# Spike's disease (cecs)



## Milhouse (May 24, 2017)

Hi. I'm new here and have come in search of someone who may have gone through what we are currently experiencing. We have a cavalier x poodle who is 3 years old and just been diagnosed with Spike's Disease (cecs). Our vet doesn't seem to know much about the illness and has given us some anti-convulsants to help. My feeling is that these won't help. He's also recommended Royal Canin Anallergenic food to help manage the condition. I have never heard anything good about Royal Canin, but I'll give it a try as I want to help my poor dog. Does anyone have any experience with this condition and how to manage it? I've heard raw food is the way to go, but my wife is only willing to try it as a last resort as it's "messy". Any help or advice is greatly welcome. 

Thank you


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## Sled dog hotel (Aug 11, 2010)

Milhouse said:


> Hi. I'm new here and have come in search of someone who may have gone through what we are currently experiencing. We have a cavalier x poodle who is 3 years old and just been diagnosed with Spike's Disease (cecs). Our vet doesn't seem to know much about the illness and has given us some anti-convulsants to help. My feeling is that these won't help. He's also recommended Royal Canin Anallergenic food to help manage the condition. I have never heard anything good about Royal Canin, but I'll give it a try as I want to help my poor dog. Does anyone have any experience with this condition and how to manage it? I've heard raw food is the way to go, but my wife is only willing to try it as a last resort as it's "messy". Any help or advice is greatly welcome.
> 
> Thank you


I know Spikes disease was originally called so after a border terrier called Spike who was one of the first if not the first dog for it to be recognised in and identified as a condition, more recently called canine epiletoid cramping syndrome it is a genetic problem found in Border terriers it has been more recently to be found too In Lakeland terriers and possibly they think more recently in Welsh Terriers too. There is also something called scottie cramp something similar found in Scottish terriers and cairns too I believe again it has a genetic tendency in these breeds.

With true spikes disease in Border terriers diet has been found to help in a lot of cases its been found in true spikes disease in Border terriers that avoiding Gluten and other things in food can help manage the condition. Spikes owner has a really good website all about spike the condition and how diet can help see link

http://www.border-terriers.nl/spikes-disease/efood.html

There is also lots of information on a Lakeland terrier website about spikes disease and according to that more recently fish based food seems to have been identified as a trigger too see link.
https://lakelandterriertopics.wordpress.com/health-issues/spikes-disease/

Having said all this there is also Paroxysmal Dyskenisia which a group classification or name for a group of Movement Disorders. and there seems to be selected breed specific Paroxysmal disorders that come under this heading. I noticed you say he is a Cavalier cross Poodle in the cavalier the breed specific disorder is called episodic falling syndrome. Looking at treatments for the various types of PD and the different breed specific ones different things/treatment seems to work on different ones, with true spikes disease in borders again it says that Gluten free and other things removed from the diet is the best management for that form where as Episodic falling syndrome in Cavaliers seems to respond to something called Acetazolomide which most dogs respond too although difficult cases that don't respond well usually do to an add on treatment in addition to the Acetazolamide called Clonazepam. You can read about the various types of Paroxysmal Dyskensia/Movement diseases and the various different breed specific types on this link below, its by a veterinary specialists information sheet for pet owners. It explains all the conditions and types, and diagnosis and treatment and which treatments have been found to treat what types the best.

http://vetspecialists.co.uk/factsheets/Neurology_Facts/Movement_Disorders.html

You don't say if you have been to a specialists to get the diagnosis just that your vet doesn't seem to know much about the spikes disease, but if you haven't been given a firm diagnosis by a specialist then that may even be your best bet to ask for a referral, because it seems unless you have had an exact diagnosis then you may not possibly be getting the best or even possibly the correct treatment.

There is lots more information to be had from reputable sources on the internet about the individual specific conditions too, but the above should hopefully at least be a good start for more information and research. Hope it will be of some help.


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## Milhouse (May 24, 2017)

That is brilliant. I'll have a look through all those pages this weekend. We've not been referred to a specialist. The symptoms are exactly what's described as Spike's disease though. The vet had come across it before but you're right, it may be worth trying a specialist. We've tried the gluten free diet to no avail, but that may be called s it was fish based and you state that's been shown to be a trigger. I really appreciate the time you took to give us some advice. Thank you.


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## grumpy goby (Jan 18, 2012)

Hi - buster shows symptoms of CECS (lakeland terrier) but never been properly diagnosed as our vet was pushing towards neurological testing which I felt was unnecessary, and his behaviour matched CECS very closely so i opted to take the dietry route before that one! We actually came across it having been pointed in that direction by @Sled dog hotel too!

He would convulse and act very strangely at seemingly random intervals - and we did manage to reduce this dramatically through diet - but found chicken or fish based food to be least effective for some reason! Raw was perfect tbh but we just couldnt find the feezer space!
(Busters episodes involve him being unable to stand, and crawls on his belly in a very slow and uneven manner... lots of whining and panting, very subdued before and after, and typically last for 15-20mins)

There is a yahoo group which is good, (but they do push raw alot). Buster also thrived on Millies Wolfheart!


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## lullabydream (Jun 25, 2013)

My old dog Jasper who was a JRT was suspected by our vet as having spikes disease. There wasn't as much research in to it then, and really was just border terrier...but it was odd that he fitted all the symptoms, but my vet was really convinced he was an oddity. Especially as he had been studying it for another client, and I walk in saying the exact same things. At first it was, maybe its not then when I came back we both looked at printed information and it was no, that's him alright.

I can't remember much on what I was feeding diet front, but excitement was a massive trigger for him.

Sorry I can't be more help.


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## Milhouse (May 24, 2017)

grumpy goby said:


> Hi - buster shows symptoms of CECS (lakeland terrier) but never been properly diagnosed as our vet was pushing towards neurological testing which I felt was unnecessary, and his behaviour matched CECS very closely so i opted to take the dietry route before that one! We actually came across it having been pointed in that direction by @Sled dog hotel too!
> 
> He would convulse and act very strangely at seemingly random intervals - and we did manage to reduce this dramatically through diet - but found chicken or fish based food to be least effective for some reason! Raw was perfect tbh but we just couldnt find the feezer space!
> (Busters episodes involve him being unable to stand, and crawls on his belly in a very slow and uneven manner... lots of whining and panting, very subdued before and after, and typically last for 15-20mins)
> ...


Thanks for your advice. I think her dry food is a trigger as she's got worse since switching. We use a fish based grain free and tried a different brand which made the episodes more frequent. Looks like the fish may be the problem and we might just have to go trial and error till we find something more suitable. We appreciate the help.


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## Milhouse (May 24, 2017)

lullabydream said:


> My old dog Jasper who was a JRT was suspected by our vet as having spikes disease. There wasn't as much research in to it then, and really was just border terrier...but it was odd that he fitted all the symptoms, but my vet was really convinced he was an oddity. Especially as he had been studying it for another client, and I walk in saying the exact same things. At first it was, maybe its not then when I came back we both looked at printed information and it was no, that's him alright.
> 
> I can't remember much on what I was feeding diet front, but excitement was a massive trigger for him.
> 
> Sorry I can't be more help.


We appreciate any help from people who may have experience with it. It's a bit distressing to find your dog is ill with something incurable and very little info on. It helps just to know you're not alone. Thank you.


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## Sled dog hotel (Aug 11, 2010)

Milhouse said:


> That is brilliant. I'll have a look through all those pages this weekend. We've not been referred to a specialist. The symptoms are exactly what's described as Spike's disease though. The vet had come across it before but you're right, it may be worth trying a specialist. We've tried the gluten free diet to no avail, but that may be called s it was fish based and you state that's been shown to be a trigger. I really appreciate the time you took to give us some advice. Thank you.


Your very welcome, hope you can find something that works, would be nice to hear how you are getting on too.


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## Sled dog hotel (Aug 11, 2010)

grumpy goby said:


> Hi - buster shows symptoms of CECS (lakeland terrier) but never been properly diagnosed as our vet was pushing towards neurological testing which I felt was unnecessary, and his behaviour matched CECS very closely so i opted to take the dietry route before that one! We actually came across it having been pointed in that direction by @Sled dog hotel too!
> 
> He would convulse and act very strangely at seemingly random intervals - and we did manage to reduce this dramatically through diet - but found chicken or fish based food to be least effective for some reason! Raw was perfect tbh but we just couldnt find the feezer space!
> (Busters episodes involve him being unable to stand, and crawls on his belly in a very slow and uneven manner... lots of whining and panting, very subdued before and after, and typically last for 15-20mins)
> ...


According to the Lakeland terrier specific link I found above, it has updated info on spikes and it has been found that fish based food is a trigger according to that. So that may explain why he didn't do well on the fish at least.


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## Leanne77 (Oct 18, 2011)

I dont have experience of Spikes Disease, but did quite a bit of reading up about it when I was looking into why my dog was having these strange episodes. He has since been diagnosed (well, semi diagnosed as the specialist diagnosed and then retracted her diagnosis) with idiopathic epilepsy. I was a member of a FB group for a while but found that because my dog wasnt a terrier, or even a small breed of dog, nobody was that interested.

https://www.facebook.com/groups/2877304097/


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## lullabydream (Jun 25, 2013)

Food excitement can be a trigger...and not just the food if that makes sense...or we found that with our dog who got really excited for meals...

So its hard to distinguish the two...all my dogs have always and still do love meal times, and I think excitement for them is normal. So when we were looking at diets...things have moved on but sensitive diets were suggested...but triggers were often excitement. Its really had to judge correlation and causes.


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## Milhouse (May 24, 2017)

Sled dog hotel said:


> Your very welcome, hope you can find something that works, would be nice to hear how you are getting on too.


I'll try to keep posting updates on what happens. It may help someone else who goes through this if we can find something that works. Info on this is hard to come by and is mainly aimed at terriers. They may have slightly different triggers or responses to my dog which is a cavalier poodle cross.


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## Milhouse (May 24, 2017)

Sled dog hotel said:


> According to the Lakeland terrier specific link I found above, it has updated info on spikes and it has been found that fish based food is a trigger according to that. So that may explain why he didn't do well on the fish at least.


It might be what's been puzzling us about the food. They were already gluten free anyway but we swapped to one that was rice free too as that's been suggested as a possible trigger. Then she got worse. Possibly higher content of fish. I think with the help I've got from here and the chart on food quality in the forum, I'll have some good alternative choices to trial in the future as I'm not keeping her on medication long term. There are too many health risks from it.


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## Milhouse (May 24, 2017)

lullabydream said:


> Food excitement can be a trigger...and not just the food if that makes sense...or we found that with our dog who got really excited for meals...
> 
> So its hard to distinguish the two...all my dogs have always and still do love meal times, and I think excitement for them is normal. So when we were looking at diets...things have moved on but sensitive diets were suggested...but triggers were often excitement. Its really had to judge correlation and causes.


I'm pretty sure she's not triggered by excitement. Most episodes happen during the night or when she's at rest. If it was excitement based she'd have one whenever she saw a tennis ball. She is OBSESSED with fetch. I'll keep it in mind though in case that is a cause for some. Thank you.


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## Milhouse (May 24, 2017)

Leanne77 said:


> I dont have experience of Spikes Disease, but did quite a bit of reading up about it when I was looking into why my dog was having these strange episodes. He has since been diagnosed (well, semi diagnosed as the specialist diagnosed and then retracted her diagnosis) with idiopathic epilepsy. I was a member of a FB group for a while but found that because my dog wasnt a terrier, or even a small breed of dog, nobody was that interested.
> 
> https://www.facebook.com/groups/2877304097/


That's not very considerate of them. Just because we don't have border terrier dogs doesn't mean ours don't still suffer with the condition. I'll have a look in case they've changed their attitude and are more friendly. Thank you.


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## Milhouse (May 24, 2017)

Sled dog hotel said:


> According to the Lakeland terrier specific link I found above, it has updated info on spikes and it has been found that fish based food is a trigger according to that. So that may explain why he didn't do well on the fish at least.


After a week of having episodes every day since going on meds, we decided to try changing the food (we'd stuck with the old to not confuse what was having what effect). We kept on the same brand and changed flavour from fish to lamb. We have had one in three days since then. That may have been triggered by some meat she ate. I think chicken can sometimes trigger an episode too. She's had a few after eating chicken. Your tip of fish based food might be paying off. It's still early days in this trial though. Thank you.


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## Sled dog hotel (Aug 11, 2010)

Milhouse said:


> After a week of having episodes every day since going on meds, we decided to try changing the food (we'd stuck with the old to not confuse what was having what effect). We kept on the same brand and changed flavour from fish to lamb. We have had one in three days since then. That may have been triggered by some meat she ate. I think chicken can sometimes trigger an episode too. She's had a few after eating chicken. Your tip of fish based food might be paying off. It's still early days in this trial though. Thank you.


So glad that it seems to be making a difference hope it continues, its a very promising start anyway.


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## Leanne77 (Oct 18, 2011)

I recently attended a holistic seminar where, amongst others, were Nick Thompson and Vince the Vet as speakers. Now, tbh, I didnt take that much notice because they were talking about fish based food in reference to cats (cant even remember which vet it was!) However, I did pick up that there had been a huge increase of cats dying with kidney related issues and when it was investigated further it was attributed to them being fed a fish based food on a daily basis and the recommendation was that a fish based food should only be fed a couple of times a week, and that applied to dogs also. I cant even recall what it was about fish which caused the deaths but I think you're wise to switch to a different protein.


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## Milhouse (May 24, 2017)

Leanne77 said:


> I recently attended a holistic seminar where, amongst others, were Nick Thompson and Vince the Vet as speakers. Now, tbh, I didnt take that much notice because they were talking about fish based food in reference to cats (cant even remember which vet it was!) However, I did pick up that there had been a huge increase of cats dying with kidney related issues and when it was investigated further it was attributed to them being fed a fish based food on a daily basis and the recommendation was that a fish based food should only be fed a couple of times a week, and that applied to dogs also. I cant even recall what it was about fish which caused the deaths but I think you're wise to switch to a different protein.


Well she won't be getting fish based food anytime soon anyway. Thanks for the info though. That's pretty concerning to hear it's having such an effect on cats. I wonder if it's mercury in the fish that does it? I guess small levels build up over time and could have an effect.


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## Sled dog hotel (Aug 11, 2010)

Leanne77 said:


> I recently attended a holistic seminar where, amongst others, were Nick Thompson and Vince the Vet as speakers. Now, tbh, I didnt take that much notice because they were talking about fish based food in reference to cats (cant even remember which vet it was!) However, I did pick up that there had been a huge increase of cats dying with kidney related issues and when it was investigated further it was attributed to them being fed a fish based food on a daily basis and the recommendation was that a fish based food should only be fed a couple of times a week, and that applied to dogs also. I cant even recall what it was about fish which caused the deaths but I think you're wise to switch to a different protein.


The problem with fish in food that is causing problems in cats was on the last episode of trust me I'm a vet too. There was a study done at I think Nottingham university, and it was found that in cats who had become ill with from memory some kind of mystery illness had kidney damage and one thing they had in common was that there were high levels of arsenic in the kidneys. The only way that they could have gotten the high levels was either through diet and or water. Water can contain apparently very low levels, so they assumed it must be diet. Arsenic can be found in fish and in some cases rice. They tested a lot of various different cat foods that were fish or high in fish content and it was found to be the fish was the issue.
Occasional feeding they said is fine but in cats who are fed continuously on fish or fed a lot and very regularly it can cause problems and the arsenic can build up in the kidneys, and fish is not only in cat food but dog food too. Not only this apparently when you see dog and cat food which says with beef, chicken etc etc, they only legally have to put something like 4% of that meat in it to state it as with whatever meat, and a lot of the time a lot of fish and fish derivatives are in the food too. So the moral of the story seems to be whatever food you buy literally read the small print that lists exactly what is in it.

The series Trust me I'm a vet is still on BBC I player this was in episode 3 I think, but there was lots of other interesting things in the series and some eye openers, so if interested its worth a watch while still on I player.


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## Milhouse (May 24, 2017)

Sled dog hotel said:


> The problem with fish in food that is causing problems in cats was on the last episode of trust me I'm a vet too. There was a study done at I think Nottingham university, and it was found that in cats who had become ill with from memory some kind of mystery illness had kidney damage and one thing they had in common was that there were high levels of arsenic in the kidneys. The only way that they could have gotten the high levels was either through diet and or water. Water can contain apparently very low levels, so they assumed it must be diet. Arsenic can be found in fish and in some cases rice. They tested a lot of various different cat foods that were fish or high in fish content and it was found to be the fish was the issue.
> Occasional feeding they said is fine but in cats who are fed continuously on fish or fed a lot and very regularly it can cause problems and the arsenic can build up in the kidneys, and fish is not only in cat food but dog food too. Not only this apparently when you see dog and cat food which says with beef, chicken etc etc, they only legally have to put something like 4% of that meat in it to state it as with whatever meat, and a lot of the time a lot of fish and fish derivatives are in the food too. So the moral of the story seems to be whatever food you buy literally read the small print that lists exactly what is in it.
> 
> The series Trust me I'm a vet is still on BBC I player this was in episode 3 I think, but there was lots of other interesting things in the series and some eye openers, so if interested its worth a watch while still on I player.


I noticed the issue of other meats being snuck into food. I bought some gluten free lamb treats and saw that it had a higher percentage of chicken than lamb. Chicken was something I was trying to avoid too. Once you start investing what is in dog food you open Pandora's box. If it wasn't for my wife being stubborn about raw food then I'd make my own.


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## Sled dog hotel (Aug 11, 2010)

Milhouse said:


> I noticed the issue of other meats being snuck into food. I bought some gluten free lamb treats and saw that it had a higher percentage of chicken than lamb. Chicken was something I was trying to avoid too. Once you start investing what is in dog food you open Pandora's box. If it wasn't for my wife being stubborn about raw food then I'd make my own.


You can get commercial raw diets, natures menu do a good range of food, frozed raw, tinned, pouches and even dried, they do single protein ones too and grain free
have you had a look at their ranges.

https://www.naturesmenu.co.uk/

Only other thing would be perhaps to make your own up. there is a healthy adult diet below, that you can even just throw all the ingredients into a crock pot/slow cooker,

http://www.canine-epilepsy-guardian-angels.com/healthy_diet.htm

http://www.canine-epilepsy-guardian-angels.com/supplements.html

Its from a canine epilepsy and seizure website because its been found even with normal epilepsy and seizuring dogs that diet can cause seizures in some of them,
even the neurologist I went to see when one of mine was seizuring hypo allergenic diets can help some dogs. My ones seizures in the end turned out to be hypo thyroid too low thyroid hormones, since having the replacement she never had any more.


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## Leanne77 (Oct 18, 2011)

Sled dog hotel said:


> The problem with fish in food that is causing problems in cats was on the last episode of trust me I'm a vet too. There was a study done at I think Nottingham university, and it was found that in cats who had become ill with from memory some kind of mystery illness had kidney damage and one thing they had in common was that there were high levels of arsenic in the kidneys. The only way that they could have gotten the high levels was either through diet and or water. Water can contain apparently very low levels, so they assumed it must be diet. Arsenic can be found in fish and in some cases rice. They tested a lot of various different cat foods that were fish or high in fish content and it was found to be the fish was the issue.
> Occasional feeding they said is fine but in cats who are fed continuously on fish or fed a lot and very regularly it can cause problems and the arsenic can build up in the kidneys, and fish is not only in cat food but dog food too. Not only this apparently when you see dog and cat food which says with beef, chicken etc etc, they only legally have to put something like 4% of that meat in it to state it as with whatever meat, and a lot of the time a lot of fish and fish derivatives are in the food too. So the moral of the story seems to be whatever food you buy literally read the small print that lists exactly what is in it.
> 
> The series Trust me I'm a vet is still on BBC I player this was in episode 3 I think, but there was lots of other interesting things in the series and some eye openers, so if interested its worth a watch while still on I player.


Thats actually where I saw the article, I didnt hear about it at a holistic seminar at all! What an idiot I am lol! At least the OP can get the proper info then rather than some half assed explanation on my part!


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## Sled dog hotel (Aug 11, 2010)

Leanne77 said:


> Thats actually where I saw the article, I didnt hear about it at a holistic seminar at all! What an idiot I am lol! At least the OP can get the proper info then rather than some half assed explanation on my part!


I wouldn't worry I'm often at the stage where something rings a bell and I think Ive read about that or heard about that, and for the life of me cant remember where and all the facts and info, then I have to recheck things. It was probably because I only very recently watched it on I player.


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## Milhouse (May 24, 2017)

Leanne77 said:


> Thats actually where I saw the article, I didnt hear about it at a holistic seminar at all! What an idiot I am lol! At least the OP can get the proper info then rather than some half assed explanation on my part!


A half assed explanation is better than none. At least I can take the info provided and research it. I wouldn't take it on face value and blindly follow it without some back up source. It's nice that people have been so helpful and willing to share their information and experiences.


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## Milhouse (May 24, 2017)

Sled dog hotel said:


> You can get commercial raw diets, natures menu do a good range of food, frozed raw, tinned, pouches and even dried, they do single protein ones too and grain free
> have you had a look at their ranges.
> 
> https://www.naturesmenu.co.uk/
> ...


I'll look into them. I've ordered some food from Millies Wolfheart as another user suggested it and their dog had been free from episodes for 6 months on it. With all your help I have plenty of options for dietary control of the condition and attempt to keep her off meds. I'm hoping I can take her off the meds on the next visit to the vets in two weeks.


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## Milhouse (May 24, 2017)

Another day without an episode and she's also seeming a lot brighter. The slightly odd behaviour she had been showing recently has abated too which is good. She had been reluctant to go on walks till a few days ago.


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## Sled dog hotel (Aug 11, 2010)

Milhouse said:


> Another day without an episode and she's also seeming a lot brighter. The slightly odd behaviour she had been showing recently has abated too which is good. She had been reluctant to go on walks till a few days ago.


Excellent news. Hope this means you have cracked it and are not going to need medication and as literature says, diet alone is the best management.


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## Milhouse (May 24, 2017)

Just an update for anyone who has helped and anyone who may be seeking more information. We've gone nearly 2 weeks without an episode (as far as we know). Since taking our dog off fish based food she markedly improved. A great reduction in episodes straight after the change. We also tried Royal Canin Anallergenic food. This also worked but did not agree with our dog. She ended up doing very small and rock hard stools. The vet agreed that it doesn't sit well with some dogs. The James Wellbeloved grain free turkey and lamb based varieties are what she is on and it is working well. We're also taking her off the Epiphen slowly as the vet also agreed that it wasn't helping her. A big thank you to everyone who helped and had kind words of support. Let's hope it keeps up.


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## Sled dog hotel (Aug 11, 2010)

Milhouse said:


> Just an update for anyone who has helped and anyone who may be seeking more information. We've gone nearly 2 weeks without an episode (as far as we know). Since taking our dog off fish based food she markedly improved. A great reduction in episodes straight after the change. We also tried Royal Canin Anallergenic food. This also worked but did not agree with our dog. She ended up doing very small and rock hard stools. The vet agreed that it doesn't sit well with some dogs. The James Wellbeloved grain free turkey and lamb based varieties are what she is on and it is working well. We're also taking her off the Epiphen slowly as the vet also agreed that it wasn't helping her. A big thank you to everyone who helped and had kind words of support. Let's hope it keeps up.


So far so good then, hoping that you have cracked it with the diet alone and she can now also come of the meds, if she can that's even better news!! Long may it continue. Thanks for updating many people don't, so its always nice to get an update, and hopefully your thread will also help others too.


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## Milhouse (May 24, 2017)

Sled dog hotel said:


> So far so good then, hoping that you have cracked it with the diet alone and she can now also come of the meds, if she can that's even better news!! Long may it continue. Thanks for updating many people don't, so its always nice to get an update, and hopefully your thread will also help others too.


That's all I can hope. There's not much known and information isn't easy to come across. Not even vets know much. Fingers crossed another person in need might find this info helpful.


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