I started a new thread because I read some things that Pat wrote yesterday responding to Gracie wanting to wait until Pat weighed in on medication. We all know that she is extremely knowledgeable, however, we have to be able to talk to specialists ourselves. I know when I wrote about Ella having a stomach bug, I knew something was wrong. This isn't about that, but think about if Pat was on vacation, Rod didn't answer his email?
I wrote a long post that got deleted yesterday when my phone timed out. I have been hesitant to post but I really want to say my input. I am not saying this to just Debra (Gracie’s Mom) but others to hopefully learn from my past. Pat is probably the smartest person I have come across on message boards. I am going to comment on some important things she said and also say something that I hope she will not take offense to because I believe she would feel the same way or correct me if I am wrong. One thing to always consider whether it is Pat (who luckily never had a Cavalier treated for SM) or another person who has and can give their experience are these things:
and most important
- Pat has not seen or examined said Cavalier
- Pat has not seen MRI
- Pat is not a neurologist.
Some of the points Pat said that are very valid and I hope others remember is this which I will bold.
“No one should make medical decisions based only on what someone says on an internet message board. Here is a good approach, especially when dealing with a clinician with whom you don't have an established relationship. This is what I do to establish credibility and get to a relationship where the clinician and I are part of a treatment "team":
1. Print out any and all valid veterinary resources to read, highlight, and use for a discussion. In this case, I'd print Clare's treatment algorithm for vets and also pages from Plumb's Veterinary Drug Handbook on all of the various drugs that you want to discuss - prednisone, gabapentin, tramadol, any NSAIDs, omeprazole, etc.
2. If there are questions that you have from reading message board input/feedback, I'd list them on paper to ask the clinician. But be very careful - when you start a sentence with "I read this on the internet" you almost immediately "turn off" a medical professional and put him/her on the defensive. So you want the clinician to understand that your main sources are valid veterinary references but that you also have feedback from folks with dogs with the same problem. That 360 vet website is an excellent source for material by the way. There is crap on the internet and there is valid information on the internet - you want to immediately establish that you are smart enough to know the difference!
3. IF you do not follow discharge instructions you MUST inform the clinician what you are doing and why and give feedback on the results. The fastest way to destroy a relationship is to not follow instructions and not inform the clinician until later. If you aren't able to have a phone discussion or in person discussion with the clinician, I've found it useful to send a carefully written fax or email, being careful to cite sources. My cardiologist has commented to me how helpful it is when I do that in between appointments, because he can ponder the situation and then phone me for a discussion. He says that this is a very efficient use of time.
4. If you establish a relationship of respect and partnership, with full disclosure of what you are doing and why, there should not be a problem if you choose to not exactly follow the clinician's recommendations. This (deciding a treatment course other than what was recommended) very rarely happens with me and any of my vet team, but if it does, the clinician knows that I have made an informed decision and that I accept responsibility for the consequences. I am a member of the treatment team, but I'm also the coordinator and I am the final decision-maker.”
When I talked to Debra and she mentioned Gabapentin 2 times a day, I thought back to all of the posts on CT saying it wears off at 8 hours and I thought it should be 3 times a day. Well don’t listen to me but there was a reason 2 times a day first
“Originally Posted by Kate H
We had a discussion about this a couple of weeks ago. 8 hours is the average time that dogs take to metabolise gabapentin - which means that some will need it more often and some less often. Clare Rusbridge advises starting on twice a day (ie 12 hours) and then adjusting it to suit the metabolism rate of the particular individual dog. Meds for SM are a matter of trial and error for a few weeks or months as you and your vet work out which drugs and which dosage control pain in your particular dog. I think all vets start low and then up dosage as required - if you start too high too quickly you run out of options sooner, and may find yourself backed into a corner with no more pain-control options. Whether a dog needs additional gabapentin can often depend on air pressure - many of us find our dogs need help when the weather is particularly stormy or hot. But as Pat says, you need to keep feeding information to your vet/neurologist and liaising with them, so that they have all the data they need to make informed decisions about adjusting medication.
Kate, Oliver and Aled
Pat did raise some points and some questions and others about waiting to take prednisone, why did they not start on a CSF inhibitor but THESE are questions to go back to the neurologist.
Now my story:
I posted Ella’s MRI on a SM Yahoo group sometime ago with the changes from her first on to the second to get opinions. DO NOT RECOMMEND. I was contacted by Rod Russell who a breeder emailed him privately because she has cavalier with worse MRI and not on nearly as much medication. Now unless this was Dr. Rusbridge (which I doubt she would take time to contact Rod about Ella and even though I don’t know her personally, I doubt would say another neurologist was incorrect in treatment without me asking her opinion), I don’t think this person would know more than Ella’s neurologist who saw her almost every other week or me who saw her symptoms EVERYDAY.
I started to doubt the one person who had given Ella such great treatment and I’m thankful now everyday (her neurologist). I questioned myself, am I over reacting? These things did no good except make me want to take her off prednisone which I found out was a big mistake and she desperately needed it.
What one should do is go to their neurologist about concerns. For example, I am concerned about long term side effects of prednisone? do you think it is a must? I asked him this which he said For Ella, wouldn’t she rather have a life with less pain and managed or worried about what could happen in the future which would be monitored and she wasn’t on a high dose. Now remember I saw a HUGE difference with prednisone so that was why FOR HER, it was something I gave her.
So thank you for your concern but I know what treatment helped Ella. So for those of you please remember this story. What works for one may not for another. One MRI may look worse than another, but the symptoms are different. EACH DOG is different and there is nothing wrong with studying up on information but remember that your best ally is your dogs neurologist or specialist. They will be able to tell you and help you most. Now if you have one close minded and a "know it all", I don't like those but it is key to have a good relationship with the person who will be taking care of your loved one.
You get on message groups and some things are very helpful like finding out about Lyrica and other tips, but these all need to be discussed with your neurologist. One that you can trust and go to. They are the ones that KNOW your Cavalier and don’t you think they know more than some unknown poster that has not gone to vet school more less studied neurology?