Never give up!

So, after a very emotional day on Sunday and lots of tears I have new found determination and optimism. Sometimes it just helps to let it out, right? Then you can move on!

As our vet so poetically advised, “well your only alternative now really is euthanasia, so what have you got to lose?!” so with this in mind and having talked to some other owners of dogs with seemingly very severe epilepsy, I am preparing for one last battle.

If H is with me and ready to fight, then I am too. Judging by the wonderful snuggles and cheeky little face he still has his determination isn’t waning and until I feel he signals to me enough is enough I won’t give up on him. Come on, I can’t face not having those velvety soft ears to rub and snuggle. I need them in my life a little bit longer please!

So to hell with what everyone believes, thinks, recommends and suggests or says about me behind my back. They’re not living through this hell, I am. Putting it bluntly, unless you have experienced owning a dog with severe epilepsy you have no idea what we’re going through so let us get on with it and keep your mouth shut, unless you’re being encouraging! 🙂

The next steps are controversial really, we go down the more holistic route but also attempt to wean off some of the meds gradually probably against the advice of both our vet and neurologist. BUT, Harrison is a special, unique case – always has been, always will be. So maybe this time, this more unique approach actually succeeds? All methods attempted so far are unsuccessful, so as our vet said, what have we got to lose. Essentially the outcome is the same. Right now, the only viable option is euthanasia when we decide this current seizure frequency is no longer sustainable (i.e. in a couple of weeks time realistically). So we try one more thing and if it doesn’t work the outcome is still the same. But if it succeeds (like it has for the ladies I’ve been talking to and their beautiful dogs) then we get to enjoy our sweet boy just that little bit longer.

To be honest, even if we only got another month or two with him, but it meant that precious time could be seizure free (or at least less frequent seizures), I would be happy with that. That way, we could spoil him rotten, say our goodbyes and give him the good send off he deserves.

Mother Nature, let your magic calm my poor sweet boy’s busy little brain.

 

 

 

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Where do we go from here?

It’s been a while since my last post. We have been busy implementing the new medication plan, desperately trying to get Harrison’s condition under control and its been such a tough few weeks. Everything is new territory for us; new signals, warning signs, patterns, different behaviours, different seizure characteristics – it’s all completely new.

He had a few seizures whilst we were at work too, so we had to get a full time dog-sitter in which is very expensive, but we thought we’d stick with it for now whilst we try to get things to a manageable level at least and were advised by the neuro to minimise stress* as much as possible (*separation anxiety). The aim being to reduce the dog-sitting hours over time as his seizures strike less often.

I’m afraid we’re not quite there yet though, things are still very much in progress. We’ve not managed to reach a good stable, control level with his meds and have to keep fine tuning things. But overall, it is not looking good at the moment.

We’re pleased that his seizures have definitely become less violent, he recovers more quickly and he is only suffering 1 at a time now, rather than clustering into several. Which is good progress. But the frequency remains too often still, with seizures occurring every few days. Even the specialist is concerned and surprised by the fact he keeps on having seizures with all the meds he’s on. He’s a unique specimen that’s for sure! Poor little boy.

We’d already accepted when we started with the specialist early September that by Christmas we believe this will be sorted one way or another, his condition will either be under control or he wont be with us any longer. Its horrible to think like that, but I think we have already come to terms with it now. I am feeling less optimistic than before, as the specialist is so surprised his fits continue 😦

The Expert Experience

The weight has been lifted from my shoulders.

We had an excellent consultation with Luisa De Risio at the AHT on Friday. Luisa is the leading author of a book on canine and feline epilepsy and she is a member of the International Veterinary Epilepsy Task Force. Luisa is an editorial board member of the Journal of Feline Medicine and Surgery and Associate editor of the Veterinary neurology and neurosurgery journal.

Things had deteriorated very rapidly with Harrison, so we got referred to AHT for what we considered to be the last chance we had to gain some control of Harrison’s condition, or we would have to make the decision to have him put to sleep as he was suffering too much.

So we attended the appointment feeling quite bleak and like this was our last chance really, but safe in the knowledge that if we had to make the final call, at least we could do so knowing we had exhausted every option.

So it was a relief and quite emotional to learn that the specialist is very confident she can help and there is loads of room for improvement. Yippee! So now, onwards & upwards! We can concentrate on getting his condition under control and if we end up with a difficult decision to make later down the line then at least we know we tried everything possible to help him.

The bad run continues

We should have been at the airport now, sipping complimentary drinks in the Aspire Lounge at London Gatwick, waiting to board our flight to New York. I was so excited about it, my first time in NYC!

Instead I’m sat at home in a filthy, dirty house too scared to get up and start tidying and cleaning up as Harrison has  finally settled off to sleep and I don’t want to wake him up. The poor lad is exhausted, well, so are we. This recent blip I have written about before turned into a very rocky week long patch and we felt completely helpless. Leaving us with no choice but to cancel our trip to NY and get H in to see a canine epilepsy expert ASAP, before we lose him.

I was scheduled to go to New York with school in October 2001, but they cancelled the trip after the terrorist attacks. Maybe its a sign? Maybe I am not really ever meant to make it to New York?

Anyway. Things kicked off last Wednesday evening around 21:00, but the seizures continued for about 14 hours and he never really recovered in between, even though the duration between was longer than normal. Our vet prescribed keppra as a cluster buster, but it barely touched the sides. Yes the seizures seemed to subside short term, but Harrison was manic, frantic, endlessly pacing around. The brain activity was clearly still going on and the keppra was fighting against it, but it didn’t seem to be enough.

Then the seizures kept coming, we never expected more when he was put on keppra, but sure enough seizure activity broke through. I said there and then I didn’t feel comfortable leaving to go on holiday and we needed to cancel/postpone/reschedule and do whatever necessary to get him sorted. Crisis point you could say. Not sure how much more of this he or we can take.

So we’re booked in to see Luisa De Risio, Head of Neurology at the Animal Health Trust Friday morning. Essentially, if she can’t help us then no one can! Luisa is a leading canine epilepsy expert and has even published a book on the subject, which I refer to on my Resources & Info page.

Feeling optimistic, but at the end of the road really, this is our last chance to get him hopefully the right help, or we have to call it a day. It’s not fair on him and he’s not himself at all.

He barks constantly, like a frustrated helpless bark and is even biting us accidentally during play, but much harder than a play bite, so we can’t sustain this for very long.

For anyone who’s ever been in this situation, my heart goes out to you. It’s absolutely awful and you constantly question whether its fair to even carry on for the time it will take to try and regain some control. This moral, ethical conflict is really hard!

At least he is asleep for the moment, so we get a minute’s peace. But we’re living in fear that the phone ringing or any other external noise will wake him up and we’ll be sent right back into that sick cycle of frustration, which takes him so long to snap out of and settle down from.

At least after Friday’s appointment we should know whether there is any hope, or whether we’re just prolonging the inevitable. I’ve already made my peace with it and don’t feel that sad as I write this or think about it now. I know I would be sad, devastated, if we had to have our poor, sweet boy put to sleep, but I would feel reassured that we had taken things as far as we physically and mentally could, sought the best advice and care available and tried everything we could for him, before making any rash decision.

 

(hopefully) it’s just a blip

Harrison had another couple of seizures last night unfortunately, just after 18:00. He’d vomited his breakfast in the morning, but re-ate it so we weren’t concerned he didn’t get his medication. Hope things settle down soon, we’re supposed to be going away on 6th September, seriously won’t even feel like it if this recent spate of seizures doesn’t subside.

As usual, he paced around restlessly for about an hour after the seizures and we’d given him 50mg of diazepam to break the cluster, but then chilled out and we didn’t encounter anymore issues during the night which is great! Let’s hope for a trouble-free weekend now, what’s left of it.

Since we added in libromide to his medication mix last Monday he had been encountering some adverse side-effects, which have subsided a little thankfully (vocalisation, restlessness), but it can still take a little while for the medication to reach the therapeutic serum range and provide that stabilising effect we really need at the moment. This is very much a matter of patience, not expecting miracles overnight and managing as best you can in the interim. It’s so hard to see your beloved dog go through this though and breaks my heart reading about all the lovely pets who have to be put to sleep as a result of their epilepsy or associated conditions on some of the Facebook groups I mention on the RESOURCES & INFO page of my blog. My heart goes out to all of those people who have lost their pet due to this awful condition. It made me wonder about what humans who suffer with epilepsy have to endure as well, how awful. At least you can explain to humans though once they’re old enough, so they know what’s going on. The worst thing for Harrison is how frightened he is immediately before and afterwards, poor little baby.

One of the founding members of the Facebook groups has setup a couple of fundraising pages. One is to support those who can’t afford a neurological consultation and the relevant  tests etc, as not covered by their insurance or they don’t have any. The other is to raise a bit of money to setup a service to raise awareness, knowledge share, advise and guide others who are managing this condition with their pets. To support them in asking the right questions and knowing when to be firm or assertive and challenge their vet where needed etc. No one knows your animal like you do, even if you don’t have the veterinary knowledge, you are the one who speaks for them and has their best interests in mind. I found this element quite challenging when all the info we were receiving was conflicting. But essentially, not many vets or neurologists are specialised in epilepsy and eventually that’s what you become, with enough time dedicated to research and learning about the condition and treatment. Please see links below to the fundraising pages in case of interest and you’re feeling generous! 🙂

Rusty’s Memorial Neuro Consult Fund

Canine Epilepsy Awareness