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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Mon Jan 16, 2017 7:26 pm 
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Buttercup had a rough September, where she had one cluster episode of 7 partials (or 14, depending how they are counted, as there were many with another seizure happening within a minute of the last. In other words, the seizure might not have ended. I wrote the times anyway, let the doc see the times, and she said it was more like 7, with some lasting to account for the times), then about ten days later she had a breakthrough of ONE seizure on Sept 26. This was the first time ever that she didn't cluster. I know, sad she had any, but thankful it was just one and only about 15 seconds. That day, her doctors increased her phenobarbital->40.something mg per dose. I was able to do this at home.

She was doing good for a while, but during the last two weeks, she refused food a whole day three times. She vomited after eating on four occasions (no vomiting after medicines), and spit up a little on four other occasions. Sure, in the past she has vomited or spit up, but not anything concerning like this. Butter has been a picky eater before all this began, but she never went a whole day refusing food. Sure, there were times she was not hungry at mealtime, but then she would be a few hours later, or if she was ready to eat by the next mealtime, she would get a full portion, eating most of it or all. Any time she asked for food, she gets it as she has never been one to eat when not hungry (except her ravenous time after her first SE seizures in FEB last year), not even when I have food she likes, like chicken etc. She is not overweight, or under, as she did drop a few pounds since the spring when her weight went up to 22 lbs. She is now 18 pounds and something. Before all this began, she was 14 lbs.

The one thing I have changed in the last month: I no longer give her meds hidden in food. She got smart to that. I tried pill pockets in the past, but she hated them. Since a month ago, I tried Pill Pockets again, and now she likes them. I have different flavors to mix it up a bit. It could have been that she was anxious over med/food time being the same time, but since I changed all that, she is not as anxious at med or mealtime. More on this in a moment.

Her latest bloodwork done Jan. 3rd showed a slight increase in her liver values, as expected due to the last pheno increase in Sept, but they said it was nothing to worry, just means that she needs bloodwork checked in 3m, rather than 6m at the moment for monitoring. Her last pheno level was 30, just on the higher end of therapeutic level and we never had her level beyond 15 until this last increase. Something to keep an eye on, of course. Her wellness exam was fine, with the exception of the liver value and WBC's were slightly increased. Every time we have taken her blood for tests, her WBC's have always been slightly up from normal range. More on this in a moment.

As of yesterday, Butter was 4 months seizure free. She never went that long without seizure activity. However. This morning, Buttercup had a really bad cluster of partials lasting a little over an hour before we got to the vet. She had just a couple minutes of "recovery" between the first three partials, but then the rest of the time, she went status epilepticus. For some reason, her rectal valium was not effective, perhaps due to fecal matter in that lower part of her rectum? There was feces on the syringe after administering it. IDK, the vet said it was possible. The vet said to give her a full dose of her regular meds about ten minutes into the episode, and a second rectal around 30 min after the episode began), but again, she was not responsive to that and continued having partial seizures. And so, at 35 minutes into her episode, we were on the way to the emergency vet.

These clusters were not full-on grands, hardly any foaming at all (about 30 sec of foaming). Eyes moving and twitching, ears twitching, slight shaking of her limbs and body, some licking and chomping like eating and at times falling to her right side laying stretched out but not fully stiff or rapid shaking as when she has grands. She would turn her head to my voice, but she never fully came out of any of them in between. She has had partials before, but these were a little different. And this is the second time she went status.

Anyway....
Upon arriving, they gave her IV meds and within minutes, she was out of activity and beginning to normalize and respond to voices. They said her glucose level was a little low ( dr said not low enough to cause this episode), so they gave her glucose and Butter ate a little food. Yesterday, Butter ate both of her meals and wanted more, which I gave her. She has been drinking as usual. After going over stuff with the vet, she still thinks Butter has encephalitis and she said she would consult with their team neurologist (whose office is 40 min away in the other direction). We talked about increasing pheno slightly, since her Zonisimide dose began at the max or that we could add potassium bromide. We talked about her vomiting, said sometimes their tummies get upset, especially pugs, just to keep an eye on this. She said she could give an anti-nausea/food stim med for the times she refuses food. We're all concerned over her eating and vomiting as this has been the only time in her life she's vomited/spit up as she has. They are going to keep her until tomorrow.

I saw her before I left, poor baby was anxious, could hear, but could not walk. She moved herself right into my arms with her head on my shoulder as she was laying in her cage. She was quite responsive, but shaking and looking over her right side at times. Poor baby. So I talked with her to help calm her, I swear she understands. She was calm when I left and comfortable.

Their neurologist does want to see her (and we will do that) and advised to increase the pheno a little and see what that does rather than adding another anticonvulsant at this time. Neuro wants to give her Clorazapate for emergencies instead of the rectal, considering she had two this episode within an hour and it did nothing to bring her out of it. They also want to give her a steroid (one time injection). She is to have bloodwork in a couple weeks and then we can go from there.

Even despite today's episode, she did go 16 weeks seizure free, which is still promising (Sept 26, 2016-January 16, 2017). We enjoyed every good day. And so, our journey continues. Trying to be strong, for her.

For those out there having a difficult time, I pray it gets better for you. For those doing well, I pray this continues to improve for you.


-Light


Last edited by Lovelight on Mon Feb 13, 2017 9:07 pm, edited 8 times in total.

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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Tue Jan 17, 2017 6:10 pm 
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Update on Butter.

We were supposed to take her home today, as at the time of that call, she had no more seizures since yesterday. The vet said Butter was doing good and we could pick her up after 7 tonight (after meds). The vet said to keep her til tonight wasn't going to cost more, and since they were watching her already, we could try to enjoy the day. I thought that was very kind of them and thoughtful. As much as I love my little Butter, for now, it is better she is in their care after yesterday's episode. Her doctor and I know that Butter's recovery will probably take weeks to resolve, and that means little sleep and constant monitoring at home. We all know....how this can go.

Then a few hours later, the vet called again (sometime in the mid afternoon) and said Butter had a small seizure (just seconds and a partial one) and she was done with the seizure by the time they had the IV valium drawn, but they gave it to her anyway (which is fine of course). She continued to say...it was at that time that they noticed a phenobarbital pill partially dissolved, near her (Butter has meds at 7am and 7pm). Obviously, the little stinker ate the pill pocket and spit out the pill. I had to laugh though, as I can picture Butter happily eating the pill pocket but mushing it around to free the pill inside, then spitting that out. I told the doctor that Butter does like the pill pockets though, but again, she is pretty smart. I just had to laugh just at the visual. The vet laughed when I called Butter 'the little stinker". I was happy to make her laugh because she sounded pretty nervous telling me what happened. She said everyone felt so bad they didn't notice the pill (it was 7 hours after her dose that they found the pill) and said they will note that and make sure for next time that Butter swallows her meds. The vet wanted to keep Butter another night, forgiving the hospital fee for tonight as they felt responsible for the pill and small seizure. I consoled the doctor, said it was ok that we're only human, and well, you can't predict when or why she'll have a seizure, or how good she can be at cheeking/hiding pills and spitting them out. It happens. They were relieved I wasn't upset. She said they are starting Butter on the Clorazapate for tonight because she had that little one and we'll have enough for three episodes not counting tonight's doses, and too they want to see if Clorazapate is effective.

(Incidentally, they told me the Clorazapate was $15, about $23 cheaper than the rectal valium, just info for anyone looking for medicine costs).

I was grateful for their honesty, and compassion. The entire staff are awesome there, and I've told them many occasions. I've been very grateful for their doctors and staff, almost their entire staff knows Butter. This month, will be a year since Butter's diagnosis....

So, Butter will stay tonight, and I can pick her up tomorrow, hopefully.

Hopefully, Butter will be feeling better soon. I do believe she is on her way to it. Vet said she could stand now...yesterday, Butter couldn't work her hind legs.


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Sat Jan 28, 2017 3:37 am 
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Well, Butter ....for a week, I saw steady improvements. She was eating all her portions and keeping it down, but wasn't drinking regular water on her own, except a few times. So I added more broth to her meals and gave her broth separately to encourage fluids, while still offering her water often. She drinks all her homemade broth - which is her meat/protein baked or boiled in water with no added spices or flavorings. Her vet said this is ok, and as long as I am offering her water too (I am), she is getting enough fluids. She was walking good, getting stronger, running around even at times. Though last week, she had not associated going outside and bathroom, thus having some accidents (course, I expected this after her SE last week). This week, she is now voiding outside and at times, running around the back yard like she loves to do when we go outside. You know, pugs love running at top speed. I love when she does that, she is SOOOOOO happy when she runs. Anyone out there having an issue with their pet drinking, try a homemade broth as described. It may help.

She did have a seizure episode Jan 24th, just a week after her last episode. It was rather strange, as these were different.

She had two partials affecting her left side of her body (both a few minutes), was partially aware and the intensity was mild as far as the shaking, stiffness I usually see her have. Then for an hour and half more, she had the strange part: fully oriented and aware, with slight hind leg movement like she was going to get up and she tried a lot to do so, front leg stretched but bendable. At one point, she even growled at her hind leg. I mean, she growls if a flea bites her and looks at where it is coming from and so I felt she was pretty aware, and the vet agreed. The vet tech said this could be post ictal stuff and or side effect from Clorazapate? IDK they felt I didn't have to talk to the doctor, and to give the clorazapate time to work (it took a little more than two hours to be really effective). I guess I didn't expect the clorazapate to take that long. They told me if her condition didn't improve within a certain time, or if I think she needs sooner, to bring her in. They were not worried, but I was scared.

Anyone have experience with 'tremors" like this? I actually forgot I had rescue remedy, and then I gave her a couple drops. These 'tremors' stopped within minutes of RR and that was when the whole episode ended (not saying RR treated her tremor, RR calmed her). It could be Clorazapate finally kicked in too, and this too was the strange part to me. I gave her food, broth and she wanted it, ate/drank, then she fell asleep. About three hours later, she had a little 'tremor' in just her front left paw. Another drop of RR and this 'tremor' stopped once she was calmed. She then fell asleep. Course, I still gave Butter her Clorazapate when it was time to (every 8 hours for 24 hours). She's had no other seizure or type of one activity since.

I recognize, I was scared reasonably so, due to recent episodes, and I've never seen her have these like 'tremors'. She may have had a tremor before, IDK. Some of the activity was difficult to discern between real seizure and what isn't, but I think the difference is the level of awareness?? I don't know if these are 'tremors', but when I read about them, it seems this is what happened. I was concerned how the episode presented and after her having a second status episode last week, I was scared this would turn into status.

Otherwise, Could it be the medicines she is on IS taking care of certain types of her seizures but not her other activity? I have lots of questions for the neurologist. It's our first one in Feb and we have no choice but to wait. And I do feel, as long a she is eating, drinking and showing some improvements, she's doing ok, but anytime her seizures change, it scares me.

I know it takes time. I'm trying here, to do the best for her, and not panic or be emotional. I think these last two episodes really hit upon my fears and past feelings of helplessness, and sadness knowing her seizures are secondary. Remembering her doctors said, she may have months not years....Reading about tremors, knowing these are secondary to illness, like a tumor or other injury like swelling and infection only reinforces the diagnosis that she has something more serious than IE going on. I've cried a lot this week as it is so hard watching her go through this and going from one extreme to another, new things showing itself, and it' so frustrating. Boy this is a stitch of a disorder. It frekkin sucks. Makes me appreciate her good days more, and thankfully, we've had such blessings.

Since the 24th, she's been sleeping a lot, which I expected and of course, that is ok. Her pacing and circling has diminished, and I've seen other signs of her normalizing even better than how she was Monday. And that is a good thing. She even asked to come sit on my bed with me, she has her way of 'asking' as all pets do. It was nice to spend this normal time with her.

And so now, we wait and see, taking day by day. I'm doing the best I can. I know my little Butter is too. I wish I was as strong as she.

I would like to share a picture of her, how do I do that??


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Wed Mar 01, 2017 11:04 pm 
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Well, we were able to see Butter's new neurologist on Monday. It's taken me a bit to collect myself because well, it's what I feared the most. Her neuro is a specialist in encephalitis, refractory cases. It's why we chose her. She was well prepared for our appointment. I was impressed. The first thing she said after she asked us questions for clarifications, was that with absolute certainty, Buttercup's seizures are a symptom of something else, that it isn't IE at all.

The doctor thinks, with 99% certainty, Butter has PDE- Pug Dog encephalitis, also known as necrotizing meningoencephalitis (NME) (EVERY symptom Butter has had is one of PDE). I didn't know that. She said she strongly feels Butter has the slow progressive PDE, as she's been symptomatic for a year and all with the rapid progressive type usually die within a few months of onset of symptoms. A lot of previous questions I had now have some answers that makes sense. It all makes sense. Only 1.2% of Pugs come down with it and a hefty 40% are carriers of the genes that cause it. The condition is genetic, inherited (by either carriers or affected parent, or often of pugs that are closely related), autoimmune mediated, and has two classifications (rapid or slow progression). It is a horrible disease and one of the worst Butter can have.

Her second impression is something "at best"->intracranial such as hydrocephalus, or a malformation somewhere in her right brain, something like this. She does not think it's anything tumor. She did ask about an MRI at the least to help confirm either impression, if we could, but if not, it's ok, that she will begin treating Butter for PDE. She said an MRI will show where it is in her right side brain, how it's progressed, and will help her specialize treatment. She didn't give an estimation of how far this has progressed or life expectancy, other than to say, we'll take this 6 months at a time. Depends on how she responds to treatment.

We've started the PDE treatment and made some adjustments in her regimen: increase slightly in pheno, denamarin for liver support and because that has something that can help her brain (I did ask about milk thistle, but she said she wants her on Denamarin), prednisone for her PDE and inflammation, zonisamide the same (but it can be increased later before adding on another anticonvulsant), and both clorazapate AND rectal valium for emergencies. So we discussed what to do when etc. We know Butter also has in the past gone either three or four months seizure free, she said Butter may have that at times again, but to understand when her disease progresses, and it will with certainty, her seizures will get more intense again. On a positive note, the doctor said once we have Butter on PDE regimen for a while on steroids, it is not uncommon for some persistent neurological symptoms she's experienced to finally resolve. Specifically in example, her eyesight in BOTH eyes and it has to do with treating her inflammation as why it can return. Her last SE seizures in January this year had mildly affected her right eye, the one that could see well. (So I was not crazy last year when I said I thought Butter's left eye was seeing shadows or something after being on steroids for a month. Her primary said she could NEVER get back her eyesight.) Time will tell. it sure would be nice to see Butter enjoying eyesight again, and stable legs, even if only for a while. She also mentioned we may have to suppress her immune system, which is prednisone right now. She didn't say much about whether we would need to do more steroids or different ones (maybe she needs the MRI for that?). I didn't ask yet but will when we need to talk about that. And ....no more vaccines, NONE, not even rabies vaccine. (Good thing I spoke up to Butter's primary who wanted her vaccinated and spayed asap). Her neuro said we could do a spay, as it is in her best interests with having seizures, but she does not recommend it now, maybe in 6 months. Nice to know I made some right decisions.

I feared PDE was what the neuro would say. But, well, it is what it is. Of course, I was hoping it wasn't. Course, I am devastated and deeply saddened. However, I feel I have a good doctor for Butter and Butter is here, alive and doing ok now ( she's got a lot of spunk today). I know her outcome is the same, that she will die from PDE eventually, but I am determined for her to have the best time possible. I love her like if she were my child. Devastated we can't cure her.

I apologize for having long posts, I just share her story here in detail as it comes, not only to find people who have had dogs similar to what Butter's experienced, but to help others as well. Now that we know this is her most likely diagnosis, I will say this. PDE is also known as NME (as I stated above) that is present in other breeds like Yorkshire terriers, other terriers (Boston Terrier), Maltese, Coton du Tulear, Pekingese, Chihuahua, shih tzus, Lhasa apsos, and Papillons and it's as quick and devastating. I just want to say gently, if your dog has similar stuff like Butter and your dog is a Pug, or a small breed, don't wait to go to the neurologist. PDE if the rapid one, is seriously FAST, like weeks and just months from initial onset of symptoms. It often consumes before you can figure it out. My only regret is not going to the neurologist shortly after her first SE seizures because we could have been giving her treatment for her PDE then. I don't want any of you to make that mistake. I'm not saying for you to diagnose your dog, but to compare and consult a neuro if similar. These are the only reasons why my posts are long. I want whatever negativity Butter endures, to be out there to help someone. It turns a negative into a positive. I am sure Butter would want me to share her story to help others.


Butter's new regimen
Zonisamide 100mg twice a day
Pheno 48.6 mg twice a day (or 1.5 pills of a 32.4mg pill)
prednisone, 5 mg once a day every day
for emergencies,
rectal valium 18mg/ml - for me to give at first sign of seizure, if no improvement in 2 min, give another and call neuro
when Butter is awake and can swallow, also give 7.5mg clorazapate (and follow through with two more clorazapate every 8 horus for 24 hours).
Jan 24, 2017 last seizure activity
Denamarin, one pill once a day for liver and brain support


Last edited by Lovelight on Fri Mar 17, 2017 10:06 am, edited 7 times in total.

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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Thu Mar 02, 2017 10:23 am 
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I'm so sorry to hear about Buttercup. I hope the medications will keep her healthy and happy for much longer than you think.
It's so generous of you to post everything so that someone else may be able to catch it earlier.
Please don't beat yourself up about not seeing a neurologist sooner. We all go by what we have available to us and when it comes to seizures, it's sketchy at best. Unless you had someway of seeing in the future there is no way you could've seen this coming. You're a great mom.
Take Care of yourself.
Lynne


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Thu Mar 02, 2017 5:16 pm 
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Thank you, Lynne, for your very comforting words. :) Your words have comforted me a lot, really, thank you.

I feel we all made the best decisions we could at the time things happened. It's hard when the symptoms points to more than one diagnosis, and then Butter had three months seizure free twice, once for four months, thus thinking, we were getting some kind of some control over her seizures. That's ten months of no seizures, which I still consider good as we had some really good days during those months- at times Butter was near her pre-seizure diagnosis normal. It's been wonderful to see her have those times. All her doctors have been helpful, and have suggested from time to time a consult, and have said maybe PDE or some kind of encephalitis and so it is my only regret. Her neurologist told me that Butter's seizures are times when her disease is progressing or has progressed and the brain has to adjust, and so her meds had needed adjusting too, which we did do, but we could have done more like giving her prednisone when they thought she had swelling. So unlike IE, where the seizures come out of no where and no cause is able to be found, Butter's seizures are the symptom of disease, not the disorder of IE. Whatever is seen between seizures are additional symptoms, not damage from having seizures (though there can be damage from seizures that she's endured). Had I this understanding at any point last year, I would have done the consult sooner. PDE is so frekkin rare- What were the chances? We are all only human. Now we know, we know what to NOT do. Right? We all have done the best we can for her. Her neuro said we have done well with her condition, for she has seen worse.

I agree with what you said about being at a disadvantage (for IE seizures, and secondary too regardless of cause), and the doctors are at one too considering PDE is so rare. There is only so much they know right now. Since Butter's onset of seizures, and they told me possibilities of diagnosis, I've read a lot, quite often til I could not take anymore reading for that day. But some of stuff you read online is not all accurate, like you said, sketchy. Most information out online lists only a few symptoms no matter what disease or disorder you are reading, while vets have a much larger list. In detailing Butter's story, I've listed more symptoms about PDE than what anyone can find online. I hope it helps someone.

I've had many moments of upset and anger, tears and bad days, but I will not let this PDE get the best and rest of Butter. I've already asked Butter's neuro if she would be open to studying Butter - you know, to contribute what she finds in Butter's case to the research with PDE. She can have whatever she wants when 'that time" comes, you know the time I'm talking about, but to write her findings, course letting me know too. They only have the cases that have been reported and some 'donations' after the dog has passed to study. I know Butter would want to contribute to this research to help other dogs someday. Her neuro doctor said she would with tears in her eyes. I do pray someday, they can develop better treatments and eventually a cure, but they cannot do it without more understanding of PDE. We are all bigger than our parts, and I do get it. This is why I asked her neuro to do this with Butter. I do encourage others the same, and of course, I understand it is hard to make that decision. I am feeling better having asked her neuro this favor.

I will from time to time write more as Butter experiences more. I will also be reading other posts here on the forum as well. I pray whoever is having a rough time, that things improve and for those in good times now, that it continues.


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Fri Mar 03, 2017 10:30 am 
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I am so sorry to hear what you and Buttercup have been going through. As if seizures weren't bad enough it must of felt like you've been kicked in the stomach to hear the PDE diagnosis. One thing I've learned since losing Izzie when she was barely 8 to acute Leukemia and Shiloh at 10 when his body quit is that every day we have with them is a gift and a blessing. Some days though, it can be hard to find that gift.

Buttercup has a great mom who is doing everything right in a horrible situation. You're giving her the absolute best care she can have but more importantly, you're loving on her, not giving up, and using this trial to help others. My prayers are with you all.

_________________
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Fri Mar 03, 2017 11:25 pm 
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Thank you, ShilohsMom, for your comforting words of support. I am sorry for your loss of Shiloh and Izzy (you told me of Izzy last year here in this thread). That must have been very difficult, as 8 and 10 still is young. I am so very very very extremely sorry I missed hearing about your beloved Shiloh. You love them both, and all your pets very much. They are all so lucky to have you, and you them. I say in the present because love and memories live on long after...and you're an amazing person, I hope you know this. And you are an amazing pet parent as well.

No, I was not expecting PDE, maybe because I have heard of PDE though the more aggressive one (I have had pugs before, none have had this condition). I researched PDE further before coming here, but again, information is limited. I didn't find this information until this week: that Pugs can come down with it from 1 or 2 years up to the age of 8 years old. When Butter passed those months (how fast PDE can consume) and experienced three to four months a few times seizure free, I was not thinking she had PDE at all, and her other doctors at times felt hopeful as well. It wasn't like I was diagnosing her, I was being hopeful. When the neuro said it though, I was surprised and disappointed; my heart sank a billion miles because I knew the outcome. PDE is so horrible, it acts by the immune system attacking healthy brain cells and killing those cells. There is some reason why it happens. It spreads and there is no stopping it. I feel better that she has more treatment now (and I see improvement already) and her doctors will be more aggressive during her emergencies.

In this forum, I read all everyone's stories and posts I could; I knew her seizures were not like others. I also knew, there may be some like her out there at some point, and their pet parents feeling just as confused, scared and looking for information as I was. Gently saying, time is precious, and with PDE, there is a form that won't give much time at all.

You are so right to do your best to find the gifts each day, especially the rough days. We have to remember, they can't help the bad times and it isn't their fault they are sick and have seizures, accidents in the house, or vomiting, or the vet bills/monthly medicines add up or when they break pills so badly you have to get another etc. I find myself with a lot more patience and compassion with her daily, especially when she is having a difficult time. I feel infinitely more appreciative when she has good days, more so than before we knew it is PDE. Butter's my best buddy. I love her more every day, and when I think I couldn't love her more, she proves me wrong. She really does make me a better person. I am better because of her.

You are right, ShilohsMom, our pets are such a gift. And all the information in this forum is too. Everyone has been courageous to share their knowledge, you all (in addition with my little one) have inspired me to do the same. I know if she were a person, she'd want me to share to help others. I cannot thank everyone enough. :)


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Fri Mar 24, 2017 8:17 pm 
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Butter had a really good first three weeks on prednisone. She was playing, running around, eating/drinking, and some of her old self came out as she once stole something for me to chase her. It was short lived, but beautiful to see. There were other cute stuff she did, which filled my heart. She truly amazes me.

Then, out of the blue, her PDE flared, which saddens me of course. Her seizures mean it's progressing. She had one short grand (about 30 sec) on Tuesday and one short one (about 15 sec) on Wednesday this week. Thankfully, her rectal valium worked and she did have one extra dose of her pheno (as per dr. instruction), then of course her clorazapate. The two seizures were 8 hours apart, almost to the minute. It was 2 months to the day since her last seizure. Her longest stretch was 4 months seizure free, and maybe still that can happen. However, with PDE, there is no guarantee and we don't know how far it's progressed up to now. Looking at her past, it progresses either every three weeks up to four months, varying between of course. We're just taking it one day at a time, embracing her along the way.

It took her a couple days to normalize, which was faster than in the past (maybe due to prednisone?). The improvements are steady, where like a switch, stuff improves. Today, she ran a little on her short walk. This makes us hopeful regarding 'time'. We will see what her condition will allow her.

And so, with lots of love, we continue our journey.


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Wed May 17, 2017 6:54 pm 
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It's been a while since I updated. From March to beginning of this month, Butter was seizure free for just over 7 weeks.
She had many good days mixed in with days of not feeling well. On May 6th and 10th-> Butter had a total of 3 seizures, all were partials into grands. It was enough seizure activity to check her labs and re-evaluate her medicine.

For the first time in over a year, her WBC's were normal (WBC's were higher in Jan) and that might be due to prednisone. Her pheno level was a little too high, and so we reduced pheno (on May 12th), and increased her prednisone (on May 11th). Her wellness labs showed some concerns with her liver values though they were not sky high. Her neuro said her other results were fine.

Yesterday, she had one seizure, which made her third episode of seizure activity in 10 days. Having no choice, we added
Potassium Bromide-> it isn't metabolized by her liver. Poor baby, in the last 24+ hours, she received meds at 12 different times between her emergency protocol, her reg meds and extra dose (instructed to do so by her neuro), plus loading doses
of KBr. After all those meds, I thought she'd be in a drunken stupor, but she isn't so far. The only side effects at this time are: sedation, increased urination (she's drinking more), hunger and thirst and all these are rather mild. Behaviorally and physically as far as anything else goes, she's acting as she usually does on a decent to good day. She even wanted a short walk today. She jogged all the way and explored. Go figure.

I guess it is the delicate balance and interaction between the body and medicine. Phenobarbital is one of those drugs that
builds up and can become intolerable. For Butter's condition, anything that can cause encephalopathy (swelling and inflammation in her brain) will exacerbate her primary condition of (presumed) PDE. So in other words, she's having increased swelling and inflammation on top of the inflammation and swelling she already has because at the moment, it's from two sources. Hopefully, she'll improve as her pheno serum level decreases then stabilizes, but it may take a while for her liver values to improve while she is still on prednisone. I do realize later we may have to reduce pheno further and increase KBr if necessary. For now, we just wait and see. We haven't upped her Zonisamide at any time because she is already on a high dose and any time we gave an extra dose, each time Butter had a concerning side effect that involved internal body temperature regulation. I feel the Zonisamide helps her, after we added it, she went 4 months without any seizures. It's why we've left that one as it is.

And so here we are into the next phases of her journey and treatment. For the first time in quite a while, my little Buttercup is resting in my lap despite her recent struggles.

For anyone out there doing well, I pray it remains so and improves continually. For those having difficult times, may you and your pets condition improve.

Regimen:
Zonisamide -100mg 2x day (no change)
Phenobarbital: 40.5 mg 2x day (lowered from 48.6 2x a day)
KBr 250 mg every 8 hours for 48 hours (loading doses), then 250 mg once a day for maintenance (recent addition)
Prednisone- 7.5mg once a day (increased from 5mg/day)

Emergency meds
Diazapam gel 18mg/ml, 1ml syringe upon start of seizures
Clorazapate- 7.5 mg for three doses (after seizure activity begins and when awake to swallow, one pill every 8 hours for 24 hours only)

Denamarin for med dogs for her liver and brain support
Prilosec for stomach


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Wed Jul 12, 2017 2:18 pm 
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It's been a while since I've updated. No better time than now.

Since Butter was put on KBr (Potassium Bromide), that was 7 weeks ago and no seizures since May (though read on). 3-5 of those weeks were ok, especially the first week. That week, she felt good and was more of her usual self in certain ways- like jogging around outside, etc. The following two weeks, she was nearly the same. However, for the last 3, Butter had been slowly declining. She began refusing walks but then wanted to go on walks last week. Her hind legs and left side were getting weaker slowly each week. At first, she began having trouble just jumping off furniture, or walking on terrain, soft surfaces. Just a little stumble, or more effort needed at times. Not every day, but noticeably got worse each week. Especially this last week and weekend were the most dramatic. Still, she was able to enjoy certain things, and though her legs were weakening, she could still walk without assistance and jog at a slow pace but it took her effort to jog. She had control of her bowels and her basic personality and orientation was intact. She was a little animated at times. She loved sitting with us, greeting us when we came in, eating and drinking on her own and still enjoyed her chew bones though at times that was minimal unless it had meat on it. She loved her bones. I had videos made of certain points of each week for her doc to see what I was seeing. Her neuro said about 2 weeks ago that her disease may be progressing in light of her legs/weakness changes...I knew it was, though I didn't want to say it.

She had a restless Sunday and Monday this week. Quite a few times, she would get warm, start panting though her temperature was normal and the ac on. Though pugs have a hard time in hot weather, it was very cool inside. I knew, this had to be her disease. I had to cool her down and comfort her just to get her to finally sleep. Both days, most of the day and night, she was pretty restless and I spent every waking moment comforting her, getting her to be comfortable, and when she finally slept, she was right next to me on a bunch of pillows. She claimed all my pillows loll, so I have had a spot for her on my bed. She's had that spot for years (and she did sleep in her bed at times). She slept hard, under a throw, her breathing was deep and loud, but comfortable in rhythm, not her usual snoring. When she finally got to sleep, I just laid beside her at times rubbing her cheek that would often put her to sleep. The look as she slept Sunday and Monday, so content and peaceful, almost more than ever before. I anticipated that maybe she was really ready, or very close to it. Her greatest decline began this week. She was staring at walls more often, and this is a sign of PDE. She paced a lot on Monday afternoon. There is a certain confusion they get once it is progressing. The few walks she went on this last week (she had refused all walks for two weeks, and play) were very slow and leisurely, often stopping and staring or not deciding where to go. She wanted to go out, went right out the door when I put her harness on. Some pugs stand on hind legs and scale the walls, face right up against the wall, heavily panting and drooling. Butter would be a foot away, but nonetheless staring at the wall, in some sort of confusion, no drooling or any behavior like that, just staring. If I talked to her, she'd snap out of it in seconds, but lately, she would stare for up to a half minute before responding. Despite this, all these months, her mentation and orientation, she was still with it and could still function.

Tuesday (yesterday) began better and the morning routine was her usual. She was awake before me. She ate all her food, drank, meds etc, did her usual exploring. I thought maybe she is feeling better. However, at 9 am, she had a very violent focal seizure into a grand and barely came to after it stopped. And she went to a deep sleep after it was done. She awakened briefly, but didn't get up and pace as she usually does. She laid there heavily breathing and 'sleeping'. Two phone calls to her vet as her second and third seizures happened within 20 minutes of the start of her seizure activity, each time, she was more difficult to arouse. When she did briefly, it was minimal and she never stood up after any of these three seizures. Her tongue out of her mouth and she was biting down on it, even when she slightly aroused. Two rectal valiums were only minimally effective. After her third seizure, her eyes were huge. I mean, her pupils were large. So within 35 minutes of her seizures, we were on our way to the emergency vet where her doctor is. I told them then I felt Butter was ready as these three seizures were violent, and she never came fully conscious after any of them. And her eyes were different, like she was there, but not.

The entire ride there, Butter lay in my arms, calm, breathing gently, and you know, she hates car rides. But she lay quietly, calmly (again, a sign she was ready). She came to a few times, lifting her head to look at me, then laying back down eerily calm. Upon evaluation at the vet, as I only wanted her neuro to check her and confirm my thoughts before giving any meds. No point in giving meds at this point, if it were to be ineffective (not that I even considered it). Two doctors examined her and because her neruo had appointment to see (in house of course), the second doctor spoke with me first. She told me that Butter's pupils were huge and she was blind in both eyes (neuro testing for blinking, she failed), dilated and not very responsive and felt it was due to swelling in her brain from the seizures and her presumed disease. Butter had very minimal responses to any neuro tests (limbs, standing etc). Too much swelling causes the pupils to dilate as hers were. so brain damage was apparent. Both her neuro and this doctor said, even if they did try to medicate her, Butter would only get far worse, or have worse seizures in the next 24 hours, which would cause her pain and suffering. If she survived that, which they said was not likely, that her time would be miserable. They didn't offer to do that, just to say it wasn't in Butter's best interests. They both felt that her disease took over, as did I. That is all I needed to hear. If Butter was ready, so was I.

Tears in their eyes, as no doc likes to lose a patient, but for Butter, there was only the right thing to do. Before they did anything, A vet tech, the doctor that was to perform the euthanasia, and her regular neuro, asked what I wanted to do 'with her afterwards'. I told each, I was keeping my promise to her neurologist, for her to study Butter. Her neuro said they have to take her spinal fluid for confirmation of diagnosis, then once that is confirmed, they can do the rest. Her doctors said, there were 5 studies that she would be eligible to contribute. That made my heart lighter.

I knew in my heart, my little one was ready her first seizure that day. And at least I was mentally prepared somewhat. Emotionally, not so much. I hated signing those papers for euthanasia, my hands were shaking so bad, we were all crying, and of course, I knew Butter needed me to. So I signed and that was that. We were allowed 'all the time we wanted' and we only took a few minutes, for Butter's sake. I didn't want to waste a lot of time talking because of Butter's needs at the moment. If she started seizing again, it could have gotten all kinds of crazy. I couldn't allow that for her, let alone for us to see that. So they were gracious to get the euthanasia meds asap. Besides, my heart could only endure this part only so long. I tried to be as strong as I could, I never had to do an euthanasia before- it sure was not easy, but I have no question or second thought. Butter lay all that time as she did in the car, calm, breathing slowly and comfortably. I talked to her and gave her kisses, and pet her on her cheek and head as she loves. Telling her how much we love her, and she was such a beautiful, good girl as she 'went to sleep'.... Butter had an expression of contentment, peace as we were talking to her. Or so it seemed, we all thought so. I cannot tell you, how peaceful her passing was. Not a movement, protest or flinch. The doctor said it was the most peaceful euthanasia she ever witnessed. My little Butter... She passed away at yesterday morning, around 1120am. I had taken a picture of her at 11:11am, just minutes before her passing. We had gotten there about 1040 am, as her doctor and the emergency there was 60 minutes away (traffic, course, right?). We took her there as opposed to the closer one, because her doctor knew it was time, I knew it was, she wanted to see her, and it was easier for Butter to be there when she passed, easier on everyone. I felt a lot of mixed emotions, hated that her time had come, but at peace knowing Butter is now free. So merciful, I felt. The worst, now over. After she was gone, I held her close, one last time, many kisses for a few minutes.

I gave the remainder of Butter's medicines to her doctors, to give to someone who needed it but didn't have enough money. Her neuro keeps a stash. I could not see wasting her meds when they can help someone else's pet. I always took them with me on vet visits, this time I knew I was giving them away. Both her doctors were in tears as I gave them. I actually forgot one of her meds (Denamarin) and some pill pockets which I will give when it is time to pick up Butter's remains.

And so, now, her neuro will let me know her findings and hopefully other things we spoke. If she can study Butter that far, if all is confirmed (which I believe it will be PDE/NME) I do want to know where it was in her brain, what happened, and how it affected her internally, depends how much they can do. Perhaps I will update then, one last time for Butter. I am deeply saddened at her passing and so angry at this disease. Butter was just 5 years and a few months old, a third of life expectancy in normal, healthy pug. And she fought very hard, as much I did for her. Today, all this hit pretty hard with the realization, she is really in heaven. My mind winding down after all the stresses of her disease, though not regarding the level of care she required. It was the stress of the unknown: when she would have seizures, how bad they would be, how they would change, how SHE would change, and... when her disease would take her. All these, the most stressful pretty equally to me.

I did have some prayers answered. We had more time with her, which was not all bad since onset (looking back gives perspective), in that she had so many days of good times that outweighed the awful, and she was not alone when she needed me most, and that I would be with her during 'that moment'. I am so thankful to have had Butter in my life. She was one crazy cool pug. She's well loved, as she loves us too as much.

I write her story here to help those looking for answers. If your dog presents as Butter did, please do not hesitate to see a neurologist. Don't make the same mistakes I did in waiting. But do by all means, take her story and let it be a light to those enduring her disease. And, no matter what, love them throughout.

For all those enduring difficult times, may they get better for you and your pet. For all those doing well, I pray it stays that way for as long as possible.


Buttercup- born 3.7.12, a crazy cool pug, in all her delight
crossed rainbow bridge, 7.11.2017
Rest in peace, my darling.
I love you Butter. Always.


Last edited by Lovelight on Sun Jul 16, 2017 11:10 am, edited 11 times in total.

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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Wed Jul 12, 2017 6:47 pm 
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I am so sorry for your loss. You fought hard for Buttercup and in the end what you did was so selfless. You have set an example that at some point I hope will help you through this. You are an amazing mom.

Take care of yourself.
Lynne


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Thu Jul 13, 2017 4:43 am 
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Thank you, Lynne. And everyone here for sharing all the stories, advice and support. All of this helped so much in our journey.

It's really hit me these last two days. I woke crying both days and many tears between. Especially at times in the morning (530 am she had meds and at 630), I woke in a panic right at 530, oh my gosh, her meds. Then realizing, she's free. She's been predominately in my dreams so it didn't surprise me to wake thinking I had stuff to do for her. Really, since May, I've been anticipating it was going to be soon. I know my Butter. Her last 5 progress notes, I saw her slow decline. I'm thankful that even that was like a gentle progression. If you saw the videos I have of her even last week, you'd see her spirit wanted to stay and you could see where her disease had her: her legs especially, and the times she'd stare. I've seen other videos with dogs having what she does and she was not as bad as they even at times after her worst episodes where she needed time to 'normalize'. I'd love to share a couple videos and pics of her here. Maybe at some point, I will make a place dedicated to her, just if anyone here wanted to see her. I'll let you know. I honestly feel God heard my prayers and let her progression and last moments be so gentle. Butter deserved to have that too, she's endured so much. This damn disease.....I pray they eventually have better treatments and a cure. It's an awful, just plain awful disease.

I just miss her so deeply. I've been thinking of her entire life, my beautiful once vibrant funny sweet pug....all her blessings, all the love we shared- every moment to now, I've never stopped loving her. Even in her hard times where she gave a hard time taking meds, or needed time to get 'better', I love her more each time. Patience, love, compassion, it all matters. And that is important too, that no matter how sick our beloved pets become, that we still love them and care for them the best you can. Believe me, you won't regret it. Her second doctor she saw on Tuesday told us, "all the money and meds in the world can't save her, but your love for her and all you've done helped her through this disease with the best of ease was all she needed. You gave her everything to make it this far since her illness started, and your love for her runs deep, we see that." All her doctors were awesome. I feel my little Butter around me. I'll always have her near and in the center of my heart.

I'll be around from time to time. I still want to provide support for others. It's just getting used to her not physically being here....sucks.

Much love everyone. How do I post a picture???


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Fri Jul 14, 2017 10:28 am 
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Posts: 794
Location: Oklahoma
I'm so sorry about your loss of Butter. I have a signature on one of my email accounts that says "God didn't give me the dogs I wanted, He gave me the ones I needed" I think He gave you Butters because He knew you were the perfect mom for her and would give her the best care in spite of her circumstances. It's so hard to let them go but it's the most unselfish gift of love we can provide when they need it most. My heart hurts for your loss. It will take time to get to that place where you're not always thinking about giving meds and jumpy every time you hear that sound that reminds you of a seizure, but you WILL get there in your time.

To post pics you have to copy the link for them from a file sharing site like Photobucket.

_________________
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16


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 Post subject: Re: Newly Diagnosed 4-Year Old Female Pug
PostPosted: Sat Jul 15, 2017 1:54 pm 
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Thank you, Shiloh's mom for your words of support through our journey. I gained some strength through you. I cannot thank you enough for you. My words fall short, but my heart says it all. Yeah, it will probably take me a while. It's been difficult 'getting used' to Butter not being physically here. I made a vow to her and I kept it; we had a LOT of wonderful, loving, fun, quality time. I made sure she had that enjoyment. I felt any 'mistakes' made were actually for a benefit somewhere, ie the studies she will contribute where she could have otherwise missed it had things been done differently. Things have their way of working out.

I miss her terribly. She was such a goofy, vibrant, loving pug. Her neuro told me when I saw her Thursday, she contributed some of Butter's samples, case history to a genetic study in Texas (yay, a beginning). She's looking at more. I asked if she made sure she got all she wanted, and she said yes. She will let me know more where else Butter can contribute. That lightened my heart. Someday, PDE will have better treatment, and a cure. And Butter will have helped make that happen. Her doctor hopefully has learned more, which she can share with her colleagues and future patient families. That makes a difference in how I feel now. When I look at our life together, we had more than one reason we were brought together.....and that helps heal my heart day by day.

I'm sorry for being so long winded again. I just wanted to share my thoughts with everyone here, because I know you understand, and maybe what I say can help comfort someone else who just lost a loved one. ;) I'll post some stuff on Photobucket on Monday or Tuesday. I won't be able to do it until then.

For all those enduring difficult times, I pray it gets better for you and your pets. For those experiencing good times, seizure free days, I hope it lasts a very long time.

~Light

Buttercup:
a crazy cool pug in all her delight
3.7.2012-7.11.2017 age: 5 years, 4months old.
17 seizure episodes, two were status epilepticus seizures
49 seizures over course of 18 months
Diagnosis: Pug Dog Encephalitis, Necrotizing Meningoencephalitis
onset age, 3 years and 10 months old


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