Confirmation

Harrison had another seizure this morning, so it looks like even with his most recent med zonisamide being added he’s still on his every 3-4 days seizure pattern. We almost discounted the last 2 seizures whilst we waited for the drug to take effect (5 days, apparently), but today’s event confirms our worst fears really. However, we could blame it on the clocks changing etc, but we know we’re kidding ourselves.

So we have about 2-3 weeks of food and medication left and we know we’ll need to reduce his phenobarbitone anyway due to his levels being too high at the moment. If his seizure frequency or severity increases a lot as a result of that then we know we have to act quickly, otherwise we just have to carry on as we are until we know the time is right. I don’t think it will be very long, unfortunately.

Feeling very sad and hopeless now, I wish there was something more we could do, but we have tried everything it seems and nothing is helping, so don’t want to run the risk of doing anything which is unfair or cruel, or just prolonging the inevitable any further.

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The final hurdle?

Its hard to know what to say really. Things aren’t really going as we had anticipated and it feels like now more than ever, the end is in sight..

Since visiting the epilepsy specialist on 6th September, we still haven’t managed to gain control of Harrison’s seizures. He is currently averaging a seizure every 4 days. Whilst its true that the seizure severity has improved a lot, the seizures are much less violent and he seems to recover quickly, which is great. However, although he recovers fully and behaves like his usual self inbetween seizures he still isn’t able to lead a “normal” life at the moment and neither are we. Don’t get me wrong, I don’t mean this in a selfish way, we would go to great lengths to make this work long term (and have already done so much), but we also don’t want his epilepsy to be the all consuming part of his and our lives as if that is the case, then really we know things are too bad to carry on as we are. I hope that makes sense? At the moment, Harrison has not been left on his own since around 22nd September. We know that when we try to build him up to being alone again he may get a little bit agitated or upset and for the time being we wanted to give him a good chance to have a break from seizures before trialing, as the stress may induce another seizure and we can’t knowingly put him through that.

He started with a drug called zonisamide (Zonegran) on 20th October. This is in addition to the phenobarbitone and levetiracetam he is already taking, as they’re clearly not having the desired effect. Zonisamide  costs around £200 a month, we can claim on our insurance for now thank goodness, but we have to be out of pocket until we claim it back as we’re purchasing from the pharmacy as it is human medication! The vet could dispense, but cost even more then, closer to £300!

We also got the results back from his recent blood and liver tests yesterday. Currently his pheno is at a very high dose, within the toxic end of the therapeutic range. His peak sample was 40mg/l and his trough sample was 36mg/l, whilst his liver levels looked good for the moment he has only been on this dose for 3 weeks, but over time this high range would destroy his liver. The therapeutic range for pheno spans 15-40gm/l, as the start of this journey Harrison was on 15mg/l with poor seizure control and, this was increased to around the 28mg/l mark, but was dipping below 25mg/l when his next dose was due in 12 hours. For a dog with seemingly severe seizures, or poor control of seizures like Harrison, the specialist advised they need at least 25gm/l consistently for optimum seizure control and to not dip below that level when their next dose is due. So we now administer his pheno every 8 hours, as he was dropping to 23mg/l around the 12 hour mark.

So we’re waiting for further instruction from our vet and neuro now on how best to proceed, I imagine we will drop his pheno back to 90mg every 8 hours (he was on this originally, but kept having seizures when we dropped from 120 suddenly so it was hiked back up), potentially even 102.5mg, as you can get 12.5mg tablets too. Hopefully now he takes the zonisamide as well dropping his pheno shouldn’t mean he starts seizuring even more regularly again.

A more common drug combo is pheno & potassium bromide, but this really didn’t suit Harrison. His personality totally changed so we stopped giving it to him again, as everything became even more difficult to manage then as he was frustrated and aggressive, it was horrible. At least if we don’t have long left, we have our lovely sweet boy back now.

His zonisamide should be at a good effective level now, the couple of seizure during the last week have been logged but we haven’t let them dishearten us, but moving on from this point really we have to really assess what we are going to do long term as adding zonisamide was pretty much the last option and if he isn’t responding to it then the beast we are wrangling is just maybe that bit too strong. I have read lots of success stories with more natural, holistic approaches such as  CBD oil, essential oils, homeopathic or holistic treatments but its whether we think we should try if we think he is suffering seizures every 4 days.

At the moment all I want for him is a good seizure free break so we can just enjoy a bit of normal life with him.Then if we had to let him go after that, I would feel more comfortable with it, knowing we can just spoil him rotten and give him a good send off.

 

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.

Celebrating a mini victory!

Not wanting this blog to just be the negative or pessimistic ramblings of a desperate woman, I thought it was time to write something a bit more positive!

I am so pleased to say that Harrison is feeling much better today, thank goodness! 🙂 He’s celebrating by chomping on a brand new stag antler! 😀

He is still not 100% his usual self, but much closer to that than he was at the start of the week. Still a bit barky and bitey, but overall more calm. Our boy is coming back to us 😀

So we have our appointment with the neurologist tomorrow morning and will be able to discuss an action plan for how we move forward.

I believe with the right mix of medication and the appropriate meds for during/post seizure we will be able to manage this beast and Harrison can have a lovely, normal life.

Isn’t it funny how catching up on some much needed sleep alters your mindset completely on challenging situations! Being able to get on and do some housework yesterday was very therapeutic also and the window cleaner came today too 🙂

Current mood: Feeling optimistic & determined!

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.