• If you're a past member of the board, but can't recall your password any more, you don't need to set up a new account (unless you wish to). As long as you recall your old login name, you can log in with that user name then select 'forgot password' and the board will email you at your registration email, to let you reset your password.

UPDATE on Shiloh...Rapid decline in last 24 hours

Luckystar

Active member
Hi everyone.

I'm writing this because my husband and I are at our breaking point. Or at least getting very close. Shiloh has now been on her medication about 3 weeks. After seeing some improvement initially, although not as much as we'd hoped, we are now seeing a pretty rapid decline. Yesterday and today were probably the worst days Shiloh has ever had. Despite being on 3 different medications. (We are currently giving her 100mg of Gabapentin 3x a day, Tramadol 1-2 times a day as she waits for her next dose of Gabapentin, and Rimadyl 100mg 1x a day. She is also getting a daily probiotic, Protegrity GI, to help her tummy, which has been much better.)

Throughout this whole process, ever since her new vet told us we may have to put her down at some point, I have been asking people over and over, "How will we know when it's time?". Tonight during her episode, I finally understood. We will know EXACTLY when it's time. If she makes the same sound again that she did tonight, it will be very obvious that it's time. She really has lived her life in pain. Tonight was another level. It wasn't wimpering, or crying, or yelping, or screeching. It was WHALING. TORTURE. I actually felt my heart break inside my chest. It was such a horrible sound I didn't recognize it at first because she's never made that noise before. The last 24 hours have been a rather rapid decline. Today it seems like every 5 to 10 seconds she was air scratching, or displaying one of her other symptoms.

She is currently sedated, hiding under our bed again. As it stands now, our next follow up with the vet is the first week in November. The next step is adding Prednisone, but the vet said this will be our last option. We are calling the vet first thing in the morning to see about starting the steroids right away.

Is this normal to have such a rapid decline? It has been getting worse all week, but since last night she has taken a turn for the worst. When we told my brother, who absolutely ADORES Shiloh, it may be getting closer to the time where we have to put her down, he said, "What are you going to do? Just kill her?"... I know he doesn't understand the situation completely, but that comment just ripped me up inside. I know that at the end of the day it's a decision my husband and I have to make together. I understand that my brother doesn't have a complete understanding of SM and the horrible pain it causes, but it just was hard to swallow. I'm really starting to feel that if we truly love her, which of course we do, putting an end to her suffering is the only option. My parents observed her episode today and they told us that we may be out of options, as hard as that is. My mom went to Shiloh's vet appointment with me this past week and the vet explained SM to her and how painful it is. It was good to have her support.

I guess I'm just writing this to gain support from this wonderful community of Cavalier lovers who also understands SM. Thanks for listening.

Love and light to all:)
xo,
Dre AKA Lucky*
 
Oh I'm so sorry to read this update. I have heard that air pressure changes can make SM dogs have really bad days. I also know of a few dog who did rapidly declined as well and did not respond as expected to meds. I do not know too much about the SM meds but I call your vet and maybe something can be added or changed to help some. I'm sure you will get folks here with more info to give you some advice.

I have only support to provide you. I know this must be heartbreaking.
 
I'm sorry you are going through this. Shiloh is actually on very low doses of her meds. You could increase her gabapentin (my Aled is on 200mg x 4) and perhaps also her rimadyl - most SM dogs can safely go up to 300mg x 3 of gabapentin, and beyond that there is the refined form of gabapentin called Lyrica, which works extremely well with some SM dogs. And if all else fails for pain control, there are steroids. You have not run out of options with medication. Have you shown your vet the treatment algorithm on Clare Rusbridge's website (www.veterinary.neurologist - someone else can probably give you the full link, I always forget it!)?

If Shiloh is getting pain between her doses of gabapentin, you may need to up her to four times a day - it is important to get 'blanket coverage' because gabapentin is designed to prevent pain coming up to the surface, so to speak - it's not so much a painkiller that deals with the pain once it's being experienced. The average time for gabapentin to work through the body is 8.5 hours, but that is an average, which means some dogs will go longer and some dogs need it more often. Both of mine do better on four times a day. Talk to your vet now about increasing the dosage, or get a referral to a neurologist - or ask your vet to consult a neurologist who knows about SM.

Melissa is right that rapid changes in air pressure can badly affect SM dogs. On those days I give an extra gabapentin. Air pressure has been known to affect a dog so badly one day that euthanasia was discussed, but the next day the pressure was less and the dog was very much better. Many of us with SM dogs become obsessive air pressure watchers!

If Shiloh is in that level of pain, you need to get on to your vet quickly - we all have to fight their corner with our SM dogs and insist that the professionals get moving!

:hug:


Kate, Oliver and Aled
 
I agree with Kate. It sounds to me like Shiloh needs her medication upped and sharpish.

Merlin is on Gabapentin (100mg) 3 times a day
Metacam every morning
Tramadol (at night or as and when he needs it, if having a "bad pain" day etc)

Merlin is at the early stages of CM and these medications are working well, however it sounds like Shiloh is in need of a lot more and should be on higher dosages.

As Kate told me ............fight their corner. Fight for your Shiloh and tell the vets what YOU WANT, not the other way around. You know Shiloh the best and you will know deep down how much more medication she needs to make her comfortable. Tell your vet how you feel, and don't give up on her, she's counting on you to get her help, dont let the vets fob you off, i've had it done many times with Merlin.

Big cuddles for you and Shiloh.

Gemma & Merlin xx
 
Oh no, sorry to hear Shiloh is still suffering. A rapid change in air pressure can cause pain. And as Kate said, Shiloh is on a very low dose of medication. Just upping her gabapentine may give her a better quality of life for quite a while. All is not lost. There is still wiggle room to tweak the meds. Please let us know what the vet says. :hug:
 
I agree with everything that Kate said and also that you have to fight Sholoh's corner for her. Shout as loud as you have to but get some expert advice.

Just for the record, my Rebel reacts badly to sudden air pressure variations and also to extreme temperature changes, which means I have to increase his Gabapentin to compensate.
 
For such a dramatic pain reaction you may want to get Shiloh on prednisone for a period of time. It may be enough to get her over the hump while you increase her other meds. Prednisone has worked wonders for Riley. There is still hope. I know it's hard to think it at such a time when you're heart is breaking to see her in so much pain. We're all in your corner too.
 
I don't have any experience of a cav with sm (yet, although I pray that i may never need too) but my heart breaks when I read your posts about Shiloh and how horrific it must be for you to witness and feel so utterly helpless to stop her pain.

I just wanted to say my thoughts and prayers are with you and I so very hope that you can get her meds up to the right dose to spare her from her suffering. Jazz and I are routing for her :hug:
 
Im so sorry to read that Shiloh is so very poorly. You are doing the right thing by exploring every option before making that terrible decision we all dread. Remember there is always support here (plus a mountain of knowledge). Good luck and keep us uptodate.....take care. Mel x
 
I will very much echo what others have said.

This is a very low dose of gabapentin. And steroids would very likely greatly help. This must be terribly difficult for you. :hug:

Please have your vet work TODAY from Clare Rusbridge's treatment algorithm (November or even tomorrow, is not acceptable). Given what you are seeing I'd ask to get her on short term steroids as this level of pain is truly not acceptable. I'd be thinking about getting her on maybe 200mg 3x of gabapentin right away as well. To be honest for a dog in this level of pain I'd just start right NOW giving her 200mg 3x and see if that helps -- it may immediately bring some relief to her. Normally (and I stress normally!) I would not advocate making adjustments without going thru the dog's medical carer but many of us experienced with SM have had to raise dosages ourselves of SAFE meds such as gabapentin at various points and confirm them with our vet or neurologist. I would NEVER advocate increasing any NSAID or other medication but gabapentin should be quite safe to increase under these very urgent conditions where a dog is clearly suffering greatly.

I'd be considering Lyrica as well. It tends to be more effective than gabapentin and for a dog in a lot of pain, that would be my own next choice if a raised dose of gabapentin doesn't work. Some are on BOTH gabapentin and Lyrica but such fine tuning really, really needs to be done by an experienced neurologist if at all possible.

With SM dogs you must be their advocate. If you see any return of pain, it is critical to get on to the medical professional and insist that meds be adjusted RIGHT AWAY. Too many vets have no idea of the level of pain this disease can bring and all of us with SM dogs have learned we often have to come out fighting for our dogs (and change vets if they have a problem with very active management -- this is NOT a disease that tends to remain still, with a consistent tratment plan. They need to educate themselves about SM. Best way is Clare's website materials).

You will not hurt a dog by opting to increase the gabapentin dose as advised. I stress again that in your shoes I would right now, bring it to 200mg 3x at her next dose. If that doesn;t help., and your vet is not responding, I'd increase to 300mg 3x until you can get in to see them. Or get a new vet.

Often rimadyl doesn't do too much. There are also some other options than tramadol.

You have a lot of short to medium term options before thinking about euthenising Shiloh. That said, yes, they can decline quickly and this is a totally unpredictable condition. For some dogs,surgery is a much better option but also sometimes the opportunity has passed if too much damage has been done. These are considerations to make with a neurologist.

But there are MANY options ahead with meds to try and greatly improve Shiloh's life. Do not hesitate to ring your vet and ask for an emergency appointment today to adjust her meds. Discuss short term steroids. And increase her gabapentin right away.

We know what you are going through. Don't despair yet. But also carry with you your wise but difficult knowledge that you now understand this condition better than others and know that tough -- but ultimately, kind -- decisions may lie ahead. We all hope that will be some time in the distance.
 
Thanks for the replies. Sorry I'm just now responding.

In answer to some of the questions...I gave the treatment algorithm to the vet at the last visit and Dr. Pearce has been consulting with a neuro as well regarding Shiloh. We have increased her gabapentin as well as pain meds. Dr. Pearce is very knowledgable about SM, she certainly has exceeded our expectations since we switched vets. Dr. Pearce is also aware that financially we are not able to afford the more expensive options. Lyrica is quite a bit more expensive than the Gabapentin, so this is the reason we have stayed with it. She also does not believe that Shiloh is a good candidate for surgery. Although she is only 2, her case seems to be very severe and I will not put my dog through brain surgery. I have to trust that my vet knows best regarding the surgery. She said that even if we did have all the money in the world, she and the neuro would not recommend putting her through it.

Maybe there is a neuro out there who could guarantee Shiloh would have a great life after brain surgery, but I can only do so much. Brain surgery is just not an option for us. I'm staying hopeful that we will see Shiloh's life improve. As of late, we are starting to feel that even if she has relief for a time, this disease will absolutely continue to get worse. We have seen proof of this over the last year. We have seen proof this week. Unfortunately, we may have given her too little too late. Before starting her on the meds, she was already in very bad shape. And she continues to get worse even after being medicated. The only time she is even a little bit more comfortable is when she is sedated. I just don't think it's fair to keep a dog drugged all the time when it doesn't even relieve her pain. If she was doing great, I'd give her as many pills as it took! Believe me! But she's in misery and I don't know how long I can watch her get worse and worse. The misery seems to never end. It's HEARTBREAKING.

She's catching flies now. The other day when I bathed her her leg twitched every time the water gently touched her back. Yesterday morning she growled and snapped at my husband when he tried to gently put on her harness. Her cries are more anguished. She has been digging obsessively on the floor and we now have claw marks on the wood floor and concrete. I could care less about the floor. She scoots her bum on the pavement on walks and cries when it rubs her raw. I honestly feel like if anyone else witnessed her misery every day they would tell me I'm crazy not to give her mercy and put her to sleep. My husband feels we are delaying the inevitable and is having a hard time watching her suffer so much. Who wouldn't!? It's BRUTAL. We just feel helpless. Thanks for all of the support. It means a lot. Xo
 
And also forgot to mention, the air pressure situation is very interesting! I'm not sure what it has done over the last few days, but it seems likely that the air pressure has affected her if it can cause pain in SM dogs. I had no idea so thank you very much for the insight.

Also, we will definitely do steroids if the increase in gabapentin doesn't help. Thanks so much:) Everyone here has been so wonderful. Sorry if I seem gloomy today. Our household has been quite stressed the last few days watching Shiloh suffer. I would give anything to take her pain away.
 
My two have never had anywhere near Shiloh's level of pain, so I can only guess at how you feel. So I'm just sending you much love and for you to have the wisdom to do what is right for all of you.

I think how the air pressure works is that CM makes the cerebral-spinal fluid move sluggishly round the brain and it backs up in the ventricles, pushing them outwards against the brain and the skull and creating pressure. So when the air pressure is very up and down or very high, the skull has pressure inside pushing outwards and the air pressing in from the outside - so it's hardly surprising it hurts, they must get splitting headaches. Human CM sufferers are also affected by air pressure and get bad headaches.

:hug:

Kate, Oliver and Aled
 
I cannot imagine what you and Shiloh are going through. To see your dog in such pain, must be beyond agonizing. I pray the vet finds the right meds and can give Shiloh some relief. If Shiloh is such an extreme case that relief is not possible, I wish you strength in making a tough and personal decision.

Joan
 
Hi everyone:)
Shiloh has been on the higher dose of gabapentin now for several days. She is very sedated by it. We think its helping some, but she sort of just has a dazed and confused look in her eyes all the time. Just wondering if this is normal or if it will ease up at all? Her legs are pretty unstable as well, which the vet said may happen as a side effect. Has anyone else experienced that with their dog as a side effect or as a result of SM? Just curious since she just seems unable to stand up sometimes without her legs sliding out from underneath her.

If anyone could offer insight on this we'd so appreciate it.

xo
 
Sleepiness is a normal reaction to gabapentin and should wear off in a week or two (humans are warned not to drive or work machinery, but neither apply to dogs!). Wobbly legs are also a common symptom of SM - oddly enough, I find a short walk helps to steady them. It seems to be a balance thing rather than painful, which I suppose is understandable as the CM is pressing against the cerebellum, which is the part of the brain that controls balance. Oliver's had wobbly back legs for several years, but seems to be able to forget about them when trotting round the park. I have bad balance and often can't walk straight, so we make a good pair :lol:

Kate, Oliver and Aled
 
Rebel had similar balance problems when he started on Gabapentin. As Kate says, it soon wears off.

I am so glad that the increased dosage has helped Shiloh to feel better. Nil desperandum (?sp) is the operative phrase when medicating for SM/CM
 
How is Shiloh? If you find that no other combinations work, please do try prednisone. Sammy was in a horrible state at Shiloh's age and I eventually put him on prednisone. It gave him 5 happy years. He is in a sad state again now and the prednisone may have done some damage in the end, but I still would not give back those 5 normal dog years for anything.
 
I agree with Laura that prednisone can be a miracle drug. That doesn't mean that it has to be used forever - even though for Riley it has been. Short-term it can work wonders. I've even seen it with Oliver who has had severe disc problems and has periods in which the pain is so bad he will not move. Prednisone has gotten him over the hump. With Riley, because she's on it long-term, she takes Denamarin every day to protect her liver. But, maybe Shiloh is adapting to the gabapentin now and this is all a moot point - hopefully?
 
With Riley, because she's on it long-term, she takes Denamarin every day to protect her liver

I've never heard of Denamarin, which I've got to say makes me angry. Sammy has been on prednisone for years and having regular blood tests to check his liver/kidney function, but no one ever mentioned it. However, I will be off to the vet tomorrow to get him on it pronto. His neurological symptoms have improved again today.
 
Back
Top