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Vets that have knowledge on SM in the Solihull area?

Fantastic news about Ruby, Kate! Chuffed to hear you were able to adopt from Many Tears!! Small world! We do home checks for them and have fostered on multiple occasions with them, excellent rescue.

Thanks Flo! Fortunately I think we've hit a sweetspot with his treatment program. Its sort of balanced out just right in a pretty simple combination. I was talking about it with mom today saying how strange it was that we tried all sorts of complex combinations of medications and different dosages, unyet the magic bullet seems to be the high dose of gabapentin and the amitriptaline. Hes happy right now and comfortable with what hes on and we're making the absolute most of it as always.


RE to the collapsing, it seems to have gotten a little worse but its not so much of a concern as when it first started. We thought it might go rapidly down hill but it seems to be something thats just there and not really causing too much of a problem. We discussed it with our vet and we were told to keep an eye on it (he said it was likely to do with his SM/CM seeing as it happened to any limbs at random) and to let them know if it progresses any further at which point we will consider further treatment options.

He is still happy and comfortable, I am pleased to report and is enjoying the sunshine! Just last weekend he was basking in the sun on my bed with me in the morning, which was lovely. He was comfortable and well away, such a nice thing to see! As you all know, he always used to seek cooler places but this isnt so much the case any more.

We have also noticed that he is actually playing occasionally which used to be a really rare occurrence, so hes definitely happier. When we were at the caravan last weekend he was even chewing his bone! (which he had previously stopped doing all together) He really enjoyed coming down to the caravan, he just sat there on the patio in the sun chilling while we did gardening work (alright for some, eh?) which was nice as (although this isnt related to his condition) he used to have pretty bad separation anxiety and didnt like it unless he could be directly by his moms side but I think the medication has made him a bit more relaxed, which was good! :lol: .

Oh and also, before I forget...
Just a few weeks ago we noticed he was fussing with his ears more than usual. So to make sure everything was OK, we took a look down his left ear and noticed it was caked in this black tar like substance. This happened fairly quickly as the week before we had cleaned his ears out best we could as we usually do (which as I am sure some of you know, is a rather difficult task when you're dealing with SM/CM :( ) and they were fine. Anyway, we rang the vets and got an appointment and they diagnosed him with a yeast and ear infection in both ears, we were really surprised he wasnt showing any outward symptoms other than a bit more ear scratching than usual!

We were so proud of him because the vet had to examine his ear which as you can imagine was a very distressing experience for him.
Now as you know, getting round the ears of an SM/CM cav is extremely difficult and painful experience for them, espcailly with Zigg because his ears are his major trigger spot, so to speak. Now not only did he have the infection to deal with, he also had his condition to deal with, poor thing. He scrabbled and scrabbled like mad (literally bull in a china shop stakes) to try and get away, you could tell he was in a great deal of discomfort with someone getting round his ears but we got it done in the end! He even kissed the vet at the end of it all too! Typical cav :lol:

We got sent home with some ear cleaning solution along with anti biotic drops. He has now finished the anti biotics and is now just on his cleaner for another week. The infection has now cleared up and he is better for it!

So as you can imagine, we are really pleased with how well he is doing, especially with all he has had going on.

Anyway, thats about it from our end! I trust that everythings going OK with Ruby?
Hope you're all doing OK :)
 
Hi James

Thanks for the update, and SO glad to hear the good news about Ziggcl*p Any hope of bringing him over to this year's Cavalier Weekend - same place as last year, 11-12 July? It would be great to see him (and you and your mum!) again.

Ruby is doing well. I think she was pretty spoilt as a pet and also missed out on walks and attention when her previous owner became too ill to care for her properly, so there are a few issues to work through, but she is getting very confident and also losing weight steadily (she was 12.15kg when she arrived 7 weeks ago and is now 11.45; I'm aiming for around 10.5). She walks nicely on the lead, is brilliantly house trained (both Oliver and Aled had a lot of accidents in their last few months, so it's nice to put the Febreze back in the cupboard!), gallops back to me when called, has taken buses and trains in her stride, is good with children. She is bright and will need training to keep her mind occupied, and can be demanding of attention; she still looks a bit like a beagle (she had been shaved!) but her coat is growing. So all in all we're getting on well, I think.

Hope Zigg continues to keep well,

Kate and Ruby
 
Hi all!


So so so sorry I didnt get round to updating everyone sooner, things have been absolutely chaos to say the least!


Happy to report that he has been stable all year round and he even went on holiday with us, coped great and really enjoyed it! :D The mix of the 900mg of Gabapentin daily alongside with the amatriptaline really did the trick for him. It made him comfortable and gave him a much better quality of life, although a high dose it certainly worked. A lot of people we tell about his doses are shocked that he isnt sedated. So anyone heading down a similar road to us: definitely dont be disheartened by the higher doses but at the same time, no 2 cases are the same (especially with it being such a complex condition), so theres also that to consider!


Zigg didnt change much from my last post until around October time. Very unfortunately, symptoms we were having previous to the higher dose of Gabapentin were starting to creep back in. More excessive paw licking (although this never really completely went away, but it wasnt becoming obvious he was doing it a lot), more tremors (finally found out what those are!), violent scratching episodes, general collapsing and just general instability on his feet. Its gotten to a point where hes not really able to sit still on a wooden floor without slipping back.


Since October, the things that have been coming back have been getting worse, so we decided to book another appointment with the Willows. We heard that Stephanie left so we ended up with Sebastian.


The appointment was yesterday, Sebastian was excellent. He did the usual assessment and picked up a few new things:


He found that Zigg had a curvature in his spine (id say it was somewhere down the middle; I think) due to the Chari Malformation, which could be (among everything else) contributing to his decline in mobility. He then went on to discover that theres quite a bit of muscle wastage affecting ziggs front legs, which would probably explain his weakness when it comes to being able to hold still on a wooden floor. He also saw one of Ziggs tremors while assessing him and he queried us about it. He said that what Zigg was experiencing with these tremors were very mild seizures (cant remember the complicated name for it!) and that they would obviously exacerbate his symptoms.


Hes put us on some new medication for the seizures with the starting dose being 200mg (I'l update you all with the name of it soon!), of which he warned would make him tired as a transitional side affect, but once hes on it for longer then 3 days he should pick up. He is definitely completely knocked out, I dont think I've ever seen him like this before. Hes now extremely unstable on his feet and very very lethargic, I cant say hes was awake that much yesterday. This morning is even worse, so Im not sure we'l be able to keep him on this. I know hes going to be tired, but not this tired... Surely?



So hopefully, this will ease up and he'l start to feel a bit better! :(


Sebastian also suggested we put him on steroids but we told him about our previous experiences and he agreed that it wouldnt be a good idea with his colitis issue. As an alternative he will be put on omeprazone (I think...? Il have to check that :lol:) perminantly rather than as and when he needs it. He said putting Zigg on it for his fluid build up will help a bit but he said to trail it for at least a month to 6 weeks to start seeing results.


However, Sebastian did also warn us that theres only so much more we can do past this point. We definitely know we are on borrowed time with him and we never ever take that for granted. He said that we could try Pregabalin further down the line (in a months time) failing everything else but said its not likely to have any significant affect.


One thing we are all saying is that we never ever could have imagined he would make it past Xmas 2013, so he's done so so well and we're so proud of him with how hes coped with everything hes had to deal with. Just heart breaking to think that such a wonderful dog/breed should have to go through such horrendous pain and suffering :(

Anyway, Il keep you all updated and let you know of anything that happens.

By the way, Kate: sounds like Ruby is doing really well! Thats great to hear, she sounds a brilliant companion. Hows she getting on now?
 
So good to hear from you, James, and to get up to date with Ziggy. His symptoms sound very much like Oliver's, who after having his CM/SM well controlled for several years, started getting symptoms again at the age of 13. He had really weak hind legs, which could well have been degenerative myelopathy (the hind leg weakness generally associated with German Shepherds but now known to occur in Cavaliers and several other breeds), rather than CM/SM related. He also had curvature of the spine, but a physiotherapist we saw said this was due to him using his abdominal muscles to keep his hind legs upright so that he could balance himself, so that he looked tucked up and his spine was pushed up.

Is Ziggy's anti-seizure drug Topiramate? Aled was on it for his myoclonus. Hope Ziggy has woken up by now - these drugs tend to zap some dogs more than others. I'm glad you had some time when Ziggy was like his old self - it's good to have happy things to remember, and not just the stress of dealing with one thing after another with a very sick dog. I found I did a lot of grieving when Oliver got so ill in the last 18 months of his life - missing the energetic dog who went on long walks, did competition obedience, camped and visited friends, and went everywhere with me. That dog had disappeared and been replaced by an old dog who battled valiantly to live a normal life. Be gentle with yourself too - it is hugely stressful to nurse a really ill dog.

Ruby is fun, if very noisy! Having lost 1.5kg, she is now very energetic and very bright. She loves our monthly training class and does everything at top speed! So far she has a clear heart; CM/SM? Anybody's guess. It feels quite odd having a dog who only goes to the vet's to be weighed! But I am lucky to have her.

Pat Ziggy from us, and we are thinking of you both.

:hug:

Kate and Ruby

PS You might find a buggy helpful if Ziggy's walking continues difficult - Oliver and Aled enjoyed going out and about in ours, they could walk as far as they could manage and then sit in their chariot and get fussed by everybody!

PPS If you felt Ziggy would enjoy it, you would all be very welcome at the Midland Christmas Party on 5 December in Coventry. He could sit on your lap and watch the proceedings - and get a present from Santa!
 
Hey everyone...

I just want to thank you all so much for your kind support and reassurance over the years with Ziggs journey through Syringomyelia and Syrinx Malformation.

His progress has sadly slown down and we have made the difficult choice to let him go today. Our visit to the Neurologist in late November gave us an extra month we wouldn't have otherwise of had and was definitely worth the try. At this stage though, we had no where else to turn, he really went down hill this past month and at this point, its the kindest thing to do.

We are absolutely devastated that such a dreadful thing could happen to such a marvelous dog. Ziggy has changed our lives, without him we wouldnt be the people we are today, we wouldnt have fostered all the countless dogs we have over the years.
Without him, I wouldnt be doing volunteering with various kennels and by extension I wouldn't know all the brilliant people I do today. His life has had a massive impact on ours and we will never ever be able to repay him for what hes done for us.

We loved him to bits and always will no matter what happens, and we want to thank everyone again for all the crucial information at the time of his diagnosis and throughout the course of his battle with SM/CM. Without the support from everyone here at this amazing community, getting to the bottom of his condition would have been far more difficult than it already was. It was lovely meeting up with (almost) everyone at the event in 2014 and was a pleasure meeting you all and your companions.

If anyone would like to use this thread for research purposes, please do and if anyone needs to find out any information about his condition/health at any time; feel free to contact us but note that he was not a KC registered cav.

For anyone else starting a similar path to us, best of luck to you and (as you can see with Ziggys case, he went on 2 years and a bit after his condition) its a long road, but its not completely hopeless. It took us a very long time to get Ziggy on the right path and to get him comfortable, but once we did he had a very good quality of life for a very substantial amount of time.

Hope that everyone else is doing OK, thanks again.

PS:

Very glad to hear that Ruby is getting on well, must be nice to see progress taking place. Also sorry we couldnt make it for the xmas party, Zigg still wasnt well enough by then and a family member got sick and we needed to take care of them.
 
Oh James, I am SO sorry that you and Ziggy have lost your battle. You must be devastated, you form such a close bond with a sick dog, and as you have written, Ziggy changed all your lives. This is a great legacy, something that will help you to remember Ziggy with thankfulness.

Caring for a sick and then terminally ill dog takes over your life. When they are gone, you have to adjust your lifestyle - no more pills to give, no more visits to the vet/neurologist, no more gentle walks, no more cuddles, no more keeping an eye on them 24 hours a day, no more worrying about them. When I lost Oliver and Aled last year, I found this adjustment really hard to make, it was like changing my identity from nurse to Oliver and Aled to non dog owner. So while you grieve for Ziggy, be gentle with yourself, you have done more than lose a dog, painful as that is.

I feel so sad for you all...

:hug:

Kate and Ruby
 
I am so sorry to read this.......Ive been following Ziggys progress when you have written about him.
I understand how painful it is to lose a little dog you love so much. I lost Leo in October and every now and again I still weep for him...as Kate said give yourself time to grieve and remember all the wonderful things you did for each other.

Mel
xx
 
I too have been following your thread about Ziggy and am so very sorry to read of your loss, in time you will be able to look back and remember all the good times and the joy he brought into your life.
 
Thank you everyone for all your kind words and sympathy. Its certainly been a very difficult few days, like you say Kate; its so hard adjusting to not having him around... Keep going to pick him up for a hug, quickly pick up some food off the floor or waiting for him to come running to me when I come back after a few hours. I miss him so so much, but its very comforting to know that hes no longer suffering.

Il try and upload his original MRI scans at some point when I have time to dig them out, just in case they may be of any use to anyone doing research. (Although hes not KC registered, so maybe not) I really want to help get word out there about SM/CM in general... (ive already had the idea of car bumper stickers and numerous other things...) This journey has really shocked me with how little is known about the disease, despite all the media attention over the years!

When we first went to get Ziggy diagnosed, we suggested it may be SM/CM and the vet sniggered at us and told us that "only younger dogs get that"... (Which I thought was a pretty weird thing to say...) This was with the air scratching, the bunny hopping, the crying in pain, ear scratching, head tremors, paw licking, head rubbing and sensitivity to light! With those symptoms in combination with the breed (along with the statistics too), you would think that would be enough evidence to suggest that it might be worth looking into...

This is very upsetting when you think of the amount of cavs suffering in silence, awareness is key as we all know! I find this really strange because on my walks in my local parks over the recent years, I've spotted loads of symptomatic cavs... (Ear scratching, the occasional bunny hopping and abnormal gait etc...) I suppose the argument could be made that just because its a cav, doesnt mean it has SM/CM which is true but its certainly not something that should be tossed aside like some sort of exceptionally rare disease...

Sorry, gone into rant mode!! I could rant forever about it, I really could. Anyway, I hope everyone is getting on OK and that Ruby is still progressing well. Thank you all again!
 
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The Companion Cavalier Club held an excellent Health Seminar in late 2014. One of the speakers was Clare Rusbridge on the results of the latest CM/SM research and treatments. This very good talk is now available as a DVD from the Cavalier Matters online shop: http://cavalier-gift-shop.org/companion-cavalier-club/health-seminar-dvd/prod_684.html A very good thing to hand out to ignorant vets - I think a lot of them were given it for Christmas!

I think we all feel like ranting from time to time! Both CM/SM and heart disease can be bred away from if human beings would bother to test their dogs and take them out of their breeding programme if they test positive for these diseases. I hope you have signed the petition asking the Kennel Club to make health testing mandatory of parents before they will register Cavalier puppies: https://www.change.org/p/the-kennel...heir-parents-are-mri-scanned-and-heart-tested Have a look at the Cavaliers are Special Facebook page, which has hundreds of comments from people who have signed the petition. 23,000 signatures so far.

And you might enjoy (but also be moved by) this latest video from the campaign: https://www.youtube.com/watch?v=tL2NhnhOcNM

:hug:

Kate and Ruby
 
I was so very sorry to read that you had lost your precious Ziggy :( I had the pleasure of meeting you, 'Mum' and Ziggy at the summer party, and was so impressed with your loving care for Ziggy.

thank you for giving him a wonderful life and doing your very best for him. I'm thrilled that his journey has led you into helping rescues and maybe even into a career working with animals, that's an incredible legacy for Ziggy to leave.

i have had 9 Cavaliers now with CM/SM (two CM only), sadly I've been told that for some of them, in a 'normal' home, their symptoms would not have been identified so they would have suffered for years :(

the amazing charity, www.cavaliermatters.org is doing its very best to raise awareness, amongst numerous other projects, perhaps you could contact Tania if this is an area where you would like to help?
 
Thank you Nicki, it was a pleasure meeting you all! Im definitely going to look into seeing what I can do to raise awareness, (hopefully Il have some more time to do so soon) as we think this is key in many many ways to help the breed in general. Hopefully, the more people we educate about it; the harder it will be for the Kennel Club to carry on lying and for the breeders to keep on breeding the way they are...I will definitely look into Cavalier Matters, they seem to be very clued up and have a good sense of direction. That DVD is an excellent idea, Kate! Really hope the petition actually reaches (and surpasses) 25k, the more pressure the better!
 
We're having a Companion Club meet-up for coffee at Crufts on the Saturday,12 March, meeting at the Cavalier Matters stand in Hall 5 and going across the hall to a cafe. It would be great if you could join us. It would also be an opportunity to meet Tania, the director of Cavalier Matters, who will be on the CM stand. Some of us will be staying until late afternoon to watch the Obreedience finals - an obedience competition for teams of four dogs from breeds that don't usually do competition obedience. There's a team of Cavaliers in the final, so we shall cheer them on!

I'll be doing the Coventry Walkathon again this year to raise funds for Cavalier Matters. It's one round of the Memorial Park (1.75 miles - well, you can do more than one round, but my feet won't!) and I organise a JustGiving page for sponsorship/donations. Last year we made £300, but with more people doing the walk and asking their family and friends to help we should be able to raise more this year. It's on Sunday, 15 May, starting at 10am.

And finally you might be interested in the health seminar that the Cavalier Club are running on 6 March at the Manor Hotel, close to Coventry on the A45. There are top speakers on heart disease, CM/SM, pancreatitis and breeding. It costs £30 but that includes all the talks and lunch. If you're interested, you can get a ticket from the Cavalier Club website www.thecavalierclub.co.uk I think you would find it interesting, and meet some people with similar views to yours!

It's great that you are turning your sadness and anger over Ziggy into positive working to rescue the Cavalier breed. Neither of my boys died as a result of their CM/SM: Oliver was 13 and had had a full life, but for various reasons the quality had gone from it; but Aled was only 7 when he suffered from heart failure - it was too young and could have been avoided with careful breeding. Most Cavalier owners with experience of CM/SM and MVD turn into crusaders!

Look forward to meeting you again some time,

(y)

Kate and Ruby
 
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