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Help and advice , please help.

ann

ann

Well-known member
Ellie10, was diagnosed with SM about 3 years ago. She was put on Pregabalin and Omoprozole . Two years ago she had surgery for a luxating patella and crutia ligament , she got over the op wonderfully......
Over the three years Ellie has had the usual symptoms that go with SM....the head bobbing, eye blinking etc etc, but generally controlled with her tablets......
The last few weeks I have noticed she has been quieter and also been panting a lot.
I took her to the vet, to check her slight heart murmur wasn't getting worse.....it wasn't......and the vet said it was probably her SM getting slightly worse.
Then on Tuesday she had a Seizure, lasting about 7 mins. The vet has said she is almost certain it is her SM getting worse, and that if the seizures continue, we need to think about what is best for Ellie.
I feel beside myself with worry. She hasn't had another fit, but she is panting a lot and has gone quieter and more unsteady especially when she is sitting down.
I want what's best for Ellie, but I don't thing it fair to put her through more tests.
Sorry for blabbing on, but I am sat here in tears, I love my girl so much........
 
Hello Ann

I'm so sorry to read about about Ellie. Its the most terrible thing to have to contemplate isn't it? My biggest fear when Leo was ill was I would have to make the decision to have to have him pts.
I hoped I would make the right choice for him as I loved him so much.
The advice that I was given was when the bad days outweigh the good you have to seriously consider it.
I'm sure others will have more advice for you than me....take care and hug Ellie as much (and gently) as you can.

Mel xx
 
Having had a Cavalier with SM myself in the past I do understand how worried and anxious you must be.

I found that seeing the local all rounder vet was fine for most ailments and for repeat or slightly altered prescriptions, however, SM is both complex and progressive so in your shoes I would ask for a referral to a neurologist in your area experienced in dealing with SM, who will be able to consider what stage Ellie has reached and decide which of the many combinations of medicines is appropriate for her now.

I see that you are worried about having more tests, but I am sure that a good and experienced neurologist will be able to examine Ellie in the surgery before deciding what is best for her.

Please stop worrying. Worry never solved anything and our Cavaliers usually know only too well how we are feeling, so try to stay as positive and supportive as you can.
 
I would second Flo's advice to see a neurologist - there may well be a good one experienced with CM/SM at Liverpool University Vet School (some are experts in other ailments and a bit clueless about CM/SM - so ask around!). Chestergates Referral Hospital near Chester is another possibility. Panting is usually a sign of pain, so Ellie almost certainly needs a look at her medication - this is normal for dogs with CM/SM, which is a progressive disease. Dogs are often affected by changes in air pressure - and it has been going up and down like a rollercoaster lately! Many of our dogs have been struggling as a result. They can often be helped by the addition of a non-steroid anti-inflammatory drug such as metacam, to be given as added pain relief on their bad days. There are still several options available for medication - if you haven't seen it already, have a look at Clare Rusbridge's treatment algorithm (http://www.veterinary-neurologist.co.uk/resources/treatment_-algorthim_-2013-1.jpg) and discuss it with your vet when you ask for a referral to a neurologist. If nothing else helps Ellie, steroids can be effective - used with caution because of long-term side effects, but this would be less of a worry with a 10-year-old.

As you will see from Clare's algorithm, there are other medications available that may be able to make Ellie more comfortable, and hopefully you will have her with you for some time to come. But talk to an expert - your GP vet can't be expert in all the 300 plus dog ailments he may be asked to treat! Ellie's panting may not be CM/SM related at all - a friend's older Cavalier with CM/SM was doing this and was actually diagnosed with (and successfully treated for) acute pancreatitis! And a comparatively harmless vestibular episode can look like a seizure - so there are other possibilities. A neurologist almost certainly won't do tests on Ellie, beyond perhaps some gentle manipulation of neck and legs; it would be a great help if you could video her, especially any panting, scratching, wobbly episodes.

There are of course occasions when a dog with CM/SM has to be put to sleep because its symptoms get beyond control. But I think it is true to say that most of them die of something else! So do explore a change in medication and a discussion with a neurologist, and hopefully Ellie can be made more comfortable.

I'm on my fourth Cavalier with CM/SM, and you need to go on fighting for them! So :xfngr: for Ellie - let us know how she gets on.

Kate and Ruby :hug:
 
Thank you everyone for the caring advice, it really does help.
Ellie had her MRI scan at Chestergates, a vet called Luca treated her, so I am thinking maybe I could email him and also send him some Vidio clips of Ellie....It is quite a journey from where we live, especially as I am disabled, but seeing as she was scanned there, it has given me hope.
Ellie isn't panting all day, it's usually when she has eaten at around 4pm and she is excited......
She is eating well and still enjoys her walks, but has started to pant in the car.......and she used to just fall asleep in the car..
But she is defiantly getting more unsteady, especially when she is sitting, she just tumbles over sometimes, and she is very jerky and head bobbing....eye twitching too.
Usually when she is in pain, the panting is different and she licks her lips and wants to sit close to me....I have tramadol to give her then.....but these symptoms are different.
anyway I am rambling again......thank you all for listening and the good advise......x
 
The jerking and head bobbing is much more likely to be myoclonus, which is very common in older Cavaliers. A neurologist would recognise it. Unless it causes them obvious distress, there is no need for medication - one of my younger Cavaliers (Aled) was distressed by it (like Ellie, tended to fall over) but it was easily controlled by a drug called Levetiracetum. Myoclonus is caused by tiny electric shocks in the underneath of the brain that momentarily interrupt the neurons, causing the jerks. If you look at the www.CavalierHealth.org website (a mine of useful information about Cavalier diseases) there is information about myoclonus. But it is nothing to do with Ellie's CM/SM. The eye twitching might be myoclonus related but could be CM/SM related, since it can be a sign of sensitivity to light, and can (but doesn't always) signify a headache. The trouble with CM/SM is that so many of its possible symptoms can also be symptoms of other things!

As far as the panting is concerned, it might be worth asking your vet to do a simple test for pancreatitis (sorry, more tests!) - my friend's Cavalier just lay and panted, in discomfort rather than severe pain, but did eventually have a very painful flare up, which was successfully treated and she is much better now - she's 10 years old as well; pancreatitis is very common in Cavaliers and if allowed to get to the acute stage can be life-threatening. Unfortunately the test is not always conclusive. Chronic (as opposed to acute) pancreatitis can be more or less controlled by a low fat diet, since it is the inability of the damaged pancreas to process fat in the body that causes the problems.

I have known other people who have been to Luca and he seems good, so I hope you will be able to contact him again, even if you can't get over to see him. My Oliver (who died in 2015 aged 13) had his scans at Chestergates and was cared for by one of their neurologists, but it's a bit of a pain to get to by public transport - I came by train from Coventry and used to get off at the nearest station and then get a taxi, and it took all day! It would definitely be worth phoning or emailing Luca for advice - I find most neurologists are very generous with their time for past patients on the phone or by email, and have a remarkable memory for dogs they have treated!

Kate and Ruby (8-year-old rescue with CM/SM and a very noisy bark!:lol: - the laugh is for the bark, not for the SM!)
 
Thank you Kate, such good information......
On ..looking on the Chestergates web site 1 Carnt see Lucas name, so it looks like he isn't there anymore. I will phone them on Monday and explain things and see if I can get to chat to someone. Over the weekend I will take some Vidio clips of Ellie. They may suggest my own vet taking some blood tests...
Ellie is also on Loxicom for arthritis.
She has scratched at the carpet a lot recently, and I do know that's a sign of pain.
I am very grateful for all the help I am getting, and feeling more positive .... Thank you
 
This is part of what Cavalier Health has on myoclonus (they provide very useful summaries of research):

In a September 2015 article, the International Veterinary Epilepsy Task Force stated:
"Older Cavalier King Charles spaniels (>5 years old) have a high prevalence of myoclonus, which manifests most commonly as a brief jerking of the head and forelimbs when the dog is standing or sitting. Initially the syndrome is relatively benign but can be progressive with affected dogs suffering frequent jerks which may interfere with function, for example cause the dog to fall or stumble. The syndrome can be confused with focal epileptic seizures [my emphasis] but generally does not respond to AEDs [antiepileptic drugs] licenced for dogs although may respond to levetiracetam."

(This is me again, I can't get back to the margin!) Looking at the info on the staff at Chestergates, it doesn't look as if they have a neurologist any more. I did some googling and found Luca (Luca Motta) has moved to North West Veterinary Specialists in Sutton Weaver in Cheshire. If you wanted to contact him you could google them for contact numbers etc. I've got a video of my friend's Jemima panting but can't attach it here - if you want to see it, message me your email address and I might be able to get it to you as an attachment (I'm totally hopeless about photos here!)

Kate and Ruby


​
 
I have phoned Chestergates this morning and explained briefly about Ellie, they have advised me to send an email to the neurologist, who they have said would read her case notes and hopefully be able to offer some advice, or maybe get in touch with my vet to discuss things.
Thanks to the help I am getting here, I at least feel as though I am doing something to try and help Ellie.
I am so thankful she is insured at the top level......
 
How are you and Ellie getting on, Ann? I hope you are getting some answers!

Kate and Ruby :hug:
 
I heard from Chestergates, the neurologist wasn't willing to give me any advise ,because it was over three months since Ellie was there. They did say that he would phone my vet and have a chat with her, but as yet I haven't heard anything.
Ellie hasn't had another seizure, and for now she is doing ok....eating well and enjoying her daily walks.
If the seizures return, or she generally declines, I will seriously think of taking her back to Chestergates.......My hope was that they could perhaps suggest altering her medication without the stress of taking her all that way, but I should have known that wouldn't happen. I sent a Vidio clip of Ellie's head bobbing and facial twitches and described how she toppled over sometimes when she was sitting down.... Maybe he will contact my vet, but somehow I doubt it.
Thank you for asking Kate...
 
Could you not contact Luca - after all he was the one who treated Ellie originally and would remember her (I gave you his current address on an earlier post)? If only for someone to say that her twitching is myoclonus and then your vet can prescribe levetiracetam, which would deal with one problem and make Ellie more comfortable. If you're going to pay for another consultation, would Liverpool University be nearer? Anyway, I'm glad Ellie's doing OK and enjoying life.

Kate and Ruby
 
I will contact Luca, the reason I tried Chestergates first was because her X-rays will be there . If he insists on seeing her, it would be easier for us to get there. I wonder why my vet didn't suspect she has myoclonus , she thinks it's part of her SM......I do think she has it, it fits all the description of it.
 
I have been in touch with Luca, who has been amazing with his help and advice.
I emailed him with all the information about Ellie, and also sent him a Vidio clip of her when she was having a head jerking attack......He emailed me back and asked my permission to pass the clip around some of the other neurologists in the practice....They are in aggrement that Ellie has not got Myoclonus activity, but that she is having Focal seizures.......
Luca has said, if the seizures are getting progressively worse and causing distress, that I should think about putting her on Phenobarbitone......Something I will need to discuss with my own vet, as apparently it has side affects.
He also said I should think about her having another MRI scan, in the light of her recent seizure...But he fully understood if I didn't want to put her through that.....
Has anyone got or had a dog taking Phenobarbitone?........I hate the thought of her having to take more medication, but don't think I will have much choice soon......
 
My boy Little Joe is epileptic and has been taking Phenobarbitone for over 2 years now, possibly 3. Time has wings when you get to my age :w*w: The vet takes bloods to test for liver malfunction twice yearly, without problems so far. I would recommend this drug to anyone with a dog subject to seizures. Little Joe has done so well with his treatment that he has become an active Pets As Therapy dog, visiting a care home and the Birmingham Children's Hospital for half days every week. Without the treatment he would never have been able to overcome his fears to lead a near normal active life as he now does.

Luca sounds like a very good and caring neurologist from what you say. My boy Rebel was diagnosed with SM at Chestergates too. Although he only attended once for a MRI scan my vet was always able to liaise with the neurologist there for advice about his treatment.
 
Hello Flo, thank you for the reassurance you have given me. Does Little Joe also have SM? And if yes, does he also have treatment for that along side the treatment for the seizures?......
Luca did mention about the blood tests.
Luca isn't at Chestergates now, he is at a practice in Cheshire, and yes I am very lucky he is giving me so much advice.
He is away now until May, but has given me the number of his coliege in case I have further questions while he is away.
There are nice people in this world. ��
 
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Hello Ann, our Pippin had epilepsy when he was 5 he was having seizures. He was put on Phenobarbital which I think is the same as Phenobarbitone. He did very well on it for 5 years on it. He had regular blood tests to check his liver while on it, he actually outgrew the epilepsy and was weaned off it aged 10.
He doesn't have SM but he does have MVD/CHF and was on medication for that also. He is still with us at 13.
Wishing you well xx
 
I think my next step should be to see my own vet and get Ellie's bloods done to make sure she is Ok to have the Phenobarbitone. Another thing that bothers her now is traveling in the car, she pants a lot now, wheras she used to be fine on car journeys,simply just sleeping .
Nice to hear that Pippin grew out of the seizures.
 
ann said:
Hello Flo, thank you for the reassurance you have given me. Does Little Joe also have SM? And if yes, does he also have treatment for that along side the treatment for the seizures?......
Luca did mention about the blood tests.
Luca isn't at Chestergates now, he is at a practice in Cheshire, and yes I am very lucky he is giving me so much advice.
He is away now until May, but has given me the number of his coliege in case I have further questions while he is away.
There are nice people in this world. ��
Click to expand...

Hello Ann

Fortunately Little Joe does not have SM so far as I know, because it's always possible for a dog to have it but show no symptoms. He was scanned at the university vet. school when he was a couple of years old, partly to check in case it was SM, but more importantly to see whether he might have had any brain damage or trauma because of a fall downstairs when he was a puppy. He was clear on both counts.

The epilepsy is classed as Idiopathic (cause unknown), although the vets do accept my own observations that the fits were always brought on by stress.

The liver function tests are made every six months after the drug has been taken. My vet had no evidence to suggest that there was anything wrong with Joe's liver before he started taking the Phenobarb.

What an absolute treasure Lucca is. Rebel's scan was interpreted by Geoff Skerret (?sp) but he was treated by Dave, who advised my GP vet by 'phone and email several times over the years.
 
I think Luca wants to have Ellie's blood tested before taking Phenobarbitone because she has been on the Pregabalin and Omoprozole for over two years and maybe she couldn't tolerate more drugs......I have made an appointment for her blood test on Thursday . Thank goodness the insurance never quibble about paying out!!
 
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