Lymphangiectasia

[JBCB]

Our dog Kaeleigh ("K-lee") was just diagnosed with this disease. For the backgroung on this please read the post entitled "Protein-losing enteropathy (PLE)". Our vet gave my wife the impression that the prognosis wasn't good, but I read a website that wasn't so gloomy. Is there someone out there who has / did have a dog with lymphangiectasia? We will do anything possible to help Kaeleigh stay in our lives, as long as she can be comfortable and happy. Any help would be appreciated.

By the way, the pathologist who did the histology that diagnosed this (from Univ. of Guelph, Ontario) said that this disease is 9 times more prevalent in rottweilers than any other breed!

[CarolineS]

HAVE I GOT GOOD NEWS FOR YOU! :)

Lymphangectasia is exactly what Patti's dog Luna has and it is exactly what my other friend's dog, Carlo, has (the one who is now 10 years old). Maggie's grandmother had lymphangectasia and lived to the ripe old age of 12.

As Patti said, her vet mentioned euthanasia in the same breath as the diagnosis. An awful lot of vets feel this way about this condition because they often don't see a lot of success in managing it. I think it's partly because there is a lot of work involved. Some people just don't want to be bothered and have the dog euthanized. I can't tell you how many people have asked Patti and/or me for help and then balked at what we advised when they realized it was going to be a lot of work and a life-long commitment.

I cannot stress enough how huge a role diet plays in the management of this disease. Along with the appropriate medications, the home-prepared diet is the key to success. Patti will attest to that. Luna was literally close to dying, she had lost an immense amount of weight and she had totally lost her appetite. Nothing was working so when Patti came to this board and I suggested the home cooked diet, she felt she had nothing to lose. Patti will tell you it was a long, hard, complicated struggle to figure out what foods would work for Luna but she has a good handle on it now.

The first thing I would do, right away, is order Dr. Strombeck's book, Home-Prepared Dog and Cat Diets. You can order it from Amazon. I see, like me, you're Canadian so the book will set you back about $80 once you deal with the exchange but it is worth every penny. It is rather technical but if you wade your way through it, you'll realize that it is possible to help your dog with a homemade diet. Dr. Strombeck is a small animal gastroenterologist and he has a very long chapter in the book about diets for dogs with intestinal diseases.

I am going to go out on a limb here and suggest you don't waste your time with commercial prescription kibbles. Admittedly, I only know 3 Rottweilers with this disease, but every single one of them got no better on prescription kibbles and only started to improve when the home made diets were started. There is just no way a kibble can be as digestible as fresh foods.

The type of food Kaeleigh will end up eating is going to depend entirely on what works best for her. Carlo eats mainly chicken, egg and rice, Maggie's grandmother ate cottage cheese and rice, Luna eats soy (maybe some egg) and pasta. Although Maggie doesn't have PLE, she is maintained on buffalo and pasta. It's whatever your dog will tolerate that will provide the nutrition needed. These dogs need very highly digestible protein sources because they are losing protein. You just cannot get these sources in a kibble. They also need extremely low fat diets. Commercial low fat foods are often unpalatable and when a dog is already ill it is hard to get them to eat this. Since these dogs have "leaky guts", the antigens from foods end up going through the mucous barrier of the intestine and food sensitivities are common. With the homemade diet, when this happens, you can immediately change your protein source. There is just no way a prescription kibble can be that flexible.

Thinking of making your own food, if you've always fed kibble, is terrifying. I know, I've been there, done that, got the t-shirt. ;) You may well get resistance from your vet and this is the hardest part for most people. Patti's vet was dead set against her making Luna's food, but in the end he had to admit the progess Luna has made is miraculous. Think this over and talk it over with your vet. Get the book I recommended and show it, along with printouts of our discussions here, to your vet. You said your vet is very good and she sounds like she is open-minded. This dietary approach is much easier with your vet's support and blessing. I am lucky that I have a vet who supports me in this and so does Patti, now that she's made a believer of him. In fact, he readily admits when it comes to the dietary treatment for this, Patti now knows a lot more than he does. If you decide you want to use the home-cooked diet, Patti and I will help you with specifics. These diets are not fad diets and they are made nutritionally complete with the appropriate supplementation.

This will take a lot of dedication and hard work on your part and there will be many ups and downs, but DO NOT GIVE UP HOPE. You've caught this early and if you're willing to do what it takes, there's every reason to believe Kaeleigh will be with you for a long time. :)

[moondog]

Jay, It's not so gloomy! :)

Although I opted not to have the biopsy done on Luna because of the shape she was in at the time and the knowledge that treatment for PLE is the same irregardless of the specific category it falls in. Luna is technically diagnosed in the general category of PLE, but there is every indication that Lymphangectasia is exactly what she has! So everything you've read in your other thread about her is referring to it.

Our other Rottie buddy, Carlo, who lives in Texas has Lymphangectasia, too. He's had the disease for 4 years and is coming up on his 10th birthday. :D
Carlo's vet, Dr. Lynne Boggs, is very knowledgeable about this disease and welcomes phone or email consultations. She has consulted with Luna's vet and with me and I have found her to be a tremendous help. It would be a really good idea for you to ask your vet to give her a call or send her an email. Getting Kaeleigh's treatment program started off in the right direction from the get go will give her an edge. I doubt your Private Message function is active yet, so I am going to ask the Moderator to send you my personal email address so I will be able to get Dr. Bogg's contact info to you. Send me an email when you get it and I'll reply with the info. :)

I do know how disconcerting the thought of this disease can be ... it took a long time for me to be convinced Luna was going to live. She did live and she is living, quite happily too, :D , so try to keep your chin up and focus on getting the proper diet and medications going. Just as we mentioned in the PLE thread, with a low-fat, easily digestible, preferably home-cooked diet (3-4 times a day) and the proper medications (which will include an anti-inflammatory, most likely prednisone), I have every reason to be optimistic about your ability to stabilize her. It takes some dedication, but it most certainly can be done. Look at me...I did it! ;)

[Nancy Estes]

Jo Lynne and Carlo are good friends of mine :). Carlo has lived now for 4 years with lymphangiectasia - although they opted not to do a biopsy on him for the same reasons as Moondog gave for not doing this with Luna. Thanks to Jo Lynne, Carlo and their vet, Dr. L. Boggs in Austin, TX, we all know a lot more about this. Dr. Boggs would be more than happy to consult with your vet, like she's done with other vets. She's becoming something of an expert on PLE / IBD. I have a young male with IBD and Caroline's been a tremendous help on working out his diet, so you also have *resident experts* (CarolineS and Moondog) right here on the board.

Nancy

[JBCB]

What can I say? I'm overwhelmed! I'm actually cholked up by this news and the help perfect strangers (NO LONGER!:D ) have given. Kaeleigh is our baby, as is Hannah (Turbo and L'il Grey One too, although of the feline variety) and we will go to no end to ensure their health as they bring us such happiness. Caroline, Patti and now Nancy have given me a sense of hope, no, more a feeling of confidence, that we can ensure Kaeleigh growing old with us.

Caroline, do you know if the Strombeck book is available from Chapters? If it is then Shirley will bring it home with her today, otherwise we'll put in an order with Amazon tonight. Patti and Nancy, I'm sure our vet, Dr. Yvonne Comeau, would avail herself of Dr. Boggs' experience. She is a wonderful vet and knows how important our pets are to us. I'll contact you privately tonight Patti so I can get the information.

Once again, thank you all! If you are planning a trip to the Halifax area please let us know as we have your room waiting, you might just have to share it with a couple of kissy rotties!

And I'm not kidding about staying with us!

[Miabella]

Hi Jay,

Stick around, and you'll find that we are like a big (if sometimes dysfunctional ;) ) family. There are so many people here willing to share their years of experience, you can't help but learn something!

[Nancy Estes]

Originally posted by Miabella
Hi Jay,

Stick around, and you'll find that we are like a big (if sometimes dysfunctional ;) ) family. There are so many people here willing to share their years of experience, you can't help but learn something!

:D - yep, we are at times quite dysfunctional ;).

I saw Carlo in April and you'd never know he has a *deadly disease*. He's been on prednisone for years and will have to continue with it but he looks and feels really good. He gets a pretty elaborate diet, elaborate in terms of fixing ingredients anyway - like *x* number of egg whites and no more, so much cottage cheese, cooked chicken breasts, etc., etc. But he is alert and happy and obviously has no intentions of giving up any time soon. I'll be seeing him again in Sept. in Fort Worth where he'll be in Veterans Class at a regional specialty. Would be really nice if he won :D.

Nancy

[CarolineS]

Jay,

I don't think this is a book that Chapters regularily stocks. In fact, I've given up going to Chapters for anything that isn't a best seller! Having them order it, or ordering it off their website, will take at least 6 weeks.

I find that Amazon is just about the fastest way to get books. Don't go to Amazon.ca, go to the American site, www.Amazon.com. The Canadian site takes 2 - 3 weeks to ship out books that the American one ships out in 24 hours. Even with the dollar difference, the price of the book works out the same whether you pay American or Canadian dollars. You pay a bit more for the delivery charge because it's in US dollars but it's worth it to get it faster. I ordered a book from Amazon.com last Sunday and actually had it in my hand yesterday!

I just checked for you, the book is in stock and they say they'll ship it in 24 hours. You should have it by some time next week.

If you remember where the site was where you said you read some encouraging things about lymphangectasia, could you post it for Patti and me. We are rabid researchers.

As for that offer of a room...my husband was just saying the other day he'd like to see a bit more of Canada. ;)

[moondog]

Jay, I'll send you a couple photos of Luna so you can see what she looks like, 1-1/2 years into it. Did you get my email address from the Moderator yet?

[JBCB]

Thanks Caroline, we found that out. Amazon will send it ASAP. The site is http://www.upei.ca/~cidd/Diseases/GI...giectasia.htm.

From this article:

How is intestinal lymphangiectasia treated?

This condition can not be cured but it can generally be well-managed by you and your veterinarian. Remissions of several months with occasional flare-ups are common.

That doesn't sound like there is no hope to me, how about you? I got the site by using the Sympatico search engine (Google I think). There was also links to Norwegian Lundehund sites as I guess they are prone to this affliction. Some of them weren't as encouraging. The great thing about the internet is the availability of information, but sometimes it is misleading, not helpful or too technical.

By the way, you guys have already touched on it somewhat but both Shirley and I are confused about the mechanisms of this disease. What and how is edema caused? The consumed protein leaks out through the intestine and not enough gets into the blood? How is that related to edema? We're wondering about edema due to the 2 litres that built up in Kaeleigh's abdomen, and fear it will build up again.

Patti, I still haven't access to your profile thus can't access your e-mail. The one I have listed in my profile is my work one (I couldn't wait until I got home to post so registered again with my work e-mail) and I'm on vacation until next Tuesday. If it weren't for bad people I'd post my home one here but I'm afraid of viruses sent by those bad guys so am hesitant to post it. If the moderator were to look under the name "jaybee" my home e-mail is there (my first registration).

Thanks again everyone. And this part of Canada is great until mid-October most years (problem is summer sometimes doesn't start until July!) so a visit can be nice even after Labour Day.

[CarolineS]

Edema: As I understand it, the protein leaks out from the intestine which results in not enough protein getting into the blood. A result of low blood protein is the inability to keep body fluids in the proper places. Don't ask me why this happens, just accept the fact that it does because I'm sure I wouldn't understand the mechanics of it even if I knew them. Anyway, the escaping fluids tend to pool in the abdomen and in the legs.

Once you start to get the disease under control, and most importantly, get the blood protein levels up, this edema shouldn't happen. With the blood protein level near or at normal, it will be able to do its job of keeping the fluids where they belong.

The prednisone, which will almost assuredly be prescribed, will reduce inflammation which will help to a certain extent with the loss of proteins. The diet you'll feed needs to contain very highly digestible, high biological value proteins so that the majority of the proteins Kaeleigh eats can be used. The more protein she can assimilate, the better chance that more of it will stay where it belongs.

Biological value is the measure of how much protein a dog's body can assimilate from a certain type of food. Eggs are the perfect food with 100% of the protein available for use by the dog. About 80% of the protein in meat is able to be used. Protein in grains isn't well assimilated at all, only around 55% of it can be used.

I would say that the quote from the article describes the condition well. Patti and JoLynne have certainly experienced ups and downs with their dogs but as time goes on and the dogs get stronger, the flareups don't come as often or stay as long. I know that Patti and JoLynne opted not to have the biopsies done, but Maggie's grandmother was diagnosed by biopsy at the University of Guelph. I know it was the vet at the university that suggested her diet of cottage cheese and whatever else it was she ate. She is gone now and this was quite a while ago, so I'm fuzzy on the details, but I know that dietary research has progressed by leaps and bounds since then so the info you need is definitely out there.

Some sites are really discouraging in that they offer worst-case scenarios. It is a serious disease, but it is not an automatic death sentence. When is your next vet appointment? I think it is important to get Kaeleigh on some prednisone quite soon and get her diet changed as soon as possible to try and stop some of the weight loss and get her protein back up.

I wonder what the correct spelling of this word is? You've probably noticed I spell it "gectasia" and others spell it "giectasia". Anywhere I've seen it referred to in people, it's spelled without the "i" after the "g". In the Cornell University Veterinary Consultant site, there is no "i" in the word, yet most dog sites and a lot of dog books spell it with the "i". This has absolutely nothing to do with anything that will help you, just an example of how anal-retentive I am. :p

[kaiser's mom]

food for thought: we found alot of great books at the library on home prepared meals.............. they can also assist on having the books transferred for free to their library if it is not on their shelf... we are constantly at the library for all kinds of dog related books... there are alot of current/new ones too! then we just photo copy the recipes we really want

[moondog]

Jay, welcome to the Niagra Falls of topics! The entire intestinal system is really pretty fascinating to me and so very complex. I guess we could call it a melting pot. :)

I'm going to give edema a shot here and see what I can do with it. Picture this:

In the depths of the bowels, water and electrolytes move back and forth across the intestinal lining (mucosa) in osmotic bliss. There are secretions (from blood to gut) and absorptions (from gut to blood), and all of their activity happens at the same time so they are forever rubbing elbows as they pass each other through the permeable structure of the intestinal lining. Add digestive juices and billions of bacteria scampering about, too, and it's easy to imagine a very busy place. When the intestinal tract is functioning as it should, absorption exceeds secretion and you have net absorption. When the intestinal lining becomes inflamed, the spaces between the cells increase in size and with that, the flow increases along a pressure gradient from blood to gut (secretion). The larger spaces are what enable the larger plasma protein molecules to leak into the gut. Where we once had net absorption, we now find net secretion. When the secretions exceed the body's ability to absorb them, they still have to go somewhere. There we have our diarrhea. While those accumulated fluids are in the boat and waiting for the natural action of the intestine (peristalsis) to move it on down the line, gravity is waiting with open arms to accept any fluids that have missed the boat (if the intestine isn't able to move it out fast enough). Those fluids filter through tissue and settle in the low parts of the body, the belly and the limbs (usually the hind legs). There we have our little darling, edema. The severity of the imbalance between absorption and secretion, along with the natural action of the intestines would seem to me to be the determining factor in whether edema forms.

A bit simplified, but that's my guess! ;)

While all that is going on, the immune system is seeing monsters everywhere because of the abnormal transfer of larger particles through the intestinal lining, throws a tissy fit, and sends out the big guns to kill everyone. The function of prednisone is to calm that immune response down and reduce the inflammation so the spaces between the cells can attempt to return to normal. It is a very important part of the equation. When this happens, it is not likely that edema would be a continuing problem. Once Luna was put on prednisone, her edema vanished.

The purpose of a simple, easily digestible diet is to give the intestines as easy of a time of it as we can, so as not to antagonize them. They need to be soothed, but the dog still needs to eat, so we make it as uncomplicated as we can. I completely agree with Caroline that a home-cooked diet is the best choice.

Following her initial crisis, which lasted several months, Luna has been able to put longer periods of time between bouts and is recovering sooner. Where it used to be she would eat one good meal and have one solid stool once every few days (if she was lucky), on the other days not feeling so good, now she has a bout every month or two that usually lasts a day or two. She's so much stronger now that even when she's going through an upset, she doesn't lose her energy or desire to play. The one thing that is telling with her is that even though she starts off an activity, like playing or going for a walk, with the same enthusiasm she had before she became sick, she tires quicker. So we take it easy. I don't press her to walk farther than she comfortably can and we play short games of chase, etc. We still have lots of fun and have discovered lots of quieter ways to play some darn good games.

Luna's blood protein levels are still below normal (albumin 2.0, globulin 2.0), but out on the street, no one has any idea she's sick. She doesn't look sick, she doesn't act sick. She just gets tired sooner. Other than that, she's the same as she was before this happened to her.

The diet I have her on now is in Dr. Strombeck's book (pg 347). It uses white rice, tofu, non-fat cottage cheese and I've been able to add a small amount of chicken breast. She has done really well with this one and has been on it the longest (8 months). I'm not sure if it's because tofu is all it's cracked up to be (another discussion, it has some very beneficial properties) or if she was at a point in her healing where she could tolerate this combination. Whatever the reason, it's working so far. My big, tough Rottweiler eats tofu! :D

[JBCB]

Once again, thanks for all the replies!

Shirley went to see our vet today to pick up Kaeleigh's medications. She was prescribed prednisone (75% of a 50mg tablet, 2x a day) and a dieretic (sp?). We've heard that pred can cause thurst, more drinking and thus more urination. Is that true? Our trouble is that both Shirley and I work and have to leave the puppies for up to 10 hours a day. If Kaeleigh is going to feel the urge to pee more due to the medication then we may have a problem. Is this going to be the case? Will the pred cause any fluid retention? We're new to this and have so many questions. By the way, our vet is more than happy to contact Dr. Boggs and confer with her -- we are lucky to have her.

Kaeleigh has been doing better since her biopsy. Her stools have been formed and vary in firmness, but have been as good as we've seen the past month or so. She seems to be tolerating the Waltham's diet we're using right now but we will switch at the first sign of diahrrea. Our copy of Dr. Strombeck's book is on the way from Amazon. Thanks for the info. Kaeleigh seems to be a bit stronger and is wanting to play with Hannah more and more. Of course we have to keep her quiet as she had abdominal surgery only last Tuesday. Still it is encouraging.

I'm sure we will have even more questions but thank you to Caroline and Patti for their descriptions of this disease and how it works. I am a biologist and get lost in all this. Some websites are too technical even for someone with a basic understanding of biological terminology, while others are incomplete or don't address our particular concerns. It is so good to interact with people who have experience with this, which is why I think this forum is so important. As we discover out things in our experiences with Kaeleigh I will ensure we share them with this forum as what we learn might help others, in the same mannor as many people (Patti (moondog), and Caroline particularly) have helped us. What was first seen as a death sentence for our sweet dear Kaeleigh is now seen as a manageable condition.

Thanks once again to all.

[CarolineS]

Jay,

I don't think there is any way around her wanting to pee more with the double whammy of prednisone and the diuretic! Is there a neighbourhood teenager who'd like to earn a little extra money for a while by letting her out a few times while you're working, or maybe hire a petsitter for a few weeks? Alternately, is there a room such as a laundry room you could leave her in with lots of newspaper down in case of accidents? I don't think that she will be on the diuretic long term, once the prednisone kicks in hopefully the need for the diuretic will pass. She will still need to pee more often than usual, but it won't be as bad as with the diuretic coupled with the pred.

I'll have to let Patti answer you on how much extra you can expect Kaeleigh to drink and need to go out while she's on this higher dose of prednisone. Hopefully, she'll improve quickly and you'll be able to decrease the dose. That's the aim with prednisone; hit the disease hard with a large dose to begin with and when improvement is seen, try and gradually reduce the pred to an amount that keeps the inflammation under control and minimizes the chance of side effects.

I don't want to scare you but thought I'd let you know some of the other side effects of prednisone. In the short term, apart from the increased thirst and urination, you'll likely notice increased appetite which is not a bad thing in Kaeleigh's case. It can cause a certain amount of fluid retention, but not so much that she's going to have problems with edema like she has had. Prednisone can also cause a dog to pant more.

Long-term use of prednisone can cause the skin to thin and hair loss. It can also predispose the dog to pancreatitis and diabetes. Because the prednisone suppresses the body's own production of cortisone, it can leave a dog more open to infections. I'm sure your vet told you, but I'll reiterate, do not miss any of Kaeleigh's medication, try and give it at the same time every day and do not stop or decrease it on your own.

I've had to take prednisone on more than one occasion so I've experienced a few of the short-term side effects myself. It can make you quite nauseous so I'd be sure to give it to Kaeleigh with a meal. That helps quite a bit; your vet may want to prescribe something like Tagamet or Pepcid AC along with it to protect the stomach from ulcers. Last, but not least, another long-term side effect is something called steroid psychosis. It can cause personality changes in a dog, usually make it withdrawn and fearful.

Don't panic, most of the bad side effects only occur with long-term use at high doses. At this point in time, the benefits of prednisone for Kaeleigh far outweigh potential side effects. I'm sure once the crisis is over, your vet will attempt to get Kaeleigh on to a lower, every other day dosage which greatly minimizes the likelihood of side effects. I only mentioned all of the side effects so that if you should notice anything that makes you think something serious associated with the prednisone might be going on, you'll be aware of the possibilities and get her to the vet.

If the Waltham diet seems to be working for now, don't change it! These dogs are so individual in what they'll tolerate, "if it ain't broke, don't fix it!" You're right, though, in that if Kaeleigh does start to go downhill again, you should get her on to a home-made diet as quickly as possible.

Your vet sounds like an absolute gem. You're very lucky to have her. I think between her and Kaeleigh's loving owners, the outlook is very good. :)