Possible seizures unresponsive to treatment.

RE: Possible seizures unresponsive to treatment.

J G Wray — Wed, 22 Mar 2017 08:10:47 GMT

[quote user="Mark Lowrie"]This gluten free diet thing is all new to me so any pearls of wisdom on how best to achieve adherence is most welcome. Apparently stating to a client that your dog can eat the diet and nothing but the diet is not as simple a message to convey as I first thought...[/quote]

In my opinion, this is for the primary veterinary surgeon's practice to sort out and it's information, hearts and minds, testimonials and a large dose of nurse input.

Address what all clients really want to know which isn't actually diagnosis, but the four Ps:

[P]ain - Will my pet suffer?

[P]rognosis - What will happen?

[P]racticality - How do I treat?

[P]ayment - how much is all this going to cost?

On a [P]ractical note, talk to gastro-enterologists and there are a couple in the UK who think v hard about diet and put together a list of truly gluten free diets, commercial and home made. Then show the client how to read info on packaging to understand what gluten free looks like. Ask the client if they would like to hear from other clients managing the issue. Offer nurses input as points of contact and advice on diet management.

At all times make it clear what the purpose of the exercise is and re state it on a frequent basis.

Reward the owners through congratulation, our imprimatur is a valued thing and perhaps even validate their care through making them a source of testimonial.

Then do it all again and again.

RE: Possible seizures unresponsive to treatment.

Mark Lowrie — Tue, 21 Mar 2017 19:36:41 GMT

This gluten free diet thing is all new to me so any pearls of wisdom on how best to achieve adherence is most welcome. Apparently stating to a client that your dog can eat the diet and nothing but the diet is not as simple a message to convey as I first thought...

RE: Possible seizures unresponsive to treatment.

J G Wray — Tue, 21 Mar 2017 08:44:52 GMT

[quote user="Mark Lowrie"]This is a reasonable approach. However, I have been amazed at how people fail to be compliant to a gluten-free diet. Many owners return having religiously portioned the food and excluded other treats – yet dogs scavenge, or feel sick and eat grass etc. Therefore serology is not only useful in diagnosis but I find it even more helpful in measuring compliance. An owner will often say they are fully compliant but when the serology says they’re not then it is always interesting to find out where the discrepancy lies. This way we don’t tick ‘gluten-free diet’ off the list too soon when it would have otherwise worked.[/quote]

What do you do to improve owner compliance in terms of education, testimonials and ongoing support?

I ask because I checked with manufacturers of several commercial "gluten free" diets and they were clear that the manufacturing process could have residues from other production batches, which was honest of them, but not so helpful. The rest is stuff which form the everyday for primary clinicians.

RE: Possible seizures unresponsive to treatment.

Mark Lowrie — Tue, 21 Mar 2017 08:29:31 GMT

If you compare a video of a dog with a typical generalised tonic clonic seizure versus this dog's episode there are striking differences:

Maintain a normal consciousness despite having abnormal movement in all four legs
No progression to a typical generalised tonic-clonic seizure
Lack of a post-ictal phase even after episodes lasting hours
No autonomic signs

These are the main reasons for ruling out an epileptic seizure.

RE: Possible seizures unresponsive to treatment.

Mark Lowrie — Tue, 21 Mar 2017 08:26:47 GMT

This is a reasonable approach. However, I have been amazed at how people fail to be compliant to a gluten-free diet. Many owners return having religiously portioned the food and excluded other treats – yet dogs scavenge, or feel sick and eat grass etc. Therefore serology is not only useful in diagnosis but I find it even more helpful in measuring compliance. An owner will often say they are fully compliant but when the serology says they’re not then it is always interesting to find out where the discrepancy lies. This way we don’t tick ‘gluten-free diet’ off the list too soon when it would have otherwise worked.

RE: Possible seizures unresponsive to treatment.

Anthony Todd — Fri, 17 Mar 2017 12:09:14 GMT

[quote user="Mark Lowrie"]I think we are still some way from this. It is certainly not a standard approach in people yet. We also need to be cautious as starting a gluten free diet without confirming if it is serologically positive to gluten antibodies will render future testing useless. We are only aware of gluten causing CECS in Border terriers – no other breed or condition has been associated with gluten problems (either neurological or non-neurological) so although this may be the ‘tip of the iceberg’ I strongly suspect it is unlikely to be the cure for various ‘idiopathic’ ailments.[/quote]

What's so terrible in doing a gluten trial anyway?

Am I right in thinking it will be cheapish, harmless and possibly [no matter the reason or illogic or lack of tests] curative?

If it was me, or my dog, I'd just want to stop the problem and not worry too much about the ancillary science.

RE: Possible seizures unresponsive to treatment.

Aurelia Verdin — Fri, 17 Mar 2017 00:27:55 GMT

Many thanks Mark, that's very helpful.

RE: Possible seizures unresponsive to treatment.

janine redman — Thu, 16 Mar 2017 23:26:59 GMT

Hi Mark

what makes this a dyskinesia rather than an epileptiform seizure?

janine

RE: Possible seizures unresponsive to treatment.

Mark Lowrie — Thu, 16 Mar 2017 14:44:17 GMT

I think we are still some way from this. It is certainly not a standard approach in people yet. We also need to be cautious as starting a gluten free diet without confirming if it is serologically positive to gluten antibodies will render future testing useless. We are only aware of gluten causing CECS in Border terriers – no other breed or condition has been associated with gluten problems (either neurological or non-neurological) so although this may be the ‘tip of the iceberg’ I strongly suspect it is unlikely to be the cure for various ‘idiopathic’ ailments.

RE: Possible seizures unresponsive to treatment.

J G Wray — Wed, 15 Mar 2017 16:46:15 GMT

Are we yet at a point where dogs of any breed with idiopathic neurological disease manifested by dyskinesia might benefit from a gluten free trial? Are we at a point where dogs of any breed with idiopathic neurological disease manifested as seizure or seizure like activity might benefit from a gluten free trial?

RE: Possible seizures unresponsive to treatment.

Mark Lowrie — Wed, 15 Mar 2017 16:00:20 GMT

You are right, with Border terriers and CECS there is mounting evidence they have a gluten intolerance:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4895653/

https://www.ncbi.nlm.nih.gov/pubmed/27784836

And there is evidence in other breeds that fly-catching may be an unusual manifestation of a gastrointestinal condition:

https://www.ncbi.nlm.nih.gov/pubmed/23729825

RE: Possible seizures unresponsive to treatment.

J G Wray — Wed, 15 Mar 2017 09:19:20 GMT

Anecdote n=1 time

The World's most excellent Border Terrier (TWMEBT) started a peculiar fly catching "cherche l'etoile" and staring pattern of behaviour when v relaxed last summer. Soooo, I spoke to a gastro enterologist first obviously, having done bloods including BAST twice, with no significant findings. The gastro-entrologists have access to the purveyors of sledgehammer drugs - neurologists and a discussion followed resulting in a suggestion of a four month gluten free trial first. The WMEBT was given RCW Anallergenic and gluten free treats and the behaviour subsided. Then a routine food was given for three days and on the fourth the WMEBT became depressed, restless, groaning, whimpering, unresponsive to opiates with no other major clinical signs - the WMEBT's female owner got a bit distressed along the lines of "The WMEBT was perfectly all right until you changed his food back, I'm calling Michelle ( a divorce solicitor)...". There were no gastro enteric signs and appetite and thirst were normal. Bloods were normal again. At this time the neck extending signs were also absent. The signs of discomfort/distress resolved within 24 hours when put on to RCW Hypoallergenic diet.

The gastro-enterologists don't have coeliac blood tests yet and no one understand what mechanism might be involved, but what's to lose? It beats going down the full blown neuro exam and trial depressant medication route, at least in one case.

RE: Possible seizures unresponsive to treatment.

Mark Lowrie — Wed, 15 Mar 2017 08:36:44 GMT

This does look very similar to CECS but strictly speaking should call this a paroxysmal dyskinesia or movement disorder. Effectively this is the same thing but CECS is a type of movement disorder specific to Border terriers that also tend to show mild signs of gastrointestinal and/or skin disease. As this dog is neither a border terrier nor seems to have the ‘other’ signs then we classify this as a movement disorder. It is commonly recognised in Jack Russells and is reported here:

https://www.ncbi.nlm.nih.gov/pubmed/27240912

The summary is that this is a relatively benign condition and treatment options are limited. Those that exist tend to have undesirable side effects so I tend not to treat these patients and just reassure the owner that these episodes are benign and pain free. We also find that many self-resolve after several years and so it is possible this dog may ultimately grow out of them.

However, in summary, this is not a seizure and as such I would not worry about continuing anti-epileptic medication. It would be safe to stop this although in the case of phenobarbital I would taper the doses slowly by around 20-25% every 2-4 weeks until the dog is weaned completely from the medication. Really nice video!

RE: Possible seizures unresponsive to treatment.

Anthony Todd — Tue, 14 Mar 2017 15:17:42 GMT

[quote user="Aurelia Verdin"]Any other ideas that people have found useful for these cases in the past?[/quote]

Is Tegretol still used? Used to be recommended for "fly-catching" KC spaniels I seem to recall.

Seems to me that trialing various "antiepileptic" drugs may be the only way of hitting on the one that gives control with the minimum of side effects.

My suggestion of pheno may have been a sledgehammer to walnut approach?

RE: Possible seizures unresponsive to treatment.

Aurelia Verdin — Tue, 14 Mar 2017 06:58:18 GMT

https://www.dropbox.com/s/ljkss2q9zpkh2lb/cooper%20CECS.mp4?dl=0

This may work better, you shouldn't need a dropbox account to view, apparently...

RE: Possible seizures unresponsive to treatment.

Aurelia Verdin — Tue, 14 Mar 2017 06:36:01 GMT

Hopefully the link will work if you click on it, struggling to upload video. She filmed for 4mins before giving him diazepam, but so far has only managed to send me a 30sec clip.

From the O: The clip is the worst of it. Once he gets himself propped up he ticks along basically upright. Just drools a lot. This time he looked like he was coming round (managing to swallow etc) the went rigid again. That is what we were calling his 'cluster' seizures

To me this looks very like the CECS, but as I have only seen videos on you tube and never seen it in real life am happy to be corrected if anyone thinks differently.

So the plan now is to try gluten free diet as this seems to help some cases, and wean off the Pexion, give diazepam as needed.

Any other ideas that people have found useful for these cases in the past?

Thanks again.

RE: Possible seizures unresponsive to treatment.

Aurelia Verdin — Tue, 14 Mar 2017 06:32:41 GMT

Finally have a video!

www.vetsurgeon.org/.../cooper-CECS.zip

RE: Possible seizures unresponsive to treatment.

Aurelia Verdin — Fri, 10 Mar 2017 04:14:01 GMT

The CECS does seem like a possibility, we've looked for videos online, found one of a Lab which she says is similar to what her dog does, but all the other videos appear to be of mild episodes and what her dog is doing is a lot more severe, but def keeping it in mind.

For now she's going to do a BAST next week and keep hoping for video. I think next step will depend on BAST and interval to next episode...

Thanks again for the suggestions.

RE: Possible seizures unresponsive to treatment.

Anthony Todd — Thu, 09 Mar 2017 23:55:51 GMT

[quote user="Aurelia Verdin"]Can you get the Border Terrier syndrome in other dogs, as he really does not look as if there is any Border in there at all.[/quote]

This seems like a good place to start....

https://www.ufaw.org.uk/dogs/border-terrier-canine-epileptoid-cramping-syndrome

and this:

http://www.canineepilepsy.co.uk/cecs.html

RE: Possible seizures unresponsive to treatment.

Aurelia Verdin — Thu, 09 Mar 2017 23:17:52 GMT

Still trying to get a video, he has now not had a seizure for over a week...

The response to valium (from the owner's description) is not as good as I would normally expect, needing a higher dose and taking longer than I would normally anticipate, but I have not actually witnessed this myself.

The pheno was stopped or reduced when there were intolerable side effects and when the seizures had re-started and it did not appear to be helping, he then did well on KBr alone for several months.

The history is quite confusing and I did try to write it out as simply and straightforward as possible, but was having difficulty keeping track of the changes myself.

Can you get the Border Terrier syndrome in other dogs, as he really does not look as if there is any Border in there at all.

RE: Possible seizures unresponsive to treatment.

Anthony Todd — Thu, 09 Mar 2017 18:41:46 GMT

[quote user="Joyce Whitehead"]Anthony if you read the opening post carefully [/quote]

Sorry to return but, if you read the original post again you'll find that, in most changes, certainly with the pheno they reduced or stopped the dose, started something else and then repeat the stop and start of the various drugs over time.

So I don't think I was quite as stupid as I assumed, although sometimes it isn't totally clear if one drug was stopped and/or another added.

I'll summarise it so far if you like.

PS Search Border Cramping Syndrome, there's even a video. sounds a worthy avenue.

"The owner does not feel that he ever loses consciousness, even in a violent seizure she says that he follows her with his eyes and tries to move after her. So I am not sure if it is a full seizure."

particularly if you bear this in mind, and bearing in mind the good response to valium...

RE: Possible seizures unresponsive to treatment.

Rob Loxley — Thu, 09 Mar 2017 18:00:03 GMT

Once, a speaker at BSAVA said if things aren't responding then either your diagnosis is wrong (something other than epilepsy), your treatment is wrong (well you've tried all sensible things for epilepsy), or it's just a bad disease (and I suspect this may well be an epileptic refractory to treatment)

RE: Possible seizures unresponsive to treatment.

Emily Rainbow — Thu, 09 Mar 2017 17:39:55 GMT

I think a video is needed, of each type of episode and send to a neurologist to view. There's just something that doesn't add up as an epilepsy from reading your post.

RE: Possible seizures unresponsive to treatment.

Anthony Todd — Thu, 09 Mar 2017 15:43:25 GMT

[quote user="Joyce Whitehead"]Anthony if you read the opening post carefully[/quote]

Ah yes, sorry, again my memory is not what it never was, sorry.

[deleted it in full.....]

RE: Possible seizures unresponsive to treatment.

Joyce Whitehead — Thu, 09 Mar 2017 14:14:14 GMT

Anthony if you read the opening post carefully this dog was on pheno. Then pheno with KBr, then KBr alone, then added Pexion, then Pexion with pheno. Then gaba added. So the multiple therapy idea has been tried, several times. Maybe this explains the one star (and it wasn't me). I may have got some of those combos wrong but please just reread the original post.