. He did steal my seat on the couch last night which he hasn't been on since all this started happening. So I called this morning and said I had to talk to the vet.

When I told him I adjusted Deacon's medicine on my own he wasn't happy with me. I explained we had already talked about doing it eventually and that it was so bad I was desperate to find something to keep him alive. He let it go after that. He is lowering Deacon's keppra (I had lowered his pheno) and we will adjust from there. He said we should see improvement in a couple of days. Obviously I want to believe we will see the improvement but part of me is so worried. Since being on keppra Deacon has gone 4.5 weeks without a seizure, this is by far the longest he's gone since his first seizure. When he was on the pheno alone it was every two weeks then every week (as his weight increased and our last vet didn't increase his dose to match.) With pheno and potassium bromide we'd gone every three weeks till the last seizure which ended up being like four seizures in 24 hours. (By far the worst for him.) I know keppra isn't the miracle drug for him but its hard to lessen the dose of a medicine that I've convinced myself has given us this break.

It's hard because quality of life has been coming up more and more in our lives lately. We thought we were going to be making that call on Sunday, we didn't have to. We are still worried. The vet doesn't seem to think it's as imminent but that's easier when you aren't with the dog day in and day out. But I will keep fighting for this pup till they tell me there's no fight left. I really hope I was given Deacon because fate, God, whoever knew I was strong enough to handle this because sometimes I'm not sure I am.

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Going in reverse

Post by Lovelight » Thu Apr 06, 2017 10:37 pm

I'm sorry your Deacon is having a hard time. It sucks when things are going good and then boom, something happens and you see them go through the effects and perhaps a 180 from how they were before. No matter how many times they have emergencies, or difficult times, you never get "used" to having to make adjustments.

This is what helped me see a little more clearly with really any issue. It's just a suggestion, and it helps calm me too as well going through this process. I find it helps me when my mind is overwhelmed with stuff and pressured to do something.

Take a moment and quiet your mind, then undertake the task of a timeline to write out everything that's happened since his last seizures. (A month ago?) So, Outline in sequence with space between to add things in order: last seizure, extra meds from hospital (and behaviors while in and out of the hospital) and while there also any daily regimen increases/decreases/medicine mistakes/additions, changes with his behavior, side effects and medical/condition stuff like that. Then you want to write in changes (on the same time line) pertaining to his every day functioning: eating/drinking, pottying, standing, walking etc and whether he did it on own or with help, etc. In plotting the sequence on paper, you might be able to see different connections and it will help you think things through. My dog's doctor loves when I do this, she says it helps her see things in different ways.

I can understand that you feel Keppra has helped Deacon in that he's gone his longest without having seizures (and that is wonderful in and of itself), but of course, your worry too is that he be able to enjoy that freedom in his daily functioning. I would not want my dog to be on so many drugs that she can't function (it would royally make me upset with all she's got going on with her). I understand that. Perhaps, maybe it is a matter of finding the right doses, and so I was wondering how is Deacon now? Is it better since the vet made changes?? I would LOVE for your Deacon to find his right combination of meds and to be seizure free for many months. You're doing the best you can with what you have, don't be so hard on yourself. ;) You're a good mom for Deacon. Stay strong and be kind to yourself as you go through this.

Let us know how he's doing.

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