Going in reverse

This is the place for general questions about drugs, long-term treatment concerns, possible influences of other drugs (such as antibiotics, heartworm preventatives, or anesthetics) for epileptic dogs, and other concerns. Please note that we cannot make specific recommendations for individual dogs - for this, please consult your veterinarian.

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

Re: Going in reverse

Post by Deacon's Mom » Fri Apr 07, 2017 10:28 am

I'm sure I'm not the only owner of an epileptic dog who sometimes is afraid to say things out loud for fear of jinxing things. But I'm going to do just that. It's been a little over a week since we lowered the dose of Keppra for Deacon and he is really improved. I wouldn't say he is 100% back to his former energy level but he's almost there. He was able to go on a walk the other day and so we are going to try to slow build up his walks again. It might be that he can't get back to the distance we used to go but the fact that he's come this far is amazing.

The thing I really don't want to say for fear of jixing things is this... Deacon is five weeks seizure free. I think the longest we've gone is three weeks and that wasn't that often. He probably is sick of my random hugs but I can't help but be so grateful that he's not only still here with me but he's seizures have spread out.

Another huge relief for me has been finding someone to take care of him the weekend my brother gets married. It's hard to leave a pet with anyone but our dogs need a little extra care. I got so lucky and I reached out to the vet tech at the animal hospital who loves Deacon. She is the one who always does his blood work and just generally loves on him. She said she'd love to watch him and in my house so he doesn't get more stressed. I had started to devise a plan on how my boyfriend could split time between the wedding activities and trips home for the dog. Now I can rest a little easier about that.

Thank you Lovelight for your suggestion. I do keep records with some details but what you suggested may help as well. I don't know what i'd do without this group to come to, I think it's hard for people who haven't experienced it to really understand.

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

Re: Going in reverse

Post by Lovelight » Sat Apr 08, 2017 3:14 pm

Yes, I know what you mean about saying something, but just remember, right now, there is no medication in combination or by a singular medication that has completely reduced seizure activity to zero all the time-> there is no cure for seizures, as you are aware of that. And you know it is important to be grateful for all the blessings. I am genuinely happy for you, your family and Deacon when I hear he's doing good and gone however long seizure free. I pray he continues improving and that he's found the right combination and that you get/have the best regimen for him.

With Deacon, stay positive as best as possible, they pick up on our emotions and so the lighter we are, the less stressed they are. The less stressed they are, the more open their bodies are in healing. I think you may be surprised the closer he gets to the right doses that he may become more of his usual self. The fact he is getting better, is very good and being thankful for all the good is beyond important between your family and the heavens above. The love always carries you through, even when you may think it isn't. Congrats on finding someone wonderful who will watch Deacon while you go to your brother's wedding, which is a huge relief for you & your family and you won't worry so much since he will be with a vet tech. It's a good idea, I never thought of asking one who's cared for Butter to 'dog-sit'...

I find a lot of understanding people here. In comparison, you'd be surprised by some of the heartbreaking comments that my inner circle says, though they are well-intended. Some of them just don't get it. This site has been awesome, and I believe, heaven sent. :) May Deacon continue to do well. I'd love to see him go longer between episodes too.

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

Re: Going in reverse

Post by Deacon's Mom » Sun Apr 09, 2017 5:28 pm

Three seizures this weekend. Two in one day. I know after five weeks of nothing I should be happy. I think I'll feel better when we go a day without one. When he started having multiple days in a row with seizures it became hard because we didn't know when they'd break. I will be honest and say I'm not sure I'll put him through another stay at the hospital if they don't stop. He hasn't been a 100% since his last hospitalization and honestly I can't afford a $2,000 stay every month. I feel bad because if I was rich I'd be able to do it but sadly I'm not.

He's finally resting and asleep so I'm going to lay down with a book and give myself a break.

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 Apr 09, 2017 6:30 pm

You aren't alone. I don't know if it's the full moon, the changing season or what, but we had a rough weekend too. Jake also made it 5 weeks which for him is amazing. Then he gets punished by having three seizures, and after the first one, several post ictal "almost seizures". Two on Friday and another one Saturday. He's doing much better but dopey and ataxic from the extra meds.
I always try to give as much positive input here as I can, but watching a 13 yr old dog struggle after so many years...
The good news is, he gave me several grumpy, "thanks mom", looks today. I know when he does that he's coming back.
I'll keep you in my thoughts and prayers tonight.
Take Care,
Lynne

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

Re: Going in reverse

Post by Deacon's Mom » Sun Apr 09, 2017 7:49 pm

Deacon just had his third seizure today. After all three he fell right to sleep which is not his usual post ictal behavior. He spent the day walking into things and it seemed like he was having trouble seeing. I'm going to reach out to the animal hospital and our neurologist.

If they are going to have to drug him as much as they did last time to stop the seizures it might be time to let him go. He doesn't deserve a life where every time he has a seizure he has to be drugged so much he can't walk. It's just so unfair to him.

SpencerBhumi
Posts: 222
Joined: Sat Feb 11, 2012 9:25 am
Location: South Australia

Re: Going in reverse

Post by SpencerBhumi » Sun Apr 09, 2017 8:21 pm

Hi Deacon’s mum,

I’m sorry to hear the grief you are going through. This disease really sucks, both for our dogs and us. I know that all of us here want nothing less than a miracle cure to cover all of our pet’s ailments.

I used to measure Spencer’s vet visits in “overseas holiday money” because that is how much it was costing me in the early years. In the first three to five years we struggled, investigated and trialed assorted medications to control his seizures. By the fifth year we came to the acknowledgement that we were not in control but were chasing this disease and it was time to step back and evaluate an acceptable compromise.

We are now seven years down the track and Spencer is stable on Phenobarb and Potassium Bromide (plus milk thistle & taurine supplements). But he still fits about every 3 weeks – occasionally we have a good episode of five or six weeks seizure free. We know he is going to fit so our re-evaluation was to ‘accept this’ but aggressively treat the first fit to prevent it turning into both a dangerous cluster and more expensive hospital visit. I am blessed to have a caring, pro-active & learned vet who shows great integrity in looking after both Spencer & myself. The other significant part of ‘accepting this’ is to know that Spencer is not going to have the life I dreamt we would have. But he remains an important chosen member of my family. We still travel, camp, beach walk, couch cuddle, walk the block & the dog park - he is just not as alert, energetic or coordinated as he was before epilepsy visited us.

Glancing back through your story I read you are on Pheno, and Lynne suggested you might need a second drug. I see you are also on Keppra now. One or two (or more) drugs is neither losing nor failing but, it seems, just part of the journey for an epi-dog. This is part of the grievous journey we take with our epileptic dogs and sadly it takes a while to find out which drugs work well or not.

I don’t know if you have established one so I would recommend you talk with your primary epi-veterinarian about creating a personalised seizure/cluster breaking protocol. Discuss with your vet a plan to aggressively extinguish the fits early (at home) to reduce the chance of cluster development and to minimise expensive hospital visits. When Spencer has a fit we immediately treat him aggressively with Diazepam and a Levetiracetam loading, followed by a short course of Levetiracetam. I know this will leave him more dopey for four days but it is better than watching him cluster fit, traumatise himself in post-ictal confusion and me work an extra day to pay for a hospital visit. Invariably, after a couple of days on the post-fit Keppra load, Spencer will enjoy a period of bright, coordinated life - until the cursed epi-spring starts to slowly wind up again. It took us five years to get to this point – finding out which drugs are helping and which drugs did not. I felt the grief you are describing and I know the grief of not being able to provide more when it is needed. I hope you can obtain a much quicker place of being ‘stable’ and ‘acceptable’ in this disease than we did, so that you can get on with enjoying life with Deacon.

Don’t be discouraged in this journey. Persevere with a treatment plan – battle through the bad days (vent your grief & seek advice with fellow epi-dog owners here) and enjoy the good days for what they are – a faithful puppy in the good care of his loving Mom.

Keeping you in my prayers, and wishing you well.

Trevor & Spencer
Grateful for the good days, weeks (months).

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

Re: Going in reverse

Post by Lovelight » Mon Apr 10, 2017 12:05 am

Oh nooo, I am sorry to hear all you've been going through. My heart goes out to you and yours. I know it can be overwhelming, frustrating, frightening and everything in between. SpencerBhumi has some good advice there. And we're here for you. Prayers sent to you and your loved ones.

It takes time, and it could just be that Deacon isn't on the right meds or doses yet. There are other medicines that may be better for him, like Zonisamide. I was told by my dog's vets that Zonisamide is said to decrease clusters, has the least reported side effects (many report having seen NONE), it was cheaper than the other two (potassium bromide and Keppra), and it didn't require blood work. If side effects worry you, perhaps ask about Zonisamide. Buttercup has no side effects now from Zonisamide and she has been on this 7-8 months, four of those were seizure free. Initially, she did have increased thirst and chills, which went away within weeks after her breakthrough, as she did have other meds to stop her seizures. but it has done wonders for her and her condition, only costs me under 20 bucks for 60- 100mg capsules of Zonisamide. Clorazapate costs me a dollar a pill (three dollars per episode -> the protocol is one pill every eight hours for just ONE day), and her rectal valium costs me 46 dollars for 5 doses, which is sure better than spending hundreds or thousands at the emergency. I know you've just gone through med changes and dose decreases, and Deacon hasn't been 100% but you may want to ask about Zonisamide and emergency meds to give at home so you don't have to take him to the hospital every time he has seizures. I find caring vets will allow emergency meds to administer at home to stop clusters specifically, especially since he's had three in a day now. Many caring vets will do what they can to help you afford treatment and they understand cost and the necessity of decreasing those ER visits for Deacon especially, and of course for his family. I am certain his vets will help you through this and will help you decide what is best for Deacon and your family.

You're a good mom to Deacon and we know you do your best daily, and you love him very much. SpencerBhumi said it best...keeping you and Deacon in my prayers. We're here for you too. Lynne, I hope your baby improves as well.

sincerely,
Lovelight

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 Apr 10, 2017 5:52 am

Trevor and Lovelight are so right. Please don't lose hope. It really does take time. Sometimes a few years to get the right regimen in place to get a win. We've been back and forth several times, and outside of this weekend we've been doing well for a refractory dog. Believe me it's not because I'm made of steel, although I do have my moments. It's because of Jake. I felt as though I was crumbling so many times over the years.
As Trevor and Lovelight said, go and speak directly with your vet and work out what is best for Deacon right after a seizure to prevent another one. While Jake's daily protocol has changed so many times I've lost count, what we do following the first seizure hasn't. We give Jake an extra dose of Pb, and a dose of Clorazepate, with extra Keppra for 5 days. We also have a plan B, but Jake hadn't had seizures like this weekend for so long, I'd forgotten. Luckily I dug out my old notes and found the Pb and Keppra protocol, started that and so far he's okay. As far as Deacon falling asleep after the seizure that's exactly what Jake started doing when we finally started to turn a corner with this. Instead of being a blind, deaf bull in a china shop, he started falling into a deep sleep. The first time it happened I thought he was dying, or in a miserable hell, but our vet told me that it was better for him because he was resting and his brain was getting a chance to recover from the seizure. Jake sometimes still has sight problems but it's temporary. Our vet has also worked with us to keep emergency visits unnecessary. What we do may be completely different than what someone else does, but they can work out what is best for Deacon.
I know this is so hard. The relationship we have with our epi dogs is so special and every time we hit rough patches, it feels as though we've failed them somehow. We haven't, and you haven't. I know without question that Deacon knows you're fighting hard for him. I also know that sometimes it can feel as though the bad is outweighing the good. Sometimes it does, and I can always tell when our friends and family are thinking this is too much. That it controls too much of our lives. But as with Spencer, Jake goes on vacations with us, and we hike all of the time. Our other dog carries a doggie backpack with his meds, and that makes her feel as though she's really special. In those moments this disease is just a fragment, and I can't imagine life any other way.

I truly hope things calmed down for you and Deacon.
We're here for you anytime.
Lynne

ShilohsMom
Posts: 818
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Going in reverse

Post by ShilohsMom » Mon Apr 10, 2017 9:52 am

I am so heartbroken over Deacon and Jake's recent seizures. While I have never met you or them there is a bond that's created by people who share the same heartache and I feel your pain. It's a helpless feeling not being able to make things better, especially when we live in an age with such an advancement in medical technology. I think that no matter how much money you throw at this horrible disease, it doesn't make it better. It can alliviate the worry about the finances, but I know with Shiloh his ER visists, MRI's, spinal tap, meds, none of that helped with getting the beast under control. I'd take him to the ER and an hour after getting him home the next day he might seize again. For what I spent I could have a brand new SUV, a really GOOD SUV!!!! I think the most important thing we can do is hold onto the fact that we do the best we can at the time with the resources we have. That the decisions we make are based on our love for our furry babies and when we do that, we're always right. Hang in there, don't give up your hope and find comfort in knowing that our hairy ones love us unconditionally and it'll be OK.
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 » Mon Apr 10, 2017 3:00 pm

We lost Deacon today. He started with seizures yesterday and our usual rescue regime did nothing. We brought him into the hospital to see the vet. This morning he went into a seizure and he was still so rigid and his face was still twitching. He was aware of me being there with him and was doing his best to try to follow me with his eyes but the seizures kept coming. He then lost all level of functioning. I'm still not sure I made the right decision when I told the vet it was ok to let him go. I had promised him I'd always fight for him. Four medicines, two more medicines for a rescue regime. Essential oils in hopes a holistic solution would work. I will always wonder if I should have fought harder and longer. 2.5 years was not what such a sweet and loving dog deserved. He was the best dog my family has had. I put my forehead to his as I often did when we were cuddling. I told him I loved him.

I've been crying and laying in his bed. I wish I could tell him how sorry I am and that I'm sorry I didn't do more

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 Apr 10, 2017 4:03 pm

My heart is broken for you. It will take time but I do hope you will eventually know that you did fight very hard for him, and he knew that. You are a great mom, and you knew in that moment that it was the right thing to do. No one knew Deacon better than you did. You did the right thing.
I'm so sorry this horrible disease took him from you.
My thoughts are with you.
Hugs,
Lynne

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

Re: Going in reverse

Post by Lovelight » Mon Apr 10, 2017 5:05 pm

I am so sorry to hear of Deacon's passing, my heart goes out to you. Never an easy decision, but you knew him and everything he was going through and I believe you made the best decisions/care that you could at any time. We all work with what we got. I am sure he knows you all love him so much and of everyone's efforts to help. Please be kind to yourself, and not think with could have should have would have's. You have to know that after how many medicines, day after day giving them and caring for him throughout, emergency care, and the other stuff you gave him to help was trying hard for him. IE and diseases that cause epilepsy are all so difficult to treat and endure. I hope you come to realize that since he was so sudden and unresponsive to medicines, it is possible he had something more than idiopathic epilepsy. I am sorry for your loss.

May you and your family find some peace and solace. Prayers, light and love to you and your family, and to your beloved Deacon.

Sincerely,
Lovelight

SpencerBhumi
Posts: 222
Joined: Sat Feb 11, 2012 9:25 am
Location: South Australia

Re: Going in reverse

Post by SpencerBhumi » Mon Apr 10, 2017 5:43 pm

I am sorry to hear of your loss.

Deacon came to you for a reason, and you cared for him through this tough disease. There are no winners with epilepsy but you stayed with him until the end. Now only time will ease your hurt.

Just know that you were a great mom to Deacon.

Keeping you in my prayers.
Trevor.

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

Re: Going in reverse

Post by Deacon's Mom » Mon Apr 10, 2017 6:29 pm

thank you for all the kind words, in a day or two I will respond more.

Right now I'm just wondering if anyone knows if there's a way to donate his unused medicines to those who might be able to use it. I have potassium bromide, phenobarbital, keppra, Valium and a pill for post seizure whose name escapes me.

ShilohsMom
Posts: 818
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Going in reverse

Post by ShilohsMom » Mon Apr 10, 2017 6:34 pm

I am so incredibly sorry and my heart breaks for you over the loss of Deacon. Some of what you wrote reminded me of what happened when I lost Shiloh and know how hard it is and the doubts about the "what if I only ________". You were a great mom to him and you did everything you could, sadly with this monster sometimes that just doesn't matter. While his life on this earth was way to short, what he gave was more than most humans give in a lifetime. I know it doesn't feel like it now, but you gave Deacon a gift, a gift of unconditional love, putting his needs above yours. It's the hardest decision to make to let them go but the most unselfish. It will get better but does take time. My thoughts, heart and prayers are with you.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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