6 years later

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6 years later

Post by SpencerBhumi » Sat Apr 30, 2016 12:46 pm

It is now 6 years since Spencer had his first fit. Today he is a happy 10.5 year old puppy and we are enjoying a 5 week seizure free moment.

There have been some really sad & disheartening stories on this forum recently and on a good day this is a hard journey for any of us, so I thought I would post a success story to hopefully encourage some of the new members here.

This disease hit me with shock, and I presume it did for all of you. The first couple of years was a grievous time of confusion, frustration and expensive hospital visits – and no clear answers. But now we are in a stable routine where we are getting on with life and enjoying living. However I must remain vigilant and not slip into complacency because - I must be honest and say - we do not have control over this disease. But… we have come to a stage where I can confidently say that this disease does not control us. We have run the gamut of medication and we are now on a stable regimen of Potassium Bromide and Phenomav + milk thistle. I know Spencer will have breakthrough seizures but we control these with an aggressive dose of Diazepam and Levetiracetam. Cluster events are now uncommon. (Breakthrough fits are disappointing but I have come to expect them – they are no longer scary, just a plain ol’ nuisance). The house & yard is mostly ‘fit-safe’ so I don’t fear to leave him unattended. I have my ‘travel-kit’ sorted so I don’t fear to take him anywhere – a day at the beach, camping holidays, runs in the park, shopping etc.

Life with Spencer is not what I first dreamed but he remains an intelligent, patient and affectionate little puppy who (apart from a few days here & there of post ictal/increased drug affect) is active, plays ball, climbs on the couch, gives slobbery kisses, enjoys life and brings much happiness to our house.

Wishing you all good success and much happiness with your ever faithful dogs.

Trevor & Spencer.
Grateful for the good days, weeks (months).

Gentle Jacob's mom
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Re: 6 years later

Post by Gentle Jacob's mom » Mon May 02, 2016 6:25 am

Hi Trevor,
I was so happy to see your past and read that life with Spencer has calmed to a point where you can breath a little closer to normal. You've been through the trenches of this disease and found the way and you've helped many people, including me, find their way too. I remember the first time I read here,(I think Vivian posted it), that we shouldn't let epilepsy run our lives. It was during a time when I was still stubbornly thinking that our Jake wasn't going have seizures if I had anything to do with it. When I read that I couldn't comprehend not putting Jake's epilepsy front and center 24/7 and eventually it ran right over me. I learned a very hard lesson and luckily had you and many others here to help me grow up. And we have. I think the most important message that you have passed on to the newcomers here is that life can go on and there is, as weird as it may sound, a new normal. I'm so happy to hear that Spencer's seizures have become fewer and less of a threat. And that you, like us, pack up what you need and take Spencer for the ride. This journey can take your heart and break it on a regular basis but keeping life as close to normal if possible, as you have, I believe is the best thing you can do. A vet told me in the very beginning that as long as they're happy that's half the battle. You've obviously done that and then some :))
Thank you for your post.
Sincerely with hugs,

Deacon's Mom
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Re: 6 years later

Post by Deacon's Mom » Tue May 03, 2016 8:28 am

Thanks for sharing. I'm in the first months of my journey and laughed when you mentioned the vet bills. I got a new better paying job just in time for my dog to have his first seizure and there went my extra money. God, fates, whatever you believe in must have known what was coming my way when I got this job.

I'm glad to hear you guys are able to enjoy your life with Spencer. I try to get Deacon out as much as normal but am terrible because if I don't feel comfortable bringing him to someone's house I say oh sorry with his seizures I feel more comfortable with him being at home. It probably goes over better then I barely want to come to your house let alone bring my dog I consider my child to your house. I'm bad.

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Location: Oklahoma

Re: 6 years later

Post by ShilohsMom » Tue May 03, 2016 8:53 am


So happy to hear this! It's very freeing when we can get to the point of living with an epi dog and not for it. Hope Spencer has many more seizure free weeks!

Deacon's mom,

Don't feel bad, I've been known to use Shiloh's seizures or medication schedule to not do things as well. I'd much rather spend time with my dogs!
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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Joined: Thu Nov 12, 2015 2:57 pm
Location: Calgary, Canada

Re: 6 years later

Post by Jen_Gill » Tue May 03, 2016 3:16 pm

This is so encouraging to hear. Our Rocco continues to have seizures every 2-5 weeks but hasn't clustered in 6 months. We are now starting to figure out some of his triggers but are once again starting to enjoy the small things again. It is uplifting to think that this could be us in a couple of years, still managing seizures, but still living and enjoying his life with us also.
Great Post!
FS Feb, 2015
LS Nov, 11th, 2015

Phenobarb 90mg (morning and night)
Keppra 750mg (3 times daily)
Kbr 3ml (1200mg) (evening)
Gabapentin 300mg (3 times daily)

During Cluster seizures
Keppra 1500
Rectal Diazempam

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Joined: Wed Jun 01, 2016 10:32 am

Re: 6 years later

Post by texasbeachygal » Mon Jun 20, 2016 9:28 am

This is definitely encouraging. Cooper has only had 5 seizures that we know of, but after the first 3 I was so depressed. I Googled a lot and came across an article that said you still need to live!! Enjoy the time you have with them! That really hit me and I am trying to live with the seizures and not worry about and fear them. Cooper is still a normal, happy, playful dog when he comes out of them that I need to enjoy him as well!

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Joined: Thu Aug 25, 2016 6:54 pm

Re: 6 years later

Post by kysmet4e » Tue Aug 30, 2016 3:45 pm

That's great and so nice to hear. Hope everything is OK and fine :)

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