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Still trying to figure all of this out

Posted: Wed Jan 20, 2016 8:07 pm
by pgbsab
Hi all...I have been reading non stop since my Duncan (golden) was diagnosed with Epilepsy in November (13 months old). Duncan's first seizure was July of 2015 (nine months old) and we took him immediately to the vet and they said that it might just be one of those things after his blood panel came back normal. We were fine until the first week of November then we had the first cluster experience. He had two grand mal's within about 30 - 45 minutes and I rushed him to the vet. One of the things I noticed was he squints prior to seizures, almost like the light hurts his eyes. While at the vets he had his third after continuing this behavior, but the post phase was terrible. He was in a total panic attack, screaming, thrashing and they gave him two shots (began with an M) to try and bring him out of this. We had to rush him to the neuro vet and they kept him a few days. They started him on 2000 mg of Keppra XR (generic) a day...we were good for 6 weeks.

We had a short breakthrough focal seizure and he was fine for another week, then we had a severe grand mal and I rushed him to the neuro vet and he then began to cluster, and he was there for 5 days and they added pheno and had to give him a valium drip to stop the clusters. We were good for 11 days and we were back in the neuro vet for another night stay with another cluster event. They increased his Keppra XR to 3000 mg a day and kept his pheno the same. They did blood tests and found out he was at 20, which is at the low end so there is room to increase if we need. We did have another episode where it was like he had a silent seizure, he was acting funny, skittish, afraid..came out of it, then about an hour later and did it again but came out of it. Talked to the neuro vet during this and she said that this was seizures just not manifesting them the same...we put him in a dark room in his kennel per the vet's instruction for an hour or so and then he has been fine until tonight.

We came home and he was acting crazy hyper, we noticed the squinting and panting signs usually that he is pre-seizure. We isolated him, tried to keep him calm (hard with a golden) and after about 40 minutes or so he calmed down and he has been good ever since. We fed him, gave him his meds a few minutes early to try and get them in him a little sooner....we are absolutely anal about giving his meds on time...we have the vets permission to give them a little early on the few times that we have needed to due to plans...but normally we are 7 a.m. and 7 p.m. The vet says that they are hoping for 30 days seizure free, that is considered controlled, we are obviously hoping for a little better, understanding full seizure control will probably not be realistic and we might not even get 30 days. Our neuro vet office said, this will take time to get meds right and we may have to continue to tweak for some time.

With all of that said I have a few questions and would appreciate any insight you can give me

1. Can Keppra and pheno keep them from going into a seizure when they are showing the pre seizure signs? Not sure even after all of my research if they will keep them from manifesting when they are obviously in the aura stage.
2. I have read that there is sometimes a "honeymoon" period with Keppra and many times the seizures come back, sometimes worse. Has anyone experienced this? Did adding more keppra help. The vet, really likes keppra due to his age and little to no side effects, but there will be is a cost factor here that we need to consider here as well if the Keppra keeps being increased...right now we are fine.
3. I have him off all grains (Natural balance sweet potato and bison...he loves), have ice cream here in case he seizes and read about the ice packs (luckily have not had to use either)...any other things that you can recommend since he almost always clusters. The vet did tell us that there are other things we can do at home with meds, but we are not quite at that point yet...but is not ruling it out.
4. What kind of natural flea and tick do you use? I am terrified of adding back heartworm as well..I did not give him in December (hard freeze) and am afraid due to a possible seizure reaction. Any suggestions?
5. He is due for his annual shots...the neuro vet told me to wait another month to give his body chance to bounce back from his major issue in December...not sure about this...they said there is no link to the vaccines and seizures...I am questioning.

After my major meltdown in December (yes went into the ugly cry) I am coming to terms that my punkins will always be "special" and that he is with us because we will make sure that he has a great life for as long as he has on this earth. He still makes me laugh everyday, looks at me with loving eyes and is my personal foot warmer, drops his ball on my computer keyboard for attention and uses the cat as his own personal squeaky toy (no pet is hurt in this exercise!! haha)

Thank to all of you for your responses in advance...this forum has been a life saver for me.

Patty & Steve...Duncan's loving parents.

Duncan (Punkins)
1500 mg Keppra xr twice daily
1 1/2 64.8 pheno twice daily

Re: Still trying to figure all of this out

Posted: Thu Jan 21, 2016 10:41 am
by ShilohsMom
Welcome to the boards. I'm sorry you have found yourself here and it sounds like you have really been through the wringer the last few months.

Shiloh's had seizures for 5 1/2 years now and we've changed/added/removed meds so many times I've lost track. We did try the Keppra, both regular and XR and it had no effect on him so I stopped giving it. I wouldn't say it increased his seizures because he can have as few as 2 to as many as 16 during his 3 day seizure time. You might look into a discount drug prescription card like goodrx. I used it for his Keppra and it saved a ton of money. Use it now on his Zonisamide. It's a free card, they don't ask for personal information and you use it at a regular people pharmacy. You might ask your vet to test and make sure that Duncan is metabolizing the meds correctly. I wouldn't think that giving the meds when showing symptoms would be helpful as it would take too long for it to get into their system. Has your vet suggested liquid/rectal Valium to stop the clusters?

I don't think the ice cream will help with clusters but it does help get their blood sugar down as it can spike during a seizure. I use natural honey because I found myself eating the ice cream. :D

I don't use a natural flea and tick as living in Oklahoma ticks are awful and the natural stuff doesn't seem to work really well. I walk them in a wooded area every morning so ticks are a huge problem. I use Frontline Plus and Heartgard for the heartworm meds. So far Shiloh hasn't had seizures related to either of those or his annual shots. I have heard people say their dog has seized after their vaccinations, which is entirely possible or it could be coincidence. Seizures can be caused by pretty much anything, anxiety, stress, noises, lighting, weather, full moons, things in their diet etc. I spent months trying to figure it out but never could come up with anything so have resolved myself to just accepting that for whatever reason Shiloh's brain just misfires.

I'm sure you're vet recommended keeping a journal. I've found it helpful to write the seizures in red ink and all blood work, notes, vet visits etc in black. Makes it easy to distinguish seizure activity for the vet.

This will be a journey. It will be yours and Duncans story so don't get discouraged over all the really bad stuff you can find online. Each dog is different and responds differently. It's one of things that makes this monster so hard to deal with, there's no one-pill-fits-all. Try to be patient, it can take a while to find the right combination of meds. Hang in there, I think it's pretty safe to say that everyone here has done the ugly cry and we understand.

Re: Still trying to figure all of this out

Posted: Mon Jan 25, 2016 7:59 am
by Gentle Jacob's mom
The journey through canine epilepsy is so hard. I'm sorry this is happening. Trying to figure out what may or may not work for your dog is so frustrating because what works for some dogs to get control doesn't do a thing for others. We've tweaked Jake's meds so many times I think our vet had to start a second file, or cabinet, for him.
He's been on Keppra for over 5 years and in the beginning it seemed promising, but then we hit the honeymoon period and had to tweak things. We found out through peak and trough tests that Jake was metabolizing it way too fast. So we increased and didn't see a big improvement. Then another member here suggested 4x a day dosing with the same mgs per day. I thought there was no way we could do that because it was hard enough to do three. Not only has it worked out better for Jake, but for us too. We dose 6am, 6pm, noon, and midnight. Jake's seizures went from 1.5-2 minutes down to 25 seconds and the horrible post ictal pacing, blindness, and loss of hearing went away. We also got an average of another week between seizures. Jake's still refractory so that was a major victory.
If we see that Jake is acting seizurish we give him a homeopathic tincture called Calm and Rock Rose, and if that doesn't show improvement we either give him 5mgs of Valium, or 1/4 tab of Pb. If that doesn't work we give him 250 mgs of Keppra, but we rarely have to do that. There have been many times when he slumps down and if we're right there we can do ocular compression and acupressure and he will come out of it. It doesn't work every time but it has helped more than it hasn't.
We use something called Beneficial Nematodes for flea control. I grow organic veggies and initially bought them to fight off garden pests over 25 years ago. Then a few years later when I took our pets in for their check ups our vet mentioned that he hadn't found any fleas on any of our 8 animals (yes we had 2 dogs and 6 cats at the time :) for the last two checkups and that was during really bad flea seasons. Then one year I forgot to buy the nematodes and it was horrible. We had fleas galore because we didn't use conventional flea meds. I never forgot again. A few years ago we got a bad batch and again had fleas. At that point we did use Frontline but instead of putting it on one spot at the base of Jake's neck we put it in 4 four down his spine starting at the base of his neck. I found a new source for the Ben Nems and we've been flea and tick free since.
Ugly cries? Several years ago during the height of summer Jake ran away in our very dense woods within a few hours of having a seizure. Our neighbors came together and helped to find him hanging out in someone's yard on the other side as though he didn't have a care in the world. Meanwhile I was in the woods trudging through vines and trees, and I even fell in our creek. I emerged looking a lot like The Creature from the Black Lagoon crying my eyes out and screaming his name, as they pulled up in our car with Jake, happy as a clam, in the back seat. Not my proudest moment, but you know what, with what we all go through I think we're all allowed to have our ugly moments.
We've earned them.
I hope things are going better.
Take Care and come back when you need to.
Lynne

Re: Still trying to figure all of this out

Posted: Fri Jan 29, 2016 10:17 pm
by jaragr
Do try the ice bag on his back - as soon as you can. We never see warning signs - our dog is in a full seizure before we know it. The ice shortens the duration. Can't hurt to try it.

Re: Still trying to figure all of this out

Posted: Fri Jan 18, 2019 7:08 am
by AbbyandSam
jaragr wrote:
Fri Jan 29, 2016 10:17 pm
Do try the ice bag on his back - as soon as you can. We never see warning signs - our dog is in a full seizure before we know it. The ice shortens the duration. Can't hurt to try it.
Long-time lurker here as well.
This guy above tells good advice, tested and approved.