Our journey

Fantastic Photographer!

It’s been almost 2 months since we said goodbye to Harrison.

It hasn’t gotten any easier. But I have begun to accept that it never really does, you just find a way to carry on, even though the hurt is still there. It never fades at all, not one tiny bit. You just get better at distracting yourself and keeping your mind busy. But as soon as you focus on the fact he isn’t there anymore, or there is a memory or reminder at the forefront of your mind, the feeling consumes you. A weird mix of happiness and sadness. Happy to remember him and all the good times, but so so sad to be living with such a big void in our lives now.

After a particularly bad weekend where he was really suffering with his epilepsy we knew the time had come. Once we had reached the decision to say goodbye we quickly arranged for a photographer to come and capture some nice moments, so that we had some really high quality images to remember him but and not just the mobile phone snaps and videos we already had. Don’t get me wrong, we had loads of great shots, but really wanted some high quality images to have printed, framed and displayed around the house.

I contacted a few local-ish photographers and finally found Tracey. I knew straight away I wanted her to take the photos ahead of everyone else I had spoken to. She was very quick to respond to my initial enquiry and provided regular updates with a very personable, friendly and professional approach, whilst also applying the necessary sympathy and sensitivity given the circumstances. We are thrilled with the photo shoot results and decided to buy all the images from her. We received them on a USB stick, which came packaged in a lovely presentation box with Harrison’s name on, which was a lovely additional touch as well.

Tracey’s website: http://www.tmsphotography.co.uk/

The shoot itself was relaxed and easy-going, we just went for a walk in the woods and poor Tracey had a pretty tough job with Harrison, as he was not a very patient or calm model (or dog in general, ha!) the final results are fantastic and we have some really beautiful images to keep and remember him by. It goes without saying, it was an emotional shoot and even more emotional to receive the images and view them all – it still is now. Tracey was aware of our situation as I wanted to be honest when approaching any photographers, but she agreed to take the job on even though it was pretty sad for her too, as a dog lover and animal lover in general. We’ll be forever grateful.

What I have learned from this experience is to get the photo shoot done, no matter what! This was arranged under sad circumstances, but for our future dogs we will definitely do the same again just to have some beautiful moments captured (but hopefully years before we have to say goodbye!)

There are so many good pics, but here’s a few of my favourites (the newly updated header image for the blog is another one too 🙂 ).

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Seizure Action Plan

This is our typical course of action when an epileptic seizure occurs. We have everything already in place all the time “just in case” and have learned this through trial and error really and what works best for Harrison. All dogs are different, but this is what seems to work for him.

Preparation takes the pressure off a little in a crisis

Advanced checklist: After a while you will do everything required on autopilot, but in the beginning it may help you function in a panic if you create yourself a checklist so you can methodically follow the steps.

Create a safe place: Our kitchen is Harrison’s safe place, as there are limited obstacles when we need to act fast. We switch the cooker hood/extractor fan light on (without the fan), which provides enough low level light without being dazzling. During the day, we shut the blinds to dim the light. He also has access to the garden easily from the kitchen for when he’s ready to go to the toilet. When a seizure strikes we pick up his water bowl (tipped over way too many times!) and move his bed and toys out to the hallway, then there is nothing left for him to fall over. We also lay down a couple of rugs which help him walk and stabilise on the floor, as he really struggles on the wooden floors after a seizure. We have 2 of these HULSIG rugs from IKEA which cover almost the entire kitchen floor and fit in the washing machine one at a time. Not bad for £9 a piece! 🙂

Emergency Meds: Always have your emergency meds ready to go. Packets and pills can be fiddly when you’re on red alert, so make your life easier by preparing so you can tend to your dog efficiently in a crisis.We keep Harrison’s emergency levetiracetam (keppra) tablets and valium tubes (diazepam)* in a specific container in the kitchen – ensure you always adhere to the drug storage instructions so they can remain as effective as possible. *Please note, this emergency medication was specifically prescribed and instructed by our neurology/canine epilepsy specialist.

Emergency veterinary attention: If things escalate at home, call your vet or out of hours emergency line ASAP. Save both numbers in your phone in advance so you can act fast. We have been advised to take Harrison to the vet should he suffer any more than 2 seizures within 24 hours, as he will need IV fluids & IV medication to stop the cluster of seizures.

Recording the seizure: It may help to keep a pen & notepad near the emergency meds. You need to make a note of the time, date, duration, any special characteristics of the seizure. You will need to keep a full seizure log to recording all of your dog’s seizure activity and if you visit your vet or a specialist they usually want to review this. There are lots of good seizure log templates available online, I found the templates available on the Epiphen website really good. I created my own version in Microsoft excel though, because I’m a geek! 🙂 Our specialist wanted a log which combined the seizure log and medication log as well, so was best to tailor it to suit our needs. Our first neurologist recommended the RVC epilepsy app tracker, but I found it a bit rigid and the export wasn’t in a very usable format either. It might work for some though 🙂

How you can help your dog

Remain calm and if you talk, make sure its relaxing and reassuring. Sometimes silence may be best. If you get any pre-ictal warning signs a seizure is incoming, turn off lights and other stimulus and take your dog to the safe place you have created for them. At this point, you can give them their emergency medication if they will eat it/take it (Harrison hasn’t ever been able to at this stage, as he’s already too spooked).

We have previously tried to put his Thundershirt on during the pre-ictal stage to see if it helped with his seizure or recovery or general distress. In our experience it didn’t seem to help much, but it did mean that he urinated during the seizure, which doesn’t normally happen (due to the compression I guess!). I will add, the Thundershirt has been effective in calming or relieving anxiety at times outside of seizures (when we started puppy class for example and  he wouldn’t sit still!:))

During and after the seizure your dog may overheat, so this is another factor when considering using the Thundershirt, as that will keep the heat in even further. We use ice packs and/or soaked towels to keep him cool. Its best to cool the ears & paws, an ice on the spine can help the seizure activity.

I should add, you need to react accordingly to your dogs seizures. If it lasts any longer than a few minutes and you have already tried diazepam to no avail, or don’t have any at home, then you need to call the vet ASAP. A prolonged seizure is called status epilepticus and can be very damaging/fatal. So read the signs and get the necessary help if you are worried. We had to do this when Harrison got stuck in a cluster, he had 9 seizures within 2 hours and needed IV drugs to break out of it.

Some people claim they have good results with natural calming products such as Pet Remedy or natural essential oils, even things like Bach Flowers Rescue Remedy. Rubbing essential oils into the ears or a few drops of rescue remedy in their water bowl or directly on the tongue can help.

Following the seizure your dog may be paralysed, deaf/blind, confused, disoriented but when they start come round you will want to get their blood sugar up. Some people suggest using a decent, organic ice cream but we found this too stimulating for Harrison, it made him go hyper. We find it most effective to give very small amounts of food often and scatter across the floor so he can sniff it out and find it. This helps to focus his attention and stop him going frantic or gulping it down too quickly.

When the seizure strikes:

  1. Stay calm.
  2. Turn off bright lights and other stimulus (mobile phones, games, tv, radio etc). If you have other animals, ensure they are kept away to avoid any unnecessary stress.
  3. Make a note of the time when things start kicking off.
  4. Take your dog to their safe place, as soon as its safe to do so (you may not always have this option before the seizure occurs).
  5. Protect their head and stop them hurting themselves during the seizure.
  6. Be careful around their mouth area in case they have a jaw snapping motion during the seizure, or in case they may bite out of fear.
  7. Administer emergency meds/remedies, if you are using any.
  8. Try to keep them cool.
  9. When they start to come round, remain clam and talk in soft, reassuring but positive tones telling them they’re a good boy/good girl. You may want to stroke them gently, but be wary as they may be a bit jumpy. Some dogs may show aggression as they’re so frightened, so be  very careful.
  10. Administer any post-seizure medication/remedies you have been advised to give as soon as you are able to.
  11. Give plenty of food, they will likely feel ravenous and you need to get their blood sugar up.
  12. Give your dog the time and space they need to recover and just ride it out together. Remember it is probably worse for you to witness, than for them to endure.
  13. If things don’t seem to be improving, call your vet/emergency line ASAP.

Harrison’s seizure events usually last 60 minutes from start to finish. This starts at the point of the seizure itself right through to end of the post-ictal pacing, restless period. After plenty to eat, some pacing about, toileting outside and a nice big drink of water, we know he is probably almost ready to crash out finally. We let him sleep and recuperate until he indicates to us he is ready for walkies or playtime. By the time he wakes up he is his happy go lucky, cheeky self again!

Nutritionist Help

We had a consultation with a canine nutritionist yesterday. After deciding to switch to raw feeding we were keen to enlist the help of someone experienced and knowledgeable in this area to ensure a smooth transition and a controlled approach.

I had done a lot of research myself of course, but like with the start of our canine epilepsy journey, it seemed a bit of a minefield, there were so many different comments and conflicting recommendations I thought we’d be best consulting someone who knows what they’re doing!

We had a great consultation with thedognutritionist which wouldn’t have been complete without Harrison having a seizure half way through….! Poor little dude, he made a speedy recovery though and is his usual self again after plenty of food, water and rest.

Admittedly, we’d made a few mistakes with his medication since the 1st November (administering the wrong meds at the wrong time) so we have had to implement a better system to prevent this from reoccurring. Obviously you are riddled with guilt after something like that, but at the same time we are only human and mistakes can happen.  I bought a new, larger pill box / dosette box to try and keep us on track. It has 4 compartments for morn, noon, eve, bed administrations. I managed to find it in Poundland, so was only £1, I noticed they’re very expensive in pharmacies! We actually need 5 compartments for 6:30, 7:30, 14:30, 19:30, 22:30 doses but the pill organisers with 5 sections were massive and really expensive. So for now we have kept the 2:30 dose in our original 1 week pill organiser as this is easier for our dogsitter as well, as this is the only dose she administers, so hopefully we can remember during the weekends and keep all his meds on track. I have re-labelled all the sections with correct times, drugs names and dosage too, so hopefully we wont have anymore mishaps for a good long while!

Going back to the raw feeding and nutrition, we’ve only got about a week’s worth of kibble left so are starting the transition now, starting off with a bland protein (chicken) and building up from there. I fed him some raw chicken yesterday as a little test and he wolfed it down, so I think we should be ok! Will be interesting to see how he takes to eating stuff with bones. A lot of people cite great success with raw feeding for epilepsy management in dogs. Our neurology specialist has mentioned ketogenic medium-chain TAG diet as well in her most recent report. This is a high fat, low protein, low carb diet essentially. Good job H loves coconut oil! 🙂 (I should probably get on a better diet myself, all this comfort eating is definitely taking its toll!)

 

 

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.

 

 

 

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.

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 😦