Last Ditch Attempt

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Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Last Ditch Attempt

Post by Esmo » Fri Sep 12, 2014 5:24 pm

Well, today we are adding the drug of last resort for our little Maggie - Gabpentin. None of us are too hopeful that adding this will turn the tide but I have to try.

As I have posted before - we adopted Maggie last December from a rescue shelter here in Portland. She had her first seizure on New Year's Eve and thus began our journey. Last May, she had her worst seizure episode ever - over a dozen seizures in a 24 hour period. At that point her neurologist (who is wonderful) added KeppraER to her regime and for a time we thought we might have gotten things under control - she went 28 days without a seizure. Well man plans and the Gods laugh - since then her intervals have been shortening with the last episode yesterday at an 11 day interval. While the current combination has had the effect of dramatically curtailing the severity and lenghth of her actual seizures and when she does cluster it is hours apart instead of minutes - the shortening of the time in between episodes is of great concern. If they continue to shorten we will be looking at daily or almost daily seizures very soon. Hence the Gabpentin.

We are using Gabpentin instead of Pottasium Bromide because she also has developed digestive issues and supposedly it is easier on the stomach than PBr. That would be nice, as we finally have gotten her to where she will not only eat - but is able to keep it down.

I am praying this works or I fear I will be faced with the decision I don't want to make. I keep telling myself that we have done and are doing everything possible for her and I must always keep her quality of life in the forefront - but it really doesn't help.

Poor girl - she has had such a tough road, we surmise she was abused, from behavior and some after-effects of injuries, she was abandoned in a kill shelter in LA and then found her way to us and now this horrible, horrible disease...

So, we hope and we pray and we wait and see..

Thanks for listening...

Kathy
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

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

Re: Last Ditch Attempt

Post by Gentle Jacob's mom » Fri Sep 12, 2014 6:22 pm

Hi Kathy,
We've been through so many ups and downs with Jake. There was a period where he couldn't make it more than 12 days without a seizure and they were hard and lasted 1.5 to 2 minutes. With horrible post ictal and clusters. We've tweaked his meds, and the regimen he's on now is definitely his alone. He takes Keppra (not ER) 4x a day. He takes Pb 3x a day and after a seizure he take 500 mgs of Keppra for 5 days at 9 pm. So far that's keeping him at 3 week intervals. I guess what I'm trying to say is, as long as Maggie's levels are okay maybe you should try giving the meds a little differently to go with when she normally seizes. Jake used to seize a lot at night, early am. We added a little Pb. Then he started seizing mostly during the day and we added a 6am dose of Pb. Then we went for the 4x a day Keppra and finally got his seizures down to 30 seconds, but still not making it more than 2 weeks. Then out of the blue he started making it 3 weeks. Tweaking meds is scary, but as long Maggie's levels are holding steady you could try. Keppra is a very safe drug and so far, knock on wood, we've been able to add on more after a seizure without a problem.
I'm sorry that I don't remember, but have you tried Clorazepate and extra Pb after a seizure to control clusters?
I know how scared you are, and I'm sorry you're going through this. I hope the Gabapentin works.
Take Care,
Lynne

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: Last Ditch Attempt

Post by Esmo » Fri Sep 12, 2014 9:40 pm

Thanks Lynne. Maggie is getting rectal Valium (at a fairly aggressive level), Clorezapate and an extra dose of Pb when she has a seizure. There does not seem to be a time window for her seizures and according to her neurologist she is at max dosage levels for everything.

We did the first dose of the new med this afternoon and boy is she doped up. I am hoping this stabilizes over the next couple of days. We will see.

Thank you for your kind words.

Kathy
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

MK's mom
Posts: 1708
Joined: Wed Mar 01, 2006 9:48 am
Location: Michigan

Re: Last Ditch Attempt

Post by MK's mom » Mon Sep 15, 2014 8:12 am

Kathy,

My first epi boy was on leviteracitam and only got good control for about 4 months, then he started seizing again like crazy.

Has your pup ever been on zonisamide? I'm asking because my neuro never suggested gabapentin once, I think it's at the bottom of the list of meds to try, they seem to go to zonisamide first. KBr is very hard on the body as you know, have they said anything to you about the other bromide ?(can't remember the name, but it's sodium bromide and supposedly easier on the tummy).

Years ago there was a fellow on this board who was ready to put his dog to sleep because his seizures were getting to be too frequent. They adjusted the KBr and the dog never seized again, although he passed away a few years later due to some other problem he was having. (he was getting old, too). Hang in there, sometimes all the pups need is that perfect dosage and it gives them a reprieve.
Nathan
3.5 yo Irish Setter boy
First seizure 7/26/2013
Last seizure 3/24/2014
__________________________________
MK
5 yo Irish Setter boy
First seizure 1/25/06
Last seizure 9/4/2009

Aug 17, 2004- Sept. 22, 2009
May the shamrocks fall softly sweetpea

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

Re: Last Ditch Attempt

Post by cesullivan » Mon Sep 15, 2014 8:50 am

I was dealing with Cali's seizures 4-7 Grand Mal cluster seizures every two weeks. She was on Phenobarbital, zonisamide and keppra xr.

Finally after 2 years we decided to do the Kbrovet (potassium bromide pills). We weaned her off the other 3 meds and she went 7 months with no seizures. Then due to a 10 cluster day, we added back in the Phenobarbital and she is over 15 months seizure free on the two meds.

My regular vets office told me that Cali was one lucky dog as most people would have given up on her a long time ago. I was just persistent and found what worked for her body. Yes, she does have some stomach issues from the Kbrovet, but it's a hell of a lot better than seizures. (she threw up this morning and has had an upset tummy for about a week now).

Cali's neurologist said the gabapentin doesn't work well in dogs for seizures.

Chris
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

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: Last Ditch Attempt

Post by Esmo » Mon Sep 15, 2014 12:07 pm

Maggie is currently taking the max dosages for her weight of Phenobarbital, KeppraER and Zonisamide. We have nowhere to go with those three. Her neurologist has had some luck with Gabapentin, but she is not overly optimistic with Maggie, as she has been resistant to good control with everything we have tried. I guess if this doesn't work we can wean off the Gabapentin and try the Pottasium Bromide. We had some luck with Maggie's digestive issues using 10 mg of Prilosec and a probiotic powder.

Whatever we do (any of us dealing with this disease) it is always a trade-off. We add a drug and then deal with the side effects. The Gabapentin has made Maggie extremely lethargic and unsteady on her feet. Yesterday was better so maybe today she will be even more "normal". One thing I do notice, while she has always been a lover dog - she now is glued to me. Whereever I am, she has to be and she follows me everywhere I go in the house, laying at my feet while I cook, garden or get ready for work. We will see if this behavior continues.

I often wonder what she would be like if she didn't have to be whacked out on all the drugs. There are times when I think her true personality tries to shine through, playful, a little bit mischevious and stubborn as hell...
We didn't have her long enough before the disease blew into our lives to really know her.

We wait, we pray and cherish all the time we have with her...
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

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

Re: Last Ditch Attempt

Post by cforecatsmeow » Tue Sep 16, 2014 10:40 am

So sorry to hear about this. Your pup is so lucky to have you and get lots of love. Both of my pups are rescues and came from less than ideal situations as well. Even with this stupid disease, I am so sure your babe has appreciated your love, kindness and devotion.

As for the medicine, have they ever considered switching to the regular Keppra with more dosing during the day? I have not seen a lot of success with others on the Keppra XR. Winston takes three staggered doses (total of 4 pills with 1 1/2 in the morning, 1 1/4 in the afternoon and middle of the night) and it has been effective. I also think someone on here gives it 4 times a day so maybe that will work.

Best of luck. We're thinking of you.
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

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

Re: Last Ditch Attempt

Post by Gentle Jacob's mom » Tue Sep 16, 2014 11:39 am

We give Jake regular generic Keppra 4x a day. We weren't making any progress with 3x a day a few years back and Jake was having really strong seizures with horrible post ictal. The only thing that was good was that the seizures only lasted 1-2 minutes, but we always had to be so quiet around him during the first day because he was so jumpy. Then someone here, who I can never thank enough, posted about giving it 4x a day with the same total amount of mgs for the day. She said her neurologist found it helpful for dogs that metabolized Keppra too quickly. We'd found out the year before with peak and trough testing (don't know if I spelled that right) that Jake was metabolizing it too fast. After I found out about the 4x a day dosing our vet checked into and found out that they were/are having success with that, so we tried it. Jake's seizures dropped down to 20-30 seconds with no post ictal. We still had the problem that he was seizing too often. Once every 1.5 to 2 weeks, but they were so mild we considered that a success. Then this year we put him on Temaril P for his itching and now, on average, knock very hard on wood, he averages every 3 weeks. We consider this a real accomplishment. There's also a chance that they are getting less severe as he ages. I read something about that 8 years ago when he started seizing. Since there is never anything definitive with this stupid disease it's hard to know what is contributing. I think you can safely give extra Keppra for a couple of days after a seizure to help with clusters.
I hope this helps somehow.
Take Care,
Lynne

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: Last Ditch Attempt

Post by Esmo » Tue Sep 16, 2014 1:27 pm

I am continually amazed (and perhaps I shouldn't be) at how treatments for this disease have to so tailored to each individual dog. There is no one protocol, no magic bullet drug...I guess that is wishful thinking. I am so glad to hear of each small/large success in getting the drugs exactly right, it gives me hope we may get there for Mags.

On a bright note - she seems to have adjusted to the Gabapentin enough to resume her daily walks. She is happy about that! Every small step, every good day is a win.

Thanks to all for your listening and sharing. As we all know, it can feel very alone out here and nobody who isn't going through it can understand what it is like and those people who aren't "dog/pet people" really don't understand why we change our lives, have sleepless nights and spend the money we spend on our babies..nothing is more infuriating or enraging then to hear the phrase - "it's just a dog"....

Wishing you all a good Tuesday...
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

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

Re: Last Ditch Attempt

Post by Eley's Mom » Wed Sep 17, 2014 10:38 am

I'm glad Maggie is getting back to normal a bit :)

Wouldn't it be wonderful if this was a typical disease where you could just give a set dosage of whichever drug and it work.
I agree that nobody else understands. When I tell people Eley has epilepsy I think they completely underestimate what it's like or just how severe her seizures are (and are becoming).

I've had numerous people ask why I haven't just put her down and tell me they would have never spent the money I have on "just a dog"...I was floored.
When I brought her home I made the promise to do everything in my power to give her a happy, healthy life. 99% of the time she's fine, but the seizures are bad.
I have decided I won't give up on her unless this disease takes her from me.

I'm sure Maggie knows how much you love her! Take the good when you can :)
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

MK's mom
Posts: 1708
Joined: Wed Mar 01, 2006 9:48 am
Location: Michigan

Re: Last Ditch Attempt

Post by MK's mom » Wed Sep 17, 2014 11:49 am

I've had people suggest to me to put my boys to sleep, I find it appalling. They didn't ask for this, it's their LIFE!! It hurts me to the core when people act as though these poor souls are just disposable objects. I also feel for the poor animals that get homes who cannot be bothered helping them and put them to sleep. It's hard for them and hard for us.
Nathan
3.5 yo Irish Setter boy
First seizure 7/26/2013
Last seizure 3/24/2014
__________________________________
MK
5 yo Irish Setter boy
First seizure 1/25/06
Last seizure 9/4/2009

Aug 17, 2004- Sept. 22, 2009
May the shamrocks fall softly sweetpea

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

Re: Last Ditch Attempt

Post by ShilohsMom » Thu Sep 18, 2014 1:14 pm

Kathy,

I'm glad to hear that your baby is adjusting well to the meds. It is a difficult process to go through when trying to find a balance of medications that will work. Then we worry over what all the meds are doing to do them internally, but have to find peace with the knowledge that the benefits outweigh the downside.

I'm appalled by the people who think that because Shiloh had hit a rough patch it was time to put him to sleep. How sad for them that they don't know the pure love we have for our hairy babies and they for us. I'm scared to look at the credit card bill for the past 30 days cause I've had Rylie in for hot spots/annual blood work, Shilohs had an ER visit, and Izzie's been in the vets office with blood work 4 times, plus the veterinary hospital and then finally having to say goodbye. But I don't regret one single penny spent on them. I have regrets about a shirt I bought or some other random thing that collects dust, but never them.

Prayers that Maggie will have success with the new med.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: Last Ditch Attempt

Post by Esmo » Thu Sep 18, 2014 3:57 pm

Colleen

I haven't yet said to you how sorry I am about your loss of Izzie. We all know what a heartbreak it is to lose one of our babies and doubly so when is so unexpected. Hoping you find some peace and healing.

And I know what you mean about the credit card bills! Every time I think we are going to get ahead just a bit it seems there is an ER visit or expensive testing that needs to be done. I don't have the courage to total up how much we are spending on meds alone.

Last summer (August 2013) we lost our Riley who had been with us almost 14 years. The last several years she was on a combination of medications to help with congestive heart faliure. After she passed I couldn't figure out why all of a sudden we seemed to have a little disposable income - then it dawned on me, we weren't putting out $250 a month on medications. I would rather have had her back though...

Oh well - we managed to take care of that monetary issue in spades...

Hoping all have a good day...

Kathy
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

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

Re: Last Ditch Attempt

Post by ShilohsMom » Fri Sep 19, 2014 1:26 pm

Thank you so much Kathy. Yeah, this hit me from left field and the speed at which the Leukemia progressed was mind-boggling. Time, prayer and the concern from others has certainly helped.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

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