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Nothing is Working!
Posted: Thu Dec 14, 2017 3:03 pm
Hello all, I am new to this forum, but am hoping for some direction from those who may have or also currently experiencing the same thing.
My boyfriend and I got our Aussie from his aunt who is a certified breeder (for 20+years) and does dog shows. Darby's (our Aussie) dad came from another breeder and his litter is the only one that she has had problems from. Darby's dad passed away suddenly over the summer, we were never told what caused the death. We got Darby in August of 2016 and had absolutely no problems with him. He was a happy, healthy, Australian Shepard. In June 2017, he experienced his first seizure.
He has Grand Mal or generalized seizures. He had the first one, then 5 days later he had a second one. We did bloodwork after that one and it came back clear. 10 days later he had another and the day after that, another. He was put on 1 1/2 tablets of 32.4mg of pheno twice a day. That worked for about 1 month and then he had two in one day. We were told to give him a dose of Pheno after he has an episode at this point. We went almost 2.5 months without a seizure, and then in October, he had 3 in one day. We brought him to the ER and were instructed to give him a dose of his pheno every 6 hours instead. We did bloodwork the following day and levels were normal. At this point we increased the Pheno dosage to 1 tablet of 64.8mg twice a day. We went two weeks without a seizure and then he had 2 in one day. These two seizures were also longer and different movements (still grand mal) from any previous episode. We increased Pheno to 1 1/2 tablets of 64.8 mg twice a day as well as adding 500mg of KBr twice a day. This worked for 2.5 weeks and then he seized twice again (also longer/different than earlier ones) and he also began to vomit throughout the day. Brought to ER and did bloodwork and everything came back negative. Was taken off KBr, just in case it caused the nausea, and added 750mg of Keppra twice a day (it is the extended release tablet), Pheno was kept the same.
This brings me to now. He had two seizures on Monday (12/11) which were shorter and more like his first few seizures as far as movement. The following day his third eyelid was showing and coming/going in his left eye the entire day. We've also noticed in between the 3 weeks of the episodes, he has had diaherrea, been lethargic, ataxia (which I know is a cause of meds), balance is off, he is pacing, licking his paws a lot, drinking a lot less. We did a stool sample and that came back negative and will be getting bloodwork done again next week.
My boyfriend and I are at a loss. We don't know if we should keep trying different meds (its becoming financially difficult for us with tests, visits, and medication and both of us are full-time students and working full time) and his quality of life seems to have decreased in these few weeks. I read about another medication called Zonisamide. Has anyone every tried this med? What other medication should we try? Is he in the very small percentage where no medication is gonna work? Is it time for us to start considering possibly putting him down? Is this actually idiopathic epilepsy (our vet is convinced it is) or is it possibly he has a brain tumor. We want what is best for him and we are trying to figure out what that "best" is. Any and all help, advice, similar experience is greatly appreciated! TIA!
Darby, 2y/o, Purebred Australian Shepard
First Seizure: June 13, 2017
Last Seizure: December 11, 2017
1.5 tablets of 64.8mg of Phenobarbital, twice a day
1 tablet of 750mg of Keppra -- extended release, twice a day
Re: Nothing is Working!
Posted: Thu Dec 14, 2017 3:56 pm
I'm so sorry you're going through all of this. Our Jake was an Aussie so I have a very special place in my heart for them. This disease is wreaking havoc with this breed.
I don't know of many Aussies that get control, but do hope Darby shows us all how it's done. We never got control but Jake lived with it for many years. He seized on average every 2-3 weeks and clustered off and on.
Two years ago his third eyelid did exactly what Darby's did. He was diagnosed with Horner's disease. A couple of weeks later he suddenly couldn't walk, and could barely hold his head up. He was then diagnosed with Vestibular Disease. He came from that and was just about back to his normal self and they believe small blood clots broke lose in his head causing him to go back to being off balance and out of it. They suspected a brain tumor but since we couldn't afford an MRI we had to wait and see. It was very hard to do but little by little he came back to us.
If you can, you may want to consider going to a neurologist to get a second opinion. They deal with this all of the time. We were so lucky that our vet consulted with one on our behalf. Maybe yours can work that out for you too.
Some here have used Zonisamide with success so maybe someone can chime in. Do you use rectal Valium after a seizure?
From what I've heard somewhere between 30-40% of seizure dogs don't get control so you are not alone. There's always a possibility of a tumor but the only way to know for sure is with an MRI.
We were told in the very beginning that keeping Jake happy was half of the battle and even dogs that get control can be miserable. There were times when we really didn't know what to do and I guess it does come down to whether they're happy most of the time, but you also have to give them time to adjust to meds changes and clusters. It can take a few weeks. Jake didn't have a problem with throwing up, but there are trials being run where they're thinking that gut issues could be connected to seizures in dogs. So you may want to add a probiotic to his food just to try. If your vet isn't also holistic you may to consult with one to see if any supplements will help. One you should consider is Milk Thistle to support the liver.
These seizures can change on a dime. Some are mild, and others can be terrifying. There's no rhyme or reason sometimes and finding your way through this maze can be so hard.
I do hope you get a breakthrough very soon.
Come back when you need to.
Re: Nothing is Working!
Posted: Thu Dec 14, 2017 6:11 pm
I'm afraid we won't ever get control, but still hoping for the best!
I've read a few articles about Horner's disease, but he doesn't seem to show other symptoms such as droopy eyelids and sunken eyes. It will be something I ask our vet about next week though.
We have definitely considered seeing a neurologist, but we are holding off for a little longer, just to see if we get a breakthrough. I will still ask our vet about her consulting with a neurologist though, second opinions never hurt!
I'm still learning about the world of seizures! I did not know until today that seizures go through a waxing/waning phase or a good/bad phase. That helps comfort me more about the ones he had in October and November. I also learned that we are not supposed to be cutting his Keppra extended release in half. We were never told not to do this, we never asked either. We just assumed since they are horse sized pills, cutting them would be easier for Darby to take. In the day and half that we haven't been cutting them in half, we have already seen improvement in Darby, which also makes my heart happy. I am interested to see how the changes (hopefully positive) now that we are not cutting them in half.
I do appreciate your input and predict myself to being on this forum, almost daily. From reading around this forum, I already feel more positive about our situation and happy to have found a community that is willing to listen and provide their insights.
Re: Nothing is Working!
Posted: Fri Dec 15, 2017 6:46 am
So Sorry your little one began having seizures. It's not easy to deal with, or treat, but hopefully you find the right meds and regimen for better control. I can't say very much of your dog's condition, other than if you think he needs a neurologist to consult, don't hesitate or wait too long, it can take a couple weeks to get an appointment to be seen. Like Lynne said, she's right about all she said.
Be positive, optimistic, but also mindful (of everything) and ask a ton of questions. NO medicine or regimen will cure having seizures, but they sure can help increase time between episodes and decrease intensity/frequency. Keep expectations realistic...seizures are pretty unpredictable. One thing you will see, when you have the good days, you will cherish and relish them. The not so good days will test you, and teach you a level of compassion you never knew existed. No matter what, the love carries you. Also, keeping a journal helps. In it, you write the dates, time, duration, what the seizure looked like, med changes, questions for doctors, anything that has to do with your dog's condition and care. Bring it on appointments, it helps.
My dog was on Zonisamide (plus other meds). We were told it has fewer side effects and is good at diminishing clusters and intensity of seizures and for dogs that are on pheno (or other) and need an add on. My dog had Pug Dog Encephalitis, a rare, progressive and aggressive encephalitis and there is no cure for it. Despite her having PDE, Zonisamide was amazing. The initial side effects we noted were hunger, thirst, sedation, but it was pretty mild and it went away after a few weeks or so. Also, it was not expensive. It cost less than 20 dollars for 100mg pills, 60 count. My dog was started on pheno and that worked for a time. When we couldn't increase, we added Zonisamide. After adding it, she went 4 months seizure free and it was the best 4 months she had during her entire illness...so we're thankful for Zonisamide. She was so well during that time, you'd not know she was so sick. She was a good 98%-99% normal during those 4 blissful months, that is compared to her pre-illness too. Zonisamide reduced her seizure clusters, duration of seizures, and intensity of her episodes for the remainder of her illness (11 months at the time was the remainder). Zonisamide was a really good med for her and I feel it is a really good anticonvulsant. It may help Darby. Zonisamide is given to dogs that have idiopathic epilepsy too.
Yeah, some pills you cannot break open. If an extended release, if broken, it isn't extended anymore...sometimes, you may not think to ask that question, especially when you're new dealing with seizures, meds, and the emotion of all that is going on. That is one area the journal will help in the future. You'll think of questions at a time when all is calm. If you have trouble giving meds, try pill pockets, home made ones of meat (unseasoned), peanut butter (make sure it has no Xylitol in it), or cheese.
Quality of life, and you know your dog. This is the mindful part. Anything strange, different, note it, ask doctor. No question is silly, or stupid. Communication with doctors is integral. Something is concerning you don't be afraid to discuss anything with them. Not that you can't ask here, we all share stuff. The forum is awesome support with tons of information, we know what you're going through, and here are people who care too. I have learned so much from everyone, and picked up some tips that helped me with my dog and her illness. Sometimes, it is just comforting to talk with people who know....by experience. I think you would know if your dog ever comes to 'that time'- it is like no other and if unsure, take them to the vet, they will tell you. Dogs with idiopathic epilepsy can live a full life, and have many many happy days, weeks and months between seizures.
If you want to find decent prices for your pet's meds, you may want to try GoodRx.com, which is honored at most major pharmacies even for pets. it will find the best prices in your area. I don't think Walmart takes GoodRx for pets though last I checked. Allivet.com, DiamondbackDrugs.com, and PetPharmacy.com are also good to use. Through these, I got my dog's medicines for SO much less than if not used. If money is an issue being in school and working full time, I found saving every week put aside just for her and using whatever I could to save on her medicines/treatment helped lessen financial stress. I know many who have a dog on more than one seizure med doing well. Also, never forget to ask about bloodwork and how often should you need to add on or change medicines. Sometimes, adjustments have to be made for whatever reason. It does take some trial and error to find what works and what is best. Also, Zonisamide, it didn't require any additional bloodwork for serum levels. There is no test for serum levels in Zonisamide as far as I know and she was on it 11 months.
Let us know how Darby is doing and good luck with your Darby and his condition. I hope you and his doctors find what works for him. Hopefully soon, things will get better. Sorry this is long...
take care of you too,
Re: Nothing is Working!
Posted: Fri Apr 13, 2018 8:28 am
My baby started vomiting the next day after he took his first potassium bromide pill, he didn't get any sleep at night. The vet took him off the pill. He was 2 yrs old when he had his first seizure.
Re: Nothing is Working!
Posted: Fri Apr 13, 2018 8:39 am
Yeah. We ended up putting him down mid-January. He had 5 seizures over MLK weekend and all the vets in my town were referring us to a neurologist at that point. My boyfriend and I couldn't afford the 3k+ for an MRI and testing, so we came to the extremely tough decision to put him down. He was only 2.5, hardest day of our lives, but comforted in knowing he's living a much better life over the Rainbow Road.
Re: Nothing is Working!
Posted: Mon Apr 16, 2018 6:00 pm
I am sorry to hear you had to put Darby down this Jan. - it's never an easy decision by no means, but like I said YOU know your dog and when it comes to that time, it is like no other. Like with my dog, Buttercup, we knew when her disease (Pug Dog Encephalitis) took over and no amount of treatment or money was going to save her, it's incurable. But know that seizures are incurable as well. Still very heartbreaking. I wish there were words of comfort I could say, other than, both our fur babies where they are now, they are young, happy and free from their illness and with our loved ones long passed. Watching over us, still loving us and will meet us when it is our time.
We could never afford the MRI for Butter, so don't feel bad about that- An MRI for your dog might not have found a reason for Darby's seizures. Plenty of families cannot afford the cost of MRI/spinal tap, cat scans etc. all at once, especially when you are there in the vet ER, needing a hospital stay and treatment, which is very expensive on its own. My heart goes out to you in the time of your loss of your beautiful Darby.
Many blessings and much love,
Re: Nothing is Working!
Posted: Tue Jun 26, 2018 8:05 pm
Wow I am SO sorry you ended up losing your baby. Shocked to see that it came to that. Going thru this with my dog makes me so hesitant about adopting another dog - I simply cannot go thru this again. Our dog is 14, seizures are getting more intense, but nothing like what you experienced. I hate that for you, but you did everything you could do.
Re: Nothing is Working!
Posted: Tue Jun 26, 2018 8:58 pm
It was super hard and the healing process was difficult. A week after he passed, my boyfriend and I got a tattoo of his pawprint. Come end of April we started playing with the idea of getting a puppy, I was still hesitant because I didn't think I was ready and then life had a funny way of things and someone we knew offered us one of their puppies. We gladly we took him and it's honestly helped with the healing process. It's more lively in our house and it's great to have another member of our little family. We knew right after we put Darby down that we would be get another dog and that it would be as much of a mutt as possible. Our knew little guy, Cliff, has 6 different breeds mixed in and is happy, healthy 16-week old puppy. I know healing time is different for everyone, but my boyfriend and I are back at a happy place. While we miss our old dog, and think about him everyday, and even looking back on pictures still makes me tear up, I'm glad he's in a better place no longer suffering.
I wish you the best of luck and a lot of happy days. Everyone says it, but it's a horrible and unforgiving disease. This forum helped me a lot during the hard times, and I hope it does the same for you. This community is so welcoming and loving.