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.