Newly Diagnosed 4-Year Old Female Pug

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Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Tue Mar 15, 2016 10:49 am

Hello Everyone, I am thankful to have found this forum, but sad to be here. Sad to read of all your pets battling seizures and the ever frustrating struggle with meds and emergencies. For the first time since this began for Buttercup and I, I don’t feel so alone. Reading threads and learning stuff here has helped, though I’ve been reading on it from our beginning. Buttercup is a beautiful, mischief and sweet pug, who loves to steal anything of mine just so I chase her. It’s a game of hers. She is usually very cuddly, funny, full of energy pug. She is like my child, I love her to bits. I wish I could take the seizures right out of her head….my heart goes out to all of you dealing with pet epilepsy. But for me, Buttercup is the first dog I've had with it. So I'm scared, overwhelmed....feeling helpless and very sad.

I begin her story Jan 30th ’16, where out of the blue while she was sleeping, she had a grand seizure- all fours stretched out and rigid, convulsing/shaking, rapid and labored breathing, foaming at her mouth, eyes forward and glazed, and all on her back side about two minutes. After she came to, she jumped up on her fours, and began pacing, disoriented, scared, not really listening to my voice. She paced between two rooms, slowly responding to my voice, but still obviously frightened about 3-4 minutes. Then she sat by me, not wanting me to leave her. The EM vet said that if it happens again in 24 hours to bring her in. On the better side of seven hours, she seized again presented the same as her first one, and so we went to the ER services. They put her on pheno, did blood work. It’s not due to vaccines, she’s all up to date and they are due in May, June and July. It’s not poisons, etc, so easy to rule that out. Not a topical, she’s never had issue with her flea and tick stuff. Her blood work was all pretty much normal, though slightly dehydrated. Idiopathic epilepsy, tentatively only because of the MRI etc that I can’t afford…. Later that night at home, 11 hours after her last seizure, she had a very small, one, with slight twitches, glazed look but she was totally oriented, and it looked like she would go into one, but didn’t. Less than 30 seconds.

She was seizure free for three weeks until she had a terrible breakthrough. This one started just before 6am on Feb 20th this year, one just like her first two experienced 3w earlier. I called the vet, and they said to bring her in if more than 3 in the next 24 hours. Half hour later, another, about 1 min, same presentation. 15 min later, another that looked like two seizures back to back in total three min long. Starting with eye twitches, ears too, she shook her head as if to shake it out of her, then she fell to her side, all four limbs rigid, stretched out and went into the presentation like the first two seizures she had in Jan. So I called the vet to let them know we’d be there ASAP, but the issue was transportation (unavoidable). Her doctors told me to give her meds and keep her cool. Just before 7 am, this one started with eye/ear twitches, and her left eye moved itself to her outter corner, right eye trying to look at me. She shook her head as if to shake it away. She was licking as if lapping water, and chewing as if eating food, she did have some slight convulsing, but never fully going into a grand as she first presented. She could hear my voice and she looked in my direction when I said her name, but this lasted 3-4 minutes. Ten minutes later, she fell over in slight convulsions, I tried an ice pack on her back and then she jumped out of it and stood on all fours then sat down like nothing happened….. I was like wow….it worked….but then she went into another one about five minutes later beginning with eye twitches, on her backside, then convulsions, and the ice pack did nothing. So, while I was on the phone with the vet, she came out of this one, I think, but instead of pacing between two rooms, she laid on her stomach, like a sphynx, and with her chin on her front paws, was just deep breathing, eyes closed as if sleeping. While I was on the phone with the vet at this time, they were instructing to give a second pill of her pheno and she went into another one within 5 minutes of the one before it- this one would continue for two hours until I could get her to the vet ER services. Vet was very concerned and said they will have her treatment ready. This one was quite a mix of eye twitches, ears too, staring, labored breathing, then into convulsions, and a mix of all how she presented ever in seizure. Only this time, she was continually seizing, without coming out of it. For much of that seizure, she was on her side, labored breathing, some paddling, foaming at mouth, then only slightly stiff limbs, and laying on her side as if sleeping and she presented like this upon arrival to the vet ER services.
I seriously thought she was going to die there, that day.

They gave her IV valium and ten or twenty minutes later, they broke the clusters and she was “out of seizure”, but was in a coma resting. They got blood work and then came to talk to me, all within normal ranges, and her liver, kidneys, etc fine. Course, she was going to stay the night, but they were really concerned over these clusters and mixture of types of seizures that she had, and they felt this was ‘more than idiopathic seizures’. They talked about encephalitis, infection, and pug encephalitis. Fluid on her brain, swelling, structural abnormality, and all of which can’t be diagnosed without an MRI, CAT, spinal, none of which I could afford still. They are not sure if she will live months or years without those tests. Still, they put her on prednisone for infection and swelling and we agreed to take this one step, one set of seizures at a time. They said I could see her before I left, we were only there less than an hour. My little Buttercup, now out of her coma, was sitting up in her cage like a little sphynx, alert, exhausted, well sedated, oriented and she knew I was there. She responded to my voice and touch and I tried to be brave like her. She was handling this like a Boss, I was a wreck. Just in case, I told my little one if it was time for her to go, she could, I’d understand. If she wanted to stay, then to fight this like a boss. I couldn’t live with myself if I didn’t have a chance to tell her how much I loved her, and the blessing she is to me. I know she is a dog, but they understand more than we can see and well, she's my baby LOL. I think they know when people are helping them.

I was in tears. My poor baby, four years old, and I didn’t know if she’d make it the night, or if she did, wondering whether she would have permanent neuro damage. Me, sick with the flu, went home and cried myself to sleep-> well, what I could sleep and sweat. I “slept ‘on and off that night, and with a good check up call, no more seizures twelve hours later. More to come.
Last edited by Lovelight on Tue Mar 15, 2016 12:33 pm, edited 7 times in total.

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Tue Mar 15, 2016 10:58 am

The following day, the doctor was feeling good to send her home, as she had no other seizures and felt she was stable enough to recover at home. She would have kept her another day if she continued to have seizures. Buttercup could walk, eat and drink on her own, but had some new neuro damage that they were not sure would resolve: blind in left eye and when she did walk, it was “to the right” and at times in circles and again, to the right. She was weak in her legs from sedation, unsteady on her feet, and she bumped into things. I was not sure what to expect, but I knew by when I saw her, she needed time if anything was going to “resolve”. They upped her pheno and started her on a titrated dose of prednisone for swelling and or possible infection (titrated down over a month).

When I got her home, she was excited to be there and wanted to walk, but she was bumping into everything, sniffing everything like a maniac. The night before, I cleaned and fixed up an unused/spare bedroom with a small closet that has no door and is totally empty, but a framed opening. It is equipped with a pillow dog bed, puppy pads in one corner for her to ‘do her business’, a shallow, small water bowl with a stand so she didn’t have to bend down low to eat or drink, and I have a child gate for the opening. It’s clean, quiet, and safe for her. This spare room is “her room”. There is a twin bed set in the room, with a tv and laptop computer, so someone can monitor her while she is recuperating. It’s better than a crate, I say. She did not mind this at all. This is now our room when she is having seizure issues and she goes into this room when I can’t be home. It is the safest pace for her to be if she were to seize.

The first day and week were the hardest. She was ravenously hungry all the time. She was terribly unsteady and weak in her legs, so I had to help her stay standing while she was eating or drinking. The only times she was awake was when she needed to drink, eat or potty. The rest of the time, she slept. Even this first week, she showed improvements and was stronger by the weeks end. By mid week, she would circle left and right, and only when she went to find her comfortable spot or do her business. I thought, improvement. Yay.

The second week, she was still ravenous hungry, thirsty a lot, wobbly, awfully whiny and she began howling. Thank heavens her howl is a low sounding one, more annoying than alarming, but with patience, she’d calm down with a chest rub with my hands and sometimes it was bc she was hungry, so I allowed her a small portion to eat, watching and documenting her intake. Every day, she would show me more of her usual personality.

Third week, oh my was the most improved than the first two. Not as wobbly on her feet, hardly circling or walking to the right and she was asking for walks outside. These walks were slow, as tolerated, and she would go to sleep after them (still sleeping a lot though but I’d rather have her sleep than seize of course). Twice as many times she wants to go out to do her business, which is fine, better than seizures. Right? By the end of this week, she was interested in her toys and chew bones. Still there seems to be little improvement in her left eye vision, but perhaps just shadows. She does not follow the toy on her left side, but she does blink if I were to approach her left eye without being in her right eye peripheral vision. At 3rd week’s end, she had to go for her check up with her primary and pheno level test. She hates car rides and the vet, so she was panting the whole time.
Now we are approaching the fourth week in a few days, and by looking at her, you’d not know she has neuro damage or such a bad cluster. On our walks, she jogs ahead like she used to. She is even stealing my things again and has interest in cuddling (she is a HUGE fan of cuddling), which is something she has not done since the seizures started. I feel like she is about 90% her usual self. Howling and whining has stopped.

Her pheno level was lower than when it was tested on her breakthrough day. Feb 20th, the level was 15.5 (the day she had the huge horrible cluster breakthrough and status epilepticus), March 11, it was 13.7. She hasn’t missed a dose, takes all her meds and I have not found ANY pheno pills on the floor or anywhere partially dissolved. When I give her meds, it’s three small treats, one is teaser, second is the pills, third is the chaser. If she drops one out of her mouth, I make sure it goes in and swallows. She did eat and drink more these weeks than from Jan to feb 20th. If that is not why she’s low, I don’t understand how this time her level can be lower than before and for almost 3.3 weeks not be seizing. Her doctors don’t understand either. They are delighted with her response to meds and with some neuro issues that seems to have resolved. They still think something more is going on with her, because her second bout was so serious, and so I have been trying to save for either an MRI or spinal tap. My concerns and feelings about that is…..Idk.

So now, she is taking two 16.2mg pheno twice a day, and has a rectal valium for emergencies only, and she is still on prednisone at her titrated dose, which will finish next week. It was easy for the doctor to say yes to the rectal valium, considering her breakthrough was so serious and SE. I feel a little less anxious having the rectal medicine for emergencies. If it prevents an ER visit and clusters, even better.

But one day and step at a time. If we can get her seizures under better control with less severity, duration and w/o clusters or SE, and out of the ER, even better. Right now, we are enjoying her time without seizures. :wink: Her doctors and I have a plan for her and still, one thing at a time. She does have pigmentary keratitis which needs drops, and an ear infection. These treatments will begin later this week.

Buttercup: Born March 7, 2012
first seizure Jan 30, 2016
Second bout of clusters: Feb 20,2016

Meds: two 16.2 mg tabs twice a day for PB
prednisone, 5 mg until done every other day
for emergencies: rectal valium, 1mg, and I have 5 tubes (cost 40, thanks to my ER vet)
Last edited by Lovelight on Wed Mar 16, 2016 10:15 pm, edited 1 time in total.

ShilohsMom
Posts: 814
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Newly Diagnosed 4-Year Old Female Pug

Post by ShilohsMom » Tue Mar 15, 2016 1:07 pm

Wow, I am so sorry that you and Buttercup are going through this (love her name by the way!) To have a dog with seizures is scary enough but to have that type of episode with different seizure types right out of the gate had to be terrifying. Completely understand how she's your baby. I refer to mine as my hairy children. Some people get others don't. For those that don't, I feel sorry for them that they're missing out on a bond that can't be described in words and is so rewarding.

Love the idea of keeping her in a room when you're not home to keep her safe. I had a friend give me waterproof pads that I've put on the furniture and a waterproof mattress pad on the bed to help protect them. It's been weird though because the last six months or so Shiloh hasn't lost bladder control during a seizure. Which sounds like a good thing but it makes figuring out if he's had one more difficult if I'm not home.

As far as her Pheno level being lower, could it be from the Prednisone? I believe that sometimes other medications can have an affect on the way the body is metabolizing other drugs. Did the vet suggest adding a supplement like Milk Thistle to help protect the liver?

This will definitely be a journey. I hope you're able to find a cause and treatment for Buttercup. It's sad that to get there can be so expensive. I'm not sure what part of the country you're in, but some areas have veterinary teaching hospitals that can do MRI's, CAT, etc and not cost as much as a private practice. Maybe an out-of-state option?

Wishing you and Buttercup all the best.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Tue Mar 15, 2016 5:16 pm

Hello, Shiloh's mom, nice to meet you. :)

When I was looking for a pug, the word Buttercup, My little Buttercup, and "Buttercup a day hey hey" kept on playing in my head. I know, weird, but it was the whole time, every time I was looking for this pug. So that became her name. LOLL I've read some of your posts about your beloved pets and they sound beautiful, wholeheartedly loved by you and your family. I think it is the most beautiful thing and you are right, the bond between pets and family is really something to behold, and experience- beyond words can express. :) As for the "room" I made for her, well, I happen to live in a house that has four bedrooms (technically, it is a 3BR house), only three of us. So I claimed that room for her and no one objected by any means. We are also thinking of installing a baby monitor, and recording video cam in the closet room for when we are not home. I had never seen anyone or any animal have seizures like she did that day. I was TERRIFIED. Considering hers are so serious, we felt this best for her. We have considered sitters, boarding, but that may not always be practical, physically and financially.

Waterproof pads -> excellent idea if yours can’t hold their stuff during seizures. Butter never lost her urine or feces during any of them, but will keep this in mind for future.. This is what I like about this forum, our ideas can help each other out and it’s welcomed. I welcome any info, suggestions etc.

You asked about whether her level was lower possibly because of prednisone-pheno interaction. I asked that when they told me her level was low about interaction between the two meds, and they said it is pheno that affects prednisone level, which is why they prescribed Buttercup 10mg of prednisone and stressed this was to be taken three hours after her am phenobarbital dose. I’m glad you brought that up, as some may not be aware, but I do ask the vet for interactions with pheno/seizures for everything, right down to dog oral care (pet toothpaste). Thanks for looking out. :D

They did say that though her recent level was lower, pheno seems to be doing it’s job and said that is important and said that a low level does not always means they will seize. It is almost a month since her last seizures (knock on wood). They did say they want her serum level around 25, so they increased pheno. I have to have her level checked again in 3-4 weeks, and I don’t have to make appointment, just to call ahead to let them know ahead of time. SO now, I document, when she drinks, eats etc. Did it take over a month to get to that number with your dog? IDK how long it takes, but they did say, it takes several times to get the dose just right. Oh my, right?

They think it may be because she was eating and drinking more (was crazy hungry) this time around than when she started out. Usually Butter is not like many, if she is full, she will be done, even if some left and she LOVES her food. If she don’t want a treat, she won’t eat it, even with the cat around. She’s been like that since a puppy. This time, even if she smelled food, she wanted it, even if she just ate. I only allowed her within reason to eat a little more. It was crazy.

No one has mentioned Milk Thistle. I will ask though. Thanks for suggesting it. You say it is to protect liver? Hmmm….

The MRI thing, I did check with Tufts/Cummings Veterinary Medical School (as I am from RI), they don’t have any studies available atm as it is free if she participates in a study, but they will keep my email and will contact me if one opens (course, I will check on my own from time to time). Tufts/Cummings has a few teaching hospitals, it is where they do the studies a lot, but none offer low cost MRI/Cat etc., unless she is participating in a study (again, then it is free). I still have to check Connecticut and research more. Maybe with the blessings of above and a miracle, I will find something affordable.

Once again, nice to meet you. Thanks for responding here. I am sure we will talk more somewhere on this forum. :D Many blessings to your and yours.

ShilohsMom
Posts: 814
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Newly Diagnosed 4-Year Old Female Pug

Post by ShilohsMom » Wed Mar 16, 2016 9:15 am

Thank you for the kind words. The signature on my email says: God didn't give me the dogs I wanted, he gave me the dogs I needed. Even with all of Shiloh's issues and losing Izzie to Leukemia at a fairly young age, I don't regret adopting them. Thankfully Rylie has stayed healthy. They have all been a real blessing.

I think it's pretty safe to safe that there are life altering events that stay fresh in our minds and seeing your beloved baby have a seizure for the first time is one of those. The first one Shiloh had I didn't see. I was in the living room and heard something hitting the wall, like if he had a toy or something. Izzie had come in and got on the arm of the couch and was looking down the hall kinda weird so I got up to look. At that point the spasming/twitching/convulsing had stopped but he obviously couldn't hear me or see me. He was foaming at the mouth. It FREAKED me out! I ran to the my SUV to open the back end to get him in easier and by the time I got back in the house to figure out how I was going to move him to the car he could get up and sorta walk. I guided him to the car but had to lift him up to get him in (he's 72-80 pounds) and took him to the ER. After blood work he was diagnosed idiopathic epilepsy. So our journey began.

Shiloh was on Pheno 3 years before it started affecting his liver and his values skyrocketed so he was removed. The vet added it back just during his cluster episodes but his liver values start to increase so he can't have it. I won't even let the ER docs give it to him, only the Valium. We've been through a gamut of med changes/additions/removals etc and haven't been able to get good control. He had an episode last week that wasn't as severe as your Buttercups but scary. Over the course of 4 days he'd had 4 GM's but he also had a complex focal seizure and what I were either absences seizures or neurological issues. He'd stare off into space or wander in the bathroom and just stare at the wall. He had the mouth/lip smacking one morning and I turned on the light and he was drooling and could tell he was confused over where he was. I'd heard him make that noise several times over the past month but didn't recognize it as a seizure until I saw what was going on with the rest of him.

Sadly MRI's are really expensive and I think most of the time they only rule out things. I had Shiloh's done at Oklahoma State University which was cheaper than going to a private practice. The vet recommended this because his walking had become worse and he was concerned it was brain tumor. The MRI of the brain looked good. Turned out he has a damaged disk in his back. A couple years after the vet suspects he may have developed Wobblers, which is damage in the neck area (causes issues with front legs) but there isn't any point in doing an MRI because of age and seizures he's not a good candidate for surgery. I really hope the phenobarbital will be just what Buttercup needs to get good control. I have 2 friends with dogs that have seizures that have been managed wonderfully on PB alone. There's hope! I'm sure you'll have good days and bad as you settle into you and Buttercup's new "normal" and we're here to help, encourage, and rejoice in all.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Wed Mar 16, 2016 7:59 pm

I like your quote and it does say it all about us having what we need, and what we can handle. And it is so very true. I wouldn't change having Buttercup, seizures and all, she's my little one.

Sorry about Izzy, but Izzy had the best parents. All your pets have cute names and I can imagine their personalities. I see they are well loved, well cared for and happy. Shiloh is quite a trooper. I am amazed and, humbled by their resolve and strength. At least you were home for his first seizure and recognized even with just foam at mouth, Shiloh needed to be evaluated and treated. Now I understand how you know about Milk thistle, poor Shiloh had some liver issues with pheno and good thing you know that maybe pheno isn't the best for him. It's hard going through med changes, because there are side effects in the 'adjustment' you have to go through all over, plus the worry of onset of seizures after- you're on alert all the time. ....So he is refractory? I'm sorry, I bet that is frustrating. You are amazing really, to be so strong for your pets. Izzy sounds like quite an amazing dog, so smart to let you know to come look in her way that she knew you'd come. All yours feel like that. Can feel the love you have for them all, and it is very beautiful. You have been through a crazy, trying journey too. Thank you so much for sharing all you have. It must have been nervewracking for you with Shiloh. You're handling it like a Boss even if you did freak a little, luckily, you were home and recognized Shiloh needed treatment. 72/80 pounds of love you got there. So your Shiloh has different kinds too. This is good to know, just in that any pet can have different kinds of seizures, and it does not necessarily mean the worst. I'm learning how to take the vet conversations slowly, and making sure I understand what they are telling me and keeping a positive manner. I ask them LOTS of questions that I can muster and think to ask. Buttercup can still surprise them by this being IE and nothing more. Only time will tell right now. It's hard to hear it all when words like "encephalitis", "something more serious is going on", "months to live rather than years" and the heightened emotion of an emergency to wrap your head around it all at once.


And really, it's a learning process when you have little choice but to observe behavior and presentation during episodes, responses to treatments to even begin to think of what is best for them. You don't come to know unless you go through this process. In everyone's stories I read, each is different in how they present when they seize, in side effects and everything. It just shows that a seizure disorder is an intricate disease, the brain itself is complex and still with its mysteries, and treatment is fragile in how all this interacts together and how meds interacts with it all.

I too hope pheno and her emergency valium is all she needs. You gave me hope when you said you know pets who are only on that. For Butter, it could very well be that she could have had "absence" ones previously that I didn't recognize. There has never been a thing out of the ordinary, so I am baffled. I've read that if seizures are not treated from the start, they can get worse. I've come to terms with that if she had any, for I am only human. The first one she had in Jan happened when I was sleeping. I think she sensed the seizure coming on and she went to hide under an end table and that is what fell over and woke me. I called for her, she didn't come within seconds as she usually does, and so I found her seizing on the floor, thankfully, neither the table or lamp was not ON her. Now I know she WILL hide just before a seizure, which is why "her room" is so important. She can't hide anywhere in there with how it is set up. The twin bed is on the floor without a boxspring and frame and it is not as high if she were on it and fell. The TV is on the entertainment ctr, which cannot fall over her. She can bump into it, so when you said about the waterproof things, perhaps I can attach some around the bottom, thanks to your suggestion. No other furniture, so really, it is a safe room. The important this is she feels safe in there, and I can tell she does. It is what kept her calm and what stopped her from walking in circles frantically smelling everything. Now she is better, she knows that is the room we go to sleep and when I have to go out. She goes there to sleep on her own, and she does have free reign to go anywhere when we are home.

Anyway, I digressed. Though I have seen people have seizures, I've never seen a dog have them. I didn't even know what an "absence" seizure is or what it COULD look like... It is always difficult when they get sick, especially leukemia, cancer, diseases/disorder that have no cures, only treatment. Hard enough with accidents, but illness...can't help it much when we can contract anything. All we can do is treat and give the best life possible, regardless if we know causes. Treatment can be better tailored if reasons are found. Except for IE, which there is no reason even if all neuro tests are done. I am not expecting they will disappear, but I do hope we can control them better. Buttercup is demonstrating this is possible, I think, and her vets realize this.

And that is another concern I have about the MRI/spinal stuff, what if all that is normal? What if results are the worst? I couldn't afford brain surgery, or any other treatment that is expensive. If prognosis turns....dire, the money I spent on the MRI could have been for emergency treatment. So I am still thinking about it. I will save and keep checking for studies. I do agree it is for diagnostics and to rule out other possibilities, it is very expensive. The vets Butter sees said it can wait. The treatment for the seizures regardless of origin, is the same. They said if she needs more prednisone later (for swelling and infection), she can have it, and if she doesn't "need" it, it won't hurt her. Antibiotic is another issue, as they have to know type of infection to prescribe any antibiotic. They did say the spinal fluid can help rule out other things, and agreed that if she only has months, it's not worth the cost. Yay, I finally got them to say that. I don't feel the pressure to have it done like I did before, which reinforced the helplessness and sadness I couldn't afford all her tests. I cannot stress how important it is to have clear, concise, communication between vets and owners.

Pet insurance isn't always the answer, as anywhere, most procedures for any treatment require payment upfront. Then each has a "pre-exisiting" condition clause that is defined so loosely that even hiccups can be decided as pre-existing, even if it is written YEARS before a sudden illness. Nevermind the exclusions... One is almost better off saving the money spent for premiums and then you don't have to worry about finances. I've read where people pay for pet insurance over ten years, and something happens when the pet is a senior, then after all those payments, they can't get reimbursed and they are beyond upset and livid. It would help if PI wasn't governed by car and house insurance regulations. Animals are living beings and they get sick, like people do, so why are they considered "property and casualty". I would like to see a real pet health insurance, like people have. Anyway....I digress...again...lol

I've never heard of Wobblers and I don't understand the disc thing. Does a problem with discs present with seizures or does it mask neuro problems and walking? I'll have to check that out too. So amazing the MRI caught that, I do agree it is the bomb of tests for diagnostics.

Seizures and candidacy for surgery...is a concern of mine also. Mine is young, but now that she has seizures, could she even handle anesthesia or would it mess her up seizure wise? Mine isn't fixed yet, a long story, but it is in the plans pending if we can get Butter beyond 3m and seizures under better control. I HAD funds for this (and her pigmentary keratitis) but the seizures came first. My vet explained that there is a condition that is serious involving seizure dogs and spay, where estrogen can trigger seizures, but there is something else regarding that where the treatment would be serious and thousands. I wish I could remember what that was. Anyway, I am worried whether anesthesia would mess her up and later cause more seizures. I am sure, when the time comes, I will ask.

Indeed, I was terrified the second episode, for obvious reasons compoounded that I couldn't get there fast enough. I was terrified she would have permanent neuro damage, and not be even close to the Buttercup pre-seizures. Now at least seeing her recuperate as she has, I am a little calmer. With the emergency protocol rx she has now, rectal valium, I feel less helpless.

To close this, as this post is another long one, sorry for blowing through so many topics at once, I am happy Shiloh and you other ones, have you for her "parent" and family. Seems like he is in good hands with you and his vets. I am sure, like you said, Butter will have her good and bad days, just as he does. I pray for us both, these are few and far between. :) I hope to talk more with you again soon.

ShilohsMom
Posts: 814
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Newly Diagnosed 4-Year Old Female Pug

Post by ShilohsMom » Thu Mar 17, 2016 1:11 pm

Oh my gosh, I had this big long reply, hit submit and somehow got logged out and lost it. I'll have to copy it before I submit in case it happens again. Anyway......

Izzie was my heart dog. She was a 10 month old Labradoodle that came from a home that didn't want her. The neighbors had raised money to have her trained because they said she was the terror of the neighborhood. She wasn't, she was just misunderstood! I was only going to foster her but she bonded with me immediately. The trainer said he'd never seen a dog bond that intensely or immediate. She fit with my other 2 as if they'd always been a family so there was no way I couldn't keep her. She had such joy! In the mornings I would say "Good morning!" and she'd pop up and start licking my face, then flop on her back and roll on me. I miss that so much. She'd fetch the paper and when I did yard work she'd stay on the porch until the mower was off then come down to be with me. She was amazing! Just after turning 8 she was diagnosed with acute Leukemia and treatment wasn't recommended because of how quickly it progressed and would only add about a month which would not have been a good quality of life.

Yep, Shiloh is considered refractory. All his vets have told me he's their toughest case. We even tried acupuncture & holistic herbs for both the seizures and his leg issues but that didn't really work and I couldn't keep plugging money into the next herb. I wasn't aware Shiloh was having different types of seizures until last week so I'm praying it isn't his new normal because I'm not sure how much of that he could take. It can be frustrating but I think I've been doing this so long I'm just at a point where I'm able to accept what it is today and be grateful for what I have today and whatever time I have with them is a blessing.

It can be hard especially starting this journey because you can be so hungry for knowledge and trying desperately to find the magic answer and you realize, there isn't one. It can be depressing to see owners who have had to make the painful decision to let their baby go. To hear stories that owners haven't been able to get good control. Unfortunately we don't hear a lot about the good stuff. The thing is that is that there's hope. Hope that one day you find a cause for the seizures or you get control. I've seen postings where dogs have gone months and even years without a seizure. That's encouraging to me. Butter could definitely be one of those success stories!!! You just never know.

Usually dogs aren't treated if they've only had one or two seizures that are spread out because it could be a fluke thing that doesn't happen again. The problem comes when they go into status or cluster (Shiloh clusters). The more seizures the brain has the more the brain thinks that it's normal so seizures can increase. It's called kindling or mirroring. Shiloh's had as few as 2 to as many as 16 in a 3-4 day period and over the past 6 years he's had probably close to 300 total. So far, he hasn't had any permanent brain damage.

Butter's room sounds perfect and must make you feel so much better about leaving her. Shiloh did have a small table fall over on him one time, luckily he wasn't hurt. I've tried to seizure proof as much as possible, even taking the door stop off because he laid by the door and I was afraid he'd poke an eye out during a seizure.

I keep several type of notes on my phone. One for the questions I want to remember to ask the vet. One has the cost of routine type procedures like the different type of blood work, teeth cleaning etc. and the other is a basic list of date and tests, how many seizures he had that month etc in case I need basic info and don't have the seizure log with me.

It must be hard not knowing if Butter has some other underlying cause. It's so expensive to find out and wonder how many times it's actually given the vets an answer. I can't remember how much the spinal tap was but the MRI's ran about $1000 each. At the end of the day, yes it told me that he didn't have a brain tumor and did have damaged disc, but it didn't add anything to his treatment. Sounds like you have some wonderful vets working with you. It's so nice when you have vets that will be honest with you and tell you if they think it's worth it. I have a tendency to ask them what they would do if it were their dog.

I had pet insurance at one time but insuring 3 dogs got to a point I couldn't afford it. All the ones I had looked at required you pay up front and wouldn't include pre-existing. Also had to be careful of exclusions of breed specific known issues not being covered.

The IVDD (disc disease) is in Shiloh's lower back and it could be genetic or caused by damage during a seizure, jumping, falling off the bed, etc. Long bodied dogs are prone to this and it's usually treated with crate rest and surgery. Unfortunately, Shiloh didn't act like he was in pain at any point I just noticed that his back legs were scissoring. The vet at first thought it was just ataxia (leg weakness) due to the seizure meds which is common. When it got a bit worse he was afraid it was brain tumor or something else and suggested the MRI's. His brain was fine, but they did find the damaged disc in his back. Unfortunately they're wasn't any treatment option for him.

Wobblers affects the spine in the neck region. Shiloh started scissoring his front legs and the vet said that's usually because of something going on in the neck area. It can be hereditary as well, which is what I think is going on. It would be odd to have two different diseases both spinal column not be related.

Shiloh's been under anesthetic many times over the past 6 years for teeth cleanings and teeth removal (he's knocked some out during seizures, even broke my toilet!) and every time he has come through like a champ without any ill affects. What is pigmentary keratitis? I'm assuming it has something to do with coloring?

I really hope you're able to get good control and find the answers you're looking for.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Fri Mar 18, 2016 5:26 pm

Awww see, Izzy's a treasure (Shiloh is too). :D Blessed on both sides, it is the good memories that help balance out the bad and knowing you gave her the best life and care possible. Still though young, 8 years is a long time though not as long as you wanted and I know Izzy's with you and in your heart always. The crazy cute personalities and love they share is ....oh there are no words. They bring us joy and love to no measure. The others lucked out, but you, Izzy and your family, the luckiest to have such a beautiful member of your family. No illness can take that or good stuff away.

I know it is very scary when seizures change, and I do pray it is not Shiloh's "new normal", but he too has the best in you (your family too) and his doctors. Still in good hands and you're right about accepting what is and the here and now. I'm still learning that. All the fury ones who endure seizures - their cases combined- eventually will help others in the future. The body whether human or animal is filled with mysteries, and miracles do happen, everything teaches us something. When I think of all we go through with disorder and disease, I think of the blessings even when going through crises, breakthroughs and changes, but still, we love our loved ones. And it makes us appreciate more with this understanding.

I am grateful that I've found this forum. It's filled with so much. I see how Butter's case compares to others, and I see where she doesn't so I don't have false hope, but rather "realistic expectations" and...hope too and I know things can turn on a dime at any time. My quest for information is to help me understand seizures, the treatments available and the types of things that can happen, and without this help and support, I can't make good, informed decisions for her care, regardless the outcomes. I don't want to be blind and uninformed. Makes me feel less helpless....and I'm more empowered in deciding right by her by being informed. I know there is no cure, only treatment, and I know if we can control seizures regardless of cause as best as possible that her condition will allow, I can handle the occasional episodes though I know it ain't the last she'll see of a vet ER. For now, We're enjoying every day. It's important to do that no matter what happens.

Like you wrote about the fluke, her first doctor did say it can happen, then we'd be looking at a couple years to see where she is at and then go from there. They said if it is a fluke, we won't look to take her off meds until at least then. But once she had the second clusters and SE, they weren't saying that anymore. Nonetheless, You're right, you just never know, she may be a success story.
Six years and 300 seizures, wow, you've been through a lot. Very lucky to have no new neuro damage. (Still scary nonetheless.) Thankful he bounces back without new damage.

After this last episode, the only neuro thing she hasn't recovered is that left eye sight. I think when I start Butter's pigmentary keratitis treatment, I'll still give her drops in her left eye anyway (even though they said she probably won't get her sight back in that eye), just in case, why not give her the best chance? PK is an inherited eye inflammation disease usually caused by a combination or such of things, such as dry eye, or fur hairs or eyelashes rubbing the cornea and it produces a brownish pigment (like a scar or bruise) on the cornea, thus eventually blocking vision. If it's eyelashes, they check the position of them and if turned inward, it's called entropion. Once the cause is treated, the eye has a chance to heal; depending on the progression as most PK does progress, cyclosporine has been known to either stop the progression of pigment or reduce it significantly, but it takes time as the pigment took time to develop. Tacrolimus (sp?) is another good eye drop compound for it that performs as good as Cyclosporine. There are surgical methods to turn the eyelashes outward, or remove a cheek fold if that is where the irritation is coming from. If dry eye, cyclosporine also helps with that. I think the other one does too. Brachycephalic dogs are usually at risk bc of protruding eyes, it's not exclusive to pugs. Her blindness is not due to PK, it happened after her second episode.

Seizure-proofing the house was interesting. I think we all go through that, it's like baby-proofing in a way. Good eye for the door stop, and really anything can happen, so good idea to remove that. LOVE Butter's room, it's really calmed us both.

I too have a journal for Butter. Like you, I have to write down my questions as it was hard to wrap my head around it even happening, let alone the intensity of her episode.... So, I started writing everything, episodes (descriptions as best I can to describe what she does when it happens wo terminology like grand mals. I write what she does during a seizure), times, duration, eating/drinking, meds and times, changes in meds, changes in behavior (if any), improvements, potty issues or none, how she was progressing or when she'd got back something thought lost, stuff like that. Considering memory as it is, writing things down is a MUST.

The spinal tap and MRI for Butter here in RI/MA is on the upwards of 3100. Around 1700-2500 for MRI alone. I could swing a grand in a month, but not two or three. Ugh. Sucks when you can't afford the tests, otherwise, if it were cheaper like your price, I could have had the MRI done by now. I never knew the great expense it is for treating seizures. I've only just begun to price upcoming visits, and I know what the ER charges, her blood tests and stuff like that. I can take Butter into the ER and they'll do her levels wo appt, without charging office visit, AND it is a so much cheaper than if I were to have it done by her primary. Her primary wants nearly 2-3.5 times as much as the ER. "/ Like many here, economizing is imperative. Thank heavens for drug coupons/discounts that allow for medicines for pets. Or her pheno would be twice as much.

I understand better about the disc thing. It makes sense to me now. So Shiloh has IVDD AND Wobblers? My heavens. How is he with this now? We both have wonderful vets to work with. I like that you said asking them what they would do if their dog-it is an excellent practice, because then you know pretty much, what they would do IS the bottom line for whatever is happening. When vets can give you their opinion like that, it shows they care as in people and living beings over making money. Quality care, whether it be in price or assessments, treatment is the best for our fury ones.

Good to know about the anesthesia. I think my anxiety over it was due to fear something could happen, though it is a valid question though. It's interesting about what you said of the "kindling and mirroring" and that "The more seizures the brain has the more the brain thinks that it's normal so seizures can increase". Well....If the brain can learn how to have a seizure or gets accustomed to thinking having them is normal, my question becomes, then, can we teach the brain to not to go into a seizure?? Now wouldn't that be wonderful? I think that is the role of medications to "un-learn" seizures as it corrects the misfiring, but it is an interesting question bc the brain is a learning organ primarily (besides controlling everything about us). The brain can amazingly compensate. An astonishing and fascinating organ, really.

I saw "Healthy Paws" that does allow for chronic conditions, that is if not pre-existing though if once "cured" for I think 18months, it is all "new" again. They allow for serious conditions, including epilepsy, but again it's that "pre-existing" clause so loosely defined and since disease can be before symptoms again coverage is only tentative...it is the only one I saw that even remotely COULD cover, but I don't see how they would cover seizures and not call it pre-existing somehow. It is expensive as usual. I looked to cover Butter last year, I think the quote was from 90 or 120 a month. This is why I feel as I do re: PI. Unless pet insurance changes the notion that pets are living beings and not property/casualty, very little is going to change in PI. I am hesitant in buying it.

Until then, we all do the best we can. I hope you and your loved ones are enjoying your day. :wink:
Last edited by Lovelight on Wed May 03, 2017 7:09 pm, edited 2 times in total.

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Thu May 19, 2016 1:25 am

A little update on my little Buttercup.

She has been doing well and has been pretty much back to normal. She's even been running around at near top speed as pugs like to do. I thought I would never see that again. It's been a beautiful time as she has been doing so well after she had such bad seizures in Feb this year. She even lost some weight she gained and is back to her pickiness in eating. Almost three months since her last seizure, until just a half hour ago....

This one started out with her oriented at first, but her back legs got weak, went out from under her as she had little control of them, her legs twitched for about a minute and she was looking at me, as if to say, what is this?, and then she went into a grand where she fell on her backside, eyes front and fixed, legs stretched out, shaking, and foaming at her mouth. Thankfully, she has rectal valium. Once I gave that, she came out of the seizure about two minutes later. Post-ictal, Her back legs were weak like she couldn't use them and she wanted to pace. I put her in "her room" as I don't wish for her to entertain the post ictal and it seems to calm her.

Her emergency vet said that the valium can make her back legs weak and that she would probably go to sleep (which right now, she is sleeping). I have to bring her in if she has more. It is still a scary experience. I bet for her it is even scarier. I am very thankful she went nearly three months without having any, but scared now that she's broken that streak. All this time, still, in my mind are her vets' words of "months, not years" because her seizures are secondary. I still am a bit fearful of the near future for her. Course, I was hoping it would be long between any breakthroughs. I have been amazed she went so long seeing how she started out so badly. Her vet said just a while ago that she did just go through almost three months without any, that perhaps we'll get to that again. I certainly pray so.

I'm going to be up the rest of the night, and day keeping an eye on her. I pray that she'll be ok. I've been reading a bit here and there on the board and have been happy to hear those doing well. For those having rough times, I hope it gets better for you and your beloved pets.


~Light



First seizure: Jan 20,2016
Second episode: Feb 20, 2016
Last seizure: today.

meds
Pheno- 32.4mg every 12 hours

for emergency:
1mg of rectal valium given at first sign of seizure

ShilohsMom
Posts: 814
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Newly Diagnosed 4-Year Old Female Pug

Post by ShilohsMom » Thu May 19, 2016 9:28 am

I'm sorry that Buttercup has had a seizure, it's never easy, but to have such a long time in between must be difficult for you. Hopefully that will be the last one for a while and you can get some rest.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Thu May 19, 2016 12:39 pm

Thank you, Shiloh's mom for your response. It's been wonderful seeing her so happy and truly back to as she was before all these seizures began (remember the vet warned Butter might not live beyond three months?). We have been immensely enjoying that time and Butter has been very happy. Her being happy, makes me happy. An amazing blessing, this time has been. That hope is really something, it made me stronger today for Butter.

I wondered that since she's lost a little weight, if it has affected her level (if her pheno now is too high), but she doesn't present as other symptoms, unless you count her ataxia this morning. The vet just told me that seizures present in different ways and because she had use of them after the seizure was over, she felt the leg thing was more seizure than anything else. She does not think her pheno dose/level is too high, or low (as her last level would indicate she was at 13.7, and we only went up a half pill per 12 hours), even with some weight loss, she thinks it was just "time for a breakthrough, as they are to be expected every now and then to remember and at three months, her body is still adjusting". She reminded me that breakthroughs are inevitable but, she could go again another three months without any. She said it could just be she needed a boost from the times I was late in giving her meds. Three times this week, I missed her morning med by at most an hour and half (unavoidably) and I know pheno works best if given on time as consistently as possible, and so I felt really bad. I'm doing the best I can.

So this morning, she had a second one after her morning breakfast, potty outing, and meds and the seizure wasn't as long as the first, thanks to the valium. She has been sleeping most of the morning. The vet said to let her rest in "her room" for the day, but course, to monitor her closely. When she clustered in Feb that horrible day, she had many in succession over an hour and a half, then went status-and this time she went 5 hours between seizures, and now 7 since the last, so this time is definitely less severe. Thankfully.

I thank heavens her vet gave her that script - I knew in my heart she would need it at some point. I hope we can make it through today without further seizure activity. Course, that is all we want for our furry ones that and to live happy in between. And no, it is never easy for any of us or pets, no matter how many episodes they have.

How is Shiloh doing? :)

jenniesmith
Posts: 20
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Location: Los Angeles

Re: Newly Diagnosed 4-Year Old Female Pug

Post by jenniesmith » Thu Jun 09, 2016 4:04 am

As far as her Pheno level being lower, could it be from the Prednisone? I believe that sometimes other medications can have an affect on the way the body is metabolizing other drugs. Did the vet suggest adding a supplement like Milk Thistle to help protect the liver?

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Tue Aug 23, 2016 4:48 pm

Hi Jenny Smith, sorry for a late answer on this, for some reason I didn't see this til now. The vet told us that it is the phenobarbital that lowers the effectiveness of the Prednisone, so a larger dose of Prednisone is used in dogs on Phenobarbital. They said sometimes dogs have breakthrough seizures and then have none for a while. She's been doing well, until Sunday into Monday, which I will write about under this post and answer to you. It's been 3 months and 2 days since her last seizures.

It is something to think about though, when other meds are given to consider interactions etc. I am very careful on everything I give her, and I do rely on our vet to consider interactions regarding medicines (though I do research myself). So it is good to be mindful of this.

More on Butter in a moment....

Lovelight
Posts: 64
Joined: Sun Mar 13, 2016 11:46 pm

Re: Newly Diagnosed 4-Year Old Female Pug

Post by Lovelight » Tue Aug 23, 2016 6:06 pm

Butter has been doing great in between, I thought we were increasing time between episodes and we were...she went from three weeks between episodes to just under three months, to 3 months and 2 days between.

This last episode of clusters was different from before. She had two grands 10-15 seconds long and I gave her rectal valium each time as that is her protocol. She also had 7 partial seizures, all of them lasting anywhere from 5 seconds to 20 seconds. During the course of these, and a few phone calls to the vet, by 7 hours later, Butter had received three rectal valiums (the maximum in a day for home dosing) and two additional full doses of phenobarbital. (I had to wait to bring her in because our second car is in the shop and the only usable car was used to go to work.) The other difference between these partial seizures, she had NO post ictal, she recovered and was normalized immediately. This was so different from her SE episode in that those were closer and closer together and more severe in intensity of seizure activity, where each one was lasting longer, having little or no recovery between. These this time, were small ones, very few seconds, and recovered between each one within seconds.

Upon evaluation, the vet said she was completely normalized, without ANY neuro deficits. And so, since Butter had additional doses of phenobarbital, we had to hold off on obtaining a level. We couldn't increase phenobarbital without a level, so then we discussed adding on an additional anticonvulsant. The vet suggested Zonisamide because it is documented that it is good for partial seizures, is a good add on to pheno, and has rare but few side effects. And so, now Butter is on 100mg of Zonisamide, in addition to her pheno and the emergency med. She said it might be beneficial for Butter to have two anticonvulsants, and said with this addition, we may not have to increase pheno when we can get a level. In a week or two, I have to bring her in for a complete blood panel, with pheno level, and we'll go from there.

Since starting her on it yesterday, she's now had three regular doses, and so far so good,knock on wood. She does have an increase of thirst and appetite, and is more sedate after taking the med, but I am not sure if all that is due to the extra pheno she had the other day, or the new med. We'll see what happens.

Anyway, I hope everyone out there is doing well. If some are having a difficult time, I pray things get better for you and your beloved pets.

mariakatosvich
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Joined: Fri Jul 22, 2016 1:12 am

Re: Newly Diagnosed 4-Year Old Female Pug

Post by mariakatosvich » Thu Dec 08, 2016 3:57 am

it's a learning process when you have little choice but to observe behavior and presentation during episodes, responses to treatments to even begin to think of what is best for them. You don't come to know unless you go through this process. In everyone's stories I read, each is different in how they present when they seize, in side effects and everything. It just shows that a seizure disorder is an intricate disease, the brain itself is complex and still with its mysteries, and treatment is fragile in how all this interacts together and how meds interacts with it all.
Name: Skyla
DOB: 26 Feb 2010
Breed: Maltese Shih
First Seizure: 23 Apr 2014
Last Seizure: 2 Jan 2016

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