HELP! I can't take this much longer.

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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Loliz
Posts: 8
Joined: Fri Jul 21, 2017 12:28 am

HELP! I can't take this much longer.

Post by Loliz » Tue Jul 10, 2018 7:52 pm

Bailey is my yorkshire terrier. She started having seizures at 4 months old. No shunt detected. I declined MRI. It has been a rough two years. She was started on Keppra twice daily (this has to be compounded because she is only 8.5 pounds). After she kept having seizures Phenobarbital twice daily was added. This seemed to control most of them but after six months when we checked her bile acids they were elevated and her phenobarbital level wasn't even therapeutic so her neurologist suggested tapering her off the phenobarbital over the next four weeks and then rechecking the liver. She was doing fine on this taper - she only had two petit mal seizures that i saw that were not longer than a minute and she didn't even get post-ictal after them. Then, this past Sunday, the day after her last dose of the Phenobarbital, she had the worst seizure ever! it was awful. She seized with me for at least five minutes and then when I saw that it wasn't stopping I rushed her to the hospital. That total seizure was at least 15 minutes. They admitted her to the hospital and over the next 12 hours she had five more seizures - even breaking through the IV Valium. The neurologist recommended loading her BACK on the phenobarbital and then adding postassium bromide and when that became therapeutic trying to taper her off of the phenobarbital again.
So now she is on three medications - Keppra, Phenobarbital, and Potassium bromide. And she is a hot mess, poor thing. She is likely blind, can't walk, and just lays around. I don't know if this is post-ictal or coming from the medications. I don't know if she will get better. This is day two and so far it looks about the same to me. I think she must be miserable. It is really hard to watch her. She's only two and a half years old and I can't imagine her dealing with this for years. Part of me thinks I should put her down to end all of this and the other part just can't do it. My worst fear is her dying while she is seizing. it just seems like an awful way to go. I have to work during the day and every time I come home I wonder if I'm going to walk in to a deceased dog and know she died alone. I was thinking of trying CBD oil. Has anyone had any success with this and being able to come off of some of the other meds? HELP! Any suggestions are appreciated.

jaragr
Posts: 46
Joined: Wed Dec 23, 2015 2:34 pm

Re: HELP! I can't take this much longer.

Post by jaragr » Wed Jul 11, 2018 8:35 am

I have just put my dog on CBD oil last week. His seizures are grand mal, and I also have to leave for work and wonder what I'll find when I get home. He has just started having a second seizure in the same day, like 6 hours after the first, and the second one he kicks a lot harder and acts like he is eating the carpet. BUT so far, the seizures come about every 10 weeks, so he is on no medication. If he is going to feel like your dog feels, I'd rather not put him on anything. The CBD oil I am hoping will work miracles but remains to be seen. Plus, he is 14 years old now, so after a seizure, with his legs being weak anyway, he falls alot. We have to walk with him and hold him up. I feel for you. I often think I just can't handle this any more.

GentleJacob's Mom
Posts: 34
Joined: Wed Feb 14, 2018 11:05 am

Re: HELP! I can't take this much longer.

Post by GentleJacob's Mom » Wed Jul 11, 2018 10:03 am

I'm sorry to hear about Bailey. This disease is so heartbreaking and just about the time you think you're getting ahead of it it can let you know in no uncertain terms it's still very much in control
I do think what you're seeing now is the effects of the loading doses at the ER and the addition of Kbr. It can take as long as two weeks for loading dose effects to wear off and even longer for them to adjust to Kbr. Sometimes that can take over a month, but it also could be possible that the Kbr dose is too high. Unfortunate dosing can be very hard until you get it right. I was wondering why they didn't try Zonisamide before Kbr. As far as CBD oil the market is flooded with so many different brands now and since no one really oversees what percentage is actually in the oil it's hard to know if you're getting any. You can wind up spending hundreds of dollars and have an oil that has very little if any in it. If you can find a vet that is both holistic and conventional that has experience and success with a specific brand I would go that route. Another member here did her own trial too and tried 3 different types and one did seem to work. I can't remember if she listed the brand name though. Our vet ran her a trial also with very mixed results. She has had success with her dog giving him the Purina dog food for seizures.
I was lucky that I figured a way to work from home, but I know how scared you are. We lost Jake when he went into status last year. Many seizure dogs lose the fight that way.
I know this is next to impossible but try to take some time for yourself. This can be very stressful and you need time to breathe too. It's so overwhelming at times, but I do believe that these special dogs know when you're fighting for them even when they're really drowsy. So no matter how this works out please remember that you're doing all that you can do to fight a disease that can be relentless.
Keep us posted and take care.
Lynne

jaragr
Posts: 46
Joined: Wed Dec 23, 2015 2:34 pm

Re: HELP! I can't take this much longer.

Post by jaragr » Wed Jul 11, 2018 10:12 am

Lynne you are so kind and helpful. Thank you for educating us and giving us encouragement to keep fighting.

GentleJacob's Mom
Posts: 34
Joined: Wed Feb 14, 2018 11:05 am

Re: HELP! I can't take this much longer.

Post by GentleJacob's Mom » Wed Jul 11, 2018 10:28 am

Thank you for your kind words. I miss Jake every day and don't want to see anyone go through what we did. I do hope somehow you all start getting better treatments for this. I'm definitely not done fighting.
If there's anything I can do to help please feel free to contact me through CEN. We tried many different things throughout Jake's life some worked and others didn't.
The thread about CBD oil was posted on "Treatment and Maintenance Issues" on September 14, 2015 and the Subject is Cannabis Oil. I hope this helps.

Take Care,
Lynne

GentleJacob's Mom
Posts: 34
Joined: Wed Feb 14, 2018 11:05 am

Re: HELP! I can't take this much longer.

Post by GentleJacob's Mom » Wed Jul 11, 2018 11:04 am

I also wanted to say that sometimes our dogs can seem as though there's no way they'll make it years with this disease and then they turn around and show us how wrong we were. Jake's first seizures were horrible, and very long, and eventually his post ictal was horrible too. Both he and I were wimps and I thought there was no way he'd last more than a couple of years. One day he had a seizure and after he'd recovered but was very dopey, I took him outside to pee. He was walking well enough so while he did his business I started walking back to the house. I heard a sound behind me and turned to see him in a full trot heading toward me. I panicked because I didn't want him to fall, and as he trotted past me he gave me this determined, stubborn look, trotted up the steps, and looked at me like, "Are you coming or not." I couldn't believe what I was seeing. From that day on things changed. I could see him fighting back every single time through the 11 plus years. I can't say that every one of these amazing dogs will do that, because Jake had the market on stubbornness, but there's always hope. So don't give up. You could have another Jakie on your hands.

Lynne

Loliz
Posts: 8
Joined: Fri Jul 21, 2017 12:28 am

Re: HELP! I can't take this much longer.

Post by Loliz » Wed Jul 11, 2018 8:19 pm

Thanks jaragar and Lynne, you guys are a big help!
I'm trying to hang in there. I just don't want her to be miserable. I'll see how she does over the next couple of weeks but honestly, if it doesn't improve, I just don't know. She doesn't seem happy. She's pacing and standing in odd positions and trying to walk but just giving up when her legs don't work. My CBD oil comes tomorrow. The neurologist recommended a company called petreleaf. We'll see how she does on it.
Fingers crossed.

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