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Toby

Posted: Tue Nov 18, 2008 8:30 pm
by MTM
It has been awhile since I have been on the site- quite frankly I was trying to avoid this aspect of my life. It, of course, does not let one ignore it forever, though. I am very saddened to read of the pups that have passed. It brings me to tears and although I imagine the pain is great for the pup-parents, at least the babies are truly free. Peaceful thoughts go out to all of you.

As for my situation, reading tonight has given me a little perspective. Murfy is doing quite well and finally losing weight- he has been on thyroid meds since October. No way to say if it is impacting his seizures or not as he averages two a year and is generally very controlled. He did have surgery at the end of September to remove a tumor from his groin and the tests came back negative for any cancerous issues- other than a nice scar, he is good.

Toby is doing ok as well. His 9 month seizure free streak ended Sunday evening. Everyone says how great 9 months is- and I too think it is great- but I have been struggling with it a bit anyway. I partly feel cursed or something... all three dogs I have had in my life have had seizures... no answers. The seizure, although fairly violent, was not more than 25 seconds and his recovery time was 15 minutes. He did not cluster or bite his tongue and coming up on 48 hours later (11:53 pm CST), you wouldn't know it happened. No changes in diet or environment but last time I picked up his PB, I noticed the bottle was different and the markings on the pills were different. The vet changed vendors but swears this would not contribute to Sunday night- anyone have any thoughts on this? Toby is 2 weeks into this bottle.

I am truly grateful for the lack of severity in his seizure- truly, truly grateful especially after reading what some of you have been through. At the same time, though, that black sense of dread has been creeping up on me. The strength some of you posters show amazes me- incredible emotional toll and you pick up the pieces and keep moving forward. You and your pups are an inspiration. I hope to find that same strength some day. Wishing you and your pups a peaceful night.

PB

Posted: Wed Nov 19, 2008 7:24 am
by richmauer
I had a similar problem. First, I buy my PB from the pharmacy, Walgreen, to be exact. PB comes in 2 ways grains and milligrams. I was always receiving a brand in mg. Then, my pharmacy changed to a brand in grains.
They all say there is no difference, but I know better. 1 grain - 15.43 mg.
If I give my pup 10 pills a day, that 5 mg more per day if given in grains.
The pharmacist, says there is no difference. Personally, I don't believe them.
Now, I insist on the mg. PB and my pharmacy orders them for me. The cost is 1,000 - 15 mg. pills for about $65.
Ask your vet for a script and get them yourself.

Posted: Wed Nov 19, 2008 9:22 am
by MK's mom
Marie,

A 9 month seizure free streak is wonderful, but please don't feel guilty because you feel the dread. you know what can happen and that's what you're feeling bad about, not to mention that when our pups have a long streak we can fool ourselves into thinking they'll never seize again. None of us want our dogs to go thru this ordeal, nor do we want to deal with it. You're justified in feeling what you feel!!

Hmmm, the pills look different, the pup seizes 2 weeks after starting new pills, sounds TOOO coincidental to me!!!! Tell your vet you want the pills you were giving before. Two weeks is just about right for the older stuff to go out of his system and the new stuff to take over. My neurologist SWEARS that the generic Keppra from Canada has fillers in it because it doesn't give the same control that the brand name Keppra gives, so who's to say that the Pb you're getting is the same as the old brand? No one but the labs know what actually goes into those pills and I doubt they'd tell you if they knew. Another thing, you could ask where the Pb is being made? If it's from some 3rd world country, I'd go elsewhere to buy my mediciations. I, too, buy my Pb from Walgreens.

Vivian

PB

Posted: Wed Nov 19, 2008 3:42 pm
by richmauer
The brand of PB I use, which I can say has been effective is made by West-ward Pharmaceuticals Corp. of Eatontown, NJ
I would suggest having your pharmacy or vet get this brand. I just got a refill for 1,000 - 15mg for 65 bucks from Walgreen's

Posted: Wed Nov 19, 2008 4:45 pm
by MTM
I too thought it was pretty coincedental that this has happened after starting the new bottle... I try to be very consistent with the dogs to keep track of things and this is the only thing that changed. Even if it had absolutely nothing to do with it, I would still feel better having the other pills. I am going to call tomorrow and request new meds- it has been bugging me since Sunday night and now that two of you see the same thing, I don't think I am overreacting. Thanks for the input ;)

I Know Exactly How You're Feeling

Posted: Thu Nov 20, 2008 10:08 am
by Chris
I, too, am having the same feelings. Although I check in on the board frequently, I often cannot bring myself to read--especially when the news is bad. I know that's cowardly, but I just can't do it.

Trinity had a 12 week seizure-free streak from July to October. That is the longest she had ever gone. Testing in August showed normal liver function and a PB level of 26 and Kbr of .5 Even though the Kbr level was not therapeutic, the vet said we should not change anything so that when/if we needed to increase meds, we had room to move.

Well, the when/if is now. She's now had 3 seizures in the past 5 1/2 weeks.

I struggle so much with it as we try to do everything possible and it never seems to be enough. Trinity gets her medication more regularly than I take mine! I've racked my brain to try to think of anything at all that has changed, but I can't think of a thing.

The vet will be calling back later with whatever changes in her meds we will make. He believed it would be an increase in PB. She already takes the 92 mg tablet twice a day and she weighs just under 40 lbs. We, and our vet, thinks she metabolizes the PB quickly--which is why her level was only 26. But on the other hand, that metabolism helps keep her liver healthy.

I try to be optimistic and see a bright side to things. There are some positives. In each of these last 3 seizures, we have had to use our liquid valium twice, along with our oral valium. She has one grand mal from 60-90 sec. long. Then 15-20 min later, she will have smaller seizures which involve teeth chomping and foaming but without a complete loss of consciousness We use the liquid a second time then. Four hours later, I give her another 10 mg. tablet of valium. My goal is to keep valium in her for at least 8 hours. This has worked in preventing more seizures and the clustering we experienced in the past. We've not had to go to the Animal ER.

Despite those successes, I still cannot bring myself to leave her alone the next day. It's reaching a point where I cannot miss anymore work. How do you all deal with that aspect. Some days, I think Trinity deals with it all much better than I do. Other than when she has a seizure, she's happy go lucky. I'm a wreck!

Thanks for listening.

Posted: Thu Nov 20, 2008 12:29 pm
by MK's mom
You're not alone, everyone on this list feels your pain.

I HAVE to work, I live alone and my paycheck is the only one come into the house. If my boy is seizing a lot, I have taken the day off and watch him or usually by then it's a hospital stay. Losing your job won't help anyone, we have to live with epilepsy, not live for it. I know you want to stay close to your pup and be there when the monster comes calling, but the sad fact is, you cannot be there 24/7.

Did you know that when your pup has a cluster, you can give him an extra dose of Pb? That works for a lot of dogs, including my own. You can do that for a day or two to break the cycle or you can get another medication called clorazapate that also helps quiet the brain in hopes that the clusters will stop. I've had 2 instances where nothing I did stopped the clusters, so MK had to go to the hospital for them to stop them for me. Clustering is dangerous business and then there's the kindling phenomenon that we have to think about.

Going long stretches is wonderful until it ends and it usually does.

vivian

Posted: Thu Nov 20, 2008 12:45 pm
by Chris
Thanks for the words of encouragement. I just feel so helpless.

I will ask our vet about an extra dose of PB. Any time I've inquired about that with him or with the ER, they've said not to.

Fortunately, the valium seems to stop the clustering. But it was clustering that led us to the valium in the first place.

Trinity has never had seizures on back to back days. So, realistically, leaving her alone the next day should not be a problem. My head knows it, can't get it to my heart.

Another "positive," is that we have always been home for her seizures. Although I know it's not possible, it seems as if she knows when it's safe to seizure because we are there to take care of her. I have a terrible fear of her seizuring when we are not home and not there to give her the valium to prevent clusters.

Posted: Thu Nov 20, 2008 11:16 pm
by MTM
Seizures suck plain and simple. I think the worst part is the fear and the anticipation. As much as you are not supposed to anticipate it, it is very hard not to. It would make life easier if you just knew what days it was going to occur... There is nothing that makes my heart pound like the thumping that wakes you up from a deep sleep. You know exactly what it is before you are fully conscious and I know for me, it is absolutely petrifying. If I could get a grip on the fear, part of my battle would be won but I am not sure how to do that. I would also LOVE to find a babysitter- someone I could completely trust and who would be able to handle things- for when I am at work. We do have some daycares around where I live and Toby attended one when he was little (before all of this) but I am not willing to do the vaccinations and I don't think he would be watched closely enough... It is tough, it is heartbreaking, and it is completely frustrating.

Chris- you mentioned being a coward- I am right there with you. This stuff terrifies me to no end...

Posted: Thu Nov 20, 2008 11:47 pm
by skrpio
Ok Chris and Marie - you need to calm down not only for your pups sake but for your own mental state. This monster scares the hegeebees out of all of us but being under so much stress is not helping anyone - particularly your dogs. If necessary get some rapid relief and use it on you and your pup and try and calm the situation down. No matter how many seizures you have to go through you will never get used to them but you will learn to cope with them.
I know how it is to sleep with one eye and one ear open and until I got a baby monitor in place I did not have a nights sleep for over a year.
Do not go around waiting for a seizure to happen as your pup will pick up on this and wonder why you are so stressed out.
Get a seizure kit ready - ice pack in the freezer and extra meds handy, towels etc so you do not have to cope with this part of the process too.
I do not understand your vet not agreeing to additional PB. Most vets recommend at least doubling the dose after a seizure for at least 24hours. As for the vallium - dogs metabolise this very quickly and the more you give the quicker their bodies learn to metabolise it.
My girl always used to cluster (1 seizure every 3 hours 3 times) The vet suggested extra PB after the first and second seizures and vallium every 3 hours until the seizures stopped.
I do not know about KBr as my girl was never on it but someone on the forum can advise if the dose is correct for the body weight.
If Trinity is having seizures closer together you need to get the vet to tweek the meds and not leave it until she gets really bad or goes into status. I am not trying to scare you just to give you the facts so you know what can happen. Saying oh you should have done this or that is not going to help after the fact.
Keep a diary of all the changes that happen in the household. Do you use air fresheners or fabric fresheners etc, what type of bowl is the water in?
Have you had thyroid tests done and what sort of vaccinations were given.
I hope you have already checked flea and tick treatments out.
I went to a seminar on epi dogs and one woman there with a small dog who had the problem was wearing so much perfume that the rest of us could hardly breathe. Dr Jean Dodds who was talking suggested that maybe this was the cause of the pups problems.

Vets will say that none of these things have any bearing on seizures but on this forum we know that they do and until the vets can be convinced then I don't think anything will be done about it.
Here in New Zealand a lot of vets are changing to a 3 year protocol for vaccinations.
Please for your pups sake keep calm.

Posted: Fri Nov 21, 2008 4:47 am
by Mandypop
I too am very sad when reading of pups that have passed and those owners who are struggling to keep their pups seizures under control. I feel blessed that Poppy has been seizure free for 2 years this Dec.

I rest much easier at night now, but there are times when Poppy does things and I think �here we go again� but thankfully the monster hasn�t reared its ugly head.

I remember a few days before Poppy had her first seizure I was lying on the bed with her and telling her that she was the perfect dog, you are absolutely perfect. It was almost a premonition that something bad was going to happen, and it did.

I feel closeness to those who post on here and their dogs. I feel for those of you who are still fighting with this monster, and admire you all for caring so much for your dogs.

It is through the people who post here that I have learnt so much.

Posted: Fri Nov 21, 2008 8:04 am
by Chris
Thanks for the continued encouragement.

We are as prepared as can be for her seizures. I have a folder with all my notes from each episode and current medications ready to go with us should we need to go to the ER.

We have a bag with the valium, syringes, tubing, vaseline, etc. close at hand. Towels are not an issue....most of our bedding and furniture is covered with pads due to a urine leaking issue that she has always had. It's been worsened by the medications.

I don't know if there's anything that triggers her seizures or not. It's believed that her seizures stem from an exposure to toxoplasmosis that caused lesions on her brain. We've not done seen a neurologist.

Anyhow, our vet is increasing her evening dose of PB for the next 2 weeks. He feels that will help break the cycle she has landed in.

I know I'm over emotional about it. Just wish love alone could help.

Posted: Fri Nov 21, 2008 8:59 am
by MK's mom
Chris,

I, too, feel that if I love my pups fiercely it will cure all, but it doesn't. At least we love our pets and want to help them, it saddens me when I hear of people that will throw out a dog that needs help. Our pups are all blessed to have us, that I DO know. All we can do is bear up and face this monster head on. WE have to be the strong ones, the dogs cannot help themselves, that is our jobs. :)

Vivian

Posted: Fri Nov 21, 2008 9:20 am
by MTM
skrpio wrote:Ok Chris and Marie - you need to calm down not only for your pups sake but for your own mental state. This monster scares the hegeebees out of all of us but being under so much stress is not helping anyone - particularly your dogs. If necessary get some rapid relief and use it on you and your pup and try and calm the situation down. No matter how many seizures you have to go through you will never get used to them but you will learn to cope with them.
I know how it is to sleep with one eye and one ear open and until I got a baby monitor in place I did not have a nights sleep for over a year.
Do not go around waiting for a seizure to happen as your pup will pick up on this and wonder why you are so stressed out.
Get a seizure kit ready - ice pack in the freezer and extra meds handy, towels etc so you do not have to cope with this part of the process too.
I do not understand your vet not agreeing to additional PB. Most vets recommend at least doubling the dose after a seizure for at least 24hours. As for the vallium - dogs metabolise this very quickly and the more you give the quicker their bodies learn to metabolise it.
My girl always used to cluster (1 seizure every 3 hours 3 times) The vet suggested extra PB after the first and second seizures and vallium every 3 hours until the seizures stopped.
I do not know about KBr as my girl was never on it but someone on the forum can advise if the dose is correct for the body weight.
If Trinity is having seizures closer together you need to get the vet to tweek the meds and not leave it until she gets really bad or goes into status. I am not trying to scare you just to give you the facts so you know what can happen. Saying oh you should have done this or that is not going to help after the fact.
Keep a diary of all the changes that happen in the household. Do you use air fresheners or fabric fresheners etc, what type of bowl is the water in?
Have you had thyroid tests done and what sort of vaccinations were given.
I hope you have already checked flea and tick treatments out.
I went to a seminar on epi dogs and one woman there with a small dog who had the problem was wearing so much perfume that the rest of us could hardly breathe. Dr Jean Dodds who was talking suggested that maybe this was the cause of the pups problems.

Vets will say that none of these things have any bearing on seizures but on this forum we know that they do and until the vets can be convinced then I don't think anything will be done about it.
Here in New Zealand a lot of vets are changing to a 3 year protocol for vaccinations.
Please for your pups sake keep calm.
It's ok skrpio- I think most us know the drill and know that being upset will upset our dogs. Sometimes, you just need to vent a little bit and what better place to vent than with people who are going through the same thing? As important as it is to maintain calm for the dogs, it is equally important to deal with the emotional baggage that comes along with having an epi or it will consume you. Sometimes just talking about how scared you are helps lessen the fear a tiny bit- or at least puts it into perspective... you know? The problem isn't the emotion, it is letting the emotion get the best of you and for some, talking about it helps.

Posted: Fri Nov 21, 2008 10:01 am
by MK's mom
Marie,

Jane is well aware that we all need to vent, her words were just trying to boost you up and try to keep your emotions from 'traveling down the leash' as it were. Jane lost her pup to epilepsy and is afraid the boy she has now will start seizing, too, so she's WELL aware and can empathize with anyone when it comes to their fears. We're ALL afraid for our dogs, but we have to try and contain our fears for their sakes, that's all she meant.

By all means, this is the place to vent!!!

Vivian