I think Keppra is ruining our lives

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Anastasia
Posts: 43
Joined: Wed Jul 09, 2008 6:30 pm
Location: Carbondale, Illinois

I think Keppra is ruining our lives

Post by Anastasia » Tue Aug 11, 2009 2:21 pm

This will probably end up just one big rant, so I apologize in advance.

I just spoke with our neuro's colleague (he's been on vacation for 3 weeks and NO ONE checks his messages??) and got her up to speed on Dawson's current condition. Because of the symmetrical hair thinning/loss he will have blood drawn tomorrow morning for the MSU thyroid panel. She advised bumping up his KBr from 1 ml to 1.25 ml daily, but doesn't think the Keppra is affecting his seizure frequency/severity. What do you guys think?

I think I posted earlier that a previous increase to his Keppra seemed to increase the seizures so we dropped it back down. Over the past month Dawson's focals have been steadily increasing. This is what the last 4.5 days have consisted of: 2 grand mals, and 42 focal seizures (most last a matter of seconds, but some last 10-15 minutes and involve unsteady walking/lurching/drooling). Of the focals, many times they start within 15 minutes of his Keppra dose. Both grand mals occurred within 30 minutes of his dose. Today he got his Keppra at 1:30 and has already had 5 focals. It's 3:15 pm. Same thing happened Sunday and yesterday.

Surely I can't be imagining this? I am going to lose it pretty soon now. I feel like stuffing that Keppra bottle down someone's throat. Figuratively, of course, but nevertheless....
Dawson (aka "Peanut") - Cavalier King Charles/chihuahua/terrier mix?
Adopted at 5 mos old, now 3.5 y/o
1st seizure at 10 mos old, 12/30/07
KBr: (1ml) 300 mg, SID
Zonisamide: 150 mg, BID
Keppra: 3 ml, TID
Thyroxine: 0.15 mg BID

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

Post by MK's mom » Tue Aug 11, 2009 2:46 pm

I stated before that MK was having more partial seizures while on Keppra and when I weaned him off he didn't have ONE grand mal seizure, just underscoring that I think the drug doesn't do much. A researcher did a study on some drugs, keppra being one of them and after a few months the drugs lost their effectiveness, so it's not our imagination. Just take your dog off of it, but do it slowly.

Sometimes drugs have to be tweaked or the dosages increased and decreased. I see that Dawson is already on most of the drugs we commonly use, so why not try weaning him from keppra and see if he gets better or worse. He's not having grand mals, right? Ask your neuro's colleague if she can tweak the drugs or at least tell you she thinks it's ok to omit the Keppra. Taht drug is too expensive to use if it isn't doing anything, ESPECIALLY if it's causing more problems. The vets love that drug because it doesn't have any side effects, that's why they push it so much

Vivian
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

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

Post by MK's mom » Tue Aug 11, 2009 2:47 pm

I just noticed that Dawson isn't on Pb, is there a reason he's not? Why are you only giving the KBr once a day instead of twice?

Vivian
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

Anastasia
Posts: 43
Joined: Wed Jul 09, 2008 6:30 pm
Location: Carbondale, Illinois

Post by Anastasia » Tue Aug 11, 2009 3:22 pm

Vivan, thanks for your reply. Do you have the name of the researcher (or a reference for) that did the Keppra efficacy study?

Dawson doesn't take phenobarb anymore because it took its toll on his liver. He was taken off of it cold turkey in April after he ended up in the hospital for hepatic encephalopathy and what they thought was liver failure. The KBr has always been administered once a day. Neither our regular vet nor the neurologist told us otherwise.

I don't think he has grand mals often. During a grand mal he is supposed to be "unconscious" and I rarely see him in this condition. Most of the time it's a really bad focal in which his entire body is involved (I think). The big indicator of a grand mal is, I guess, the paddling and loss of consciousness and bladder/bowel control. Actually, Dawson has only lost control of his bladder/bowels during a seizure only once that I can remember, so maybe he's not even really having grand mals?

I remember reading on this forum that someone went on anti-anxiety meds some time after their dog developed seizures. That's not sounding like such a bad idea right about now...sign me up.
Dawson (aka "Peanut") - Cavalier King Charles/chihuahua/terrier mix?
Adopted at 5 mos old, now 3.5 y/o
1st seizure at 10 mos old, 12/30/07
KBr: (1ml) 300 mg, SID
Zonisamide: 150 mg, BID
Keppra: 3 ml, TID
Thyroxine: 0.15 mg BID

claires friend
Posts: 194
Joined: Fri Sep 21, 2007 2:49 pm
Location: California

Post by claires friend » Tue Aug 11, 2009 4:00 pm

Morgan never loses consciousness or her bladder or bowels during a Grand Mal. So I am not sure you should use that as a determining factor. Have you had his Keppra levels checked? I would rather have Grand Mals (only last 20-30 seconds) as opposed to the partials she had on Keppra. 40 minutes to an hour of paddling, lurching, running , climbing the walls. We were up at our cabin and the closest ER was over an hour away. We ended up giving her 80 mgs of valium over the course of the seizure. I could not have lived with many more of those. We give KBr twice a day here, I know they say it is slow to release but I would think Morgan would have problems with once a day. I guess I am lucky that the valium really does seem to help her.
Susan Marie
Morgan -Foster Golden, now ours FOREVER !!
First seizure Aug 16, 2006 @9 months old ,very low thyroid
She has been with me since the end of July 07
150mg PB BID
.5 soloxine BID
400 Kbr BID

Anastasia
Posts: 43
Joined: Wed Jul 09, 2008 6:30 pm
Location: Carbondale, Illinois

Post by Anastasia » Tue Aug 11, 2009 4:45 pm

I wish these seizures could be reliably categorized according to their characteristic symptoms. I hate how each case seems to be different. Yet the vets act like this is totally textbook.

I would rather Dawson have a few grand mals once a month or so, like another poster's pup Peanut. Focals lasting 45 minutes or coming every 15 minutes are horrible.

I'll get his Keppra levels checked after the thyroid panel comes back, but as of now I'm going to strongly suggest we start weaning him off of the Keppra while tweaking the other meds. I don't really believe that this is just coincidental. Maybe adding the .25 ml of KBr in the evenings will help. I'm glad the valium helps Morgan, but how is it affecting her liver function in conjunction with the phenobarb and KBr?

We don't even have an emergency vet in this area. The closest thing is our regular vet, basically calling them after hours and paying $80 just to have them look at your dog. This area is so ridiculously deficient in quality, advanced veterinary care.
Dawson (aka "Peanut") - Cavalier King Charles/chihuahua/terrier mix?
Adopted at 5 mos old, now 3.5 y/o
1st seizure at 10 mos old, 12/30/07
KBr: (1ml) 300 mg, SID
Zonisamide: 150 mg, BID
Keppra: 3 ml, TID
Thyroxine: 0.15 mg BID

claires friend
Posts: 194
Joined: Fri Sep 21, 2007 2:49 pm
Location: California

Post by claires friend » Tue Aug 11, 2009 5:29 pm

What were his KBr levels at last time you checked? That is a pretty low dose.
Susan Marie
Morgan -Foster Golden, now ours FOREVER !!
First seizure Aug 16, 2006 @9 months old ,very low thyroid
She has been with me since the end of July 07
150mg PB BID
.5 soloxine BID
400 Kbr BID

Anastasia
Posts: 43
Joined: Wed Jul 09, 2008 6:30 pm
Location: Carbondale, Illinois

Post by Anastasia » Tue Aug 11, 2009 6:27 pm

The most recent paperwork I have for him gives potassium levels (4.1) but not KBr. I'm guessing this means they didn't check the KBr levels.

When he was taking the KBr capsules his dose was 350 mg 1x/day. In April due to weight loss (he's now 20-21 lbs) his dose was reduced to ~250 mg (1 ml, since we started him on the liquid as it is SO much cheaper). With the .25 ml increase as of tonight he's now getting 1.25 ml daily (1 ml in the am, .25 in the pm).
Dawson (aka "Peanut") - Cavalier King Charles/chihuahua/terrier mix?
Adopted at 5 mos old, now 3.5 y/o
1st seizure at 10 mos old, 12/30/07
KBr: (1ml) 300 mg, SID
Zonisamide: 150 mg, BID
Keppra: 3 ml, TID
Thyroxine: 0.15 mg BID

claires friend
Posts: 194
Joined: Fri Sep 21, 2007 2:49 pm
Location: California

Post by claires friend » Tue Aug 11, 2009 7:11 pm

I forget how small he was. Have you had Zonisamide levels checked?
Susan Marie
Morgan -Foster Golden, now ours FOREVER !!
First seizure Aug 16, 2006 @9 months old ,very low thyroid
She has been with me since the end of July 07
150mg PB BID
.5 soloxine BID
400 Kbr BID

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

Post by MK's mom » Wed Aug 12, 2009 6:24 am

It's the bromide levels that need to be checked, that is what keeps the monster away. Zonisamide is also processed thru the liver, so if Dawson had liver damage why did your vet want to put him on that drug?

You know, I'm not really sure why KBr is administered twice a day being that it has such a long half life, but most of our dogs get it BID. I wonder if Dawson could get his bromide that way if it would make a difference? It's certainly worth the try, but you'd have to be patient being that it takes so long to have an effect.

I'll see if I can find the article the vet wrote to the veterinary congress and send it to you.

Vivian
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

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

Post by MK's mom » Wed Aug 12, 2009 6:26 am

I found the article right away, here it is:

http://www.vin.com/proceedings/Proceedi ... &O=Generic
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

Anastasia
Posts: 43
Joined: Wed Jul 09, 2008 6:30 pm
Location: Carbondale, Illinois

Post by Anastasia » Wed Aug 12, 2009 9:43 am

I took Dawson in this morning for his blood draw for the MSU thyroid panel. After reading both of your replies, doing some research, and calling our vet to extract the little info they could give me, I'm wondering if a serious adjustment needs to be made to his meds. I'm also wondering why no one, i.e. a vet, has suggested this earlier. Shouldn't they have considered this possibility when he was taken off of the phenobarb cold turkey?

His last KBr reading was one year ago, and was at 1.6 (0.8-2.0 reference range). But, he was also on phenobarb at the time and I now understand that increasing phenobarb lowers the KBr. He may need an adjustment in the KBr now. I've added that test to the thyroid panel.

I also read that phenobarb lowers the amount of zonisamide in the blood. So he may now have too high of a zonisamide dose because he is off the phenobarb. In March his zonisamide was at 38.2 (10-40 reference range). The neuro placed him on the zonisamide to help with the focals, as the pheno and KBr were not doing the trick. We also went with zonisamide because keppra had not yet gone generic, and the cost was prohibitive.

Since there apparently is no reference range yet established for the levetiracetam, that one appears to be irrelevant.

I will split his new KBr dose so he gets it twice daily and see if that helps. After reading the article (thanks Vivian!) on the efficacy of the different anti-convulsants it looks like finding the right drug(s) is a huge crap shoot. I'll probably wait until his thyroid/KBr results come back before requesting we wean him off of the Keppra. Maybe this cycle of seizure hell will be over soon.

Thank you so much for your help!
Dawson (aka "Peanut") - Cavalier King Charles/chihuahua/terrier mix?
Adopted at 5 mos old, now 3.5 y/o
1st seizure at 10 mos old, 12/30/07
KBr: (1ml) 300 mg, SID
Zonisamide: 150 mg, BID
Keppra: 3 ml, TID
Thyroxine: 0.15 mg BID

claires friend
Posts: 194
Joined: Fri Sep 21, 2007 2:49 pm
Location: California

Post by claires friend » Wed Aug 12, 2009 9:55 am

I have always heard, and for Morgan this is true, that Zonisamide raises the levels. The idea being you don't have to give as much Pheno and KBr. So I would be very interested in your thoughts on this. For Morgan, they were almost false levels. I had to cut Zonisamide in half so I could get her back on her normal does of Pheno and KBr. For her, all three do seem to work together, it is just a matter of finding the perfect dose of each, without making her so sleepy. We are close, but not there yet. It has been almost one year exactly that we hjave been working on this combo, so it does take time.
Susan Marie
Morgan -Foster Golden, now ours FOREVER !!
First seizure Aug 16, 2006 @9 months old ,very low thyroid
She has been with me since the end of July 07
150mg PB BID
.5 soloxine BID
400 Kbr BID

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

Post by MK's mom » Wed Aug 12, 2009 11:04 am

Susan, thanks for bringing my attention to the Pb affecting the zonisamide levels because I was not aware of that. MK has been doing soooooo well (knock on wood) that I wouldn't want to touch a thing right now anyway, but his NaBr and Pb levels are due this month, so I'll see where we're at. I've never had levels done on zonisamide either.

Anastasia, there's a test for levetiracetam levels that has to be done at human hospitals because the vets don't do it yet. Anyhoo, back in December we had MK's done nearly 8 hr post dosage and the results were <1. The lab tech thought something must be wrong, so we did it again at 1 hr post dosage and it read the same way! I couldn't help but wonder if I was paying $150 a month at the time for sugar tablets or if MK was metabolizing the levetiracetam too fast and it wasn't helping. That is when I requested that we take him off the drug and replace it with zonisamide and he's done much better since. Keep in mind though, that all the dogs react differently to medication, so it's sort of 'personalized' when it comes to Tx.

Vivian
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

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

Post by MK's mom » Wed Aug 12, 2009 11:14 am

Anastasia,

To address your question regarding your vet tweaking the meds; if you're using your primary veterinarian for the most part, I have found as has many others on the list, that primary vets don't know enough about seizure management. I much prefer using the neurologists and you're using one, so if it was the neuro that didn't think to tweak the drugs, perhaps you can give them a nudge in that direction. Is your neurologist interested in seizure management or is their expertise in other neurological areas? Vets can't know everything, but they need to seek out colleagues that can answer questions that they cannot. If they're too puffed up with pride to work with another vet, then you have to find someone who isn't.

Vivian
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

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