So, I know I haven't updated this blog in a while. Since my last post, Lily has gone from good to a little worse to MUCH better. To the best of my memory, it was mid-May when we thought she was beginning to relapse. We had recently reduced her prednisone, which is usually the determining factor to relapses. Usually, when a GME dog goes below their threshold for prednisone, many times the dog will begin to show the original symptoms or sometimes additional symptoms because their immune system is not able to take over for the pred. See, the pred is what is keeping her immune system running. This whole disease is caused by basically a malfunction in her immune system, where her white blood cells rushed to a site in her brain believed to be attacked by an infection - the reality is that no infection was there, just her white blood cells overreacted, causing her brain to swell and the seizure activity to start. So she is on phenobarbital to prevent any seizure activity, and the prednisone protects swelling in the brain and suppresses her immune system (along with the once-a-month chemo) to keep the white blood cell counts down. The problem with reducing medicine, then, comes when the dog's body cannot cope with the immune system, and once you take away the drug that is helping to suppress it, the dog's own immune system goes into overdrive and symptoms re-appear.
When we reduced Lily's prednisone, I thought (now I know I imagined it) that her eyesight was going again. I also thought she had an infection in her lungs because she was having a LOT of trouble with her breathing. This point in time was allergy season here in North Carolina, so my vet told me to wait it out a week or so and if it didn't relieve itself, we would try something for her lungs. I took her in a week later for a CBC (complete blood count - for the chemo) and the vet listened to her lungs and decided to put her on LASIX to pull any fluid that might have built up on her lungs. Little did we know, but this sent Lily into a tailspin.
When Lily was first on chemo, her hunger was insatiable and she would fight for food and just look at us so pitifully because she thought she was hungry. Of course, we didn't feed her any more than necessary because of the weight gain with the pred. When we put her on LASIX for the fluid build-up, the pred took on the personality of the LASIX (which is meant to make them drink more and urinate more so the fluid in their body is released.) She was literally drinking almost half a GALLON of water a day. She had to go out and urinate at least every HOUR, and as soon as she would come back inside, she drank her weight in water again. It was like she was shrivelling up from the inside. She just couldn't get enough water. Kevin and I spent about three days with her like this, and I eventually decided to take her off the LASIX, even without consulting my vet. The problem was that Kevin and I were afraid the poor dog was going to have kidney failure or kidney shutdown because of the amount of urination she was doing. It was at this point that I tried to contact the neurologist in Charlotte to get his opinion on what we should do. We spent two agonizing days deciding whether or not this was God's way of telling us her path had ended here. Even after removing the LASIX, NONE of her urination and drinking issues went away. Like I mentioned, instead of hunger, now the prednisone changed course and showed itself in thirst instead. She was driving us CRAZY! I was literally sleeping on the couch just so Kevin could get a good night's sleep because she was waking me up every hour to hour and a half to go out. It was miserable. We finally got in touch with the neurologist in Charlotte, and went down that night to see him. Remember, at this point, we were so emotionally raw and exhausted from lack of sleep. We also were praying and hoping for answers about whether it was time to let her go; if the disease had taken over we just didn't want her to have to live this way and be miserable!
So we go to Charlotte, and after running some bloodwork and doing some physical tests on Lily, the neuro calls us in. We were relieved to find out what he told us. He basically told us that to him, she looked GREAT for a dog with such a serious disease. He instructed us that it was NOT time for her to go, quite the opposite really. He told us he was fairly confident that Lily could pretty quickly be weaned off the prednisone, because that is what is causing her frequent urination and drinking issues. He also noted that the phenobarbital (for seizures) could be contributing to all of this. So, long story short, he put us on a stringent reduction plan and gave us explicit instructions on how and when to reduce. We knew this could come with some complications, but there are also additional drugs that can be substituted instead of pred that accomplish the same basic concept in her body, aside from taking away the swelling.
Once we left Charlotte and returned home, it did take a few weeks for complete relief to come from overnight bathroom runs. The way he instructed us to reduce her was to give her "x" amount only in the morning. By this, she wouldn't continue to wake us up at night every hour to go outside. He was completely right about it all. From the third or fourth day that we brought her home, she fell into that pattern quite easily, and continues to this day.
The other problem that her constant drinking was causing was that she can't be crated during the day because she wets in her crate and we were constantly having to wash her blankets and bed. Kevin helped me build a three-sided hinged plywood "pen" for her that butts up against our cabinet. We left enough room for newspaper, water bowl, and her bed/blanket in there. For the first few weeks, we were using newspaper, but that was causing smelly issues and so Kevin thought to use a chamois to soak up the urine, then just wash them out. That worked for a while, but we were mopping the floor each night for where the chamois leaked through. Next, Kevin found an old plastic pan at the shop that the chamois fit nicely in. Ever since, she uses the chamois in the pan with no problems. She has "escaped" from the pen several times to poop on the floor, but then she goes and climbs back in the bed and crouches when we get home cause she knows what she has done!
Fast forward to now ... over the last two months, Lily has gone from take 2.5ml pred in the morning, and 1.25 at night to .375 only in the morning. I know that doesn't seem like that much difference, but if you saw it in the syringe you would understand. She is doing SO well! A couple of weeks ago, we also reduced her phenobarbital because we (the vets and I) are of the belief that the seizures only occured because of the swelling of her brain. It is a huge relief for her to come off of this medication, because both pred and phenobarb can cause liver damage if used long term. As we stand right now, it looks like she will be off all meds but chemo by September, which will be a huge accomplishment.
It makes me feel like a proud Mommy to see how well this little angel has done throughout this disease. She is definitely a fighter, and I love her so much for that.
Her personality is back full force, playing, whooping toys, barking at any little sound outside, and returning to the Lilydog we know and love. We have loved her all along, but the fiesty side of her makes her Lily!
Hope to update sooner than later with the great news that she is off all meds!
Praise GOD above - He is the one that has given her to us to take care of and has laid His hand on her brain to make it better!
Love that Lilydog!
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