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.

 

 

 

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.