100 days!

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

100 days!

Post by Eley's Mom » Sun Jan 10, 2016 2:24 pm

Today is 100 days seizure free for Eley!! This is by far her longest stretch ever. For most of 2015, we were lucky to get to 21 days.

I can only think this is because of our choice to finally go to a neurologist!!
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: 100 days!

Post by ShilohsMom » Mon Jan 11, 2016 9:23 am

WoooWhooo, way to go! So happy to hear this! Here's to 100 more!
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: 100 days!

Post by Jen_Gill » Mon Jan 11, 2016 12:03 pm

Yay!!! So happy for you! I was thinking about you guys the other day and wondering if you've had to use the clorazepate yet. Great news!

We're on week 9. Rocco has partials almost once a week in the form of a shudder or a jaw twitch but they are usually only a couple of seconds so we have been letting them go. Heres hoping we can join you in a nice long stretch.

Glad the neurologist worked out for you guys!
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

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

Re: 100 days!

Post by Eley's Mom » Wed Jan 13, 2016 7:46 am

9 weeks is very exciting! Hopefully you can continue the streak!

Thanks, Colleen! How is Shiloh doing? I know for a while, Eley and Shiloh were pretty much on the same seizure schedule.
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

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

Re: 100 days!

Post by Eley's Mom » Thu Jan 28, 2016 7:55 am

Jen, well, we got to try the Clorazepate around 0115 this morning (and again at around 0230 when she had three more seizures...)

I don't know if I would say it helped her post-ictal at all.
It seemed the same to me.

I do know that overall, she's fairing better than me today. She's wide awake and ready to tackle the day. I'm a zombie and she's snoozing on my lap at work.
At least a coworker saw my post on facebook and is picking me up some coffee on her way in :)
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: 100 days!

Post by ShilohsMom » Thu Jan 28, 2016 11:23 am

Diana,

Sorry that Eley's streak had ended and hope you're able to get some rest when you get off work. I took Shiloh to work with me yesterday and was ready to pinch his head off. He was driving me nuts! He had a seizure at 5:00 a.m. this morning but decided to leave him home. I think he gets better rest if I'm not there, he's obsessive about being in my face. I give him melatonine and it "can" help with his post ictal although not always.

Hope you're able to get another long seizure free streak after this.
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: 100 days!

Post by Eley's Mom » Thu Jan 28, 2016 11:34 am

Eley goes to work with me every day...some days I think I created a monster with that because now she's developing separation anxiety if I'm not near her.
She was a little too perfect at work yesterday. I didn't have to yell at her at all - I should have known it was too good to be true :)

Luckily she's small enough that she just lays on my lap all day on seizure days here - she's always pretty content with that so it makes it easier.

It's crazy that on days Eley seizes, Shiloh does too. They need to stop this little telepathy thing they have going on!
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: 100 days!

Post by Gentle Jacob's mom » Thu Jan 28, 2016 1:48 pm

Unfortunately we have to join the club today too. Jake had a seizure late morning. The seizure itself not bad, but the post seizure this time was exhausting for him and me. He's a real trooper but now that he's going on 12 yrs old it gets even scarier sometimes.
I hope Shiloh, Eley, and Jake have a quieter day tomorrow.
Take Care,
Lynne

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

Re: 100 days!

Post by ShilohsMom » Thu Jan 28, 2016 2:23 pm

Shiloh's 75 pounds of drunken sailor. He can knock things over and he spends a lot of the time in my office standing next to my chair with his head on my arm staring at me. If I don't pay attention to him he's liable to bark and that just isn't cool. Looks like we have the 3 musketeer thing going on, too bad it wasn't for something good. Hopefully this will be the last one they have and we can all break 100 days. We actually made it 57 one time and that was pretty cool.

Lynne, I'm so sorry that Jake has seized again. That's awfully close to his last one. I hear you on the post seizure stuff. It's absolutely maddening! I know it's frustrating for me I can't imagine how they feel being so confused about what they must be feeling.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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

Re: 100 days!

Post by Gentle Jacob's mom » Thu Jan 28, 2016 2:43 pm

I have a hard enough time with Jake and he's only 60 pounds.
It's been 3 weeks for him and that's about his average. We've made it 8 weeks before, but hit seems the longer we get between seizures the worse his post ictal/seizure state is. So, while it was exhausting he's sound asleep. I'm sure when he wakes up he'll act like nothing happened.
Fingers crossed Shiloh seizures are done too.
Lynne

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

Re: 100 days!

Post by Eley's Mom » Fri Jan 29, 2016 10:07 am

Hope you guys are all having a better day today! Eley didn't have any additional seizures yesterday so we are past that 24 hour mark.

I agree - wish these guys (and girl) could be the three musketeers on something a little more happy.

I couldn't imagine a big seizing dog - ugh...that slobber...that pee...
I can physically manhandle Eley when she's seizing/post-ictal. A 75 lb dog, no way! Even our other dog is almost 50 lbs. I wouldn't be able to move him.
That would just add a whole new level of frustration/worry/stress in with this whole thing.

Hoping for quieter days ahead for all of us!
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

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

Re: 100 days!

Post by Jen_Gill » Fri Jan 29, 2016 1:14 pm

Hi Diana
I'm so sorry to hear Eley's streak ended. I remember that feeling earlier this summer with Rocco when he went 98 days. Thanks for the update on the clorazepate. Do you guys use rectal valium as well? We've also been told that Keppra can be a good cluster buster as that is our issue as well. Hopefully you guys can enjoy another long streak after this!
We have a whole new issue with Rocco. He seems to have caught a bug of some kind and was hospitalized last night as he was throwing up his meds. After seeing him today our Internist thinks his bromide levels are too high which is not helping the GI issue so he wants to lower his bromide significantly. Now the nervousness begins. Ugh! I'm hoping we don't have to try out the clorazepate any time soon but am beginning to feel it will be needed sooner than later. Super frustrating.
I can't express how helpful this group is! Its comforting to know that others are dealing with the same struggles and understand the stress that comes with it. Like Jake and Shiloh, Rocco is a bit bigger at 59 pounds so the post ictal is not pleasant.
Heres hoping Eley has another fantastic streak and that Rocco will not need the clorazepate just yet!
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

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

Re: 100 days!

Post by Eley's Mom » Fri Jan 29, 2016 2:12 pm

We don't use rectal Valium. We used to back in the day, but it wouldn't even touch her seizures. After rectal Valium we started giving her intramuscular injections of Midazolam. That eventually stopped helping with the clusters too. Even with the Clorazepate, I had to give her two doses to get them to stop.
She had one grand mal so I gave her the clorazepate right away. About an hour later she had the second seizure, then the third, fourth, and fifth seizure all happened 10 minutes apart so I gave her a second dose of the clorazepate.

It seems once her clusters start, they're difficult to stop.

Poor Rocco!! When were his last bromide levels taken? As much as I feel bad for giving Eley so many meds, I'd be scared to lower them too!
Hoping for good results for you!! Keep us posted!

This group as been a godsend...I've cried here, vented here, and shared joy. I know everyone here has had the same release. People without epi-dogs just don't get it sometimes...
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: 100 days!

Post by ShilohsMom » Fri Jan 29, 2016 3:10 pm

It's weird because Shiloh would lose bladder control every time he had a seizure until about 6 months ago or so. Now he usually doesn't even when his seizure is first thing in the morning before we go out. I almost wish he did because then I could tell if he'd had one when I wasn't home. The slobber..... UGH, boy that's gross. It's lovely when he shakes his head before I can wipe his face. Yuck!!!! But it's still better than that hairy beast shaking off when his fur has urine all over it. I have to let Shiloh lay there until he's ready to get up because he has the IVDD and Wobblers. I just leave him be until he feels like he's ready. I'm a bit paranoid that one day when he falls over he'll damage his back or neck to the point of no return.
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: 100 days!

Post by Jen_Gill » Mon Feb 01, 2016 1:10 pm

Alright, I posted the long version of this in maintenance so I will give the short version here. Rocco had Giardia. Yuck, is all I have to say. Keppra has been cut in half (thank god as it is way too expensive and no goodrx cards in Canada), and bromide has been lowered by 25% until his bloodwork returns. He is feeling much better now that we are treating the Giardia, but the anxiety of the return of the beast is not enjoyable for me. Ugh!
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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