Newbie and seeking help and answers

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Soongsis2
Posts: 11
Joined: Mon Sep 15, 2014 10:33 pm

Newbie and seeking help and answers

Post by Soongsis2 » Tue Sep 16, 2014 11:44 pm

Hi

First off, this forum/discussion board has been so helpful in helping me navigate my Daisy's seizures... So thanks a lot everyone. It's going to be a longish post so please bear with me. I'm living in Singapore, so perhaps some of the drugs and protocols might be a bit different.

Background

I adopted my darling Golden Retriever girl, Daisy, in mid 2007. She was abandoned at a shelter so we don't know her exact age. It's an estimate that she is now between 7-9 years old. When we adopted her, we found that she has a couple of pre-existing health issues: 1) her hips are completely displaced but probably when she was quite young and the muscles built up around it. She has pretty much the normal range of movements and is quite active. 2) she has mild mitral valve degeneration and dilated cardiomyopathy. But not showing any clinical signs. We supplemented her with high dose glucosamine and hearty heart and kept her weight down. Her diet is homecooked food and she has been in very good health since. Her last physical and ultrasound was in Feb 2014 and our vet gave her an all-clear including the heart which did not show much degeneration.

Seizures
However in July this year she started having seizures:

13 July - was the first grand mal and the vet advised a wait and see.

20 July - 2nd grand mal and we started discussing with the vet to start anti-seizure meds. We didn't run any tests as the vet felt that the last tests in Feb returned normal results so he thinks it was idiopathic.

5th August - 3rd grand mal and we scheduled a vet visit for following week. Throughout these seizures, it never last more than 1.5mins and she returned to normal within an hour with no apparent issues.

10th August - this is was a terrible day as she had cluster seizures of 4 within 12 hours period and this time the seizures left her partially blind on right eye and weakness of her right legs with pronounced knuckling on right foreleg. And she was v disorientated. We started on pheno right away 60mg 2x a day (she's 21kg). And ran the blood tests, everything was normal. Our vet suspects it might be a tumor but given the risk of an MRI due to her heart we decided to hold off. The effects of the pheno was quite bad - she had ataxia, and weak and most of the time she wasn't altogether there. Took her about 1.5 weeks to start adjusting. She was also quite depressed... I don't know if I'm projecting but she had no life in her eyes. Appetite is good although, the only times she'll get fire I. Her eyes is during meals.

She was seizure free for a month and steadily got back her strength tho the weakness on the right was still there but much improved. She wasn't disorientated. In that interim we also ran additional thyroid T4 test and another ultrasound of the heart but nothing abnormal showed up. We also started her on acupuncture and TCM treatments. We followed up with our vet on 8th August and decided to lower dosage by 25% given her improvements. (On hindsight, a monumental mistake that I am kicking myself for)

12th September - she had cluster seizures (grand mal) again, 2 consecutive. And we injected valium when she started her second one which stopped it. The pattern of her seizure changed... Usually she will go straight into it without warning but this time she lost her bladder and bowel control while conscious and collapsed with the tonic-colonic symptoms (am I using this term right?) This time, her weakness returned but not as bad and she regained most of her strength by Sunday although she was still a bit out of it. We took the dosage back up to original.

14th September - she had a mild one which had her lose bladder control and she was like in a trance before losing muscle control. But no spasms. However she became more disorientated and and the partial blindness on the right returned together w the knuckling. We brought her to the vet the next day, and he felt that her psycho-motor strength was returning and we discussed an option of CT Scan instead as less sedation needed but decided to KIV instead till a month later and see how she does for the next few weeks. He also started her on vetmedin (5mg x2 daily) to help with the heart function.

16th September - she had a mild one similar to the one on the 14th. This time she didn't lose muscle control but she became more disorientated and out-of-it. The knuckling started again although she could adjust it back herself. I don't know if this is due to her adjusting with the higher dosage of pheno.

17th September - another mild one today as with previous. She's now totally zonked out (it's been approx 4 hours since). We noticed that she tends to get her seizures post food (she's fed 8a and 8p with her meds dispensed with the meals), within 30-45 mins. It is baffling. So decided to bring forward her pheno dose an hour earlier at 7 and hope that the uptick of the drugs will stave off the seizures post meal. Didn't work this morning, although I noticed that it seemed to take more effort for the seizure to happen (does this even make sense?). Meaning that she will settle down after food but will start pacing @ in fits and starts.

Questions

1. Is her weakness and disorientation and blindness a post ictal phase or something more sinister. Or a permanent brain damage? Our vet says it can't be post ictal as it doesn't take that long (days/weeks) to recover. But reading the boards, some of the dogs seem to take longer... Seeing her in this state really breaks my heart, she was a total sunshine girl previously. Happy go lucky, just needing food and attention to thrive. (I'm tearing as I write this...) I am throwing almost everything at it to help her get better, TCM, high-dosage anti-oxidant injections, Body Talk healing etc. She did get better but now we are back to sq one again and I really really regret lowering the dosage.

Is there anything else I can try to help her get back? And she's a bit depressed now (no tail wagging).

2. Should we keep with the current dose for now? Or start increasing the dose? I suppose it takes a while for the pheno to get back into therapeutic range and my vet suggested a week. Should I take it as a sign that her seizures are mild now that the dosage is correct?

3. The vet and I spoke last night and he feels the connection with the meal time should be looked at although he is at a loss what it could be. We did a bioreasonance allergy test in July and made sure she is only fed food she is tolerant to, so food allergy has been ruled out. The other possibility he mentioned is a liver shunt but her liver enzymes turned out normal... So we might do another in-depth liver panel test on Friday. Or it could be just that she's too excited at mealtimes? But this has been since day one she arrived so why the seizures now? Anyone had similar patterns?

4. The MRI question is a big one... As much as I want to know what is going on, I'm not sure if that's the best way to go for Daisy given her pre-existing heart condition. And the vet has advised us that there are not much options here in Singapore to treat brain conditions... So even if we find out, not much will change in terms of treatment. But it kills me to do nothing while she is suffering. Has anyone had good results with CT Scan instead?

Thanks for listening to this v long post. And I appreciate everyone's time to go through this.... I'm at my wits end and I just want her to get/feel better as with all of you who are going through this. Will stop here or will start crying again.

Jennifer
Last edited by Soongsis2 on Wed Sep 17, 2014 1:56 am, edited 1 time in total.

Soongsis2
Posts: 11
Joined: Mon Sep 15, 2014 10:33 pm

Re: Newbie and seeking help and answers

Post by Soongsis2 » Tue Sep 16, 2014 11:50 pm

I forgot to add that the TCM vet thinks she might have a stroke during the cluster seizures on 10th Aug. Our regular vet is not as convinced. Thoughts?

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: Newbie and seeking help and answers

Post by Esmo » Wed Sep 17, 2014 7:28 am

I am not knowledgable enough about this disease to offer you any concrete suggestions for your Daisy but I did want to let you know I sympathize and empathize with you. The journey to find some answers and a semblance of control over this disease is painful and oftentimes lonely. I send every wish that you and Daisy find a way.

Kathy
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

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

Re: Newbie and seeking help and answers

Post by Gentle Jacob's mom » Wed Sep 17, 2014 9:10 am

Hi Jennifer,
I'm so sorry that you and Daisy are going through such a hard time. This disease is horrible and everyone here really does understand what you're going through so you're not alone, and post anytime you need to. Outside of the fact that seizures can change how they come on and how they present themselves in an instant for no reason at all, finding the right dose and the right drugs is beyond frustrating. As far as the meds, it does take time to see if one is working before adding another. Are you able to get rectal valium for her? If you're using that after a seizure and they're still coming on every day it might be time to add on another drug. Maybe Keppra or Zonisamide. Both have far less side effects. As far as loosing control of bowels etc, that comes with grand mals so if you can have plenty of towels near by that helps. We keep a pile of them in a room that's central in the house and keep small pillows under a couple of our chairs to put under Jake's head when he seizes. Our friends think we're trying some new decorating idea... As far as disorientation and blindness that is post ictal and can last anywhere from a few hours to days. There are some dogs that take a week to come around. Daisy may also have a problem with hearing. That comes with this too.
We've never had an MRI done. We couldn't afford it and most of the time it doesn't tell you anything. Yes, because of Daisy's age there's the possibility of a brain tumor but more often not it's idiopathic. And your doctor is right, there isn't a lot to do if there is one. I've known dogs that have lived as long as 4.5 years when they suspected a brain tumor so don't give up hope. I know how hard it is to watch your baby go though this, but it does take time for the meds to do their job.
I was a mess during the first months trying to get Jake's seizures under control, but then I realized that he was picking up on my fear and I had to calm myself down. Not easy at all, but they really can sense when we're upset. I have no clue why our vet put up with me, but she did. I think I called her every day for a month at one point and each time I was in tears because I felt so helpless. Now I leave the room if I break down.
We're all here for you if you need us.
Take a deep breath when you can. Easier said than done, I know.
Take Care,
Lynne

Soongsis2
Posts: 11
Joined: Mon Sep 15, 2014 10:33 pm

Re: Newbie and seeking help and answers

Post by Soongsis2 » Wed Sep 17, 2014 5:32 pm

Thanks Kathy and Lynne for your kind words. Sad as it seems, it is comforting to know that you are not alone with the same struggles and challenges.

I have been doing more research on liver shunts (I'm now trolling the internet almost all my waking hours looking for answers...) and her post meal behavior seems consistent with some kind of hepatic encephalopathy. After meals within 15 mins she staggers and stumbles around with heavy panting, pacing around and staring into space. She'll then try to settle to rest but will keep waking and start pacing in fits and starts. I always thought that this was a sign that she was going to have seizures. And if she does, it happens @ the 30-45 mins mark. Otherwise, it goes on for another 10 mins and she'll settle down into a deep deep 2-3 hours sleep.

This was what happened last night as I halved her portion and took out some of the meat from the meal. She didn't have a seizure but exhibited the strange behavior. This post meal behavior started after her last batch of seizures that started 12th September. I am wondering if it could be her liver cannot cope with the toxicity of pheno or it's the fact that she has some kind of liver shunt and the pheno is exacerbating the issue.

I should add that she had a single episode of grand mal seizure in 2011 and it was suspected hepatic encephalopathy as her liver enzymes and bile acids was extremely high. She was put on antibiotics and Hepavite and she recovered v quickly, within 3 days so we chalked it up to an infection and didn't pursue it further.

Does anyone have any similar patterns with hepatic encephalopathy or liver shunts?

Soongsis2
Posts: 11
Joined: Mon Sep 15, 2014 10:33 pm

Re: Newbie and seeking help and answers

Post by Soongsis2 » Fri Sep 19, 2014 9:52 am

We came back from a specialist vet and the bile acid tests came back normal which means she doesn't have liver shunt. However, her neurological symptoms (outside of seizures) like pacing in circles, pressing head against wall, disorientation, blindness in right eye etc is still present. We don't know if this is still a post-ictal stage, and if it is, it is taking a long time to resolve itself.

The specialist vet is recommending a CT Scan and he gave her heart the all-clear for the GA. Do you think we should just do it to find out if it is indeed a brain tumor?

I'm going to pieces now and it's getting harder and harder to keep it together. I actually had to leave the house today during the usual timing of her seizures (post meals)... it was my partner who forced me to get out as he thinks Daisy is picking up on my anxiety and in turn get affected. Turns out she didn't have a seizure *touch wood*, so it might be me after all! :?

Thanks for listening.
Last edited by Soongsis2 on Fri Sep 19, 2014 11:32 am, edited 1 time in total.

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: Newbie and seeking help and answers

Post by Esmo » Fri Sep 19, 2014 10:56 am

I can't begin to tell you how sorry I am to hear of your struggle. Only you can decide if it is worth doing a CT Scan to rule out a tumor. I think I would, but that's just me and to be honest, we didn't with Maggie but that was because our vet and neurologist said they were pretty sure given everything else the diagnosis was epilipesy.

As far as picking up on your anxiety, my experience is that can be true. I know Maggie picks up when I am anxious over her condition, whether it contributes to her seizures I don't know, but if definitely stresses her out. I know how hard what you are going through is to handle, but do your best to take deep breathes and center. We have all been in the place where it seems so dark and there don't appear to be any answers and oftentimes, we can somewhat come out the other side with some sort of resolution and semblance of control. This stage was the hardest time for me, when we weren't sure and everything seemed so out of control and my lovely little dog seemed lost. We were lucky and while still struggling to find a balance of some sort, we are having more good days than bad.

We are all here and you are in my thoughts.
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

Eley's Mom
Posts: 198
Joined: Fri Feb 28, 2014 6:54 am
Location: Chicago, West Suburbs

Re: Newbie and seeking help and answers

Post by Eley's Mom » Fri Sep 19, 2014 11:05 am

I think based on the other symptoms, I would do the CT if you can afford it.
I honestly have no idea how much a CT scan for a dog is.

We did not do a CT for Eley and our vet said we could, but didn't even recommend it. Aside from the seizures, she doesn't exhibit any other neurological issues that would indicate a tumor. Our vet said if it were a tumor, by the time seizures start she would have likely exhibited other issues.

I know the seizures are terrifying, but do your best to keep calm. I know that's MUCH easier said than done. Our dogs are very in tune with our emotions and know when we're stressed or upset. When Eley clusters we actually cage her. Eley will keep seizing until she gets Valium or sometimes the emergency vet. We feel the cage is a safer environment for her in those instances. Usually after I get her a Valium and cage her I have to go take a slight breather. Then I can catch my bearings and carry on and help her.

One thing that has helped me is to make it a routine. It's the same story each time she seizes. First, get Valium in her, second get her to the cage. The routine has helped make things a little less stressful since it's the same drill each time.
Diana & Eley
Boston Terrier (23 lbs)
DOB: 11/12/09
First Seizure 2/8/14
Last Seizure 10/9/16
Phenobarbital 48.6mg (morning), 56.7mg p.m. (night)
3 mL Potasium Bromide, once daily
Clorazepate as needed after seizures

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

Re: Newbie and seeking help and answers

Post by SpencerBhumi » Fri Sep 19, 2014 12:06 pm

Hi Jennifer,

Welcome to the forum.

Canine epilepsy is a distressing disease: for all of its unknowns, because of its difficulty to treat, because of the grief it creates when fits & post ictal intrude. Most of us have enjoyed the company of a healthy dog before our comfort is suddenly removed with the arrival of this all pervasive disease. The sudden & dramatic change can be demoralizing.

I look back over my 4 years (and read so many similar stories here) and realize that we are so immersed in protecting, caring for and striving to better the life of our epi-dog that our grief is underestimated and takes second seat in the big picture. Over time I have just learned to better understand the disease and I have learned to do my best to protect Spencer. Much of this was on my (myself & immediate family) own because most of my friends (even pet owners) do not appreciate the impact of this disease.

DO take some time out: revel and relax in the good moments, for your & Daisy sake. Hopefully the medication side effects and the fits & post ictal will become just disruptive moments whereas the good days will prevail. If your partner is capable and willing to look after Daisy, share the burden and work on a de-stress plan for both of you.

If you have money for the CT scan (and the vet has given Daisy health clearance), go ahead and do it. Given Daisy’s partial blindness & knuckling there might be something more significant happening. Medication, fits & post ictal can all be very confusing - doing a scan might give you clarity. If the result comes back negative you can then focus on a long term epilepsy care plan for Daisy. If the scan does show a tumour/brain damage then you will have another definitive plan to work with: ultimately it might give you permission to know that you can stop futile treatment & prolonging an inevitable death. But this knowledge might also put you in the compromise of further care – surgical intervention V medical management or even short term end of life care. Also, in doing the scan you can take comfort in knowing that you are doing your utmost to help Daisy.

Either way for the moment, treatment will be the same – medication management to stop and prevent fits, and practical management of the fitting and post ictal dog (making Daisy’s environment ‘fit’ safe). There is plenty of support here for these issues too.

I wish you and Daisy well and will keep you in my prayers.


Trevor & Spencer

Grateful for the good days, weeks (months).

Soongsis2
Posts: 11
Joined: Mon Sep 15, 2014 10:33 pm

Re: Newbie and seeking help and answers

Post by Soongsis2 » Sat Sep 20, 2014 12:15 am

Thanks everyone for the support and advice. We have decided to go ahead with the CT Scan and scheduled it for next Friday. Meanwhile, we started her on this 5-days course of high dose antioxidant injections to see if there's any improvements. We tried it after her seizures in August and she responded very well. Hoping that it will work its charm the second time round.

Meanwhile, trying to pull myself together and get through this for Daisy's sake. The words of encouragement from everyone has really helped, and I thank you. I'm usually quite cool, calm and collected in other areas of my life but this has really sucker punched me. I guess it's the loss of control and helplessness to do anything to fix it that is making it worse.

Jennifer

Princesca
Posts: 22
Joined: Mon Aug 04, 2014 8:40 am

Re: Newbie and seeking help and answers

Post by Princesca » Sun Sep 28, 2014 4:18 pm

Jennifer,

Just a word of advice from someone who thinks she's a lot like you sound! When Roscoe was first diagnosed, I went bananas doing online research about his new condition. I read some real horror stories, and scared and depressed the pee out of myself. I am someone who likes information, and likes to be in control, but I took it too far and it was seriously making me a nervous wreck. I realized I had slipped into the mentality of 'I'll find a way to fix him if I can just find the right webpage!' Unfortunately, epilepsy doesn't work like that. It can be caused by anything or nothing. It may have a pattern, it very well might not. No two dogs are the same, and there is no 'hard and fast, tried and true, works every time' solution.

Remember, it is even more important that you care for yourself than that you care for your dog. So remember to be mindful of that, and know when it's time to step away from the research for a little while. It is one of the more important lessons I've learned so far.

Hang in there!
Proud mama to Roscoe, mixed Boxer/Tibetan Mastiff/German born in 2009
Keppra XR 2000mg every 12 hours, 7.5mg Prednisone daily, Zonisamide (dose TBD), monthly Percorten injection
First Seizure: 8/3/14
Last Seizure: 5/31/15

Soongsis2
Posts: 11
Joined: Mon Sep 15, 2014 10:33 pm

Re: Newbie and seeking help and answers

Post by Soongsis2 » Mon Sep 29, 2014 10:04 am

"I'll find a way to fix him if I can just find the right web page!" That brought a smile (and so true!) to an otherwise dismal day.

We finally did the CT Scan and turns out the vets were - unfortunately - right. Daisy does have a tumor the size of a golf ball on her left brain. Meningioma I believe is the type of tumor she has. It is devastating news but as Trevor pointed out, the questions I have are answered and we can figure out next steps for her. Without surgery, the prognosis is 2-3 months at best with the help of steroids. With surgery, in addition to the risks of brain surgery, this type of tumor will come back within 8-12 months. Essentially we are just buying time for Daisy and ourselves.

As we weigh our options, Daisy has started taking steroids (prednisolone) and the specialist vet took her off Pheno cold turkey and substituted with Keppra. I was quite taken aback with dropping of Pheno just like that, but he was so sure that the steroids and Keppra will keep the seizures at bay for now. To be honest, I haven't done much research (surprise!) on Keppra... What are the side effects?

You guys on this discussion board have been so great and supportive, and I cannot thank you enough for the comfort you guys have given me these past weeks as I tried to grapple with her seizures. Well, in a way at least I have the comfort of knowing what the road ahead is like, while many of you are still struggling with getting answers and and some kind of resolution. But you guys have hope on your side and the journey you guys are on might lead to a place that will keep this disease at bay. I hope you would take comfort in that.

Jennifer

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

Re: Newbie and seeking help and answers

Post by ShilohsMom » Mon Sep 29, 2014 1:32 pm

Jennifer,

I am so sorry to hear of Daisy's diagnosis and understand how difficult this is for you. It's such a double edged sword, it can be a relief to know what it causing it, but heartbreaking to get the news.

I don't remember Shiloh having side effects from the Keppra, although some of the side affects that would include walking aren't always noticeable with him because he damaged a disk in his back during a seizure last year and doesn't walk right. He pretty much walks like a drunken sailor all the time.

My prayers are with you, your family and Daisy.
Colleen, Rylie, Sophie & angels Izzie & Shiloh
DOB: 11/11/05
First seizure: 07/28//10
Last seizure: 06/27/16

Princesca
Posts: 22
Joined: Mon Aug 04, 2014 8:40 am

Re: Newbie and seeking help and answers

Post by Princesca » Mon Sep 29, 2014 4:00 pm

Roscoe is on Keppra and for the most part I haven't noticed any effects on his balance or anything at all. He is a little more twitchy, but that's about it.
Proud mama to Roscoe, mixed Boxer/Tibetan Mastiff/German born in 2009
Keppra XR 2000mg every 12 hours, 7.5mg Prednisone daily, Zonisamide (dose TBD), monthly Percorten injection
First Seizure: 8/3/14
Last Seizure: 5/31/15

Esmo
Posts: 48
Joined: Tue Apr 22, 2014 2:59 pm

Re: Newbie and seeking help and answers

Post by Esmo » Mon Sep 29, 2014 5:09 pm

Jennifer

I am so sorry. I agree with Colleen, it is good to know the why but heartbreaking to know it too. Maggie has been on Keppra for a few months now and I haven't seen anything significant from it in the way of side effects.

I hope what time you have with Daisy it good time.

Kathy
Esmo and Maggie
Dachshund/Beagle Mix
Rescued 12/16/13
First seizure 1/31/13
Last seizure 9/23/14
48 mg of Phenobarbital 2x day
150 mg of Zonisamide 2x day
500 mg of LevetiracetamER (Keppra) 2x day
200 mg of Gabapentin 3x day

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