Newly Diagnosed

Share your story, questions, concerns.

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HugosMom
Posts: 8
Joined: Mon Jan 20, 2014 8:50 am

Newly Diagnosed

Post by HugosMom » Mon Jan 20, 2014 5:53 pm

My Hugo is an Alaskan Malamute/Siberian cross. He woke us up in the middle of the night with a seizure on December 23. He then had another on January, 8th and then 3 on January 18th. We knew three in one day was not ok so we took him into the emerge vet and she put him on 60mg of PB twice a day. This is a low dose for a dog this size but she recommended us starting low and working up if necessary. He hasn't had another one since (only 2 days), but the meds appear to be making him very restless (definitely not lethargic) and slightly more hungry than normal. We took him for a re-check today and the vet seems optimistic about aiming for a goal of next to zero seizures. They have another malamute patient that presented the same way and hasn't had one in over 6 years.

So I guess my question for everyone is: Can we expect to regain a normal lifestyle with him again. It may have to be a new normal (ie. having to be home to give him meds) but at least a happy, healthy life with our dog. After putting him on the meds it's hard to think that we will achieve normal again since everything has been so shaken up in the past two days. I've read a lot of the stories on here and sadly to say it appears as if a lot of them are sad stories and I'm looking for those happy stories where doggies got to live a happy, playful life.

Hugo's Mom

cforecatsmeow
Posts: 225
Joined: Fri Sep 20, 2013 5:58 pm

Re: Newly Diagnosed

Post by cforecatsmeow » Mon Jan 20, 2014 6:35 pm

Hi Hugo's Mom!

There are a lot of dogs who do very well with treatment and utilize low doses of the Pheno for long periods of time and their whole life for that matter and I hope that your pup is one of those dogs. There are a lot of sad stories of dogs on this site but I know of many people on a personal level who have had great success on the lowest doses. I can't pull a specific number but I believe that dogs that respond well to minimal treatment are much higher (70 to 80%) than those who don't so please keep that in mind. I am unfortunately in the latter category but do not be deterred by this and I believe that keeping a good frame of mind for you and your pet is essential. The side effects of the Phenobarbital will calm down after two to three weeks so if he seems lethargic or hungry, this is pretty normal. Even though we have struggled from time to time, Winston still has a pretty happy life even though he is not responding as well to treatment. He still plays, goes to the park, the doggy beach (albeit I now have to embarrass him by putting on a life vest). The walk of shame on the beach is almost too much for him at times especially when other dogs try to drag him by it, but he is still a happy go lucky pup and he still is his same old goofy self 90% of the time minus being a little less active and having his occasional spells.

Please keep us posted on how your pup is doing and concentrate on the good, make sure his dosing is given regularly (every 12 hours) , and I am sure that you will be fine.
Cynthia and Epi-Winston
Black Mouth Cur Mix
DOB: 8/2/10
96 lbs.
First Seizure 6/11/13
Last Seizure 1/2/15
Phenobarbital 97.2 bid
Keppra (generic) 937.5 bid, 1125 sid
10 mg Valium tabs as needed
Liquid Oral Valium 5mg/5ml for rectal as needed

SpencerBhumi
Posts: 228
Joined: Sat Feb 11, 2012 9:25 am
Location: South Australia

Re: Newly Diagnosed

Post by SpencerBhumi » Mon Jan 20, 2014 6:51 pm

Hi Hugo’s mom,

Sadly, welcome to the forum.

You have asked a question impossible to answer however I think you already understand the answer: “a new normal”.

This disease sucks and it is both unpredictable and variable between dogs. It would be absolutely fantastic (and I pray you have success) for Hugo to respond similar to your vet’s previous experiences. Do not ever be disappointed if this does not occur – there is nobody and nothing to blame for this disease; just continue to love and care for Hugo because he will need it more than ever.

Your “new normal” will be vigilance: to identify possible triggers, to provide safe lifestyle measures for Hugo, and to maintain incredibly strict medication regimens. The least to hope and aim for is that happy & healthy life with Hugo. The scrutiny and vigilance under which our epi-dogs live puts them in an otherwise higher state of welfare, well care and good living, so that happy life style is to be hoped for.

We are coming up four years with epilepsy and we have had an incredible journey of grief, hurt, distress and really ugly moments surrounding clusters and hospital stays. I still do not know our triggers. Spencer is medicated with Pheno & KBrom (and drugs to combat clusters). He is drowsy a lot but when I get the ball out he comes to life – he is coordinated, fast, attentive and as capable as before the disease onset. Spencer travels and holidays (tent camping) well too. BUT I can’t afford to be complacent – moments of negligence and tardiness with medication and careless living has led to serious hospital stays!

**NOTE! Pheno causes extreme hunger and some increased thirst. Many of us here have experienced ‘hunger’ causing our dogs to obsessively consume ‘stuff’ to the point of life threatening danger (toys, sticks, rocks, clothing, stealing bulk food (and your prepared people dinners) – do not underestimate anything and do over imagine everything that your dog might possibly have access to). Protect Hugo. Also, thirst might cause Hugo to drink more, wee more, thirst more and so the cycle increases - be prepared for messes.

Finally, if you need to increase the pheno or add other drugs to the regimen, do not be disappointed (frustrated, angry etc - yes - but do not blame yourself or Hugo). This disease just sucks.

Praying good progress for you and Hugo.

Regards,
Trevor & Spencer.
Grateful for the good days, weeks (months).

cforecatsmeow
Posts: 225
Joined: Fri Sep 20, 2013 5:58 pm

Re: Newly Diagnosed

Post by cforecatsmeow » Mon Jan 20, 2014 7:43 pm

Hugo's Mom-

If you have any questions and need to discuss options in the future in the case that Hugo is refractory to treatment, please feel free to come here and ask questions or discuss same. If he does in fact have good success, I would like to hear that as well as, again, I personally know of people and their pups who have had very good success. I am just not one of those people.

Trevor - while I appreciate the "realism" of your post, I believe Hugo's Mom needed a little of a pick me up. Your post is like an apocalyptic message of the future hell the rest of us have experienced. I think she asked for "happy" stories. It actually made me LOL as your comments are true for most of us here and you did provide useful information though at times a little harsh in your delivery.

I appreciate everyone here and having a place to vent. We all know this disease sucks, but some worse than others.

Here is wishing for a good road for Hugo's Mom and a future outlet and source of information if needed.
Cynthia and Epi-Winston
Black Mouth Cur Mix
DOB: 8/2/10
96 lbs.
First Seizure 6/11/13
Last Seizure 1/2/15
Phenobarbital 97.2 bid
Keppra (generic) 937.5 bid, 1125 sid
10 mg Valium tabs as needed
Liquid Oral Valium 5mg/5ml for rectal as needed

ShilohsMom
Posts: 818
Joined: Tue Nov 12, 2013 1:42 pm
Location: Oklahoma

Re: Newly Diagnosed

Post by ShilohsMom » Tue Jan 21, 2014 11:54 am

Hugos Mom,

I'm so sorry that Hugo has developed seizures. Sometimes I think that we hear more bad stories because in our desperation we reach out to those who understand for support. No matter how much compassion our friends or family may have, if they don't have a dog with epilepsy, they have no way of truly understanding what it's like to live with this disease. We sometimes forget to post the good times so it can feel overwhelming to see so many bad/sad stories. I don't see why Hugo couldn't be one of the dogs that responds well to treatment. Just remember, every dog is different and responds differently. There is no "one size fits all" for epilepsy.

Shiloh hasn't done as well as I have hoped he would, but that doesn't mean that he doesn't have a great life. In fact, if you didn't know him you wouldn't know anything was wrong with him. He's happy and loves going on walks, car trips and just being loved on.

Not sure if this will be helpful to you or not, but I keep old towels at several locations in the house so that when he has a seizure I can go grab them really fast. I use one to drape over him to hopefully control where his pee is going and clean him and the area up as best as I can and the other for his mouth when he's done seizing to wipe up the drool. I thinks it's gross when they get up and the first thing they do is shake and well, you know..... Ugh! I hope nobody ever comes into my house with a black light! :D

You might also look around your house and think about if Hugo were to have another seizure could he knock something over on himself and get hurt. I've had to rearrange several things in my house just in case. I also took the door stopper off the bottom of the front door because Shiloh likes to sleep by the door and I didn't want that to poke him.

We're here if you need us, whether it's to vent, get info or just need some encouragement.

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

HugosMom
Posts: 8
Joined: Mon Jan 20, 2014 8:50 am

Re: Newly Diagnosed

Post by HugosMom » Tue Jan 21, 2014 5:12 pm

Hugo has been adjusting well to the medication. I was worried because he was soo restless and wasn't sleeping, but he slept the whole night through last night no problems. I took yesterday off work to be with him and to take him back to the vet for a recheck but I had to go back to work today and it was not without anxiety. But I came home to the playful puppy that we had before starting the meds. His hind legs still give out on him if he's been laying on them for a while but after only a few seconds he's back up and running around like nothing is wrong. There were no messes in the house. He is drinking a bit more but still not very much. He is definitely noticeably hungrier but it's not driving him to want to eat anything else other than his kibble. I've taken to feeding him two to three times daily rather than once daily, and occasionally adding green beans as filler to help him feel full longer.

I'm feeling much better about the whole situation today and am hopeful that he will respond well to the meds. I'll keep you updated as to how he's been doing, but so far no new seizures!!!

cforecatsmeow
Posts: 225
Joined: Fri Sep 20, 2013 5:58 pm

Re: Newly Diagnosed

Post by cforecatsmeow » Tue Jan 21, 2014 8:02 pm

No new seizures is always a good thing :) Happy to hear.

It is very hard to go to work after these things happen. It's so stressful and fills me full of anxiety every single time, but we have to work unfortunately. I keep playing the Powerball in the hopes that I can stay home :) I will tell you that Winston gets very excited after he has seizures and then really mellows out once he stabilizes, which can take days. We were started on the same dose of Pheno and he became very lethargic for about two or three weeks so don't be surprised if you see a lazy pup here and there. However, Trevor was right in this is not a one size fits all condition. Every dog is different and responds in different ways. Some dogs get hyper if they get Valium.

Winston bugs me for food all the time now, and has managed to eat a half a loaf of bread after a seizure and almost a full bag of bones while I was at work so I have made sure all of the food is well contained. The medications he has been on have not made him eat unusual items but some dogs do, and I have had to secure the dog food and human food and cat food at this point. His binges come after he has a seizure but he wakes me up now at crazy hours to beg for food. Drives me crazy :)

I changed Winston's food after a period of time to a grain-free diet (Taste of the Wild bison and venison) and I also use fillers such as green beans, sweet potatoes, kale, spinach, apples (all cooked or steamed slightly and mashed up a bit) and give certain treats in small amounts of carrots and shockingly I have found that both of my dogs love cantaloupe (just in small amounts) so they feel like they are getting something extraordinary!

You will be okay during this. There may be ups and downs but hopefully he responds well to treatment. I want to reiterate that there are a lot of success stories and a lot that are not and it's a waiting game, but please know that there are a lot of people out there who are experiencing the same thing no matter which way this goes and modern medicine and understanding has come a long way with this mysterious and puzzling disease. To give you an example, I work in a large law firm. Since Winston has had seizures, many people have told me their stories from childhood or friends who have epileptic pups. There are two (including Winston) who have been unresponsive to treatment, there are three who had great success.

Please keep us posted and if you have any questions at anytime, please feel free to ask. This is a very informative site and supportive when you need it most or if you need to vent on whatever :) Again, best of luck to you and your babe.
Cynthia and Epi-Winston
Black Mouth Cur Mix
DOB: 8/2/10
96 lbs.
First Seizure 6/11/13
Last Seizure 1/2/15
Phenobarbital 97.2 bid
Keppra (generic) 937.5 bid, 1125 sid
10 mg Valium tabs as needed
Liquid Oral Valium 5mg/5ml for rectal as needed

Chris Douglas
Posts: 254
Joined: Tue Aug 27, 2013 8:50 pm

Re: Newly Diagnosed

Post by Chris Douglas » Wed Jan 22, 2014 2:51 am

Hi HugosMom,

while I'm the opposite of a "happy success story" I would have you know I even now knowing full well the outcome wouldn't trade one single moment I had with my Molly for anything in this world or beyond ... you'll have good days and bad days ... cherish each moment that's good and try to remember those moments when things are as hard as you'd ever think they can be ... and when it gets hard going come here and talk it out with all the great people here ... this is the best support system you'll ever have in my opinion ... one really fine lady here once wrote me this:

"You just do the best you can, and love your little doggie, and try to keep your sanity. Because sanity was in short supply around our house at times, that's for sure! This disease is just so unpredictable. Hang in there. You have a lot of moral support out here, but it can feel so darned overwhelming at times like you're having"

and I found so much solace in it that I did a copy/paste and thumb tacked it to the cupboard door right above the spot on the kitchen counter where all Molly's med's were so that each "med. time" I'd read it and find comfort in it ...

I have faith you'll find your own way of getting thru whatever lays ahead for you and Hugo cause the good days always out weight the bad ... I'll keep you and yours in my prayers for a long run of good and fun filled seizure-free days ahead

Chris
Chris & Molly
Brittany 27 lbs female DOB Mar.2008,
Pb 32.4 mg(1/2 grain) BID
regular Keppra 2/250mg BID
Valium tab's 5 mg orally/rectally as needed
Melatonin 5mg SID


1st seizure 8/20/12
last seizure 12/14/13

Rainbow Bridge 12/28/13

beaglemum
Posts: 74
Joined: Thu Sep 06, 2012 8:49 pm
Location: Australia

Re: Newly Diagnosed

Post by beaglemum » Thu Jan 23, 2014 7:29 am

Like everyone else, I am sorry that you have to deal with this disease.

I just want to offer some encouragement, without minimising the 'hell' it can be for us. A lot of the posts on here are from people whose dogs are refractory to the drugs and/or just plain having a hard time finding that elusive combination that controls the disease, without extreme side effects. I believe (would like to anyway), the majority of canine epileptics are easily managed, so we don't actually hear their stories.

My beagle has had horrible clusters, frequent hospital stays, etc but finally we have a combination that (touch wood) works for us. It means we can't miss a medication dose, that he has more than moderate ataxia (vet's words from a visit a couple of days ago), but he is a happy dog, that loves his family, food, walks, playing with his canine companion. He is 9 now, and has had the disease for over 5 years.

Talking to my vet a couple of days ago, when we had Saxon in for a recheck, bloods, etc, he commented that out of all the dogs he has seen with this disease, Saxon is definitely in the top 10% for being difficult to treat/manage the disease and very refractory to the meds. Mostly, the dogs are prescribed Phenobaritone, and that does the trick.

Hopefully, that works for you. Yes there are initial side effects, but the body should adjust to them within a few weeks and with any luck, if there any lingering side effects, it won't be bad enough to worrisome. If the drug is not effective, even in higher doses, than know that there are other drugs out there, they may have to be used in combination and every dog is unique in what works for them. Blood tests, every 6 or 12 months, once the seizures are under control, will let you know if anything untoward is happening internally. The important thing is to try and minimise or prevent the seizures, so the brain doesn't get any more practice than can be helped (kindling). Also once medication is started, don't change or stop without a lot of consultation with the vet.

It is scary when the seizures first present, but for a lot of dogs, it takes minimal medication/effort to get under control. Hopefully, you will be in the same situation. Take encouragement from the fact that your vet is optimistic as well. I hope you are one of the more successful stories out there.

Good luck.
Roxanne & Saxon (beagle)
2 Nov 2004 - 1 Mar 2015
1st Seizure 9th August 2008
Last 21st Feb 2015
100mg Phenomav BID
200mg Zonisamide BID
7000mg milk thistle

Gentle Jacob's mom
Posts: 925
Joined: Thu Mar 04, 2010 10:52 am

Re: Newly Diagnosed

Post by Gentle Jacob's mom » Thu Jan 23, 2014 8:18 am

I'm going to weigh in a bit here, because what has been said already covers just about anything I could say, but I'm going to add one more thing. This is without a doubt a huge heartbreak and challenge. You'd have to be made of stone to be able to walk through this with your puppy and not feel overwhelmed and scared but... You will grow as a person right along with all of it. No matter how it turns out. I pray that Hugo gets control, but even if he doesn't you will figure out his movements, and his signals to you, and you will have a relationship with him unlike anything else you have ever had. When Jake has a seizure in the middle of the night, like he did on Tuesday at 2 am, there's this bond we have that no one else has. When my husband and the other animals are asleep, Jake lays at the foot of our bed, or stretched out in between us, and I'm usually reading while I wait for him to signal me that he's okay. He'll lay looking at me, and he knows I'm right there, and if it's humanly possible, I'm going to protect him. I know this sounds weird, but he looks at me like he's smiling, and feels safe, because he knows I know the hell he's been through. Then he'll blink and yawn, and go to sleep. That makes all of this worth it. We've had some very rough times with him. Times when I thought he was going to die, but then he looks at me with his "eff you" eyes, and I know he's on his way back. I hug him and tell him he can direct his frustration at me any day. I've changed so much because of Jake. I've said this before, probably too many times, but going into this I didn't have much of a backbone. But eight years later... after dealing with opinionated people (some I have more patience than others), I'm much more able to take it all on. I still break down, I still scream, but when I see Jake running and playing like every other dog, I smile am so thankful that we rescued him. You'll figure this out as best you can. And if you need us, we're here.
By the way, Jake has an awesome dad. I'm very lucky. I commend and respect the people here who do this on their own more than I can tell you.
Take Care,
Lynne

HugosMom
Posts: 8
Joined: Mon Jan 20, 2014 8:50 am

Re: Newly Diagnosed

Post by HugosMom » Thu Jan 23, 2014 8:20 am

Thanks for all the encouraging words everyone!

Hugo's side effects to the meds have completely diminished and he is now is normal self. Only 4 days after starting meds I think that is pretty remarkable. I have come to the realization that it is likely I'm only hearing "rough" stories because typically people only speak out when something is wrong, and not when something is going right so I'm just being exposed to the success stories.

We have changed Hugo's food and I've made the decision that in the next month we are going to slowly start introducing the raw diet. I was thinking of doing this before all this craziness happened but never made the concrete decision to do so. We are going to definitely do it now. I've read up on it a lot and it seems that a lot of epileptic dogs respond well to this diet, whether it be the lack of preservatives or just the fact that it makes them overall healthier and better prepared to deal with whatever causes seizures.

I'll let everyone know how he continues to respond to treatment!

Hugos Mom

cforecatsmeow
Posts: 225
Joined: Fri Sep 20, 2013 5:58 pm

Re: Newly Diagnosed

Post by cforecatsmeow » Fri Jan 24, 2014 7:16 pm

Keep us posted on how you and Hugo are doing. We wish you the very best of luck. Also, let me know about how the raw diet goes and if you see a noticeable difference in your pup. I have considered it and have read many success stories about it as well, though it is time consuming and a little more expensive from what others say, even though the kibble, treats, and produce I buy is quite pricey as well :)

I have to say I have noticed a huge difference in my pups since switching to the pricey Taste of the Wild kibble and adding fillers instead of giving a little lesser value (not grocery store but still not the top notch, I will refrain from mentioning their previous food) kibble and the canned wet food. They are so much more excited to eat as well. They think they are sooooo special!

I also changed their treats. I noticed in the beginning that rawhide seemed to be possibly triggering my pup so I changed to Sam's Yams (dehydrated sweet potatoes) which mimic rawhide and give them their "chewing fix." They have big ones for Winston and "Bichon" fries for Patty that are a little smaller.

One question I have forgotten to ask you during this string is how old is Hugo?
Cynthia and Epi-Winston
Black Mouth Cur Mix
DOB: 8/2/10
96 lbs.
First Seizure 6/11/13
Last Seizure 1/2/15
Phenobarbital 97.2 bid
Keppra (generic) 937.5 bid, 1125 sid
10 mg Valium tabs as needed
Liquid Oral Valium 5mg/5ml for rectal as needed

cforecatsmeow
Posts: 225
Joined: Fri Sep 20, 2013 5:58 pm

Re: Newly Diagnosed

Post by cforecatsmeow » Fri Jan 24, 2014 7:26 pm

I also want to weigh in to Lynne, Gentle Jacob's Mom - your post is so true and eloquent in its delivery. Actually brought little tears to my eyes because it is so true. There is bond between us and our pups that will never be broken. I already have a "special" bond with my pup, but I really noticed it when my Mom came for vacation. He used to stay with her a lot of the time, slept with her, and now he never leaves my side. They know how much we love them and are doing all we can to help them. Even when Winston gives me the furrowed brow (I named him after Winston Churchill for this very reason) and spits his Keppra out in defiance, I know there is still love and understanding there :)

Colleen - I would also like to mention the black light issue. Winston had quite a bad week last week and I could still smell urine SOMEWHERE two nights ago. I live in a warm climate so there is no carpet thank God, but I tore through my bedroom, under the bed, the dresser, the chest, my computer armoire and have smelled and wiped down and mopped everything darned thing I can and, while the smell is not noticeable, I still get a whiff here and there. Anyway, my day tomorrow will be same as Wednesday night, cleaning and smelling, because it's driving me crazy!!!!

I hope you are all doing well!
Cynthia and Epi-Winston
Black Mouth Cur Mix
DOB: 8/2/10
96 lbs.
First Seizure 6/11/13
Last Seizure 1/2/15
Phenobarbital 97.2 bid
Keppra (generic) 937.5 bid, 1125 sid
10 mg Valium tabs as needed
Liquid Oral Valium 5mg/5ml for rectal as needed

HugosMom
Posts: 8
Joined: Mon Jan 20, 2014 8:50 am

Re: Newly Diagnosed

Post by HugosMom » Mon Feb 03, 2014 6:25 am

So Hugo has been seizure free since starting the medication, now up to 2 weeks and 2 days.

After starting him on the PB he was a little "drunk" for the first few days and then returned completely to himself. But the past 2 days or so he has been so lethargic and the weakness in his rear end has returned. I'm assuming that this is just the medication building up in his system, or at least I'm hoping that's what it is. Either way it's heartbreaking to watch him stumble around only to get frustrated and lay back down for hours on end. I miss playing fetch and tug with him.

We also have started him on the raw diet, which I find disgusting and worries me to no end because of the possible salmonella contamination. I've been thinking of putting him on poultry based kibble 3 days a week and then raw beef/elk for the remainder days. That will at least reduce the risk of bacterial contamination.

Has anyone else experienced this return of lethargy in their dog. I realize he's only been on the meds for two weeks so it may be naive of me to expect him to be back to normal by now.

HugosMom

cforecatsmeow
Posts: 225
Joined: Fri Sep 20, 2013 5:58 pm

Re: Newly Diagnosed

Post by cforecatsmeow » Mon Feb 03, 2014 11:29 am

Hi Hugo's Mom,

Winston has not experienced any hind-end weakness with the Pheno and I'm not sure if that is a common side effect, but I will deter to others in that regard. I know that Bromide can cause that. It took Winston about two - three weeks to adjust to medication and then he was basically about back to normal. If it continues, I would take him to the vet as I don't think that is a side effect. Keep us posted.
Cynthia and Epi-Winston
Black Mouth Cur Mix
DOB: 8/2/10
96 lbs.
First Seizure 6/11/13
Last Seizure 1/2/15
Phenobarbital 97.2 bid
Keppra (generic) 937.5 bid, 1125 sid
10 mg Valium tabs as needed
Liquid Oral Valium 5mg/5ml for rectal as needed

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