Lilly Update: What Meningoencephalitis Looks Like
We have a diagnosis: meningoencephalitis. That simply means inflammation of Lilly’s brain and the lining around the brain. We do not, however, know (yet) the root cause of Lilly’s rapid decline over the last week or so. Here are some pictures and a short video from our visit with her Tuesday (1/31) afternoon and more details that we can share.
I know this post is likely WAY too long, but there is a lot of information to share.
Meningoencephalitis – What’s Going Wrong?
We know from Tuesday’s (1/31) MRI that four distinct areas of Lilly’s nervous system are affected:
- Upper cervical spinal cord (her neck)
- Cerebellum (back of her brain – controls coordination / balance)
- Brain stem (oldest part of the brain, evolutionarily speaking – transfers signals from the brain down the spinal cord and affects all sorts of fundamental body processes)
- Occipital cortex (toward the back of the brain – also sometimes called the visual cortex)
Essentially, Lilly’s ability to move her body reliably is greatly impaired. She cannot stand or walk. When I have more time, I’ll write a better, full description, but watching her try to move is a bit like seeing a tadpole wiggle in the mud.
Her vision isn’t great right now either. We know that from delays in her “menace response,” which literally means they try to startle Lilly and get her to flinch, but she is very slow and dulled in her response to say someone flicking their fingers near her eyes.
We know from her initial neurological exam from Monday (1/30) that Lilly is weaker front than back and weaker left than right.
What We’ve Ruled Out
I’m happy to report that so far veterinarians have ruled OUT several very scary possible causes of what’s happening with Lilly, including:
- IMHA (immune-mediated hemolytic anemia) – a destruction of red blood cells, where most dogs survive just 2-3 weeks from onset.
- GME (granulomatous meningoencephalomyelitis) – a severe and often irreversible form of nervous system inflammation.
- Structural lesions in the brain or spinal cord – essentially nervous system cancer
Meningoencephalitis – Sad, But Hopeful
One of the hardest parts for me is to see Lilly not at all like her bright, sharp, edgy self. The physical declines are tough because her body literally does not feel like Lilly. When I hold her hands or help move her around, her body feels like she is NOT there … like the quintessential Lilly CHI is just not there.
It’s also VERY hard to look into her eyes and NOT see my quick / responsive girl. It feels like she is distracted or absent from her own mind. Because looking at her right now feels like looking at my Mom (who, for those who don’t know, is dying from a disease affecting her brain stem), it’s hard not to make comparisons, not to stir up other grieving emotions, etc.
We’re pretty much past the stage where we fear for Lilly’s life, but I’m still quite worried about:
- What Lilly’s recovery will look like
- How long it’ll take
- And, whether or not she’ll return to the 100% Lilly we know, including body physical strength and agility as well as mental / cognitive sharpness
Meningoencephalitis – Treatment Timeline
Even though we don’t know what has caused Lilly to get so sick, the good news is that veterinarians already started a treatment plan right after Lilly’s tests on Tuesday (1/31).
Lilly is getting a chemotherapy drug most often used to treat lymphoma because nervous system inflammation is mostly processed through lymphocyte cells. It is given in very different doses than if veterinarians were treating cancer. I believe it’s … cytoxan, but it sounded more like cytozene when I was told, so I’m not entirely sure.
Lilly will get intravenous infusions:
- 12 hours on
- 12 hours off
- 12 hours on
She is getting this medicine along with massive steroids, which the veterinary team began as soon as she was admitted to the specialty hospital (after trips to our nearest ER and to our family veterinarian). Lilly is being cared for by Dr. Steve Lane and his team (Rocky Mountain Veterinary Neurology), which is housed inside Veterinary Referral Center of Colorado (VRCC). The hospital is only 30 miles (about 45 minutes) from our house. It’s one of only three spots in Colorado with a board-certified veterinary neurologist.
We hope she can come home Thursday (2/2). Either way, when Lilly comes home, she will continue to take steroids. Veterinarians will also add a drug most often used to prevent “rejection” after an organ transplant called cyclosporine.
We don’t know yet if Lilly will be able to take the meds ONLY until she recovers or if she’ll need to take them for life. It kind of depends on what they find as a “cause.”
I promise I’ll write more about what role her recent rabies vaccine may have played in this later. For now, just know, it is one of many possible causes still on the diagnostic table.
Clearly, however, she will need round-the-clock supervision and lots of rehabilitation / physical therapy to regain her strength and balance and such.
Meningoencephalitis – A Video
I can do my best with words to describe what all this looks like in real life, but I think this short video clip of Lilly from Tuesday (1/31) will give you a good idea of her struggles and how far she’ll need to come to fully recover.
P.S. Many, many thanks to all of our new blog friends who came over to check on Lilly on the recommendation of our friends at Romping and Rolling in the Rockies, at Cowgirl by Proxy, and at Nawty Dawg, Big Heart.
The social media love made an impression on the team at VRCC. One staff member stopped by with her two young sons to meet the “famous” Lilly from Facebook.
Seeing Lilly on that situation is heartbreaking. I know that Lilly can surpass this and i will pray for her fast recovery.
Hi Lily, I pray that she will come into full recovery soon. It may not be easy to see her suffering but prayers along with the proper treatment is the best weapon for this…
A kind of inspiring things, Thanks for sharing these with us. Especially the video.
This video reminds me so much of the symptoms Reba had in December. Couldn’t walk, could not hold her head up, would not eat, had to feed her by hand and use syringe….. her’s was only Vestibular Disease that lasted 3 weeks however. I know how you feel though – helpless and sad and thinking the worst possible outcome. What I have found is that Dogs have amazing powers to recoup and that’s what we are praying for Lilly.
My heart breaks for you both.
So sad.. Hope Lili will recover soon… I can’t imagine how hard she is experiencing with this disease.
We are hoping for the best for you.
My Sweet Jamie is going thru a similar condition so if you ever need to talk, we would be happy to.
Bert and My Vickie
Poor Lilly! I’m so sorry she and you are going through this. I’m sending lots of quick recovery mojo her way!
I was just about to comment when I saw the latest update on Facebook about the seizures. I so hope it’s just a bump on the road to a swift recovery.
Our thoughts are with you and Lily. I hope she gets well soon and makes a full recovery!
I’m so sorry that you have yet another burden to carry. But I’m so glad that the doctors have been able to find the problem and devise a treatment plan. I hope Lilly’s recovery is as full and complete that what Caron described above.
May you see some light soon.
How terribly sad and stressful, Roxanne. My thoughts continue to be with you and Lilly.
Sending good thoughts. So sorry this has happened and I am hoping for a swift recovery for the poor girlie.
God bless your every step during this process on the road to full recovery. My Nicodemus went through a similar path and I was stunned when I just read your posts. Please keep us informed and let us know how we can help.
Have no fear, your strength will come from the weak spot in Your Heart—Your (one and only) Champion, Lilly.
Paws and prayers from us,
Christina, Azella, Devlin, Enzo, & (Nica)
Hi,
We’re friends of Sam/Marge and came by to tell you we have you and Lilly in our thoughts and prayers! I’m hoping for the best news possible.
We are all hoping for the very best for Lilly.
Woos – Phantom, Thunder, Ciara, and Lightning
Poor Lilly 🙁
I’m glad you have a name for it, and I’m glad you have an idea of treatment, if not prognosis/recovery just yet.
We continue hoping and thinking and praying….
Once you have a NAME to put to this, it seems like you will be able to bring her through. Lilly is such a beautiful little girl I just hope and pray for the very best recovery.
I have a black lab/border collie mix and she has never been sick in the three years I have had her, and I really can’t imagine what I would do with a serious illness like this one. You and KB are in an area where you have great specialist vets and in that way, you are so lucky.
Blessings all around,
Jo in MN
Many pats for Lilly and hugs for you. I’m thinking of all of you.
My goodness, seeing Lilly on that video is heartbreaking. I’ll be *very* interested to see if the rabies vaccine is implicated.
Poor sweet girl! And poor sweet you! I’m thinking of you all and saying many prayers. Glad the fine folks at VRCC are taking care of her.
Really hard for me to see your girl like that, so I can’t even imagine how hard it is for YOU to see her like that. Still thinking of you guys.
Praying for Lilly’s speedy recovery – it is so heartbreaking not to see that little sparkle in her eye and I can only imagine how worried you have been – big hugs to you both!
Thanks for sharing this. Blessings to you and Lily!
I only know of one other dog that has gone through this, a greyhound Sara, besides Lilly. Sara had the same chemo medicine that Lilly is getting. They did treatment for about 10 months. That’s about how long we did treatment too, we just finished about 2 weeks ago. Hopefully Lilly’s will be shorter. Sara has had no recurrences and is at least 5 years from her illness/treatment. She turned 10 last year. 🙂 I was very worried about how Zephyr’s recovery would go. He was even a little worse than Lilly. The encephalitis effected about 1/3 of his brain. He had seizures the day after getting to the neurology center and couldn’t walk or see at all for a few days. We didn’t know if he’d make it for a couple days. I was so happy and surprised at how well he recovered. After coming home he really improved. I’d say within 4 weeks of being at the hospital he was normal, really shorter. Sara was as serious as Zephyr and made the same recovery. I hope I’m not going on too much. I just know it was a huge shock when it happened and how scary it was and how worried I was about what would happen. I hope this helps you and gives a little hope. 🙂
Seeing Lilly on the video is heartbreaking. Poor girl, and so not herself. You are both in our prayers and we hope for a speedy recovery. Hugs from Kenzo & Viva.
I’m keeping you and Lilly in my thoughts. I just feel in my heart she will make a full recovery!
Please give her a kiss for me – I will pray for all of you.
Oh, very best wishes for you and Lilly and a good recovery.
So hard to see her like this! I know this is really hard for you. You both are in our thoughts.