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!)

 

 

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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.

 

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 😦

Further bumps in the road

I suppose it was foolish or blindly optimistic to think it would all be plain sailing since we consulted AHT on Harrison’s epilepsy.

Things have definitely been better, but the seizures keep coming, which we’re surprised and anxious about. Even Luisa seemed disappointed when I called to update her. She just explained she has a lot of work to do to get the right balance for him, but at the moment things are quite blind until we get true peak & trough blood samples taken to see how he is adjusting to his new dose, what kind of level does he have in his blood and is there more room to maneuver.

As ever, it never rains it pours, so amidst all of this Harrison has also had an upset tummy on and off too. In addition to the standard knock on effect that his ability to cope alone when we’re out at work seems to take a downward turn also (right back to square one).

So right now feels like groundhog day, we’re going over old ground with some of the behavioural changes and its so hard to see his separation anxiety exacerbated again, especially as we worked so hard to build him up to a good level. But, on a positive note the last couple of seizures (this morning and before that, on Monday morning) he has only suffered one fit in isolation (this is great progress!) thanks to the new seizure emergency plan we have with his meds and also he seemed to bounce back really quickly following the seizure too. He had his usual 1 hour of postictal pacing and bumbling into the walls, but after that was quite lively, energetic and coordinated. The devastating part is that both of these seizures occurred whilst we were out at work, he was alone in the kitchen. We have a camera setup so we can keep an eye on him, heartbreaking watching the footage of him convulsing on his own and coming round all confused and disoriented. Much harder than going through it in real life, to be honest!

 

 

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!