Update On Rainey -- Final Update Post 1

[Batmom]

It sounds like the Zonisamide + Keppra alone didn't control her seizures. Was her behavior better on those (without pheno), or still nothing to write home about? I'm really just curious. I don't have any more ideas. I wish I did . My heart goes out to you and Bruce and your lovely, disturbed girlie.

[RaineysMom]

It sounds like the Zonisamide + Keppra alone didn't control her seizures. Was her behavior better on those (without pheno), or still nothing to write home about? I'm really just curious. I don't have any more ideas. I wish I did . My heart goes out to you and Bruce and your lovely, disturbed girlie.

 

the Keppra and Zonisamide did not control the seizures even close to adequately it was only when we added the thyroid meds we saw any improvement, but still not enough. Again, I was giving the thyroid meds in calcium by mistake when we finally decided to try the pheno as a last resort.

 

her behaviour improved after getting her off the pheno back in September -- not great, but markedly better than it is now. And her behavior is only getting worse, not better.

 

I'm willing to try to decrease the thyroid meds, but I'd have to check with the neuro and since we just (today) started backing down the zonisamide, I doubt he'd agree. Also, not trying to argue or anything! but if she had the exact same issues immediatly after the first time put on pheno (and no other meds!), and the exact same issues immediately after being put on it again, I have got to believe 100% it's the pheno. How she is acting is 100% a side effect according to what I read.

 

I hope I don't sound mean or angry, it's just that the whole time I have been posting she's been screaming and barking here. I am simply going mad.

[Cully]

Kim, you and Bruce are the best Greyhound parents! I am so sorry for what you all have been going thru. Everyone who knows you also knows how much you love Rainey and she knows too.

No suggestions just support, so call if you need anything. Hugs...

 

 

Kim, Bruce, & Rainey,

ditto to what Karen said.

[cmc333]

How long after the thyroid med did you have it checked again? I mean how many hours between giving her the morning pill and the vet drawing the blood. It needs to be 4 to 5 hours between the two or the results will be skewed. a lot of vet offices don't know this (the people up front) and will schedule you either too soon or too long after you give the thyroid meds. So that can really screw up the results and may have you giving too little/too much in error.

 

Connie

[Guest zombrie]

I was going to say Pbr but obviously she can't have that. Manny was on Keppra and still clustered, adding PBr to it did the trick.

 

I am so sorry for what you are going through, I wish I had some advice

[Devotion]

this sounds so much like our Hans....it literally makes me shake.

 

Hans had a brain tumor which took 2 MRI's to discover and he was having TIA (mini-strokes). His personality changed so much and it was absolutely horrible.

 

I will keep you all in my thoughts. Please remember, you have done the best you can for Rainey. I'm praying there is a solution and a postive outcome for all.

[greyhead]

<BR> I hope I don't sound mean or angry, it's just that the whole time I have been posting she's been screaming and barking here. I am simply going mad. <IMG class=bbc_emoticon alt= src="http://forum.greytalk.com/public/style_emoticons/default/cry1.gif"><BR>

You don't sound either angry or mean, rest assured. And I wish I were close enough to offer you a break. Is there anyone near you with a buddha-like nature who could give you a break for an hour or two? It won't solve the problem, but it would at least let you catch you breath. Lots of good thoughts, white light, and prayers are coming toward you from many directions tonight, I know.

 

Edited to clean up wonky emoticons.

Edited March 5, 2011 by greyhead

[Batmom]

You don't sound mean or angry, Kim. Just tired and worried, as anyone in your position would be.

[nancy14]

Kim, I have no advice, but want you and Bruce to know I am thinking about you and Rainey. I don't know of anyone who is as dedicated to their hounds than you guys. I hope you can get it figured out; 8 months is a really long time.

[Guest LindsaySF]

I've been there. Right down to pulling my hair out and sitting on the floor sobbing due to frustration and lack of sleep. Seriously. Have you read Sophie's thread?

 

Are you a member of the EPIL-K9 email list? They were helpful to me. There are lots of people going through the same thing you are going through, and they will have more advice.

 

My first bit of advice, check her thyroid levels again. Make sure she is not overdosing on the meds. That can cause aggression and other symptoms, so rule that out first.

 

My second bit of advice, is that these symptoms could be related to a brain tumor. I would ask your vet about pursuing another MRI at this time.

 

My third bit of advice, is that this could very well be related to the Phenobarbital. Pheno does a great job of controlling seizures, but off all the AED's, Pheno and KBr are the ones most likely to cause behavioral side effects and personality changes (according to Sophie's neurologist). Sophie is/was psycho on Pheno, especially whenever we bumped up her dose. The pacing and crying was constant, she would eat and eat, chew furniture, chew me, bark and bark, etc. She still does it sometimes, but a good-sized snack will make her stop. We haven't increased her Pheno in a long time, so she is better now than she ever was.

 

When Sophie starts barking and crying it means she is either hungry, or she has to go out. I try going outside first. If that doesn't work, I feed her until she's content. If she still paces and barks, we go outside again. Once she reaches a state of tummy full and bladder empty, she'll go to sleep. She gained a little weight in the beginning, but green beans and other low calorie treats helped, along with increased exercise. She doesn't really like walks that much (she's not a sniffer) but I drag her along anyway. She does enjoy running and playing with the other dogs in the yard though. Honestly she eats SO much food, but somehow she doesn't get fat. I just keep feeding her, as long as she doesn't gain weight I will let her eat anything she wants, as long as she'll shut up!

 

I would increase Rainey's Keppra and/or Zonisamide to try to achieve better seizure control (they tend to have less side effects than Pheno), and then start decreasing the Pheno, with the hopes of maybe weaning her off it completely. What level of Zonisamide is she on now? We kept increasing Sophie's Zonisamide in the beginning because of breakthrough seizures, and I was worried because it seemed like a lot, but she adjusted really well. She did not respond to the increased Zonisamide like she did to every Phenobarb increase, very few side effects really. Right now she is on 400 mg Phenobarbital, 800 mg Zonisamide, and 1,150 mg KBr daily. She has no ataxia, she still runs and plays, you would never know she was on this much medication. She acts the most "normal" now than she has since she came to me in October 2009. She has adjusted to the level of Pheno she's on now, and over my dead body will I increase it again. I believe we're at the maximum Zonisamide dosage, so if her seizure activity increases, we will add Keppra next. Right now she averages one seizure per month.

 

It is entirely possible that Rainey has a brain tumor or some other underlying condition. But checking her thyroid levels and adjusting her medications are much less expensive solutions to pursue right now than another MRI.

 

Where do you buy her meds? I get Sophie's Phenobarbital at Costco. 200 tablets (100 mg) costs around $13. I get her KBr through a local compounding pharmacy ($145 for a large bottle that lasts about 4 months). I get her Zonisamide from Angell Memorial (Boston MA). 240 capsules (100 mg) costs around $48. We only saw Sophie's neuro there in-person once, we've communicated via email since then. But every month they ship her Zonisamide to me from their pharmacy. Their price was the cheapest around, even cheaper than Costco.

 

 

 

 

~Lindsay~

[greypuppyluv]

I will second joining the EPIL-K9 list. You can find out how to join here. I have never posted on it, but I have read the posts, and the people on the list have been through some really rough times with their dogs and have some great suggestions of things to try.

 

I have a migraine right now, so I'm not thinking clearly as to why KBr causes an issue with pancreatitus, but would NaBr (sodium bromide) be an option instead? I know many vets automatically use KBr but Phaelin has been on NaBr for awhile now and he does fine on it. I believe it's easier on the stomach than KBr is so I don't know if that would help with the pancreatitus.

 

Sending more to you cause it sounds like you could really use some.

[Guest tricolorhounds]

Oh my... I believe you must be a Saint! I had the whole month of January last year when Bonkers was recovering from several surgeries that he barked and whined 24 hours a day... I was barely able to sleep and thought I'd go mad. Living like that for as long as you have, all I can say is my hat is off to you.

 

 

Our Lab/Mix Cecily started having mini seizures when she was 13 years old, the Internist put her on 64mg of Pheno 2 times a day. She continued having mild focal seizures for the next 2 years. The Vet recommended the MRI to us but the cost was prohibitive and even if we found out she had a brain tumor, we would not have treated her any differently. The only side effect we ever noticed was being a little unsteady on her feet but it could have been her age too If she had experienced the radical change in behavior that you've described, I'm not sure we would have continued her treatment. It all goes back to quality of life. Cecily was still able to enjoy life, play, eat, interact with the rest of the pack. Just before her 15th birthday, she stopped eating and we knew it was time.

 

It looks and sounds like you've consulted with several Dr's, tried many, many different treatment regimens but have not found any relief or solution to what is ailing Rainey. As hard as it will be, I'd make a list of the things that Rainey enjoyed prior to the beginning of her seizures and compare it to what she is able to enjoy now. It doesn't seem like there is much joy in her life now, not with constant barking and whining, ravenous hunger, lack of quality sleep (especially for a greyhound) and lacking the ability to accept affection. I'm so very sorry you are going through this. My heart breaks for you and what lies ahead.

[racindog]

I'll be praying for you, your family and Rainy. From what you said it sounds liek there may very well be more going on-not just in teh physical realm either- than anybody knows. I would want to know what Rainy's thoughts were. Does she even understand what has /is happenning to her? What are her wishes? Please don't take this wrong but there are times that our loved ones may want or actually need to cross over. IMO we can't always know what is really going on unless we ask them. If it turns out they are too far gone to even speak and understand than that tells you a lot to. But for me I'm big on asking them what they want-it just seems to be more respectful to me. If you're not comfortable speaking with her a good a/c is very reasonable. I use Latifa www.animalscantalk.com. She was a great help to me and Aggie when it was time for Aggie to cross over. If nothing else she can tell her how the constant wining etc. is hurting you. Rainey might not even realize it and the real Rainey for sure wouldn't want to hurt you. God Bless!

Edited March 2, 2011 by racindog

[Guest HHHounds]

You have done so much for that sweet hound. Prayers with you that you will all have some peace soon....

[Batmom]

As well as reviewing Linday's notes with your vet, might be worth contacting the author of this article re KBr, NaBr, and possible alternative therapies for your girl. http://www.vin.com/proceedings/Proceedings.plx?CID=WSAVA2004&Category=1254&PID=8617&Print=1&O=Generic . It sounds like she (Dr. Boothe) has done an extensive review of side effects of individual meds and combos and might have some useful insight.

 

Grasping at straws, yeah, but any port in a storm.

[mychip1]

No advice, Kim - but many prayers.

 

You have done just the opposite of failing your hound. All creatures should be as loved and cared about as Rainey.

[greyhead]

Dee's Goldie was about to be sent to the bridge, until she was given thyroid med. If Rainey's looking at the bridge, I'd miss a thyroid pill and see what happened. Just skip a pill or two. If my theory is right, she'll still have plenty of thyroid hormone in her system to work with, and a vet neurologist told me it's okay to miss a dose or two anyway. If you're going to put her down anyway, you have nothing to lose.

 

 

 

[RaineysMom]

How long after the thyroid med did you have it checked again? I mean how many hours between giving her the morning pill and the vet drawing the blood. It needs to be 4 to 5 hours between the two or the results will be skewed. a lot of vet offices don't know this (the people up front) and will schedule you either too soon or too long after you give the thyroid meds. So that can really screw up the results and may have you giving too little/too much in error.

 

Connie

 

they are aware of the wait, both times she got the pills at 5:15am and blood draw was at 12:30pm -- so plenty of time in between...

 

As well as reviewing Linday's notes with your vet, might be worth contacting the author of this article re KBr, NaBr, and possible alternative therapies for your girl. http://www.vin.com/proceedings/Proceedings.plx?CID=WSAVA2004&Category=1254&PID=8617&Print=1&O=Generic . It sounds like she (Dr. Boothe) has done an extensive review of side effects of individual meds and combos and might have some useful insight.

 

Grasping at straws, yeah, but any port in a storm.

 

thanks, Jey I read the article, and it states that Br causes the same behavior issues as pheno (always hungry)

 

Dee's Goldie was about to be sent to the bridge, until she was given thyroid med. If Rainey's looking at the bridge, I'd miss a thyroid pill and see what happened. Just skip a pill or two. If my theory is right, she'll still have plenty of thyroid hormone in her system to work with, and a vet neurologist told me it's okay to miss a dose or two anyway. If you're going to put her down anyway, you have nothing to lose.

 

thanks for the advise -- but what will this show? I'm just confused, sorry!

[RaineysMom]

My first bit of advice, check her thyroid levels again. Make sure she is not overdosing on the meds. That can cause aggression and other symptoms, so rule that out first.

 

My second bit of advice, is that these symptoms could be related to a brain tumor. I would ask your vet about pursuing another MRI at this time.

 

My third bit of advice, is that this could very well be related to the Phenobarbital. Pheno does a great job of controlling seizures, but off all the AED's, Pheno and KBr are the ones most likely to cause behavioral side effects and personality changes (according to Sophie's neurologist). Sophie is/was psycho on Pheno, especially whenever we bumped up her dose. The pacing and crying was constant, she would eat and eat, chew furniture, chew me, bark and bark, etc. She still does it sometimes, but a good-sized snack will make her stop. We haven't increased her Pheno in a long time, so she is better now than she ever was.

 

When Sophie starts barking and crying it means she is either hungry, or she has to go out. I try going outside first. If that doesn't work, I feed her until she's content. If she still paces and barks, we go outside again. Once she reaches a state of tummy full and bladder empty, she'll go to sleep. She gained a little weight in the beginning, but green beans and other low calorie treats helped, along with increased exercise. She doesn't really like walks that much (she's not a sniffer) but I drag her along anyway. She does enjoy running and playing with the other dogs in the yard though. Honestly she eats SO much food, but somehow she doesn't get fat. I just keep feeding her, as long as she doesn't gain weight I will let her eat anything she wants, as long as she'll shut up!

 

I would increase Rainey's Keppra and/or Zonisamide to try to achieve better seizure control (they tend to have less side effects than Pheno), and then start decreasing the Pheno, with the hopes of maybe weaning her off it completely. What level of Zonisamide is she on now? We kept increasing Sophie's Zonisamide in the beginning because of breakthrough seizures, and I was worried because it seemed like a lot, but she adjusted really well. She did not respond to the increased Zonisamide like she did to every Phenobarb increase, very few side effects really. Right now she is on 400 mg Phenobarbital, 800 mg Zonisamide, and 1,150 mg KBr daily. She has no ataxia, she still runs and plays, you would never know she was on this much medication. She acts the most "normal" now than she has since she came to me in October 2009. She has adjusted to the level of Pheno she's on now, and over my dead body will I increase it again. I believe we're at the maximum Zonisamide dosage, so if her seizure activity increases, we will add Keppra next. Right now she averages one seizure per month.

 

It is entirely possible that Rainey has a brain tumor or some other underlying condition. But checking her thyroid levels and adjusting her medications are much less expensive solutions to pursue right now than another MRI.

 

Where do you buy her meds? I get Sophie's Phenobarbital at Costco. 200 tablets (100 mg) costs around $13. I get her KBr through a local compounding pharmacy ($145 for a large bottle that lasts about 4 months). I get her Zonisamide from Angell Memorial (Boston MA). 240 capsules (100 mg) costs around $48. We only saw Sophie's neuro there in-person once, we've communicated via email since then. But every month they ship her Zonisamide to me from their pharmacy. Their price was the cheapest around, even cheaper than Costco.

 

 

~Lindsay~

 

Hi Lindsay, so sorry about what you're going through too! :(

 

for the thyroid, the aggression started before we ever put her on the thyroid meds... so?

 

for the MRI, Bruce and I discussed it at length last night -- we decided we will do it. It's a lose-lose situation -- if they don't find anything again, we're in the same horrible situation...if they DO, then she's for sure dying. Either way sucks.

 

Sophie sounds like Rainey on the pheno. How long did it take for her to get better after the last increase?

 

wow, Sophie's on a LOT of pb! Rainey is only on 60mg 2 x day...she is on 750 (I think the highest dose?) of the Keppra 3 x day and 400mg of the zonisamide -- 200 2 x day. Although, we just started decreasing the zoni's yesterday to 100 mg 2 x day per Dr.'s advice. She's on such a low dose of the pheno I don't think it would help. And the Keppra/zoni's did NOT work, not at all and the pheno is the only thing that has so I really wouldn't want to go backwards....

 

sending hugs to your girl and you!

[carronstar]

I have been thinking about Rainey a lot lately. I am sorry to hear that the situation has escalated as much as it has. I have no advice as the one series of seizures my girl had killed her but it sounds like you are getting a lot of good advice here. Keeping Rainey and all of you in my thoughts and prayers.

[greyhead]

thanks for the advise -- but what will this show? I'm just confused, sorry!

It will show whether Rainey's behaviors are due, in part, to too much thyroid hormone. If you can reduce the thyroid med and remove that part of the contribution to her behavior, which may be considerable, you can then deal with what's left in terms of the other meds.

 

I'm sure this is all very confusing. Wishing Rainey and your family the best outcome, whichever way you go!

[DaisyDoodle]

Poor baby. I'm so sorry you are all going through this. I have ideas/questions that are probably off the wall, but what the heck, nothing ventured....

 

I know this sounds completely strange and is probably of no use at all, but have you tried chiropractic and/or acupuncture? I don't think either could hurt, and it seems just so odd that it has something to do with eating. I wonder if it's the way she is standing or something. I know seizures have to do with the brain rather than nerves that run through the body.... If nothing else, if you could get her to cooperate enough to get treated with either modality, it might help her relax just a little bit.

 

I know you don't want to add more drugs, but in the seizure threads I've read in the past, folks have used Valium to stop some types of seizures. Since it isn't a long-acting drug (or one that takes days to work) that might be something to try once or twice.

 

Another possibly off-the-wall question from someone with very limited knowledge about seizures--could all of the vocalizing, aggression, etc, be some type of partial seizure (would this be a focal seizure)?

 

Praying for the very best of outcomes--that you get the seizures and the behavior under control.

[RaineysMom]

thanks for the advise -- but what will this show? I'm just confused, sorry!

It will show whether Rainey's behaviors are due, in part, to too much thyroid hormone. If you can reduce the thyroid med and remove that part of the contribution to her behavior, which may be considerable, you can then deal with what's left in terms of the other meds.

 

I'm sure this is all very confusing. Wishing Rainey and your family the best outcome, whichever way you go!

 

we are reducing her from .9 mg to .75 mg today, and will do a T4 test next week before the MRI. It's not a huge jump down, but we'll try. I'm VERY hesitant to reduce (or stop) it more as I really think it's helping with the seizures.

 

I know this sounds completely strange and is probably of no use at all, but have you tried chiropractic and/or acupuncture? I don't think either could hurt, and it seems just so odd that it has something to do with eating. I wonder if it's the way she is standing or something. I know seizures have to do with the brain rather than nerves that run through the body.... If nothing else, if you could get her to cooperate enough to get treated with either modality, it might help her relax just a little bit.

 

we took her to a chiro, didn't seem to do much still kept having the seizures.

 

I know you don't want to add more drugs, but in the seizure threads I've read in the past, folks have used Valium to stop some types of seizures. Since it isn't a long-acting drug (or one that takes days to work) that might be something to try once or twice.

 

we are hesitant to add any more drugs at this point, especially any that will affect her like valium would -- she's had a very difficult time when we've changed dosages (has those "weird" episodes, as we call them -- is very disoriented and they last a LONG time -- very bad).

 

Another possibly off-the-wall question from someone with very limited knowledge about seizures--could all of the vocalizing, aggression, etc, be some type of partial seizure (would this be a focal seizure)?

 

Praying for the very best of outcomes--that you get the seizures and the behavior under control.

 

definitely not a seizure of any kind, she's fully awake and aware. She's just very, very vocal like FEED ME NOW kind of attitude. But 3-4 hours straight of it. I would have to feed her nearly constantly to make it stop.

 

 

and again, thanks to EVERYONE for their kind words and advice -- we really do appreciate it. We are set to do the MRI next Wednesday morning. She's even worse today than yesterday, she seems to be getting worse every day now

[Guest MnMDogs]

I have been following this and although I have no advice, just want to say you're all in my thoughts. I'm so sorry you've been going through this.

[TheFullHouse]

Praying that you find out something soon. You all are living a horrible nightmare at this point and I truly hope you find out the problem and a successful treatment plan can be put in place so life can get back to normal for you all.