Recovery from Meningoencephalomyelitis – Lilly at Home

I’m sorry it took me so long to post a blog update. Lilly’s hospital discharge on Sunday, February 5, 2012, took longer than expected, so we didn’t get home until around dinnertime. All of us were / are exhausted. The headline, however, is that Lilly is home … and as of this second has been seizure free since Friday, February 3, 2012, in the late afternoon.

Today is a bit of a catch up day since it’s the first time in more than week that I get to stay on the mountain all day. So, just a few notes about Lilly’s progress recovering from vaccine-induced meningoencephalomyelitis before we try to squeeze in a nap.

Meningoencephalomyelitis: Walking and Body Awareness Still a Challenge

As you’ll see in the video below, Lilly’s walking has graduated from:

  • Tadpole in the mud
  • Through octopus on dry land
  • To drunken sailor

Her sense of her body in space, however, isn’t only impaired when she moves. Often, even while resting, her legs and feet end up in weird positions. Notice how her neck is cocked funny in this picture and how one of her front feet is folded under. Lilly doesn’t seem to notice or be able to fix such awkward body flops without help.

best dog blog, champion of my heart, border collie recovering from meningoencephalomyelitis

Meningoencephalomyelitis: Treatment Side-Effects

Lilly developed a bloody nose over the weekend, which is of concern, but not enough to keep her hospitalized. There is a chance she is having  some bad side-effects from the chemo drug she received over 36 hours last week. They drew some blood tests Sunday, and they’ll draw more later this week to check for those things.

Right now, however, the hardest part of Lilly’s care is that the steroids make her antsy and thirsty. That means we get VERY little rest or peace because she is fussy and/or needs to pee every 30, 45, or 60 minutes … all day, all night.

It’s a bit like having a sick infant in the house. After just one night of virtually no sleep, Tom and I are both ZONKED out (hence the hope for a nap).

Meningoencephalomyelitis: Medications

I feel like I need a graphing calculator or a PhD in astrophysics to sort out Lilly’s many medications — when she gets them, how much, why, etc.

  • 6 medicines
  • Some 1 x, 2 x, 3 x per day
  • Total of 12 doses of various things (in some cases at or after meals) between 6 am and 10 pm

I spent the morning calling around to local pharmacies looking for the best price on one of the anti-seizure meds Lilly needs. There was more than $100 difference at different pharmacies. So, let me save any local folks (and maybe others) some time. Costco has BY FAR the best prices on Keppra.

Another of Lilly’s medicines (cyclosporine, used in people to prevent organ rejection after transplants), needs to be compounded into the right dose for her. It’ll be $85/month, and there is a chance she’ll need to be on it for life. Oh, boy.

We’ve already hit an all-time-high veterinary expense in the last week (and that’s saying something for us). Ongoing meds and appointments could really add up as well, but I’m trying not to worry about that.

Meningoencephalomyelitis: Recovery Video Feb. 6, 2012

Here is a link to the latest Lilly recovery video, showing her walking down the hall under her own power. Again, nothing but high praise for the Canine Equipment Ultimate Trail Pack as our primary way of keeping Lilly safe while she walks and potties and such.

29 thoughts on “Recovery from Meningoencephalomyelitis – Lilly at Home

  1. Los Alamos
    February 7, 2012 at 5:49 pm

    Lily is a miracle dog, Roxanne. Look how much she has taught us, from her fears to her snakebites to these current tribulations! I love her spirit and tenacity. She is a true gift, and she is blessed to have your love and Tom’s. Thank you so much for sharing her with us.

    1. February 8, 2012 at 4:17 pm

      Thank you. There were a few days last week where I wasn’t sure Lilly would survive. I know how blessed we are that she did. This next phase won’t be easy, but we’ll get through it.

  2. February 7, 2012 at 4:38 pm

    So happy to see her home. I discovered traction stickers for paw pads in December when Reba had lost all sense of orientation and her ability to control her right hind quarter. They helped her have some sense of stability on the wood floors.

    I also discovered Walmart and CostCo had $4 prescription plans for some of her meds but not all. Costco did have the best prices for the more expensive scripts.
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  3. February 7, 2012 at 2:22 pm

    I think she really looks good considering everything she’s been through. I sure wish I had some of those sticky socks when Zephyr came home. We had the World of Rugs going on in the house. I thought I would tell you about a supplement called Denamarin that’s mainly a liver support, but I was happy to learn that it is also thought to help the brain. Zephyr had his own pharmacy too, and lots of the medicines and treatments can harm the liver. I don’t know what all Lilly’s taking, but I think the chemotherapy at least can effect the liver and if she’s on prednisone or phenobarbital those will. Zephyr started on phenobarbital and was taking 5mg of pred. twice a day along with his chemotherapy. After about 4 months his liver started to be effected. So, he was switched to Keppra, that Lilly’s on, which doesn’t effect the liver. And I started to give him the Denamarin, our neurologist suggested it. It’s from a well respected supplement company and gets good reviews. Like everything, it’s not cheap, but if you search the internet you can find it way below full price. Just got blood work results last week and his liver enzymes, alkaline phosphate, are 190 way down from around 1,000. It’s hard to say for sure how much the Denamarin helped him because at the same time he switched to Keppra and later we started reducing his chemo treatment, and then reduced his prednisone, but I’m still giving it to him and wish I would have started earlier. I also thought it was great that it is supposed to help the brain. Just thought I would let you know about it.

    I hope Lilly and you all are able to get some sleep and she continues to have a great recovery! Sending lots of healing thoughts your way.
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  4. Sam
    February 7, 2012 at 11:50 am

    Would carpet/mats help on the tiles? We used to kid that Cisco was our 10,000 dollar dog (by the time she passed away we had passed 23,000), but it was all worth it!

    Sam recently posted..Work Days at HomeMy Profile

    1. February 7, 2012 at 1:35 pm

      Hey, Sam ~ The tiles are slippery. The company (RC Pet Products) who gave us the amazing backpack (the harness base of which we’re using to help Lilly walk) is sending us some skid-proof socks for Lilly to wear in the house. Stay tuned for that.

  5. February 7, 2012 at 8:14 am

    I’m so glad to hear Lilly is home with her Momma! It sounds like it has and is going to be a long drawn out process. Very exhausting. But I know like many of us, you will do anything if it means your baby will recover. Lilly is lucky to have such loving parents!!
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  6. Debra Jones
    February 6, 2012 at 9:25 pm

    Roxanne, just read your post…so happy to hear Lilly is home with you and yours. I know she is happy as well as you. I pray her recovery continues every day!

  7. February 6, 2012 at 9:24 pm

    Oh Roxanne – I can only imagine what it must feel like to have her home. She looks much better than last week for sure. I know she’s still wobbly, but she seems to know where’s she’s going and does so with a purpose. That is encouraging.

    It must be so hard to see her this way when you have seen her so vibrant and active, but each day seems to bring more progress in the right direction. Being home surely will help her to feel better too.

    I am curious why she would need to be on a drug that prevents organ rejection after a transplant. And, possibly for life? What does it do for Lilly?

    I hope all of you get a good night’s sleep soon.
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    1. February 7, 2012 at 1:33 pm

      Mel – the cyclosporine (anti-rejection drug) is an immune mediator. Since this whole thing happened when Lilly’s immune system was activated by the vaccine, you can essentially consider her almost-deadly response a massive immune system misfire. So, the medicine, which is often used in pets with terrible allergies as well (… again, allergies = immune system on overdrive), will keep her body from attacking itself again.

  8. February 6, 2012 at 8:13 pm

    I’m sooo glad Lilly is home. What an awful experience for your family. Poor Lilly.

  9. Jo's World
    February 6, 2012 at 7:13 pm

    Cheers to Lilly making it home. I agree with those who have said home will have her up and doing soonest. I thought her walking was very good for what she has been through, she appears to be determined to get it right and so she will.

    Jo, Stella and Zkhat

  10. Angela Cranson
    February 6, 2012 at 6:28 pm

    All the very best wishes to Lilly, from Australia.Such a beautiful girl, she seems to have a very strong spirit, to get through this, with such beautiful people taking good care of her. big hugs to you and Lilly! 🙂

  11. February 6, 2012 at 6:12 pm

    Very glad to see her home and mucking about. I will continue to keep a good thought for you all.

  12. February 6, 2012 at 3:07 pm

    Glad to hear she’s home and on her way back to her happy, healthy self.
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  13. February 6, 2012 at 2:37 pm

    I’m so glad she’s home with you. She looks great in the video – yeah, obviously a little wobbly but soooo much better than last week. Good to see.
    Leslie recently posted..Saturday’s dog: Princess the Lab/Doxie mixMy Profile

  14. February 6, 2012 at 2:08 pm

    Hugs for you and Lilly during this trying time – I hope that you are enjoying this time with Lilly now that she is home. *hugs*
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  15. Left Bank
    February 6, 2012 at 2:07 pm

    I was thinking better traction might help Lily on the tile floors, too, but wow! what an improvement from last week.
    This is not an advertisement but if your vet accepts Care Credit it can be a financial lifesaver. I enrolled when I had to have a dental implant and later it got us through our dog’s cancer. It simply allows you to make monthly payments which, if paid off in either 6 months to a year (you have to talk to them about which applies) there is no interest incurred.

    1. February 6, 2012 at 2:16 pm

      Thanks to Left Bank and Stacey for the Care Credit idea. We have an account with them from 2003 (our former record year for veterinary expenses). I did NOT use it this time because the interest rates are OUTRAGEOUS, compared to my other credit cards. Seriously, like 3 x as high as my best personal card.

      It worked great in 2003, though, because they offered me 0% interest for a year, and I paid off Ginko’s two knee surgeries before the interest kicked in.

      1. Sarah M
        February 6, 2012 at 6:26 pm

        So glad Lilly is home & doing well! Care Credit actually always gives you free interest, at least I’ve used it for about 4 years & I always get 0% interest on charges of under $100 for 6 months. Anything over $100 is interest free for a year (not just the first time you use it). But if you don’t pay it off or transfer it to another card by the year, the back-interest will be charged to you & that’s when it gets crazy expensive.

        1. Sarah M
          February 6, 2012 at 6:32 pm

          I went to their website & purchases of $2500 or more are eligible for a 60 month 0% interest. Call Care Credit & see if they can do this for you. I’m sure your vet bill was very high & if you can save interest on it, it could save you hundreds. Ha now I feel like I’m an advertisement… but I’m not :).

  16. Theresa
    February 6, 2012 at 2:05 pm

    So happy to see Lilly doing so well! After everything that she has been through just one week ago, she is doing remarkably well. She will continue to improve now that she is in her own home with her mommy & daddy. Bless you for having her treated. It’s is certainly not easy & so expensive that some people wouldn’t OR couldn’t go through treatment. So BLESS you guys..I always measure a person by how they treat an animal. GOD Bless!

  17. Tamara
    February 6, 2012 at 1:51 pm

    So glad that Lilly is finally home. For the record, Costco usually has the best prices on all pet meds. My vet always suggests I call Costco first (and King Soopers will often match Costco’s price, too). The compounded meds are definitely harder to get. Our vet uses the same compounding pharmacy as VRCC. I’ve had to get some meds through them when I couldn’t find them elsewhere.

    Sending you and Lilly lots of love and hugs.

  18. February 6, 2012 at 1:46 pm

    I’m so sorry you and sweet Lilly are going through this. I can’t even imagine how scary this must have been. I hope she keeps improving and is soon back to normal.
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  19. February 6, 2012 at 1:21 pm

    I think that considering what she’s gone through she’s walking beautifully! Way better than Jasmine could when she came home after a week in the icu.

    Jasmine’s body also kept collapsing and folding in totally awkward ways, we were so worried about her knees. We also had to straighten things out for her.

    I still have the feeling a bit more traction might help Lilly also. Jasmine did way better on rugs, she’d always fall on hardwood.

    I hear you about the cost; Jasmine’s week in the ovc icu came to $12,000.

    I hear you about the meds too. Are you aware of the Wallmart $4 prescription plan? I first heard of it from Dr. Laci of VetLive. (sadly we don’t have that here in Canada) The plan might not have all the meds you need but might have some
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    1. February 6, 2012 at 2:19 pm

      Thanks, Jana. I tried some of the other $4/month pharmacy lists and could not find Lilly’s medicines on them. Honestly, the Costco prices are really, really good.

      1. February 6, 2012 at 8:46 pm

        Glad they are! (they might not be called the same as they are generic version)
        Jana Rade recently posted..Adoption Monday: Kia, Rottweiler, Monticello, NYMy Profile

  20. Stacey
    February 6, 2012 at 1:19 pm

    It’s so great to see you got to bring your girl home! The familiar surroundings will probably help her recover quite a bit better than being stressed at the hospital.
    In case no one mentioned anything at the hospital, there’s a medical credit card called Care Credit that you can use for human medical stuff AND vet stuff. It’s only a good idea if you can pay off the balance before it’s due because you’ll pay a very high interest rate if you don’t. Depending on the amount spent, you can usually spread it over 6 months or more before interest gets applied. It was the only way we were able to afford a multi-night ER visit and cancer treatments for our baby-girl who has since passed. Those medical costs can add up fast for sure! Glad you guys are home and together where you all belong. Sending our prayers for continued improvement and some rest for everyone.

  21. Saoirse
    February 6, 2012 at 1:19 pm

    Good to see her home and walking on her own power, and to hear your voice on the video. You all remain in my thoughts. If I can help with anything, let me know … Rest.