Saturday, December 26, 2009

Soy Protein Powder

I went online a few months ago to compare the protein content of meats with that of tofu, in order to get an idea about how much tofu to add to Louie's meals.  From what I could tell, meat has a larger percentage of protein, so the amount of tofu I need to give him would be greater than if I were feeding meat.

A few days ago I found a soy protein powder in the store and decided to buy it to use as a supplemental protein source when I prep his food.  As with anything new I try for him, I started out with a small amount and observed him.  Even though tofu is also soy protein, you never know what else might be in there that could trigger a reaction.

He did well with it, so I added it to the batch of food I just prepared for him.  So far, so good!

Friday, December 25, 2009

Happy Holidays

We've had a pretty good year, and this morning, before I arise to mess up the living room with wrapping paper, I thought I'd reflect just a little bit about just how good it has been.

Keeping to the main theme of this blog, we've managed to overcome a few hurdles and get Louie back in the game once again.  This was no small feat, and required the help of many strangers and cyber-friends throughout the continent of North America.  Thanks to their (your) efforts, I was able to purchase over 500 cans of a food that is no longer being made (at least not in the way it was made before) which was the only food we had found that Louie could eat.

Thanks to the time that bought us, we were able to do sufficient diet trials to find that Louie could eat tofu, and that we could mix tofu with a balanced, dehydrated base to create a protein rich, balanced meal for him.  Mixing that with the food we have in storage will likely keep him going for the rest of his natural lifespan, if we're lucky enough to not encounter another major relapse in his lymphangiectasia.

So, we have received the best gift of all for this holiday season:  The gift of life and love and the continuing companionship of my dearest and best friend.  Louie has been with me through a lot; in 2006 I packed him up into my little Subaru with whatever else would fit in there, and together we crossed the continent to start a new life in Sacramento, California.

And what a new life it has been!  I have met and married a wonderful man, begun a new career with the University of California, and managed to put some unfortunate baggage into the past.  Our lives are not without stress, and far from perfect, but things are relatively stable and sane.  Louie has been a big part of my life, all the difficulties that preceded the move (and the joyfulness before that, too, which seems distant, but is still remembered).  He's been the one consistent thing in my life when everything else seemed to be falling apart.  So it is a great delight to see him sitting here next to me on this fine, Sacramento Christmas morning, knowing that the worst, for him too, may actually be over.

From my heart to yours,

Happy Holidays!

Saturday, December 19, 2009

Protein Losing Diseases in Dogs

This article talks about Protein loss in soft coated wheaten terriers, one of the breeds known to be predisposed to these diseases.

http://www.cvm.ncsu.edu/research/SCWT/ple.htm

Friday, November 20, 2009

Quick semi-update



Things are relatively quiet on the lymphangiectasia front.  We were fortunate to have the opportunity to get away for a few days last week, and it was good to know that our kids were all well enough that we could leave them with the pet sitters without much concern or worry.  The last time we got away was just after Louie had stabilized into his first remission, but he was still quite a bit sicker then, and the worry factor was a bit higher.  This time, we really did get a chance to relax.

We went to an area off the Pacific Coast, just outside of San Francisco, called Stinson Beach.  From there we drove to Muir Woods and hiked in the Redwood forest, and then drove southward to Bolinas, which is a funky little beach town that is home to a rather reclusive artistic community.  We walked along the beach and took some pictures, and had a lovely time.

Upon our return I was very pleased to see the kids and they were all quite well.  What a relief from a year ago.

Tuesday, November 3, 2009

Message for Scott, who e-mailed me

Hi Scott,

I've tried responding to your e-mail, but it bounced.  If you would like to add me to your trusted users list, I'll try again. 

thanks,

Louie's mom

Saturday, October 24, 2009

Another Loss

This is for Parker, one of the beloved dogs belonging to a member of the lymphangiectasia support group.

Rest in peace, little one.  You are free now.

Research Study at Cornell needs Yorkie participants


Researchers at Cornell University are seeking Yorkies to participate in a study which seeks to better understand the genetics of protein-losing enteropathy (PLE) in the breed.  Lymphangiectasia is classed as a PLE and is known to be genetically transmitted in Yorkshire Terriers and certain other breeds.

The researchers will examine blood samples from healthy Yorkies as well as from Yorkies with a verified diagnosis of PLE.  They will send a kit for you to take to your veterinarian for collection of samples, along with a package for mailing the samples back to them.

If you have a healthy Yorkie or a Yorkie with a confirmed diagnosis of lymphangiectasia, you may be eligible to assist Cornell with their study.  Eligible dogs must have a known pedigree of at least three generations.

A flyer is available here 

This research is a collaboration between Dr. Nathan Sutter
PhD, Dr. Kenneth Simpson BVM&S, PhD, and Dr.
Melanie Craven BVM.
Please contact sutterlab@cornell.edu or 607-253-3592.


Please note that this is not an offer of free diagnostics.  The research team will examine samples for genetic information and is not able to tell you if your dog has PLE.  Please see your veterinarian if you suspect your dog has this disease.

Thursday, October 22, 2009

Lymphangiectasia and eye disease?

None of the literature I have read has talked about eye disease in conjunction with lymphangiectasia in dogs.  However, it seems to happen in humans with the disease.

Louie has eye problems and the ophthalmologist at UC Davis could not really tell us exactly what was wrong.  He thought the problem is "autoimmune in nature" but could offer little more than this.

Interestingly, it appears that his eyesight may be improving alongside some of his other symptoms.  I recently discontinued his cyclosporine for a few weeks, and started it again when he developed skin problems.  His eyes also worsened while he was not on the drug, and have gotten a bit better since starting it again.

This disease, along with the vaccine induced disease, poses such mysteries.  I would love to see some of these questions answered.

If you have a dog who has lymphangiectasia and eye problems, leave a comment, or drop me an e-mail.

Thursday, October 15, 2009

Cyclosporine use in Lymphangiectasia

Several weeks ago I was asked about our use of cyclosporine for the treatment of lymphangiectasia.  I did not have information at my fingertips then, but have recently stumbled again upon a WSAVA presentation from 2007 which talks about its use in treating intestinal disease.  Specifically, the paper states:

"A recently published study documented the therapeutic benefit of cyclosporine (5 mg/kg SID for dogs with IBD refractory to prednisone therapy. "

A footnote, for those with access to the scientific literature, points to a study in the Journal of Veterinary Internal Medicine (which I haven't read) from 2006, cited as: Allenspach K, et al. J Vet Intern Med 2006;20(2):239-44.  I'll be taking a look at this study next week when I'm back at work, where I am able to download journal articles.

The WSAVA paper also talks about why the use of medium-chain triglycerides is no longer being recommended.  This is not to suggest that anyone should stop using them if they're having success, but rather to reassure those folks like me who wondered why they weren't told to use them.  The WSAVA paper is available at this link:





Saturday, October 10, 2009

Thoughts about diet

My thoughts today are centered around food.  (Aren't they always?)  It's so important to remember that the biggest key to management is a very low fat diet.  Many so-called "low fat" diets are not anywhere near low enough, in my experience.  Adding treats and toppers to the diet, switching out ingredients, giving rawhide or any chews that might contain fatty material, all of this needs to be strictly avoided.  I've heard of people strictly regulating diets but giving rawhide, which is full of fat.  It's important to think of everything that goes into your dog's mouth in terms of its fat potential.

I can't stress enough that even small amounts of fat can trigger a relapse or worsening of the disease, so vigilance over the diet is very important.

Thursday, September 24, 2009

Counting our blessings

Louie wasn't sick last night, nor was he sick today.  Instead, we went for a nice long walk through the neighborhood.  I confess that it's been quite a while since I had Louie out for a good walk; we're a bit spoiled with having a nice big, wooded yard with a fence, where the dogs generally romp and roam to their hearts' content.

Back when Louie was first getting sick, I tried to walk him a few times but he was getting weaker, and then he had skin problems that affected the pads of his feet, so we got to a point at which going for a walk was unthinkable.  Today, as I put his collar and leash on, I wondered if he'd get tired.  Instead, he walked for a good half hour, stopping to check all the neighborhood "pee-mail" and generally just enjoying life.

On our way back, as we approached the house, we ran for a little bit.  Louie doesn't see too well, so he had a few hesitant moments, but then he broke out into a full trot and we headed down the final stretch together.  It was so heartwarming to have him out there again, just being a normal dog with normal dog energy.

We are blessed, in so many ways.  We have a lovely home in a nice neighborhood where I can take the dogs out if I want and walk without fear.  We have wonderful dogs with whom we share these loving bonds.  We have steady jobs with decent pay, and jobs that we like.  It's not a bad life.  I've lived through far worse, so I have some pretty good points of comparison.

The past year or so was framed by the uncertainty about Louie's health and his condition.  Today we are relaxing, just a little bit.  Life is good.

Wednesday, September 23, 2009

Got to be careful with food

Tonight Louie had a triumph.

My husband made a hamburger, and then the phone rang.  He put his hamburger down on the stand next to his chair and answered the phone.  I turned around just in time to see Louie with half a bun in his mouth.

I pulled the bun away from him; he'd only gotten one bite (complete with mustard) but I know that even that bite can be enough to trigger symptoms in him.  So we'll watch him, and we'll see what happens, and maybe he'll have a bad night, but hopefully it won't be more than that.

I do have to say that he looked pretty proud of himself for getting away with something, though!

Monday, September 14, 2009

Happy Birthday to my Little Man!

Louie's 12th birthday is this week.  To be honest, I cannot remember if it is today or this coming Thursday, since his sire's birthday was the same week and I always got them mixed up.  No matter, 'cause we can celebrate all week long! 

And, we should.  This is the birthday I didn't think we would ever see.  What better reason for a week-long celebration and marathon loves-and-snuggle-fest for my bestest little boy?  I only wish I could give him a little birthday cake, too!

Saturday, September 12, 2009

Almost ten pounds!

Weighed Louie again today.  He's almost up to 10 lbs.  If we can manage to get another pound onto him he will be where he was before all of this started.

He still looks thin to me, but I can feel that there's some meat on his bones now.  There was a time when I'd touch him and all I could feel was bone.  By now he has regained most of his muscle mass and tone, and though I can still see his ribs and his tailbones, it is nowhere near as jarring a sight as it was last year when he was down to almost 7 lbs.  He looks quite healthy today.

Thursday, September 10, 2009

What's working for us right now

I don't want to create false hope here, but I know that there are people coming here who are desperate for any information about what might help their own dogs.

I want to make sure everyone who is searching can find the information about what is working for us right now.  This is not an endorsement of a particular product or feeding regimen or treatment or anything else either medical or scientific.  It is simply a report of what seems to be helping us right now.

This is what we are feeding:

a 50/50 mix of Honest Kitchen Preference (hydrated) and tofu
combined with the fish based old-formula Royal Canin Digestive Low Fat canned.

I believe that Louie would do okay at this point if I had to feed him only the honest kitchen with the tofu added.

We also add a small amount of probiotic to this.

Again, this is not an endorsement or a recommendation, just a statement about what is helping us right now.  Maybe it will help someone else, too.

Wednesday, September 9, 2009

I hate this disease


Someone contacted me today, someone who had originally contacted me just a few days ago to ask if there was anything I could do to help her with her dog who has this disease, lymphangiectasia. I offered what little bit I could, but it wasn't enough. In today's message came the sad news that her dog lost his fight against the disease this morning.

I am heartbroken. I want this site to be a place of hope, but I also understand that, for some, there will be no answer. That is a cold reality which is sometimes hard to bear. This disease will take and take and take, and the clock ticks, the muscles deteriorate, the body robs from itself in an effort to keep itself going.  Days, then weeks, then months can pass without any answers, and there are no guarantees that any of us will find the answers we need in time to help them-- if there are even any answers to be had.

Tonight I lit a candle in honor of this poor little one who did not make it. Rest in peace, dear one.

I hate this horrible disease.

Friday, September 4, 2009

Summer coming to an end

Summertime is the best time of year for the naked dogs. I have two; Louie is not the only Chinese Crested Hairless around here. My other boy, Toui (short for Ratatouille) is also a hairless, though he and Louie are miles apart from one another when it comes to personality. Still, one thing they both love is sunshine and warm weather.

No one knows for certain what the origins of this breed are, but it's most likely that the breed evolved from an African dog, hence their preference for the hot weather. Sacramento is a much more suitable home for Louie than Pennsylvania was, and certainly is more suitable for Toui than Cleveland, which is where he was found one cold December day, running around with no fur and no coat trying to scavenge scraps from someone's trash can. Toui's a rescue.

Last summer was his first summer with us, and we were all so preoccupied with Louie's illness that it was hard to get outdoors and do anything. Well, that and the fact that our back yard was under construction while we had a new cement deck put in. Poor Louie had so many wounds on his skin back then that I couldn't leave him alone without some clothing on to keep him from scratching open the wounds that were so difficult to heal.

This year has been a big difference. We've had some nice sun, we have our backyard back with use of the pool again, and we have some happy and healthy dogs enjoying the hot weather. It's almost over, but I'll post a few pictures of our summertime fun. Enjoy!


My two boys lounging together on the new deck


Louie telling me to get off the laptop and go get his dinner!

Toui's just a little lazy on a nice, summer day :)

Sunday, August 30, 2009

Still doing well!

Louie is still doing really well on the combination of Honest Kitchen, tofu and the stockpiled canned food. I am relieved that we have found something else that he is able to eat, as is he. The Honest Kitchen is rather high fiber, which I expected would irritate his intestines, but he does okay with it. He does need to go outside more frequently.

Blessedly, there's not much news other than this. It feels nice to relax a bit.

Tuesday, August 25, 2009

9.6 Pounds!

Slow and steady wins this race. I just weighed Louie and discovered that he's up to 9.6 lbs. That's about a full pound heavier than he was the last time I weighed him! It's very slow, but he's gaining steadily. This is just wonderful news for him!

Tuesday, August 18, 2009

Another 112 cans on the way

Thought I'd update here on the canned food; though we ended the Save Louie food drive, I still have more food on the way. One of our friends from Chinese Crested Crush managed to find 88 cans and they are on their way here. Another friend here in Sacramento was able to get one more case from her vet, and I'm just waiting for a time when we can get together and I can pick up the food. That's another 24 cans. Thank you, Sarah and Cynthia.

So, it looks like we've got another 112 cans coming. I'm not doing the food drive anymore, but if anyone finds the Royal Canin Digestive Low Fat with FISH as the first ingredient and does not mind shipping it to me (at my expense) I will still buy it. Can't hurt to have as much as possible.

Trying something new

I'm recently a bit concerned about Louie's health, as I've been stretching his food by adding fairly large amounts of the tofu since we discovered he could eat it, and it is starting to show in his skin that his nutrition is not optimal. I suppose it could be the lymphangiectasia flaring up, but he seems to feel pretty well, and other signs aren't present so I believe it is more likely being caused by the fact that he's not getting a completely balanced diet with the added tofu.

I'd wanted to consult a nutritionist to get a better handle on his food needs, but I remembered someone had suggested products from The Honest Kitchen, and I read more about them. They have a base called "Preference" to which you can add a protein source (like tofu) which mixes up to provide a balanced diet, and this base is very low in fat. I thought I could combine that base with the tofu and then combine the mix with his Royal Canin canned food to achieve a better balance in his diet.

We started this on Saturday and, so far, he's handling it pretty well. Most of his poop has looked pretty good, though we had one poop yesterday that looked like it was coated in mucus. This is often a SIBO (small intestinal bacterial overgrowth) symptom and I discontinued his probiotic when I started feeding this, so it makes sense. I started the probiotic again today, and we'll see how he does.

His skin already seems a bit less dried out and his energy level and mood remain good. I'll be quite happy if this works out for him because it will be something to help our stores of old-formula food last a bit longer.

Here's a link to information about Preference, the Honest Kitchen product we've started using.

Saturday, August 15, 2009

Friday, August 14, 2009

Sadness

I get occasional e-mails from people who have stumbled across this forum through a search, and i hope that whatever I offer here has helped someone. I don't know if it does; I can see that people come and go, but it's like ships passing in the night. I can only hope and pray that someone who reads here is inspired to go the extra mile and able to find what helps their dog because they were encouraged by something they read here at this site.

When I do get e-mails, they are often from people who are in a desperate place with their beloved pets. I can only encourage these people to do what I have done, to do as many low-fat diet trials as they possibly can and, hopefully, find some protein source that works for their dog. And if you are lucky enough to identify a protein, find a nutritionist and have a balanced diet created for your dog that includes that protein in an ultra low-fat recipe.

I also do see a few folks who keep coming back, and I hope for them that they are finding something that brings value into their lives. Louie has been a big part of my life, and he's also loved by others. I just hope that others understand that what I do for him I do for those I could not save, as well.

Saturday, August 8, 2009

"Your family dog may be smarter than your toddler"

"Using adapted tests designed for human children, psychologists have learned that average dogs can count, reason and recognize words and gestures on par with a human 2 -year-old.

"They may not be Einsteins, but are sure closer to humans than we thought," said Stanley Coren, a professor emeritus at the University of British Columbia and leading researcher on dog behavior."


LINK: Your family dog may be smarter than your toddler

Wednesday, August 5, 2009

Louie's Story, Part 8: Save Louie


I thought long and hard about what I was going to do to feed Louie, once those two cases of his prescription food were gone. As far as something else to feed him, I had no answers. I could walk up to the edge of a likely disaster and just wait until I was forced to try the new formula, but that just didn't seem like a reasonable thing to do. My biggest fear was that I was not going to be able to find anything else he could eat, and that I'd be forced to watch him slowly waste away again, this time with nothing else I could do. I couldn't see letting that happen.

That is when this blog and the companion site at savelouie.com came into being. We started out with a letter writing campaign in the hope that Royal Canin would consider making the old formula again as a separate product in their line. When it became clear that this was not going to happen, I realized that I had to shift my focus quickly. There was still old product out there on shelves all over the continent, but it would not be there forever. At the urging of a friend, the Save Louie Food Drive was born, and I was able to purchase over 500 cans of the old formula food for Louie, all thanks to the kindness of those who spread the word, made calls, purchased food and shipped it to me.

Louie will soon be twelve years old. If we're lucky, he will have three more years or so. He eats a can a day, so 500 cans is not quite enough, but it's a good start. And just recently, we discovered a new protein source that he can eat: Tofu.

I'm stretching those cans of food for as long as I possibly can by mixing them with tofu and, sometimes, rice. In the next few months, once I dig out from under the expense of shipping 500 cans of dog food to California from all over, I will speak to a veterinary nutritionist about how to best balance Louie's diet. For now, I believe that Louie is finally saved.

This is an insidious disease. It can rear its ugly head at any time, but now that he is stable, remissions are relatively long and relapses are infrequent. Louie today is as happy as he can be. He feels good, his skin has healed, his muscle tone has improved and his energy is good.

He owns my heart, and I am so very grateful that he's doing well.

Yes, there is hope.

Monday, August 3, 2009

Be careful out there!

My heart is broken today. One of my friends from the Chinese Crested forum went outside to walk his two dogs yesterday, and one of the dogs, a little, white Pomeranian, was attacked by a larger dog that was off-leash. The little pom passed away last night in the emergency veterinarian hospital.

This kind of story hurts on so many levels. Here was a guy who was doing everything right. A doting dad who takes superb care of his pets, he always comes across as someone for whom these dogs are one of the great joys in life. And yet, in an instant, without any warning, it all turned so horribly, horribly tragic.

I admit that I am not a very good mother sometimes. I have little dogs, and I have a nice, fenced-in yard, and my dogs don’t get exercised around the neighborhood as much as they probably should. But when I hear stories like this, I am glad that they have a place to run around together that is relatively safe. The worst likely encounter they might have in our yard would be with a skunk. I’d love to say that it’s because I’m so very careful with them, but it’s really more about me being lazy, truth be told. However, when I hear stories like this one, I don’t feel so bad about being lazy.

The rumor is that the dog who attacked was not a stray, but a neighbor’s “security” pet who was allowed to walk around off-leash. The fault, if this is true, lies with this dog’s owner, but my friend does not even know who he is-- and no amount of blaming is going to bring back this sweet little life.

It can all happen so fast. Please, please…be careful out there!

Sunday, August 2, 2009

Louie's Story, Part 7: Can we relax yet?

Louie did pretty well from then on; he began to put some weight on again, and he began to regain the strength he had lost. I was pretty sure we were finally at a point at which we could relax a bit. His eyes were still a problem, and he was continuing to lose sight in both eyes but if that was the price to be paid for keeping him alive, so be it. He was happy, he could still get around, and he didn't seem to be in any pain.

We cruised along like this for several months. I'd order his prescription food a case at a time, drive up to Davis about once a month to pick it up, and we watched him come back to life again. Where before I'd been able to see blackheads all over his skin, now it was much more clear.

Then, one day I was online reading the forum that I visit about canine pancreatitis, when someone mentioned that the prescription food he was eating had been changed. The recipe was different; whereas before it had been made with fish, it was now being made with pork and chicken.

I was not sure about the pork, but I knew that our homemade diet with chicken had never agreed with him.

I had just picked up two cases of food. It was the first time I'd felt confident enough in his improving health to purchase two cases at a time. I ran to the garage and looked at the labels and was relieved to find that they were the old formula.

So, I had two cases left. 48 cans. After that, I did not know what I was going to feed him.

.

Intestinal lymphangiectasia: Yes, there is hope.

I want you to know, if you have landed here in search of information about this terrible disease, that there is hope for your dog.

When I first began searching, like you, for information after this diagnosis, I was horrified by what I read. But I also learned, from friends who had experienced the disease in their own dogs, that some dogs do very well with this diagnosis. The key is often as simple as figuring out some feeding regimen that works for your dog, and then strictly staying with it.

Our case was complicated by several other things, particularly some apparent protein sensitivities which meant that, in addition to fat, there were also many meats and protein sources that he could not eat. But we kept trying, and we have found things that work.

I want you to know that, a year past the point where I thought we were going to lose him, Louie is happy and feeling well. He is energetic and feisty and sweet. He feels good.

There were many days when I thought we would never get to this point, but here we are. Please, if you are here because you are wondering... know that there is hope.

What do 426 cans of dog food look like?



Like this:

Wednesday, July 29, 2009

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.

Tuesday, July 28, 2009

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.”

Monday, July 27, 2009

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.

Tuesday, July 21, 2009

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.

Friday, July 17, 2009

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.

Saturday, July 11, 2009

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.

Wednesday, July 8, 2009

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!

Monday, July 6, 2009

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.

Friday, July 3, 2009

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.

Wednesday, July 1, 2009

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.

Sunday, June 28, 2009

Food trial: Tongol

I had three cans of tongol tuna in the cupboard that I had actually bought for myself. Looking at the fat content on the label, it's listed as 0.5g in a serving of 56g which would make it a little less than 1% fat, if I'm estimating right.

Since tongol is pretty easy to get I thought it might be a good idea to do a diet trial with it. One of my fears has been that I'll find something he can eat but it won't be something that is always readily available. However, tongol is sold alongside the albacore in cans at Whole Foods and Trader Joe's. It's always in stock, and it's not very expensive.

So, today I added a very small amount to Louie's regular meals. So far he's good, but it was such a tiny amount that I'd be surprised to see a reaction. We'll keep doing this for a couple of days, and slowly increase the amount as we go. I want to take this very slowly because I don't want to end up ruling out anything just because of the usual transitional difficultes that dogs have with food changes. All we can do is hope for the best!

Saturday, June 27, 2009

Looks like we're back to diet trials

I haven't heard anything about the large shipment of food we were expecting, so I'm starting to resign myself to the idea of more diet trials for Louie. In a way, this is not a horrible thing, assuming we can find something that he'll tolerate, because then we won't be tied to a commercial product and vulnerable again to the whim of a manufacturer.

The vet at Royal Canin, Brett Mayabb, also suggested some commercial diets to our vet which we might be able to try. At this point, I am leaning more toward trying to find something that I can provide myself, as I'm really wary of being at the mercy of another pet food company.

I may also contact Monica Segal who runs a Yahoo group called k9kitchen, where I am an occasional lurker. I had considered working with Monica earlier, but was dissuaded by her wait time since I didn't have that much of Louie's food left. Now that I have bought some time for him with more cans of food, however, I have the time to wait.

Wednesday, June 24, 2009

Brief Update

I still don't have any definitive word on the food coming from back east, so will be calling on Friday to check on this.

Louie is feeling much better over the past few days and was very energetic and happy when I got home today. It's always a blessing to see him like this as it means he's getting adequate protein from his food.

I spoke with Louie's vet at UC Davis earlier this week, and she has been in touch with the vet from Royal Canin. She agreed with me that stockpiling the old food was the best course of action but also said that there were a couple of diets we could try if need be. So we have a plan, if I end up running out of his food.

That's about it for now!

Saturday, June 20, 2009

A Big Thank You

I want to catch up on my thank you's this weekend, and especially want to say thank you again to Karl from ingredients101.com for sending us a sample of fish meal to use in our diet trials, as we continue to search for something we can make ourselves that Louie will be able to eat.

Since he's currently in relapse mode with the lymphangiectasia, I need to give him some time to recover, so I put the fish meal in the freezer and will thaw it out after he's been feeling better for a little while and give it a try in the nutritionist-provided recipe that we have used before. I'll keep my fingers crossed that it will work for him and that we can then put this whole issue of what he is going to eat behind us.

As for Louie, he seems to be doing a little better today. One thing I noticed a couple of days ago was that some of the cans of food that have been shipped to me seem to be very dry, and I'm also noticing that there is some fat concentrated around the sides of these dry cans. My thought is that these cans may have gotten hot during shipping which caused much of the fat to leach out toward the sides. This would have caused the fat content in these cans to become unevenly distributed. It's my guess that perhaps one or two of the meals he has recently consumed were unusually high in fat for this reason.

So, adding to the never-ending list of chores and things to worry about, we'll start emptying whole cans into separate containers and mixing them thoroughly before feedings, especially if the food seems particularly dry.

It just never ceases to amaze me how many little things we need to consider with this disease.

Meat Rendering - What is it?

This article was recently posted on one of the Yahoo groups I frequent and I think it bears repeating here. An excerpt:

There is a wide variety of materials that can comprise the mixture that is processed at the rendering plants. The rendered material will be added to dog food either as "meal" or as "animal fat". The following list includes some (not all) of the ingredients that may be rendered as pet food:

  • Tissue from slaughterhouses, including blood, feathers, heads, feet, bones, and entrails
  • Restaurant grease and butcher shop trimmings
  • Road kill animals, including pets, deer, raccoons, snakes, opossums, foxes, etc.
  • Euthanized animals from zoos, vet clinics, or animal shelters, including cats and dogs
  • Diseased animals, including those with Chronic Wasting Disease or "Mad Cow Disease"
  • Tumor-ridden, cancerous, or "wormy" tissues
  • Animal tissues containing drugs or pesticides and injection sites
  • Flea collars, ear tags, Styrofoam, and meat wrappers

Friday, June 19, 2009

Another downturn

Louie has more diarrhea today. I was concerned this might happen as his stomach started gurgling last night, which is a pretty reliable sign that things are going awry with his lymphangiectasia.

He hasn't started moping around yet, though, and as long as his energy remains good I will try not to worry too much. I would like to see him with an opportunity to put back some of the recent weight loss, but all in good time. We have learned to take this disease a day at a time.

Wednesday, June 17, 2009

Louie feeling better; can count semi-update


I have received the last of the food I was expecting from individuals who were able to find it; I have no idea how many cans of food now sit in my garage because many of them are still in the packing boxes that they were sent to us in. Here is what they look like (there's also a lone case sitting in another corner-- not sure why that happened).

I'm guessing there might be some 400+ cans here now, which is great, but it isn't quite enough.

We are still hopeful that the large shipment of food will come through, but there is always a chance that a mistake was made, so I'm not ready to relax just yet.

Louie himself seems to be feeling a bit better today. He's in good spirits, and we haven't had any nausea or diarrhea since the day before yesterday, so hopefully he's adjusting back to the straight canned food again!

Tuesday, June 16, 2009

Conversation with Royal Canin Vet

I had a call from one of the vets at Royal Canin today. I am appreciative that he took the time to call me.

He's trying to get in touch with Louie's vet and, in the meantime, is doing some research on other foods that Louie might be able to eat. We had a nice discussion during which we agreed that Louie's issues seem quite complex. As he mentioned (which corresponds with my own research) there really isn't anything else available that's quite as low in fat, so it's a difficult question and perhaps an unsolvable one.

He also mentioned that they had tried calling around to their distribution centers to see if they could find some of the old formula food for us, but had no luck. I told him I am hoping to receive a large shipment of the food but that it can't be fully confirmed at this time, and he said that was probably the best thing I could do, given the circumstances.

So, that is where we are at this time. I did point out to him that I am grateful to the company for even making the food in the first place, since without it, we probably wouldn't have even had reason to converse as I doubt we would have made it this far. I do appreciate the update from them.

Monday, June 15, 2009

Sigh

This is lymphangiectasia. I came home today to find that Louie had puked up his pill in one corner of his crate, and there was frothy puke in each of the other three corners, and all over his little bed.

Any little change to his diet can trigger this disease. I gave him an anti-nausea pill and a small dinner a little while later; if he holds that down I will give him a larger amount a little later on.

Often this is enough to help him through a transitional phase with his food. I hope it will be this time. The diarrhea, for the moment, seems to have subsided, so that's a good sign.

Sunday, June 14, 2009

Another rough night

Poor Louie never gets much of a break. He is having another pretty difficult evening tonight. Hope he will readjust to his food soon.

And now, some good news

I have been holding back on publicizing too much information about the source for the large shipment of food we are hoping to receive only because there is some work being done to move those cans from a distribution warehouse to another location in order to first verify the contents of all the cans before the purchase is actually made. Until our contact there has verified the contents herself and I have actually purchased those cans of food, I will not feel comfortable releasing identifying information about the source.

However, I did get a voicemail from our contact there today letting me know that they are going to provide us with a discount on each can that will, overall, save us about $225.00! This is really good news, and we are very grateful for the assistance, as shipping on all this food we are receiving is costing quite a bit. This will really help to offset some of those costs.

I'm very excited and pleased that it looks like this purchase is moving forward, and I wanted to share this good news here.

Louie's Bad Evening

Poor Louie does not respond very well to any change. I've recently felt a need to stretch his remaining food by adding rice, which, of course, cuts the nutritional value of his meals and also severely limits the amount of fat he gets. Even though he is already on a very fat restricted diet, he still needs to get some amount of fat as it is important for certain biological processes. So, over the past few weeks, his skin has gotten dry and he's been a bit lethargic due to decreased nutrition and fat.

Last night and today, feeling confident that we would have food for him to last a while, I decided to improve the quality of his meals again and I limited the rice content, giving him a richer mixture than he's had for a while. It was maybe 3/4 of the Royal Canin food to 1/4 rice.

I believe the change was too sudden for him, as we came home from an evening out today to find evidence of diarrhea (a lymphangiectasia symptom) in his crate. It happens; we cleaned him up and put his bed in the wash, and he's sleeping here next to me right now.

What is hard about this situation in general for us is that it is so hard on him. He's just a little dog, extremely sensitive to any changes to his diet. With luck, he will get used to the relative richness of the straight product again in a few days. It's possible, also, that his lymphangiectasia will flare up again in full, that his remission from the disease will cease and that we will find ourselves back where we were a year ago. This is always a possibility with this disease. Each time something like this happens, I hope and pray that he will be okay.

Saturday, June 13, 2009

Shout out to our Saint Charles visitors

There seems to be a lot of traffic to this site from visitors in Saint Charles, Missouri, home of Royal Canin headquarters. I'm guessing they are interested enough for some reason to lurk about on this blog, but apparently not interested enough to offer themselves to locate stores of food to help us, or to give us some meaningful assistance by helping us formulate a workable diet for Louie (thus avoiding all the expense incurred as a result of this food drive).

I bring this up, not because I am particularly surprised or disappointed or even concerned about this company and what they do. What bothers me is that they have taken a public position, mentioning Louie by name in e-mails, which appears to imply that they are doing something to assist us. I find this particularly disturbing because so many people who do business with this company have indicated that they believe them to be a "pet-centric" company, a company with heart, a company that cares. This is the position I was being sold by them on the phone the one and only time I had an actual conversation with someone there-- a full ten days ago. It all seemed quite sincere, and yet nothing happened. No one returned my calls when I called again and, in the wake of all that spin, Louie was left to twist in the wind. No one ever really tried to help him, as far as I can tell.

It seems disingenuous to me for someone to attempt to take credit for something that did not happen. If you folks reading at Royal Canin want to help us, you have my phone number. I will be happy to report here on anything positive that is done on Louie's behalf. My e-mail address is available through this blog and at the savelouie website. You don't need to lurk. The door is open, and always has been.

Friday, June 12, 2009

203 cans

Today I picked up 58 cans of the old formula Royal Canin Digestive Low Fat (with fish) from a friend here in Sacramento, and received two cases via Fed Ex from a friend in Michigan, which brings the total number of cans I actually have sitting in my garage to 203. It is possible that more will arrive today.

I am so grateful that we have been able to get this food for him, though it took a lot of scrounging! So many people stepped up to the plate to help us.

I have been adding rice to his meals over the past couple of weeks in order to stretch the food that we have left, but today, for the first time, I felt comfortable enough to feed him without the rice. I know that he won't get the full nutrition if I keep stretching it, so I'm really glad to be able to give him a full and balanced meal once again.

The Help I have Received So Far

I get a lot of correspondence regarding responses received from the Royal Canin company to various letters and e-mails that have been sent to them by friends who are concerned about Louie.

Most recently they have been reassuring everyone who writes that they have been in touch with me. One person said that they were told that they are trying to help Louie.

I wish I knew myself what they are doing to help.

When I spoke with their nutritionist on the phone, she did express strong concern for Louie, seemed sympathetic, and after hearing the details of our situation offered to have one of Royal Canin's veterinarians speak with Louie's veterinarian. I gave her the contact information for the small animal clinic at UC Davis and told her the name of the resident who has followed Louie's case most closely in Internal Medicine there, and also the name of the faculty who conclusively diagnosed his lymphangiectasia last year.

I haven't heard anything from either of those doctors at UC Davis. I understand that many of the residents are away right now, studying for their board exams this week, so maybe this just isn't a good time to be getting in touch with a resident. I would guess that faculty are there, but faculty do take extended periods away from the clinics for various reasons, so perhaps this just isn't a good time at all. I don't know, because the nutritionist at Royal Canin did not return my call when I left a voice mail for her later that same day to ask if they had had any success. So I continue to wait and see if they can shed any light on our predicament through those channels.

The only other contact I have had with Royal Canin was when I was asked to call them by someone at one of the large chain stores which had some of the food we need. The person at the store was not sure what had been changed in the food and, my understanding at the time was that her impression from speaking with Royal Canin was that nothing had actually been changed. She wanted me to call the rep myself so that I would be certain I was buying something that I really needed.

I've done some research on the matter, but she was very nice and very helpful, and I always think it's a good idea to be reasonable and cooperative and leave no stones unturned. Maybe something had changed or they had decided to make the old food again. So I did call the gentleman at Royal Canin she suggested I call. I got him on the phone, told him my name, told him I have a little dog named Louie and that I was calling about the change in the Digestive Low Fat and that I understood that he wanted to speak with me about it. He said that he had no idea what I was talking about and was in a meeting, but that he would call me back. I never heard from him.

That's the full extent of the help I've gotten from Royal Canin so far, just to clarify for those of you who are receiving those letters (I never even got one of those). It's not that I'm not open to working with them. I am not sure what they can offer in terms of medical advice that we haven't already received, however, I really am interested to know if they can help us in some way.

Thursday, June 11, 2009

Guilty Plea in Tainted Pet Food Case

From United Press International:

ChemNutra Inc. and owners Stephen and Sally Miller have signed a plea agreement admitting to 27 misdemeanor counts of distributing adulterated and/or misbranded food and one felony count of conspiracy to commit wire fraud, PetProductsNews.com reported Wednesday. They will formally enter their pleas June 16 in federal court in Kansas City, Mo.

Read more here:

Pet Food Suppliers to Plead Guilty

Wednesday, June 10, 2009

About Royal Canin, Louie, and me

There have been numerous comments appended to the article I posted on Monday by Dr. Patty Khuly. Many of these arguments center around the question of who should have control over therapeutic pet diets, and to what degree. Some have to do with the quality of commercial pet foods in general, and some have to do with myself, Louie, our level of understanding with regard to Louie's medical condition and our alleged campaign against the Royal Canin company.

I would like to clarify a few things here for the benefit of those who may have some misunderstanding with regard to this. Much of what I would like to say here I have already said in the comments section of the Dolittler blog, so rather than reinvent the wheel I will just repost much of that here, in the hope that something I said there may answer some of the questions that remain in peoples' minds:

There certainly seem to be no shortage of opinions on this issue. For me, the real controversy has nothing to do with the quality or usefulness of these foods (remember that we are reliant on one of these products) but the fact that there is an implicit assumption being made on the part of many of us that something which is designated a "prescription" product is subject to some sort of regulation similar to the sort of regulation that exists with regard to prescription products sold to humans.

In fact, there is nothing magical or special in any legal sense about this prescription designation when it comes to pet foods, and therefore there is no mechanism in place to protect people like me or you in the event that the manufacturer decides that they can make the product more cheaply or for any other reason decides to change what is in these products. There's absolutely no liability on their part for any damage this might cause, regardless of the money I have spent to get my pet well (ultimately by using their foods) or the money I might spend nursing him along if he can't thrive on the newly formulated diet.

This is not, of course, about money, but it seems to me that if they are marketing food as medicine there should be some consumer protection in place for those who are reliant on these therapies. I think this stands as a completely separate issue from the quality of the foods, the efficacy of the diets, or the wisdom of controlling distribution channels by limiting the sale of the foods to certain vendors (in this case, veterinarians).


In response to the suggestion that I might not be well informed about the nature of Louie's problems:

....We've been through a year and a half of diagnostics and many diet trials, and are being seen by a team of vets at one of the best veterinary schools in the country....His file at UC Davis is three inches thick. Let's just say that I've made it my mission to keep this dog alive and at this point it's pretty darned clear, through process of elimination (no pun intended) that my dog reacts poorly to foods that have chicken in them....

In response to the rather amusing suggestion that perhaps I hadn't asked Royal Canin for help:

Of course I did. All they offered was to have their veterinarian speak to my veterinarian, which never happened. I tried to call them again yesterday after being told that one of their reps wanted to speak with me, and when I called he told me he did not know what I was talking about, did not know who I was or why I was calling, and was in a meeting and would call me back, which never happened.

And with regard to the suggestion that I somehow have been unfair to the Royal Canin company, or that they perhaps would have helped us, had they only known of our plight:

if anyone actually went to the savelouie.com website to read the story (doesn't sound like many did) then you would see that I was quite kind to Royal Canin, expressing gratitude to them for even making the food in the first place.

There are others who submitted stories to my blog whose opinions are less generous, and I posted those opinions unedited because everyone should have the opportunity to have their voice heard. But their opinions are not my opinions. I am not in a war with Royal Canin and the whole point of the site originally was to persuade them to put this issue on their radar so that they would make an effort to help us. When it became clear that they were not going to do this, the food drive began. I do not think they have handled this very well, and it could have been a great opportunity for them to step up to the plate in a very visible way which would have made it a win-win situation for everyone. That was their choice, but the opportunity was certainly there.


More on Royal Canin, when it was suggested that there might be very good reasons for the formula change:

Royal Canin has come forward with two different explanations for the formula change. One is that they have a hard time controlling the fat content (at least, this is the explanation which is implied in the e-mail they are sending out in response to inquiries). The other explanation which I was personally given by them in a telephone conversation and which was also provided via e-mail to at least one veterinarian who contacted them was that they do not have a consistent supply of fish with which to make the product. This is a reasonable explanation, but it doesn't help Louie very much.

I don't know which of these explanations is true; perhaps they both are, or perhaps neither is. The impression I had from the phone call I received was that they were hoping they could talk me into trying the new product and we'd all live happily ever after. I believe that, in their discussions about this, it was probably suggested that to admit that one dog might have a problem would be to somehow admit that the formula change was a bad idea. In fact, I don't know that it is. It's likely that most dogs will tolerate the change just fine. However, not all dogs will, and my dog is one of them.

The nutritionist I spoke with at Royal Canin seemed a bit taken aback when I explained that it is the chicken in the product which is likely to cause a problem, and not the pork. This was after she [somewhat triumphantly] explained that pork was always in the product as part of the "meat by-products." I explained to her that, at one point, I had Louie on a nutritionist-provided recipe which included chicken and rice (rice is also in the Royal Canin product) and a supplement, and he never thrived on this diet, but continued to worsen. As I said, I don't have to walk up to the edge of disaster in this situation to know that giving him a food that contains chicken is a bad idea.

I have since attempted to use that recipe as a base while swapping out various kinds of low-fat fish to attempt to discover a kind of fish that will work for him. No luck so far. I do have a sample of commercial grade fish meal on the way and will do another diet trial with that as well. We have not given up on finding out what he can eat-- we know he can eat something. Royal Canin knows the difficulty of our situation but do not seem interested in even telling us what kind of fish to try, so I don't really think I can count on them to provide any further information, despite the fact that I continue to encourage people to ask.


And finally, in response to a question about whether or not I knew for certain that the fish in the food is the ingredient that treats his condition:

No, I don't think it is the fish source that improved his condition, per se. An extremely low fat diet is the treatment for lymphangiectasia, not a particular protein. I cannot give him fish oils; I cannot even give him vitamin E capsules because of his sensitivity to fats. However, he's also had recurring pancreatitis, he has a lot of autoimmune disease, and, in general, based on my own observations of various food trials we've done with him, he seems to be sensitive to a variety of protein sources, so we've really had a very difficult time finding anything at all that agrees with him. Either the fat content is too high, or the protein source seems to irritate him intestinally (which, in turn seems to trigger the lymphangiectasia). All I really know regarding this particular food is that it appears to have been the magical combination of things that agrees with him somehow, and I was really hoping we would not have to make any changes once we got him back on his feet and feeling well. It was a very long road to get here, which we were very lucky to stumble upon, and it is incredibly frustrating to find ourselves in this position with his food again after all we have been through with him.

I hope this clarifies my position, and the events which transpired to bring us to the point at which creating this food drive and website seemed like logical moves.

Tuesday, June 9, 2009

Is Louie Saved?

We believe we have found enough back stock of food in a warehouse back east to call off the food drive!

Monday, June 8, 2009

Article about Prescription Pet Food Diets

I was made aware of this link this morning:

Prescription Diets in name only: On marketing, distribution and retailing of Rx foods for pets

In this article, Patty Khuly, a veterinarian, discusses the mechanism behind so-called "prescription diets" and makes reference to our situation with Louie at the end.

I am grateful to Dr. Khuly for opening dialog about this problem. While I agree with some of the commenters, insofar as understanding that it is a prescription product that has made the difference for my dog, I also take the position that, if we are going to call these diets medical treatments, they should be regulated as such.


Saturday, June 6, 2009

Unmeasurable Gratitude

Today is the first day in about a week and a half that I have felt good enough to take a little time away from this mission and relax a bit.  For the first time since this began, I have a sense that we might just be okay.  

This is due, in no small part, to the unflagging efforts of a small group of dedicated people who congregate in an online corner of the world known as Chinese Crested Crush.  We bond over our mutual love of this quirky breed, but the bond is revealed as so much more when something like this happens which brings the group together in ways that renew our faith in one another as compassionate beings.  

Today I have finally set a goal for the food drive.  Louie, at 11 1/2 years of age, will most likely survive to about 14 or 15 years of age, if all goes well.  I have set a goal of 900 cans, which should get us through three years and perhaps a little more.  

We are already more than 1/3 of the way to this goal.  I know we can get there.  What I do not know is how to express my gratitude, which is unmeasurable.  

Thank you to all who have looked.  My friends on Crush, my friends from AS3, my friends from Yahoo, friends from Facebook and my friends from what they call "real life."  Thank you all.  Let's keep it going, and reach our goal while the food is still out there.  

Friday, June 5, 2009

It's here!

The food shipments have begun to arrive.  Between buying all the food and the shipping, this is going to be a bit expensive, but my husband Rick pointed out that it's much cheaper than vet bills.  

Louie did not want to pose with his food, so this is the best we could do.  It still looks great to me!

335 cans

And counting.  All I can say is, "Wow!"  Today I want to thank Addy's Mom, Cynthia, puffornot, and butlerchick for finding us more of Louie's food.  I also found a case myself nearby today.  

Other thanks are also due:  La Riviera Veterinary Hospital, UC Davis Veterinary Teaching Hospital Small Animal Clinic for your quick help with the documentation I needed today.  And many, many thanks to those who made calls but could not find it.  Your efforts are appreciated so very much.    

The question that needs to be asked

There has been such a whirlwind of activity here as we try to find the remaining cans of the old formula food, but as busy as I am, I really can't afford to just stop at this.  The question that needs to be asked is "How could this happen to my dog?"  

This food is supposed to be a prescription product, sold only to veterinarians for resale to those whose dogs need it.  

If you were diabetic and dependent on diet for your health, you would expect that a prescription product, available only through tightly controlled channels, would not be arbitrarily changed by the manufacturer in a way that fundamentally alters its contents.  To the best of my knowledge, we have laws in this country that protect us from such harm.  

Yet, apparently, when it comes to our pets, whom many of us consider to be family members, there are no laws that protect us.  

I don't want to make this an issue about money, because it is not about money for me.  It's about Louie, my companion and friend, and how he has suffered and may suffer again.  But it did take money to pull him through this illness and bring him to his present state of good health.  Now, with one arbitrary change, we stand a chance of losing him and incurring additional veterinary costs along the way.  I find this almost unbelievable.  

These costs are costs I bear because I have made a promise to my friend to take care of him for as long as I am able.  Louie himself has no voice, so I have no choice, even though I am not a person of great means.  He is that special to me.  But these are costs I should not have to bear, if we lived in a world where the health of animals is respected more than it is in the world in which we live today.  

Far more important than the monetary cost is the cost to the quality of our lives, the stress and difficulty of knowing that my dog is in danger and there is ultimately nothing I can do to avoid having to make changes that could cost him his life.  And the difficulty that he bears, as he becomes ill again, as I try different foods that may sicken him in my quest to find something he can eat.  I do this because I have no other choice.  

It should not be this way.  

129 cans so far

Friends around the world have so far located 129 cans for us.  That represents at least 250 more days of quality life for Louie during which we can continue to search for a food that he can eat.  

Please don't stop looking.  We will take all we can find!  Thank you so much for your efforts on Louie's behalf.  

Thursday, June 4, 2009

Chewy's Story


From Julie C. in Austin, TX:

A million thanks for starting this website. I feel like I have spent a million bucks on Royal Canin prescription foods over the years and am very disappointed at their response to this issue. After trying other foods, I was going to go back to feeding one of my dogs their Potato/Rabbit allergy formula but have decided against it based on Royal Canin's response to the issue of RCDLF. At $59 per 16 pound bag, I will find an alternative.

My Chewy, an 8 year old Wire Fox Terrier, was first diagnosed with pancreatitis in March of 2005 on what we now know was his 3rd bout of this insidious disease. With a history of severe allergies and hypothyroidism, I first noticed that Chewy was extremely lethargic and was running a high fever. This bout, on Easter weekend, came on very suddenly and within half an hour, he began very heavy panting, arching his back in pain and cramping so badly that you could literally see him having contractions. After a day and a half in the hospital, he was sent home with his fiesty terrier temperament, on the prescription allergy formula he had been on prior to the attack with no mention of the terms Pancreatitis or fat. After a week, late one evening he was wracked with fever and writhing in pain again and ended up in the emergency hospital. Again, after a day and a half and back to his normal bouncy self, he was sent home with a diagnosis of Pancreatitis, a disease I knew nothing about. I was instructed to feed him boiled, skinless chicken breast and rice in several small meals a day for a few days and then to resume his normal diet. Two weeks later, he had yet another bout, again coming on suddenly and becoming an emergency within an hour of first symptoms. This time he was referred to a wonderful veterinary internal medicine specialist. He was very sick with a badly inflamed pancreas. The specialist felt that he had never fully recovered from the prior two attacks and though he perked up quickly again, she kept him in the hospital on IVs for 6 days until his ultrasound was normal. This was not easy on the hospital staff as this loveable dog bounced from wall to wall in his cage when staff would walk by with other animals, pulling out his IV several times. Still, he pulled through and came home with a new diet -- Royal Canin Digestive Low Fat. Chewy did wonderfully on this food for a year until a problem with the formula caused it to be recalled.

After a year of stability, the vet felt it was safe to return him to his allergy diet, also a Royal Canin formula after RCDLF was recalled. Chewy thrived for 2 more years, continuing to fight off allergies with the help of shots and Cyclosporine and hypothyroidism, controlled with Thyroxine. Couple all that with a few benign tumors and some serious doggie disputes requiring stitches, Chewy is a living, breathing miracle.

Fast forward to Memorial Day weekend, 2008. The nightmare returned out of nowhere. First the lethargy, then the fever and then the panting and cramping. I was able to find a vet that was open who immediately admitted Chewy. This time he did not bounce back like before. Six days later, he was transferred to the internist in critical condition. On day 10 he had a nasogastric tube inserted to begin slowly introducing nutrients into his system. He kept pulling out the tubing and with no strength and looking pathetic, I told him it was ok if he didn't want to fight anymore. On day 11, he finally started to improve and finally got a taste of real food; again prescription Royal Canin Digestive Low Fat canned food. On day 12, Chewy finally came home.

Fast forward again, another year. Things have been going great with Chewy still on his RCDLF canned mixed into RCDLF kibble. Not one to take chances with Chewy's food, I don't wait until the last minute to refill his prescription and when I opened the last can from a case, I was secure in the knowledge that I had a full case waiting in the closet. Upon opening the first can of the next case, I knew immediately that something was different. It looked different, it smelled different, it had a different consistency. Puzzled, I finally looked at the label to discover, in shock, that Royal Canin had completely changed the formula of the canned food. Where the first ingredient of the food he had been eating without problem for a year was fish, the first ingredient was now water. Second ingredient pork. Next came pork liver and so on. What happened to the fish? Royal Canin's customer service reps say they were not able to maintain a stable source of fish. Apparently pigs are more consistent and plentiful. The protein has decreased, the fat has increased. Royal Canin tells me that after all, there was always pork in the food...it was just called "meat by-products."

I knew this would not be good and above all, I knew better than to completely change Chewy's food without introducing a new protein source slowly. Upset, I called the vet's office only to learn that Royal Canin had not notified them of the change (Royal Canin disputes this) and they had just been notified by the owner of another patient. I am told that they do continue to receive price changes that Royal Canin sends in the mail so they are reasonably sure that if a notice had been mailed, they would have received it. While the vet thinks that this new pork formula would probably be ok to try, she had purposely not changed Chewy's diet when he developed calcium oxalate crystals and bladder stones several months ago. We both know that he will not make it through another bout of Pancreatitis and that a change in diet could very well trigger one. And while there are other reduced fat fish-based prescription diets, none is as low in fat as the old formula of RCDLF, now discontinued without any regard for the patients that need it and have been faithful customers for years, Anyone who knows how much prescription foods cost will do anything they can to avoid them if at all possible. In Chewy's case, it is not possible and it could mean the difference between life and death for a dog that should live for many more years. I was lucky that I was able to find 43 cans of the old formula through vets in other cities to feed Chewy while a new diet is found.

We have been through formula changes and and the recall with Royal Canin before and Royal Canin has been very helpful and willing to work with us and do what is best for the dogs in the past. This time, apparently not so. We are being read to from the same script that other customers are being read, word for word. The same script that even my vet's often has been read. But hey, it's a tough economy for Royal Canin too . What's a few dogs lives?

Message to Royal Canin: I don't mind paying a bit more to keep my dog alive. I don't want to be gouged but I don't mind paying a bit more. I have lost track of how many "flavors" and formulas you have just for dogs with skin problems. There may be people who are able to and want to feed the pork product to their dogs. I am not one of them. The reason you couldn't add the pork product additionally while still carrying the fish formula...there are not enough fish in the sea? Please don't chase your loyal customers away. All we want is healthy dogs. Even just stable dogs. You have always been helpful and reasonable. Please consider your customers. It should not be necessary to beg.