Louie's story, part 6: Major setback, home cooking, and another remission

Louie held his own that night, and so in the morning my husband took him to UC Davis veterinary emergency where it was determined that he had not been vomiting blood but, in fact, had bloody diarrhea associated with colitis. That surprised me, as he’d been vomiting earlier that evening, but Louie always seems to be full of surprises.

One thing I had noticed earlier that day was that when I opened his can of prescription food, the food looked a little different. I started to suspect that we’d gotten a bad batch of food.

The vets at UC Davis didn’t seem to agree with this theory, saying that no one else had complained about the food. They wanted to keep him overnight, and they did some bloodwork and gave him some antibiotics, all the while feeding him the same food that I suspected had made him sick. The bloodwork came back with indications that both the pancreatitis and the lymphangiectasia were flaring up again. The vet at Davis returned him to me the following day, rather sheepishly admitting that they hadn’t helped him very much by keeping him there. He no longer had blood in his stool, but that was the only real improvement. I talked again with her about his food, and she suggested we try a home cooked diet along with some Tylosin to see if perhaps he would improve with a different food.

We’d had several similar overnights since his initial diagnosis (though this was the only one with colitis) and I sadly decided at this point that I was no longer able to take him back to Davis so frequently. It was expensive, stressful for both Louie and me, and by now we never seemed to learn anything particularly helpful or new from all the expensive testing that I couldn’t ascertain on my own through observation. I had wiped out over $10,000—my entire savings--on his medical care already, and his prescription medications were costing close to $500.00 a month. I never wanted to make decisions about his health because of money, but it wasn’t clear how I could continue to sustain the expense of his care if I did not make some changes. I began to worry about what would happen if I could no longer afford to care for him.

I vowed then that we would only go back to pick up medications and food, or if we saw symptoms that were completely new to us. Louie would make it, or he would not, but throwing more money at the problem simply wasn’t useful anymore. I spoke with his vet and let her know that I felt I was reaching a financial limit with his care and asked if I could trust her to advise us over the phone if we had repeated bouts of similar symptoms, and she agreed. She had already talked me out of euthanizing him once, early on, when I was at my wit’s end with a particularly bad relapse, and watching him suffer was getting the better of me. If she thought he had any chance of making it through to a decent quality of life again, I would do what we needed to do.

We had the nutritionists at UC Davis formulate a diet for us, and I began cooking for him at home. The main ingredients in this diet were white rice, chicken and a supplement. I fed variations of this diet for several months, but it never really agreed with him. His stool was loose and yellow, and he continued to seem weak. His legs became wobbly and he would tremble, especially at mealtime. He started shaking again after eating, and developed new lesions on his skin. It was also during this time that he began developing corneal lesions on his right eye and losing sight in both eyes, and so despite our financial situation we did, indeed, end up taking him back to Davis for yet another specialist to evaluate yet another new set of symptoms.

I had thought that perhaps the nutritionist’s diet as formulated was still too high in fat for him, so I’d been attempting to get more and more fat out of it, but clearly nothing was working. In addition to the eye problems, he developed blisters on his skin, which I thought might be due to the lack of fat in his diet.

In a fit of frustrated desperation I went rummaging in the cupboard one night and found an old, dented can of the prescription food that I’d apparently set aside, thinking it might be too hard to open. I got it open and began feeding this again, adding a small amount of probiotic this time. To my surprise and delight, he rapidly began to improve. I bought more. Whatever it was that had been the problem with the prescription food seemed to have been resolved and, once again, we were on our way. It was now late January, 2009, almost a year since that first bout with pancreatitis that had preceded all of our troubles.

Louie's story, Part 5: Rabies Vaccine Induced Ischemic Dermatopathy

I wanted to back up here for a moment and talk about the skin problems Louie has had. As I mentioned, at about the same time the pancreatitis and lymphangiectasia started, we were also seeing some very disturbing problems with Louie’s skin. We’d consulted an independent dermatologist who suspected an immune-mediated disease related to his most recent rabies vaccination, and indeed this was confirmed by the dermatologist who saw him at UC Davis.

The full name of this condition is rabies vaccine-induced ischemic dermatopathy, and it is one condition that can result from overvaccination with the rabies vaccine. I’ll be adding more information here over the coming weeks about this condition as well. You can see from the pictures of Louie to the right what the disease does; at the top is the crusting on his ear pinnae, which continued like this until much of the red area you see in the photo eroded away. Below that is a picture of the vaccine injection site many months, or perhaps a year or so, after the vaccine was administered. This photo actually shows the site after it had healed up quite a bit; at one time the entire darkened area was open and oozing. (Louie is a Chinese Crested, so he's hairless on most of his body. The hairlessness is just the way he is, but the blackheads and other lumps you can see on his legs in this picture are due to malnutrition from the intestinal disease.)

What has intrigued me about this disease in Louie's case is that it had its onset at the same time as the life-threatening intestinal problems.

For more information about issues related to rabies vaccine, please see the Rabies Challenge Fund, and consider making a donation, if you can.

Louie's story, Part 4: A label, and progress

So now we finally had a name to put to some of this discomfort. Louie still had other problems—the skin problems, the diagnosis of Cushing’s disease—but we at least had an inkling about the gastrointestinal distress that was plaguing him and threatening his life. I was so relieved; it wasn’t cancer!

My euphoria at that bit of news was short lived, however, as I began to read all I could find about intestinal lymphangiectasia in dogs. What I learned was both troubling and inconsistent. Reports about prognosis ranged from “guarded” to “poor.” Other sites said that the disease can be managed, in some cases, but not cured. Still other sites offered more hope, saying that the disease can sometimes be secondary to other problems, and that in those cases resolving the primary problems will cure the disease. Many reports talked about owners euthanizing their pets within the first two years after the diagnosis. At least one page I landed on said that no animal had been reported to have lived beyond two years with the disease.

My online friends at the Chinese Crested site I frequent rallied around us again, as they had been doing all along, and there I learned of at least one dog, a friend’s Yorkie, who had the same disease and was still going strong eight years after being diagnosed. This gave me needed hope. We increased his daily cyclosporine to 50mg twice a day, a whopping 10 times the normal dose for a dog his size. I started Louie on the low fat prescription diet that was recommended. The vet said that I should notice improvements after about a week, and indeed, I did soon notice some very slow, incremental changes.

He was so weak to begin with that the improvement took a long time. Over the next few months we saw nothing too miraculous, just a slow and steady increase in energy, but to me, these were huge things. There was the first time he sat up in his bed with his head up for more than a moment and looked around as though he were finally engaged with his surroundings. The first time he got out of bed on his own. The first time he came by himself into the den and wanted me to pick him up. The first time he got up on the couch by himself again. The first time he jumped into my lap again. The first time he wanted to stay in my lap instead of going back to his little bed. The first time he wanted to walk around a little bit in the back yard again.

He was still skin and bones, was clearly still “out of it” in a way, but it also was clear that he was improving. We continued to have incidents of vomiting and diarrhea, I still frequently had to clean up poop and give him a bath when I’d come home from work, but things were getting better.

Louie usually slept with us in the bed. I’d hold him next to me so that I could feel his movement in case he needed to get up and go outside to poop or pee in the night, which happened frequently. Sometimes he’d vomit, and sometimes I’d have him sleep on pads in case he made a mess, to make it easier to clean up. One night he got quite sick, and after cleaning him and everything else up, I decided to put him into his crate, because I was very tired and really needed to sleep.

After a couple of hours, I got up to check on him. The scene in his crate was horrifying. He sat, calmly, in the middle of his bed, and there was blood everywhere. Blood on the walls, blood on the floor, blood all around the edges of his bed. I woke up my husband and told him that Louie had been vomiting blood. We called UC Davis emergency and they told us that, if it happened again, we should bring him right away, and otherwise to bring him in the morning.

Louie’s story, Part 3: At last, an answer

Because I live in Sacramento, I am not too far from the veterinary teaching hospital at UC Davis. During the time we were struggling with Louie’s problems, I began talking with a co-worker whose dog had, years before, had similar symptoms. Her dog had been worked up at UC Davis and diagnosed with lupus.

Through her, I was able to connect with one of the faculty there and get a recommendation for a vet in their Internal Medicine department. As she is also faculty, I had to wait a month to get an appointment with her, but in June of last year (2008) I bundled Louie up and took him to UC Davis for the first of many visits there.

She examined him, sent him to their dermatology department for additional examination, and then spoke with me about her recommendations. They could take some educated guesses and do minimal testing to try to pinpoint what was wrong, or they could do what she called the “gold standard” with a full blood panel and comprehensive testing. Tired of wasting money on guessing, I chose the more expensive gold standard. I left him there for tests and went back home for a few hours.

After a full day of testing, the vet called me back to the hospital to report on her findings. She said that his intestines were abnormally swollen and “rope-like.” Ultrasound revealed what appeared to be a diffuse mass in the intestines, and there were other anomalies with his internal organs on ultrasound as well. His bloodwork indicated anemia and other abnormalities that could be associated with cancer. She recommended either exploratory abdominal surgery (which she preferred), or an endoscopy.

I asked her, should they find cancer during the surgery, if they would be able to remove it at that time. She said that, if that were the case, they would close him back up and concentrate on palliative care. She did not think this was any sort of mass that could be removed.

Because of the condition of his skin and some prior, inconclusive test results, she also wanted to test him more thoroughly for Cushing’s disease before deciding which option would be best, but that test would take another full day. If he had Cushing’s, the surgery would be out and endoscopy would be preferred. We made an appointment for the Cushing’s test, which was weakly positive, and erring on the side of caution we made the decision to go for the endoscopy.

After the endoscopy, I spoke again with the vet, who said that the examination had revealed some granular-type tissue and inflammation in the small intestine. She had taken a biopsy and sent it off to the lab, and did not want to speculate about the likelihood of cancer until the pathology report came back. The week which followed that test was one of the longest of my life. However, at the end of that road we finally had a name for his digestive troubles. It was not cancer. Louie had a disease I’d never heard of, called “lymphangiectasia.”

Louie's story, part 2: A long six months

Louie's pancreatitis came on just after the vet had prescribed some medication for what we assumed were allergies, and we all then naturally assumed that the steroid in the medication had triggered the episode. We put him on a low fat diet (Hills i/D), weaning him slowly back to normal meals after an overnight stay in the hospital on iv fluids. This after three days of vomiting at home.

He seemed okay, more or less, for a few days, but he never really seemed to fully recover. He would vomit on occasion, sometimes a lot, sometimes a little. His stool seemed normal but he has a habit of going back into the brush to do his thing, so I didn't always get a good look at what he produced. Sometimes it seemed like he had a bit of diarrhea.

It is hard to remember everything that went on during this time. He started to lose weight-- a lot of weight, rapidly. He stopped drinking water and I had to add water to his food. He had a hard time holding his food down, and he began to have loose stools in his crate. I would often come home to a crate full of diarrhea and vomit. After meals, he would shake uncontrollably. Our vet, believing him to be in pain from smoldering pancreatitis, prescribed strong pain medications, but nothing made the shaking go away. He became increasingly weak, no longer following me around the house and eventually retreating to the bed in his crate full time. I had to pull him from his crate and carry him outside to do his business or to eat his meals.

His ear leather continued to discolor, and then began to crust and scab at the edges, and the dermatologist we took him to see then suspected his rabies vaccination was the cause. He also had swelling at his shoulder, at the vaccination site, which several months earlier we had biopsied, fearing cancer. There was no cancer, but the wound at his shoulder continued to worsen, until he had a large, open, oozing area there. There was another wound on his left hind leg which would not heal, and this wound looked like some sort of insect bite.

The pads on his feet cracked open and also would not heal; it became so painful for him to walk outside to do his business that I went out and found little vinyl booties to put on his feet to protect them, and he wore those booties for months. The skin at the end of his nose also became discolored.

Our vet began to suspect some sort of autoimmune disease and mentioned lupus. I did a lot of reading about lupus, and became convinced that this was his problem.

His test results were consistent with pancreatitis, and he also had high liver values, which was worrisome. At around this time we also started to see anemia and low albumin levels, which our vet believed was due to the blood loss from all the weeping wounds he had.

As if that weren't bad enough, the skin on the back of his front legs began to slough off.

Our dilemma was serious. The treatment for an autoimmune disease like lupus would normally be prednisone, a powerful immunosuppresant and anti-inflammatory drug, but we dared not give him that because it also is known to aggravate pancreatitis, and another severe flare-up of that could quickly take his life. We were stuck. He was very sick, rapidly getting sicker, but his vets were reluctant to treat him for fear of making him sicker still.

At this point I began to read up on immune-mediated diseases and immunosuppressant drugs. Louie's condition was bad; he was just skin and bones. Then one night he shook so hard all night long that I was certain he would not make it through to morning. I held him, I cried for him, and I cried in frustration and wept bitter tears at not being able to do a single thing to help him. My husband stroked him gently on the head and whispered to him that it was okay to go, if this was his time. Yet, he held on.

He made it through that night, and the next day I went in to see the vet and told her through my tears that I knew in my heart that he was dying, and that he was certainly going to die if we didn't at least try something. I felt that we had little to lose, that if we tried something that ultimately took his life perhaps that would be the more merciful outcome, but we would have at least tried, and she agreed. She asked me if I wanted her to prescribe some prednisone and I said no, I wanted to start him on cyclosporine. I'd been reading a lot about this particular drug, and it seemed logical to try it. She did, and I left with a two-week's supply of cyclosporine.

That marked the very beginning of our long road back, but we still had no idea what was wrong, and there was a long way left to go. Within a day of beginning the cyclosporine, the shaking stopped. He rallied for a time, and started to do much better, but this would only be a temporary respite. After a month of remarkable recovery, he began to decline again as the disease processes tightened their grip on him. We had helped him a little, for a time, but he needed much more help than this. It had been six months, and now we were out of answers.

Louie's story, part 1: How it started

It all seems to have started with a bout of pancreatitis, back in February of 2007. In truth, it started long before then, and although the alarms were there and I tried to be proactive about getting him care, no one but myself thought there was anything wrong.

I started dragging Louie to the vet the previous fall, when he began licking his feet, and I thought he had allergies. Prior to this I had taken him in once because he had some blood in his stool, and once after that because I thought his eyes looked funny. Hard to say exactly how, but they just didn't look right.

With the "allergies" he also had red rings around the outside of his eyes, which I assumed were also part of the allergy symptoms.

None of the vets I took him to could find anything wrong with him.

At around the same time, his skin began to deteriorate. A hairless dog, he was becoming covered with blackheads and large bumps. I can assume now that these were from malnutrition, but at the time I didn't have a clue. The truth is that his skin had started looking bad several months prior to the onset of other symptoms, but I chalked it up to age. I chalked a lot up to age back then. I tried some of the remedies for bad skin that I had read about online, and I had tried some things that had cleared up similar problems in one of my other Chinese Cresteds, but nothing helped, and instead he just kept getting worse.

Sick of getting no answers, I eventually took him in to see a new vet about the "allergies" and was given a prescription for a medication with a small amount of prednisone in it. It seemed to help him for a few days, but then, one night in February of 2007, after eating a fairly large dinner, he began vomiting. He vomited all night, and between vomits he just sat in my lap, shaking. We went to the vet the next day and he was prescribed an anti-nausea medication and something else, I don't remember what. After two more days of vomiting up just about everything he ingested I was very concerned about dehydration, so we rushed him to the vet again. This time he was diagnosed with pancreatitis, and had to spend an evening in the hospital on IV fluids.

That was the start of a frantic six months, during which symptoms of several concurrent conditions would make it hard to tease out just what was going on with him.

Intestinal lymphangiectasia

I have noticed that there are quite a few hits here and at the Save Louie website (www.savelouie.com) from people who have done searches about lymphangiectasia in dogs, or lymphangiectasia and low fat diets. I hope, over the coming months, to make this website a better resource for those of us who have dogs affected by this unusual disease. As a start, we've added links to some informational pages on lymphangiectasia, and I'll be continuing to update those links. I'm also beginning a series of posts to describe what we went through on our way to this diagnosis, as it is my belief that many cases of this disease go undiagnosed.

I ask for your help. Let me know what I can do for you to make this site a better resource. Leave your comments, or send me an e-mail.

Tofu Success

It's been less than a week since I started the tofu trial and I'm ready to declare victory! We've had virtually no reaction to it at all, which is very welcome news for him.

I e-mailed his vet at UC Davis this week to let her know that we've found a protein source that he can eat. This will greatly reduce our dependence on the discontinued product from Royal Canin and allow us to stretch what we have for a very long time, with the goal of ultimately moving him toward a diet that doesn't contain the canned food at all.

We are really happy. Louie is looking and feeling better than I've seen him since this whole ordeal began, back in the fall of 2007. It's hard to believe that we have been dealing with these problems for close to two years. So many times during those two years I did not think he was going to make it. I agonized more than once over the decision to euthanize him but could not bring myself to do it. I am so glad I did not.

Tofu

We're on the third day of the tofu trial and things are going really well. He had a little diarrhea earlier today but then had a nice poo later in the day, which is a great sign. No other problems to speak of and his energy level is really, really good.

We may have a winner... I will certainly be relieved if we do!

Tongol result

The tongol trial had mixed results. He did not respond as poorly to it as he has other foods, but I never saw any indication that the diarrhea was resolving with this protein added. A lot of the usual bad signs, like vomiting, rumbling stomach, flatulence and others so unpleasant I won't go into them here did not occur with this trial. It might be that we only tried with very small amounts or it might be that he'd adjust to this protein source over enough time.

So, Tongol is officially on the shelf for trial if and when we need it at a later date. Promising, but not quite there.

Next up: Tofu.

Food Drive Back On

I have decided to restart the food drive in the hope that some of the food we need remains available on shelves somewhere out there. For anyone stumbling upon this site who wants to know, the food we need is Royal Canin Digestive Low fat, with FISH as the first ingredient. They have changed the formula for this food, so what is being made now does not have fish, but contains chicken and pork, which Louie cannot eat. It's very important that we get the cans that have fish in them.

If you find this food, buy it, and I will purchase it from you. I have a prescription if it is needed. Contact me at Louiesmom@savelouie.com and we will work out the details.

Thanks for any help or effort you can give. It will mean a lot to this little dog.

Tongol update

I don't want to jinx it, but he seems to be tolerating the tongol tuna better so far than he has tolerated anything else I have tried. Today is the third day of the trial and we have not had any stomach rumbling so far, or any malaise that would indicate he is not feeling well. We did have a bit of a greasy-looking poo this morning but that may well be temporary as we also had this when we went from the cut version of his regular diet back to the full-strength version.

He's also been coughing a little today, but so far he has not had any vomiting. I did increase the amount of tuna in his meals slightly today and, if he continues to do well, I'll continue adding increasing amounts of the tuna until I can get him to a diet that is 1/2 canned tuna and 1/2 royal canin. At this point I think we'd stay with that for a time, until circumstance forces us to transition him all the way to a homemade diet using the tuna as a protein source.

Perhaps I am overly optimistic, since we've had so much trouble with him in the past, but I know that there's got to be something he can eat. Hopefully this will be it.