4 years later

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

4 years later

Post by SpencerBhumi » Fri May 16, 2014 12:42 pm

Success stories: We have just passed 4 years since Spencer’s first fit. We will celebrate his 9th birthday next month. Tonight Spencer jumped up on the couch with me, gave me a slobbery kiss and curled up for a good, long ear massage. Yesterday we had a great run in the dog park although I did temporarily lose him to two other owners – one had a better tennis ball, the other had training treats. I like to think Spencer is a measure of success.

I still cannot confirm triggers but am suspicious of flea treatments, some dog treats, and incidents of stealing cat food (and many other yummy food stuffs [plus daylight savings, change of seasons, heat waves and many other un-founded but paranoia inducing events]).

Over these 4 years Spencer has had several long hospital stays, to break severe clusters, and has come home quite the lost zombie. Some of these post ictal periods have lasted up to 2 to 3 weeks (scatter brained with post ictal, added drugs, re-loading existing drugs, dopey with IV valium & Pheno) but he has always rebounded to the loving and functional dog that he is today. He loves car rides, swimming in the river/lake & beaches. He loves camping with us. Pretty much he loves being with us wherever we are even if it is just curled up asleep on our lap – especially when he wakes up after a fit.

Have we got this disease controlled? No, not at all. But I do not let it control us! I have come to expect that one fit will lead to a cluster so I am aggressive with valium and Keppra to manage these events. We average 3 to 4 weeks between fits although we just enjoyed a great 52 days free. Our clusters can be as few as 2 or 3 but have had many up to 7 or 8 over a couple of days – the number of fits equally unpredictable as the duration between clusters and the severity of his post ictal state.

Over the years we have trialed & failed maintenance Keppra and Zonisamide. We are now stable on Pheno & Kbrom (plus Milk Thistle & Taurine supplements), and we use Valium and a Keppra bolus to combat clusters. I am grateful for a fantastic vet clinic, understanding friends and assisting family. I am no longer fearful of these fits – the post ictal phase is a great nuisance & hazard, I know. But I am ever respectful of this shitty disease and vigilant to protect Spencer’s lifestyle, and aggressive to halt all clusters quickly. We had a general health check up last week, after the recent cluster, and all has measured up well. We now just accept that Spencer is going to fit and we will manage it as best we can.

To the many recently joined members, prospective members and visitors (I am truly aggrieved by the number who need to join)… welcome. This forum has so many members with a wealth of help: hearts to listen, cares to reply, experiences to share and credentials to advise (and much support that has helped me).

Whilst I am saddened by a few recent ‘unsuccess’ stories there are, by far, more success stories to appreciate so I would like to encourage you – encourage you through a hard walk with a difficult disease. Yes, the journey will be scary: triggers are elusive, fits & clusters are grievous, the post ictal period is frustrating & hazardous, medicating is incredibly variable and there are costs (dollars and sleep). But I want to encourage you to reach the times where you have some control and your dog is healthy & active. Your dog will trust you and know that you love them, and a slobbery kiss will mean the world to you.

My sincere thanks go out to all members who have helped me in the last four years, and my prayers & well wishes go back to you and your dogs.

A run in the park, scoffing breakfast & dinner, slobbery kisses and curled up sleeping on my lap – I like to think Spencer is a measure of success.

Trevor & Spencer
Grateful for the good days, weeks (months).
Last edited by SpencerBhumi on Fri May 16, 2014 5:57 pm, edited 1 time in total.

Posts: 256
Joined: Mon Mar 08, 2010 7:50 pm

Re: 4 years later

Post by Apache » Fri May 16, 2014 5:26 pm

What a wonderful post! Like you, I don't know how I would have dealt with this blasted disease if it wasn't for members that (sadly) have had to join CEN over the years. But, ever so grateful that they were there in times of need.

As the old saying goes, it's one thing to hear/read about it, but it's entirely different to experience it. This is what makes this site so special. Everyone is out there to help one another, to console one another when need be. Each and everyone is going through the same ordeal. Too darned bad, though, that not all dogs respond well to the same prescribed medications. Very frustrating, to say the least.

Reaching just about 9 years old is a remarkable accomplishment, thus far! Keep up the great effort and work! Oh, and, Spencer,..ask for another ear massage. You deserve it.

Bless you all in having to deal with this disease. May some form of medication/medications give your dogs control over this awful disease.

P.S. Trevor, Apache used to enjoy camping and swimming in the lake as well. He'd sleep like a baby when we'd be out there.

Eley's Mom
Posts: 198
Joined: Fri Feb 28, 2014 6:54 am
Location: Chicago, West Suburbs

Re: 4 years later

Post by Eley's Mom » Sun May 18, 2014 6:17 pm

Great post!!

As terrible as this disease is, it's nice to have an outlet and a place to go for opinions, ideas, and just simply understanding from others that are going through the same thing.

I love your view on this!

~Diana and Eley
Diana & Eley
Boston Terrier (23 lbs)
DOB: 11/12/09
First Seizure 2/8/14
Last Seizure 10/9/16
Phenobarbital 48.6mg (morning), 56.7mg p.m. (night)
3 mL Potasium Bromide, once daily
Clorazepate as needed after seizures

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

Re: 4 years later

Post by Gentle Jacob's mom » Mon May 19, 2014 6:00 am

Hi Trevor,
I'm so glad that Spencer is still beating the odds with this awful disease. It's unpredictability and horrific impact can take such a toll and I believe his success (yes, I believe 3-4 weeks is definitely a success!) has as much to do with Spencer's dad as it has to do with his tenacity. I know at times it has felt like a very long four years but you have done a wonderful job doing everything you can for him. You've done so much for everyone here too. I want to send Spencer an early 9th birthday hug. And wish for you and Spencer as many seizure free days as possible.
Take Care,

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

Re: 4 years later

Post by ShilohsMom » Mon May 19, 2014 2:38 pm

Hi Trevor! What a great post! So happy for you all. This is a terrible disease and I believe it's extremely important to take our victories where we can and find the successes. It may not be what someone with a dog without seizures would consider, but we know differently.

The great thing I have found with this board is how supportive every one is. It's so sad when someone reaches out for encouragement, support, advice, etc. only to be met with judgment and harsh words. While I haven't been on the boards all that long, I'm grateful that I've never seen this here. I'm so thankful for everyone that posts.

And Trevor, I hate to tell you this, but I think you can handle it......... there's just no way you can ever be better than a great tennis ball unless you have food :D
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: 4 years later

Post by cesullivan » Wed May 21, 2014 9:34 pm

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

Posts: 225
Joined: Fri Sep 20, 2013 5:58 pm

Re: 4 years later

Post by cforecatsmeow » Thu May 22, 2014 10:37 am

Such a wonderful post and so true in many regards. We are approaching the 1-year mark (seems like an eternity) since this started and it has been quite a journey for us. Nothing in the world makes me happier to see my big ol' goofy Winston having a good time and he still brings me incredible joy 99% of time :) The 1% contributed to post-ictal behavior when he can drive me crazy on the hunt for food. I used to feel hopeless in the beginning and would get so upset, but I finally moved passed that and realized that I am blessed to have Winston and he is blessed to have me. It's been a life changer, good and sometimes not so good, but he is worth every dollar spent and every sleepless hour to see him wrestling with his sissy Patty or treeing coons or planting his big butt on my chest in the morning sitting on me like he is a Yorkie. Hope everyone has a wonderful day!
Cynthia and Epi-Winston
Black Mouth Cur Mix
DOB: 8/2/10
96 lbs.
First Seizure 6/11/13
Last Seizure 1/2/15
Phenobarbital 97.2 bid
Keppra (generic) 937.5 bid, 1125 sid
10 mg Valium tabs as needed
Liquid Oral Valium 5mg/5ml for rectal as needed

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