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

Thank you!

Post by Eley's Mom » Wed Apr 13, 2016 1:09 pm

Not really a success, but I just want to say thank you to everyone here for being so supportive of one another!
I recently came across a post on a Facebook group that I belong to.

A woman with a young family that is at a crossroads. Her dog's seizures have become very severe and she was asking for advice on whether or not there were sanctuaries or rescues specifically for epi-dogs. Instead of receiving support, she was bashed by most of the responders (there were a few that tried to help). From the sounds of it, they tried many drug combos and have dealt with this disease for quite a while. She has feared for the safety of her young child with a post-ictal 80 lb dog, the seizures have become worse, and the meds are putting a big strain on finances. Instead of just opting to euthanize, she was seeking help to give her dog another chance.

My heart absolutely broke for her - a woman in need of help and met with such cruel comments from others fighting this same fight.

I'm so happy I don't have to fear backlash for asking a question or posting a rant about a bad day. Good news is celebrated by others.
So thank you to everyone for being so supportive of each other.
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

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

Re: Thank you!

Post by ShilohsMom » Wed Apr 13, 2016 2:07 pm

I'm a member of a canine epilepsy FB page as well. Don't post much because I don't appreciate people with cruddy attitudes when you're not doing what they think you should. Run into this a lot when someone says their dog is clustering and then they're chastised in some way. I think it's really sad how judgmental and mean people can be. The support and understanding is the thing I like so much about this board. We may be small, but we have BIG hearts.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Jen_Gill
Posts: 31
Joined: Thu Nov 12, 2015 2:57 pm
Location: Calgary, Canada

Re: Thank you!

Post by Jen_Gill » Tue May 03, 2016 3:20 pm

This forum is great for support. I hope this lady was able to identify a rescue. We had a similar issue on another forum except the owner was looking more towards euthanization. People were quick to jump in and provide information for rescues that would most likely take the dog. This disease is difficult enough. No one needs an extra dose of guilt on top of that! How are Eley and Shiloh doing these days?
Jen
Rocco
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
Clorazepate

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

Re: Thank you!

Post by ShilohsMom » Tue May 03, 2016 3:45 pm

We only get a small part of a story and don't know what someone's going through either.

Shiloh's been doing well as far as seizures go, we've been 53 days and hoping to break the 57 day mark.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: Thank you!

Post by Eley's Mom » Wed May 04, 2016 1:49 pm

Eley has been about the same. She's still seizing every couple of weeks or so, but her grand mals are much less severe than they ever have been, so I'll call that a win.

She recently started having focal seizures every few days or so, but I'll take those over a single grand mal any day!!

How has yours been doing? I haven't been on the board in a little while - life is just busy sometimes - so I have a lot of catching up to do :)
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

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

Re: Thank you!

Post by ShilohsMom » Thu May 05, 2016 9:55 am

That's great that Eley's seizures aren't as bad. It would be nice if you can get a longer break in between though. This disease can be so unpredictable we sure have to take our victories where we can or go nuts. I've done nuts, it's not fun!

Shiloh's ability to walk has gotten worse. He's pretty unsteady and if you pet him, I have to stand next to him so he can lean otherwise he's liable to fall over. He can go on our walks in the morning, but no more than 40 minutes or so and then it gets hard for him. Sometimes he can climb onto the couch or his chair or get on the bed, sometimes he can't. It's painful to watch him try. The vet had us try Meloxicam to see if that would help but after a month of no change we took him off. Vet said that the issue is probably neurological. His legs can feel, the signal just isn't getting where it needs to go. Needless to say, I'm concerned about what the next bout of seizures could do. But, with that being said, I'm extremely thankful for what we have today and the 55 days without a seizure. Every day is a gift!!
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Jen_Gill
Posts: 31
Joined: Thu Nov 12, 2015 2:57 pm
Location: Calgary, Canada

Re: Thank you!

Post by Jen_Gill » Mon May 09, 2016 12:58 pm

Its great that you are having some success with managing Eley. I'm so happy to hear that.
Colleen, I'm sorry to hear that Shiloh is still struggling with walking. I'm sure hes grateful that he has a mom who continues to do so much for her. Here's hoping for another 55 days.

Rocco has had a bit of a harder month. For the first while after reducing the bromide his seizures seemed to get farther apart, first at 2 weeks, then 3 weeks, then 5 weeks. Now however, they are back to getting closer together. We went 3 weeks, then 2 weeks, and this Sunday it was 1 week and his first cluster in 6 months. On a brighter note though his seizures are shorter, his cluster was only 2 GM (although lots of focals in between) 5 hours apart, and we were able to break the cluster at home using Keppra, rectal diazepam and clorazepate. My fear is that they will keep getting closer together again but I'm hopeful that Rocco will eb and flow with some months being better than others. Here's hoping!
Jen
Rocco
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
Clorazepate

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

Re: Thank you!

Post by ShilohsMom » Tue May 10, 2016 12:44 pm

Jen,

I'm sorry that Rocco is having such a difficult time. This stupid disease is so unpredictable for most of us and can make it nearly impossible to relax cause we know the next one is around the corner.

Shiloh didn't break his record, but we did get close so here's to that! He seems to not only have the grand mals but focal seizures as well. Boy the fun never stops!!!! :D
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: Thank you!

Post by Eley's Mom » Tue May 17, 2016 2:59 pm

Oh no - I hate to see that Shiloh and Rocco have hit some rough patches.
Hopefully we all can get some improvements!
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

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

Re: Thank you!

Post by ShilohsMom » Wed May 18, 2016 9:50 am

At this point, I'm grateful for the days he's doing well and they far outweigh the ones where he doesn't, so that's pretty successful.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Jen_Gill
Posts: 31
Joined: Thu Nov 12, 2015 2:57 pm
Location: Calgary, Canada

Re: Thank you!

Post by Jen_Gill » Wed May 25, 2016 11:26 am

Likewise. Every day is something to appreciate. We are almost at 3 weeks now so I'm optimistic that this will eb and flow. We just had his bloodwork done and interestingly enough his bromide levels haven't budged even with a relatively immense decrease in the amount we have been giving him. Goes to show how long this drug does take to level out. His PB levels have dropped quite dramatically though which our vet seems to think is normal as his liver gets used to processing it and it works with the bromide. All organs look great which is a good sign and Rocco is a much happier, more energetic pup these days. On a sad note our specialist is leaving to teach at a University so we are now without a specialist. The search begins :?
Jen
Rocco
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
Clorazepate

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