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Really need some support ( epileptic dog)

(19 Posts)
NoJusticeJustUs Mon 25-Jul-11 19:32:19

six months ago my beautiful two year old staff cross lurcher had a massive fit, cue repeated vet visits, blood tests, brain scans and massive medication.

Six months on and it is still not under control.

The vets have diagnosed epilepsy but as he has a very fast metabolism they cannot control it.

In the last 5 days he has had 7 major fits (2 today), these involve him voiding his bowels, biting his own tonugue, howling in pain and fear and all in front of my two dd 3 and 16 months.

He has gone from a beautiful, happy, kind dog to a zombie like shadow of himself that we cant even walk.

My oh and I have realised we may have to make the decision to let him go but our vets keep trying "just one more thing" and while they have ideas we have to try. Dont we ?

Im starting to wonder if its best for him, i have owned dogs all my life but never had one so ill so young.

Does anyone have any advise experience of this please help

DogsBestFriend Mon 25-Jul-11 19:41:52

Yes, I have - and first thing I'll say is don't give up yet.

My experience is merely as an owner - I have an epi GSD and have in the past owned an epi dog but I know of someone who's far better qualified to advise than I.

Bear with me, I gave this advice only recently so am going to be lazy and go find the info I wrote then so I can copy/paste it here. smile

DogsBestFriend Mon 25-Jul-11 19:57:46

Right, here's what I posted, adapted appropriately I hope (but apologies if I've missed anything - oh, and please substitute she for he!). The dog I wrote the post about originally was prescribed Phenobarbitrate, as my own is, and I'm assuming that yours is too - please correct me if I'm wrong here.

Keep a diary day to day, including walks, fits, food, treats, stresses and stimuli and visitors/anything out of the usual in the dog's environment, thus try to identify any triggers. Change the dogs diet immediately if necessary and at once to one which has no colourings, preservatives or additives as they are big epi triggers. I use Fish4Dogs (available via their website) have in the past fed Naturediet which is just as good but more expensive and bulky to store, others feed raw.

Keep all stress to an absolute minimum. If pooch gets hyper around DC, keep DC away, likewise other visitors. If the hoover troubles her, put her out the way before you use it and soforth.

Keep her away from chemicals too, especially pine scented ones and avoid all pine scent in general if poss as this has beem proven to trigger. Some dogs will fit around the full moon - this is accepted by leading experts in epilepsy though not really understood and of course there's not much you can do but it's worth noting so your parents can keep an especial eye out during this time. Keep her away from/remove from her area computers too as they can trigger fits (it's believed to be the noise).

If she fits, stay calm, remove anything and anyone from the area she can get hurt by or could hurt or get stressed by, there's no need to panic or have any more than one person with pooch. Note the time striaght away and get her into the vet immediately if she fits for more than 5 minutes. Assuming she doesn't she should be able to have another Pheno with some food, most cases this is appropriate but I am NOT a vet only a rescuer so get the vets okay on this. It will depend on the dosage she is on, most vets will ok it as they normally start off on the lowest theraputic dose. (Pheno can cause liver damage long-term so the ideal is the minimum theraputic dose but sometimes this takes a while to identify and thus stabilise the dog onto a suitable dose). Upon coming round offer a small amount of food and a drink and fresh air - heat can be both a trigger and an added problem when a dog has fitted - but remember that she may be disoriented, may not know how you are and thus be unpredictable and may as a result try to bolt or get through a window. If in any doubt take into the garden only on a lead, you do not want a post-fit, disoriented dog escaping.

Have you noticed any "absences" or unusual behaviour such as pacing or excessive panting. Absences are when the dog appears "not with it", she may be staring at a wall, bump into things, be unresponsive to you. If so the immediate way to try to prevent a full blown fit is to apply compression to the eye area. Doesn't always work but often does. Also if so the vet might prescribe Gabapentin - some don't like to as it's not so well used here but is pretty standard for absences in the US, where they are far more up on canine epilepsy than the UK. Rectal valium would be a good thing to have on standby too.

Remember too that many vets are, IME and that of the rescue I work closely with and that has a very good reputation for it's care of epi dogs amongst other rescues, not necesarily very well versed/experienced in canine epilepsy and so it may be the case that you feel the need to ask around for a recommendation of a more experienced surgery (rescue is always a good place to start, as are dog forums like DogPages which has a lot of very dedicated and knowledgable owners and rescues as members).

The man who knows more than anyone else I know on canine epilepsy is Dave of Poplar Farm Rescue Kennels. He's the "real" owner of my current (foster) epi dog, an 8 yo GSD. He will happily give you as much help and support as possible. I'd really recommend that you either post on the forum in that link (he reads and posts on it each day) or send him an email (tell him you were recommended to talk to him by a Mumsnetter and he'll know it's me who suggested it!). At a rough guess I'd say he currently has about 8 or 10 epi dogs out of the 60 or so in the rescue.

Simple things too that you might not think of - always carry your vets number on your mobile and always carry your mobile when out with pooch, never ever allow her to swim... swimming was a trigger for my first epi dog but regardless you DON'T want a dog to fit whilst in water, she will drown. Don't get her too excited when in the company of other dogs. Make sure that ALL the family know what to do if she fits, even just so that they know to clear the room and leave you to it.

How often is your dog being medicated? And IS he on Pheno? As I said, I'm NOT a vet but if the meds are being absorbed rapidly it sounds possible that th dose might need to be split so that instead of, say, every 12 hours, you're medicating every 8 hours. Be careful too to ensure that you don't miss a dose or run late with medicating, especially if he's on Pheno, as this could really make a difference.

Again, I'd really, really recommend that you contact Dave at Poplar Farm, and if I can ever help in any way, just shout.

NoJusticeJustUs Mon 25-Jul-11 20:27:02

DBF thank you so much for replying, at the moment he is on ephiphen and libromide spaced exactly 12 hours appart, we have been keeping a diary and the triggers seem to be walking (the excitement I guess) and worry, if he is left (left alone once a week for four hours) but to be honest after six months the majority seem to be random.

He is a big dog and once fitting cannot be moved, Im terrified he is going to fall on one of the children and start, there is alot of mouth snapping involved.

This week has really got me down as even when not fitting he has not been "present" iyswim and Ive known he is heading for another.

He is going to the vets tomorrow am and they are going to take blood every hour to test the levels over time, hopefully that will give us some answers.

Tell me, is your gsd back to her normal self personality wise. I miss my dog

DogsBestFriend Mon 25-Jul-11 21:19:34

Ah! Epiphen is the brand name for Phenobarbital. smile Bromide is IME prescribed to dogs with the more severe/harder to control epilepsy but it's a bugger to get the dose balance between the lowest possible level which has appropriatee theraputic benefit and a level which although effective in the fits sometimes alters behaviour and/or causes vomiting (and again, obviously, absorption problems) and unsteadiness in the hind legs/lethargy. Once the balance is achieved the results can be remarkable - a lookalike of my own epi GSD, a big white longhaired boy belonging to a fellow rescuer was reliant on the combination for many years. J lost him a few months ago, to suspected DM, not to epilepsy.

Likewise Dave at the rescue I linked to has a few dogs on Pheno and Bromide, some on Pheno alone and some on Pheno and Gabapentin. Some of those dogs came to him at deaths door but you wouldn't know it now. Please, if you do one thing tonight, give yourself some hope and take time to read Eddie's story.

I'm a volunteer for that rescue. When I first met Eddie, a week or so after his arrival at PFK, I thought they had it all wrong, that PTS would be the only option. Eddie was circling constantly, bumping into things, staring into space - he just wasn't there with us, couldn't interact. He was in a dreadful way, worse that I've ever seen in an epi dog when not actually fitting. As you'll see from his story, I was wrong... and have rarely been so glad to be so! And, you'll hopefully see why I recommend that you speak to Dave.

As for my boy, Fish the GSD (the elder of my 2 GSD and the middle dog out of the 3 I have in total) is is 8 and has been living with me and my DDs for the past 18 months so I don't really know what "normal" for him is, IYSWIM. He's pretty normal as dogs go (though all mine seem to be daft as bats!), a little nervy but that's down to upbringing in the past and not health.

It does take a considerable time to stabilise canine epilepsy so don't despair, please. And ask your vet about Gabapentin to ward off the "not all there" stage and prevent pooch from fitting. As I have said (several times now!) I'm no expert, I may be wrong on suggesting that but from my experience and knowledge of the epi dogs in the rescue I don't think I am and there's no harm in asking. It sounds like your vet is very capable and that he/she's going to run the tests is a comfort.

NoJusticeJustUs Mon 25-Jul-11 22:26:13

Hiya, Springer has just had another huge fit, I was reading Eddies story when it happened (the irony ! ) thats 3 today :-(

He is now exhausted and very absent bless him.

OH and I have regrouped after todays wobble (thanks for helping with that) he really is the most lovely dog and we will do what it takes to get him through this, especially as you have shown us there can be light at the end of the tunnel.

OH has had to have a serious talk with our neighbour who witnessed a fit in the garden on saturday when I popped to the shops, we have had to convince her that he is ill, we are treating it and we are not poisoning/killing him !

Will keep you posted on vet visit, our vet is marvellous but awful as it sounds I am looking forward to a morning off from the dog so I can just relax with dds !

Does that make me a bad doggy mum ?

DogsBestFriend Mon 25-Jul-11 23:18:56

No, lovey, it's bloody worrying and stressful. smile

Do drop Dave an email (copy and paste what you've put here if it's easier and quicker), or if you post on the epileptic section of the forum he and other owners with epi dogs (there are a few of us on there, sadly, including a severely epileptic lady volunteer with an epi dog) who will advise as much as is humanly possible, give you ideas of what to ask your vet and he's also very well experienced to advise safely on how to deal with the fits and can be trusted to suggest action in the event of another fit. As I said, Dave chcks the forum frequently each day so you should get an answer quickly, if not, call him, he's very approachable and won't mind in the least. He and his DP run the rescue alone save for volunteer help so they prefer non urgent matters to be by email but of course if you need help or support fast, the phone's the thing - 01353 777399. They're always up with the dogs til at least 2am too, so don't worry if it's late when you call.

Has your vet told you to give another Epiphen when pooch has come round? Don't know what dose pooch is on - my circa 40 kilo GSD is on a ridiculously low dose of 30mg every 12 hours, which has kept him fit free for over 18 months now, so he could easily be given another dose if he fitted. I double dose him too if he's going to be in a potentially excitable environment, such as when I took him on a sponsored walk for the rescue with some of the other volunteers and their dogs. The other white long haired GSD I spoke of was on 150mg of Epiphen plus bromide, which worked for him although the bromide did cause his back legs to be a little unsteady (the alternative of course that he'd be more prone to fits).

If you haven't been advised to dose again following a fit it's worth calling your vet now and asking if it's advisable to do so.

Poor little mite, I do so hope that you can get on top of the monster that is epilepsy.

MotherJack Mon 25-Jul-11 23:32:58

Dave replied to one of my last posts there at around 3.15 in the morning, and then replied to another at just after 7 in the morning the same day. He must do some serious caffeine.

DogsBestFriend Mon 25-Jul-11 23:45:36

grin

Sounds par for the course, MotherJack! grin

His secrets are tea, cat-naps and lots of CAKE!

MotherJack Tue 26-Jul-11 00:06:29

The cake seems less of a secret.... he gets the urine well and truly extracted over that one! grin

I do hope you accept DBF's advice to contact Dave, NJJU. He really does know his stuff as I understand it... and I hope things calm down for your lurcher boy.

misdee Tue 26-Jul-11 07:58:33

am glad that you are getting some lovely support here.

i spent ages last night reading eddies story and fish's as well. make me well up both of them.

hope your boys epi gets under control soon.

NoJusticeJustUs Tue 26-Jul-11 14:43:43

Hiya, little update

Springer spent the morning at the vets, he had a huge fit on his way there and had several absences throughout the morning.

They took bloods before and after his meds and again before he came home and we should have the results in a day or two.

In the meantime they have uped his dosage of Ephipem to 180 twice a day and the sodium bromide they have left the same.

DBF - I asked about his diet, vet advised it is not safe to change it whilst on the sodium bromide. Also asked about gabapentin but the vet thinks because of the high doeses involved due to his size it may be unsustainable cost wise ( it is unfortunately a factor as his insurance only pays up to £4000 per incident) and once its finished we will have to sustain it for the rest of his life, so its really a last resort.

Thanks again for all your support, I will keep you posted

DogsBestFriend Tue 26-Jul-11 15:06:05

Oh goodness, poor, poor mite.

Gabapentin's cost shouldn't be too much of an issue - vet's prescription and buy online. I'll have a word about that, see what I can find out, it's something that's been raised before, give me a couple of hours.

At a guess the diet comments from the vet are wrt salt levels but I personally would be asking them to look into specific diets with me which will accomodate that AND cut out the preservatives, flavourings and colourings. Experience has proven time and again with 99% of the epi dogs I know (and I know lots, sadly) that a diet change very often makes a beneficial difference to an epi dog. (See that link on Eddie, who is on Pheno and Gabapentin and who went from whatever crap cheap cereal/additive filled complete food the pound fed him on to NatureDiet).

He's on a high dose of Pheno now, there isn't anywhere much else to go with that so I'd argue that something else must be done - and would personally press for Gabapentin for a start.

Will come back later and see what I can find out about the cheapest way of obtaining Gabapentin, see what you think.

And give Springer a hug from me please. smile

NoJusticeJustUs Tue 26-Jul-11 16:19:28

Thanks DBF will push vet regarding diet, springer has just had a lovely ten minutes playing with the hose ( his all time fave pastime) so I'll pass on your cuddle once he has dried off a little !!

DogsBestFriend Tue 26-Jul-11 23:37:37

I found some comments made to another MNer with an epi dog, whom she sadly lost (long story, with complications to her personal situation) here but which I hope gives you some things to consider/ask your vet and as promised gives an idea of prices for Gabapentin.

The pertinent part of it which I wanted to let you know about is from Rachel, the co-owner of the rescue I have been speaking of. In this owner's case the epi dog was a Collie cross GSD, so a fairly large dog probably on a par with your Springer. What Rachel had to say was this:

120mg [Pheno] twice a day is the same dose that Ruby SBT is on and she is 22kg. Beau the collie was on 150mg twice a day when he came in although he was a bit heavier but I would still not say that 120mg bd was a really high dose for a 20kg dog.

Most of our epi's have liver results between 250 and 400 without the vets worrying about it. The only one they are overly worried about is Aramis (GSD) who is over 1000.

Gabapentin is not stupidly expensive. I use www.chemistdirect.co.uk for ours. Dave will correct me if I am wrong but I would guess that for his size a starting dose for Kaiser [the OP's collie X GSD] might be something like 100mg three times a day which works out at 3 x 25p=75p a day or £22.50 a month. If that went up to 200mg three times a day that would be 6 x 25p a day or £45 a month. 300mg three times a day would be 3 x 47p=£1.41 a day or £42.30 a month.

I may be talking rollocks here but I'm just wondering.... would it be an idea, if the vet thinks that Gabapentin is suitable, for you to purchase that out of your own pocket each month and not through your insurance (if indeed you can) so leaving the insurance for the larger bills and, heaven forbid, anything daft pooch might do like breaking a leg?

IMHO that link indicates that Springer would benefit from Gabapentin and demonstates too that Dave and Rachel will do their best to help and advise you if you need it. I may be barking up the wrong tree (forgive the pun) and if so I apologise but I think that the thread is worth reading.

GlitterySkulls Wed 27-Jul-11 00:46:46

OP, my thoughts are with you, & i pray your poor springer gets a better shot at recovery than my kaiser did sad

NoJusticeJustUs Wed 27-Jul-11 09:44:26

Hi guys, Springer fitted again last night but has since rallied and this morning seems a little happier.

He is 31kgs DBF so pretty comparible in size, I love the idea of buying the meds on line and leaving the rest of the insurance money for blood tests etc. Its £4000 per incident so if he breaks his leg we're ok ! In the almost two years we've had him he has had five claims including the epilepsy ! He is a little accident prone !! We certainly get our monies worth from our insurance !

Glitteryskulls I am so sorry about your poor Kaiser, it just makes you feel so helpless doesn't it ? My vet assures me Springer is in no pain with the fits which is a comfort.

I have to leave him alone for a few hours today (hospital appointment) my normal dogsitter is on holiday, Im terrified of what I'll find when I get back.

I'd just like to say again the support and help ive had on here is amazing, thank you all so much, you really have made such a difference.

DogsBestFriend Wed 27-Jul-11 11:55:17

Bugger, I've a couple of animal welfare friends in Hampshire... had I known earlier I would have tried to find you someone to sit in with Springer or to have him in their home whilst you're at the hospital.

I hope you're okay too... it sounds like you're going through the mill atm. sad

NoJusticeJustUs Mon 15-Aug-11 14:30:48

Hey everyone, just thought I'd give you a little Springer update.

He is now stabilised on his new dose of meds, they have also increased his sodium bromide,

Last Thursday he went for his first proper walk in the forest, he loved it and ran around like his old self, it bought tears to my eyes.

So we are just playing it by ear and keeping our fingers crossed.

Thanks again for all your help and support, you all got me through a dark time xxx

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