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.

 

Resetting the seizure counter back to zero

Yep, today was one of those days unfortunately. After an 18 day break since the last fits, Harrison suffered a couple more. He is resting now after the usual hour of pacing about wanting to eat the world.

He’s been a little tinker both yesterday and today, which makes me wonder whether this led to the seizures. Yesterday he’d gotten into my handbag and eaten some homemade fudge and today he’d had 3 overripe bananas (including skins) off the kitchen counter. Which he has never done before and they’ve always been sitting there on the side, out of his reach we thought but obviously not! Sometimes I have avocados ripening too, so thank goodness they weren’t in there as avocado isn’t very good for dogs, especially not the stones, which he would have undoubtedly eaten!

We’re going on holiday 1 week today, was hoping not to have any more seizures before we go but that’s the nature of the beast. Dreading leaving him 😦 we’re leaving him in safe hands, in our own home so minimal disruption for him.

His annual vaccines are due as well, I’m going to put them off for as long as possible but also ask whether we can have a waiver for a while, until we manage to get into a bit more of a routine with him. The fewer things that could cause or lead to a seizure, the better really.

I hate this illness so much! When there’s been recent activity it makes you question everything. Are we really doing the right thing to try and medicate him and tame this beast?

 

 

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Google Vet

I like research. I’m a geek, I like to hunt for information, gather lots of facts and learn from other people’s experiences as well as my own. This way, I feel like I can build a better understanding of what is going on, but also be in a position to ask the vet better questions to ultimately help Harrison and manage this condition to the best of my abilities.

But you do need to be really careful what you read online and approach with skepticism. I remember the behaviourist at the Dogs Trust offering the same advice regarding  training when we first brought Harrison home back in October 2015. She just explained to be wary of bad advice. Over the years research, theory and treatment can advance a lot, so what may have been standard a few years ago may not be the case any longer.

I think the veterinary professionals can be wary too when you ask questions about things you have read online which could be triggers, causes etc. Essentially every dog is different anyway, so in a way you need to just think of it as a blank slate and create your own records and experience log.

At the beginning, some of the things I read online were terrifying and made the whole situation even more daunting. I really feel for some of those I still read about who’s furry companions are suffering very regular seizures, even whilst heavily medicated.

I joined a couple of Facebook groups too, to seek advice and talk to others experiencing the same with their dog(s).  There you get to see other group members painfully sharing final posts and leaving the group,  as they’ve had to have their dog put to sleep. They always thank the group and state how helpful its been to be able to talk and discuss their situation with others going through the same. I would say its more for catharsis, like a kind of a group therapy than to really share tips or experience. Of course that happens as well, but I think ultimately you need to let the veterinary experts guide you correctly when it comes to your dog anyway.

I wanted to share some things I have learned that I wish I had known right at the start;

  • I know this is so much easier said than done, but try to remain calm, although horrific to witness the seizures are generally not harmful. Try to protect their head to avoid them banging it on anything during convulsions and be prepared for them to eliminate during the seizure. They may urinate, defecate or release their anal gland, or all 3…! Believe it or not, the seizures do get easier to deal with, whether this is from being desensitised or you just better at coping and less shocked with it all I don’t know, but you wont feel like a cry baby about it forever – promise!

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The first seizure

That first seizure was actually not the worst one. Yes, the first one is definitely very scary and everything is unknown, but it feels perfectly reasonable that it could be a one off and then the vet leads you to believe that it could be a one off too. Then, your worst fears are realised and it keeps happening 😦 the second time was by far the worst. It catches you totally off guard, even though you have gone away and done your research, you’re still clinging on to the idea that it could have been a one off. Or at least, that it wouldn’t happen again for a long while. Witnessing your poor little pooch have a fit is truly horrific, you feel totally helpless, they are terrified and worst of all, you can’t explain to them what the hell is going on.

Since 23rd February (15 days ago), Harrison has had 7 seizures. The vet advised after the first one that any more frequent than once a month would require lifelong medication to manage the condition. So, he has started his first tablet trial today, something called pexion. Really hope it works out for him, otherwise we’ll have to try many more to find the most suitable and effective drug for him, or a combination. Personally I am fairly opposed to human medication, let alone for my animal. I prefer a more natural and holistical approach wherever possible, but the risk of long term damage is too high with such regular seizures, or by having several in quick succession (called “clusters”), so we have to try him with medication now.

The good news is that even though the condition is incurable, a dog with epilepsy can still lead a full and happy life, if you can learn how to manage their unique needs properly – every dog is different. So, this is the start of a new chapter for us!