121 days seizure free

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cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

121 days seizure free

Post by cesullivan » Tue Mar 26, 2013 10:57 am

UPDATE: 190 days seizure free, crossing paws.

:D
Since adding the 1,250 Potassium Bromide and weening her off the zonisamide, pheno and keppra, we are 121 days seiure free!!! A whole lot better than 4-5 cluster grand mals every 2 weeks!!!!!!!!!!!!!!!!!!!!!!!!

Thanks
Chris and Cali (and her big sis Bandit)
Last edited by cesullivan on Tue May 14, 2013 11:34 pm, edited 1 time in total.
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: 121 days seizure free

Post by Kipsmom » Tue Mar 26, 2013 9:44 pm

Wow, that is awesome! Would you mind sharing the schedule you used to wean Cali off the other meds? This is so encouraging to me.

My dog Kip was started on phenobarb after his first seizure episode, because it was a cluster. The phenobarb did a fairly good job managing the seizures, however Kip became very sick after about 2 months and he had to be rapidly taken off the phenobarb because his bone marrow was affected and his white blood cell count had dropped to almost nothing. He was immediately put on Keppra, which didn't work too well (still at 750 mg TID) so Zonisamide was added (currently 200 mg BID.) Seizures were still too frequent, so with the help of a neurologist, we are now adding KBr at 750 mg daily. Seems to be helping - it's only been two weeks on KBr, so we have aways to go before the KBr gets stabilized.

After a couple of months, if he's doing well, we may try weaning him off Keppra altogether. I'm sure our neurologist will have a good plan for this, but I am just curious as to your experience with Cali. Thanks!
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: 121 days seizure free

Post by cesullivan » Mon Apr 15, 2013 9:30 pm

Talk to your Neuro before removing any meds, but this is the schedule Cali's neurologist followed.

The Keppra did not have to be weened, so we stopped that cold turkey (leaving it to stop the clusters after the first one, we give for 3 days after her clusters begin).

The Zonisamide, she was on 400MG 2xs/day. We dropped to 300MG 2/day then every 7 days we dropped to 200, then 100, then 0.

After a few weeks, maybe a month of the Zonisamide being gone, we started the taper of her Phenobarbital. She was on one 64MG tablet. Every 14 days we dropped 1/4 tablet to 3/4 tablet, then 1/2 tablet, then 1/4 tablet then 0.

We did the loading dose of Potassium Bromide so she got up to high levels quick.

By the way, still seizure free 161 days!!!!!!!!!!!!
:D
Chris & Cali
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: 121 days seizure free

Post by cesullivan » Sun Jun 09, 2013 9:26 pm

and after 7 months of being seizure free, Cali has had 8 seizures so far today and has been at the ER since 10am :(

The classic signs returned, hid under the dining room table, knew it was coming, was just hoping it wasn't going to be as bad as it was. It started with one seizure on Wednesday and thought I was out of the woods until Saturday when she was back under the table hiding.

Upping the Potassium Bromide and Keppra.
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: 121 days seizure free

Post by Kipsmom » Mon Jun 17, 2013 9:20 pm

Oh my, I'm so sorry to hear that about Cali. This disease is so unpredictable - who would think after that long seizure-free you would have such a bout. I hope that Cali is doing better this week. Thinking of you!
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: 121 days seizure free

Post by cesullivan » Mon Jun 17, 2013 10:30 pm

Thanks, she is doing better this week. She ended up having 10 seizures and spent 2 days in the ER. She is sleeping at my feet and I'm hoping we have a long stretch again. Upped per Potassium Bromide and added back in the Phenobarbital. I really hate pheno, she eats everything while on it.
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: 121 days seizure free

Post by Kipsmom » Wed Jul 10, 2013 2:34 am

Chris - how is Cali doing?
Kip just went to the ER. He had gone 7 weeks seizure free, and then had four, the last 3 within 24 hours, so they had us bring him in. It made me think of you and how long Cali had gone seizure free, and then having 10 seizures. I hate this disease. Ugh.
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: 121 days seizure free

Post by cesullivan » Thu Jul 25, 2013 8:12 am

I hope Kip is doing better. Cali has been good since. Finally getting used to the Phenob again.
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: 121 days seizure free

Post by Kipsmom » Thu Jul 25, 2013 7:09 pm

Glad Cali is better - here's to another long run seizure free!

Kip is better too, only one grand mal in the last 10 days. We upped the Keppra. The neurologist has said we are pretty much running out of options. :-( He did tell us of a study showing success with Lyrica (pregabalin), but it's not available in generic form yet, so is $300ish a month. I thought I was on to something with a $25/ month co-pay card MY primary care doctor gave me, and the pharmacist tried his best to fill the prescription, but it was rejected not because Kip is a dog, but because he doesn't have insurance. The cheap co-pay doesn't work for cash paying customers. Fine commentary about the collusion between the pharmaceutical companies and the insurance companies, and it really made me feel sad for uninsured humans who would be rejected as well. I tried calling Pfizer (Lyrica's manufacturer) and they bounced me back and forth for over an hour between the human medicine departments and the animal medicine departments, each saying they couldn't help me because it was human medicine I wanted for an animal. Pretty aggravating! Sorry for the long story, but I got on a roll! Thanks for listening. :-) It just feels sad to be down to almost no options.
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

cesullivan
Posts: 140
Joined: Tue Nov 15, 2011 1:32 pm

Re: 121 days seizure free

Post by cesullivan » Tue Sep 03, 2013 8:41 am

I'm glad Lyrica is showing success. It didn't work so well for me. And sorry, I just read your footer, in doggie heaven...so so sorry.
Cali 4YO female Lab/Chow mix
Cluster Grand Mals
Last Seizure: June 10, 13
Pheno 64MG 2x/day
Kbrovet 1,650MG 1x/day

Foster Dog Jim 3ishYO Lab
Pheno 140MG 2x/day
KBrovet 1,000MG 2x/day
Keppra XR 500MG 2x/day
Zonisamide 200MG 2x/day

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

Re: 121 days seizure free

Post by Gentle Jacob's mom » Tue Sep 03, 2013 9:02 am

Hi Ellen,
I just noticed too that you lost Kip. I am so sorry to hear that...

We're here if you need us.
Lynne

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: 121 days seizure free

Post by Chris Douglas » Tue Sep 03, 2013 5:58 pm

yup ... wish you would post Ellen so we'd know your doing ok ...
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

Kipsmom
Posts: 61
Joined: Tue Mar 26, 2013 8:59 pm

Re: 121 days seizure free

Post by Kipsmom » Tue Sep 03, 2013 8:50 pm

I'm OK....thank you all so much for the kind thoughts. Some memory or another brings me to tears every day, but I know it will get easier with time. My daughter, who is twelve, saw me reading this list earlier and she said, "Don't post, Mom, because you might make someone sad." She is very sweet, and is dealing with Kip's loss pretty well.

The lesson that I take from losing him is that we tried the best we could, and so in knowing that, we have no regrets. The neurologist and his assistant sent us a huge bouquet of flowers last week - a beautiful gesture - that was so thoughtful.

Being on the list somehow makes me feel connected to my little guy, and it helps to offer words of encouragement to you all. It makes me smile to hear of successes, and I know how hard you all are trying to make your dogs' lives as happy as possible.

Thank you!
Ellen and Kip
Corgi/Lab/Shepherd mix - 50 lb
750 mg KBr QD
200 mg Zonisamide BID
1250 mg Levetiracetam (Keppra) TID
1st seizure 11/15/2012
In doggie heaven 8/20/13 :-(

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: 121 days seizure free

Post by Chris Douglas » Tue Sep 03, 2013 9:38 pm

thanks Ellen for coming back and letting us know how your making out ... your experience's, words of encouragement, and understanding are a valuable asset for all of us ... as the 1st person to reach out to me (especially so soon after losing your bud) you hold a special place in my heart ... even at the time when I read your post back to me I thought to myself (having noticed the last line in your signature), "what a very special person you are" ... in this time of not only my need ... but thru your own pain you would take the time and effort to post to me ... thanks again Ellen

many blessings to you and yours,
Chris
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

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