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Lymphangiectasia/IBD

14K views 18 replies 10 participants last post by  nathaliealisson441 
#1 ·
Hi
I have a two and a half year old mini schnauzer girl called Peppa. She was diagnosed with Lymphangiectasia/IBD this time last year. It has been a very difficult year and although she is perky and happy in herself, she is almost bald, still has a swollen belly but now is starting to look very malnourished. I am so sad for my little dog as I know she is fading away and I am so frustrated at the lack of knowledge around for this horrible disease, let alone no cure :(...

I have had most of my information and help from the lady who runs the Save Louie blog..she has been a great help in a sea of shoulder shrugging vets!!

I have read some of Emma 09's messages and know her sadness and frustration as I am in the same situation...I am wondering how Lily is getting on?

I guess what I'd like is to know of anyone else with experience of this disease and what they have successfully tried etc? Just some support as well ?

Thanks :)
 
#2 ·
Hello! I didn't know there was anyone else on this board with a "L dog. Lily is doing wonderfully! She eats a homemade diet, and is still on pred and azathioprine daily. A year and 3 months later and I can't believe Lily is doing so well, shes been in remission a year this month. Shes been hospitalized mulitple times, actually a couple of weeks ago she was hospitalized for an infection. But, all is well again. It was only a couple months ago that Lily started actually acting herself again, just as you described she was almost bald, and looked terribly sick. Is Peppa in remission? And, if so how long has she been in remission? I don't know what kind of diet shes on, but the change in Lilys diet made ALL the difference. It was unreal! This January we hired a nutritionist and started homemade. It was the best thing we ever did for her. It might be something worth thinking about. Im so glad your Peppa is doing well, and I also feel for you. I know how difficult it is to have a dog with this disorder. If you ever need anything let me know...I've been through it all at this point.
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#4 ·
Hey! thanks for your replies!!
Emma you don't know how grateful I am to find not only another "L" dog but another schnauzer AND the same age!! Better than that she is doing well and thriving!!! I'm so glad you seem to have cracked it and Lily is well ..
If I can (without boring everyone) I'd like to give a brief history...
Last November Peppa stopped eating and I took her to the vet who initially treated her for a tummy bug...after her not eating still for nearly 2 weeks they started doing tests and Lymphangiectasia was mentioned along with pancreatitis and liver problems .The tests came back pretty inconclusive but pointed more strongly towards Lymphangiectasia.
To cut a long story short there followed many tests, endoscopies scans etc specialist vets ..the list goes on and over £5000 later still no concrete diagnosis. The vet said Peppa had Irritable bowel disease but didn't know if it was secondary to Lymphangiectasia or not. She was still very sick and in the January of this year basically I was told that she was probably not going to survive more than a couple of weeks and it probably wasn't even worth me ordering a tray of food...I was devastated. They said to give her some white fish and mashed potatoe ( she couldn't tolerate any chicken or pasta) and make her comfortable.
I went online and scoured the internet but very little information was available, so I started looking at foods that would help humans with a disorder like Peppas .
I gave her small amounts of manuka honey for anti-inflamitary and it worked, however I am not entirely happy to give this to her too much due to the sugar?? I do give her this if she flares up though.
Also I started giving her spirulina in her fish and potatoe.
She was fed like this for a good few months and seemed ok..when I took her back to the vets to have a blood test, they were surprised at her being so well and still here etc but the blood test showed her albumin levels hadn't changed and she was still dangerously low ....I spoke about the spirulina and manuka honey etc but they were not really interested. I was deflated and decided that my home diet wasn't good enough and put her back on Royal canine gastro low fat which she has been on for the past few months but we are now at the stage where she is almost hairless (even her head is thining) and it is uncomfortable to stroke her as you can feel every bone in her body, her muscle is wasting fast and she has to wear jumpers to keep warm.
Through all of this , she has remained happy and playful (though not as much as she used to),still chases squirrels and cats down the garden and appears not to be in any discomfort or pain. This is what is making me determined to get her well.

I have decide that I will get her blood tested again and take her off the Royal canine and do the home diet as she seemed better on that...I do not get any help with new ideas form my vets though which is frustrating!

Was lily balding but now her hair is back? That must mean she is getting all the right nutrients...would it be a cheek of me to ask what you are feeding her? I have not much faith in the Royal canine now..
Also from the start Peppa has been on pred (10mg per day) and atopica, (ciclosporin)

Sorry for the extremely long message !!

Rachel xx
 
#5 ·
Lily used to eat the royal canin too. Yes, her hair was falling out, and thinning, discolored and just awful. When I get to my laptop Ill upload the pics of her before the diet change and now..you wouldnt believe it was the same dog.
Lilys diet consists of tilapia and quiona(a mexican grain) supplemented with calcium, and balance it a nutritional supplement. I would stay away from the honey, fat is your enemy. Check to see if you can get the quiona in your area, it's difficult for me to find and I can only but it at a health foods store. But, if it's something you would like to try I would be more than happy to give you the recipe.
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#6 ·


The above picture was taken in Feb of this year. Notice her hair color, and how thin it looks. This wasn't her at her worse.


This picture was taken about a month ago, notice how her chocolate hair color is back, and how shiny and long her hair is.




Lily was on 10mg of pred upon diagnosis as well. Now she takes such a small amount that she's on liquid pred, and only takes it once a day along with the azathioprine.
 
#7 · (Edited)
WOW! those pictures really show a difference! Peppa looks much worse than that ...she is actually bald :( but the latest picture is amazing...I would love to get her back to that condition, she doesn't look ill at all and from what I read the other day she was in quite a bad way at some point?

I might try to put some on here of Pep...

I can get quinoa quite easily, it looks like a good all round base for her diet and the fish I've never heard of but is it the same as any white fish? Peppa seemed to do well on fish... I'd love the recipe if you don't mind? Did you add it gradually to her diet before stopping the Royal canin and how long before she got better?​

thanks
Rachel

By the way Lily is gorgeous!..what a lovely colour..​
 
#8 · (Edited)
I know, people can't believe it's the same dog. Even family members are blown away by the change in her condition. Yes, a couple of weeks ago she started acting like she didn't feel well and refused two meals. So, the next morning I took her into the vet and it turned out she had an infection. Of course with the meds these dogs take it makes it very difficult to fight off any infection. She stayed overnight in the hospital with IV antibiotics, got another antibiotic shot before coming home the next day, and then was on oral antibiotics for 2 weeks. She's doing fine now. Lily has probably been hospitalized 10+ times since her diagnosis. She was very, very sick for a long time. The last time she was hospitalized before recently was January, so we've been pretty lucky lately.

This recipe is based on Lily's weight of 7lbs:

2 cups of Quiona (uncooked) mix with 2 cups of water and cook
10oz of Tilapia (cooked) from experience I find that usually if you start out with about 16oz of frozen tilapia you will end up with 10oz after it's cooked. I measured this with a kitchen scale. Now I mainly eye ball it. Yes, Tilapia is a white fish that is low in fat.

Balance IT canine you can order from their website here:https://secure.balanceit.com/marketplace2.2/details.php?i=5&cc=
They are really slow to ship, so I always order it about a month in advance. I started out just adding a little bit at a time to her food to let her get used to the taste of the powder. But, eventually you will want to add 5 black scoops, and 6 white scoops (the scoops will come with the balance IT).

We also add a calcium supplement to the food, we use the NOW brand calcium powder. We add 1 and 1/4 tsp to the food mixture. But, if you want to stick to your protein supplement that's fine as well.

Also add 1/4 tsp of salt.

Let the food sit for about 15-20 minutes after making for it to cool. Some of the nutrients can be deactivated if added to a hot mixture. This batch usually last Lily about 3-4 days. You can double or triple the recipe and freeze what you don't use at the time as well. It probably only took Lily a month or two to start feeling tons better after starting this food. Her energy level was what benefited most, then she started gaining weight, and gradually got all her hair back. I did gradually mix in a bit with the RC for Lily. But, she liked this food so much better she refused the RC so I had to quit feeding it altogether. I really hope this works for Peppa. Changing Lily's diet was hands down the best thing we ever did for her, and my only regret was that we didn't do it sooner. But, a lot of the vets don't put an emphasis on diet, so it was something I didn't pay attention to for a while. But, Lily was about at the point where you are with Peppa when I knew I had to do something. She was skin and bones, you could see every vertebrae in her spine, and even the bones in her head were visible. She had no energy level, I had to force her to go outside and use the potty, it was awful. This food literally saved her life. If you have anymore questions about it, don't hesitate to ask. :)
 
#9 ·
Thanks Emma

I am going to try this...not far off what was working for her before so it should be ok :) Trying to see if i can get the Balance IT here in England or if they will ship it to me..otherwise the equivilent I guess.

I keep looking at the pics of Lily! Really hope this works as well for me

I'll keep you posted :D
 
#10 ·
Great! Yes, please let me know how it goes.
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#11 ·
hi Rachel196


Toby is an 'L' dog. we have him on low fat royal canin and Omeprazole and prednisole. we have struggled with him just like you have but have found that diet was the best cure for Toby. he hasn't had to go back to the vets now for a whole year which has been great for me and my pockets LOL

I too have had some great advice from 'save louie blog'.

I hope that lily gets well soon. I know how horrible this condition is, toby used to go down hill within a click of a finger, its a rare condition and I hope that it will be out in the wide world and the word is spreaded quickly
 
#12 ·
Quick update on Peppa...
She has been on her new diet of fish, quinoa etc for early 5 weeks now and things are definitely looking good! Her energy levels are good, (she is up and at the kitchen gate wagging her tail when I get in from work again which is something she hasn't done for a long time!! Her enormous balloon like belly has completely gone down and she has a neat little barrel belly (and a bit of excess skin) and her fur has started to grow back! (she was bald from the neck down and had started losing it from her head)...
I am so pleased, I know its little steps and still guarded but she is heaps better. I wasn't able to get Balance IT here in the UK but have been supplementing with a seaweed supplement which she is ok with so far...this was the closest I could get to a good supplement that she didn't have a bad reaction to..
I am extremely grateful to Emma09 for her help and really hope this is the beginning of recovery and remission for my little dog.. :)
will keep you posted
xx
 
#15 ·
I need ibd/lymphangiectasia help

Hi ! Is anyone still on this thread chat?? My dog is suffering and I really need advice .

Please help if you are still here.
Thank you !:confused:
I too have been fighting this disease in my 12 yr old 12 lb. chihuahua mix. He also on Pimobendan for his heart so he cannot go on prednisolone., He had diarrhea for 8 months. After prescribed low fat kibble (he hated) I decided to do something different.
I know this is an old post but I would like to share my success with Lymphangiectasia/IBD in my 5 year old English Bulldog; paying it forward bc the online/owner message boards saved me and I gathered my lay-person information from them. Even though I don't take vitamins or eat healthy- here is my dogs diet LOL.. the last 3 months her albumin level rose from 2.2 to 3.5 and now 3.7 and she LOVES this diet- Most of it comes from Louie the Love Muffin Site and what I learned by reading her and everyones post- so THANK YOU COMMUNITY!... If your pup suffers from Lymphangiectasia/IBD please try- I don't cook for me but this has become a habit and not a problem :) Paying it forward to help others who are searching bc vets only know so much and I wish I went to an internist years ago, not just my regular vet and did my own research.
Based off 45lb English Bulldog:

Breakfast:
2 cups mashed potatoes (all skin was peels) or potato flakes (easier)
3 ounces mix 1/2 cup water Honest Kitchen Base Preference Mix- fruits & vegetables
1 packet Purina Forti Flora Probiotic (sprinkle on food/mix in)
1/2 teaspoon Spirulina (from Whole Foods) protein goodness
1 fish oil pill- twisted and squirted over food

Dinner:
1 Cup mashed potatoes
3 ounces mix 1/2 cup water Honest Kitchen Base Preference Mix
1 baked tilapia (from Whole Foods from Peru, DO NOT buy China) baked at 375 for 20 minutes on parchment paper

Every other day: steroid budesonide which we are weaning her off of. She was on 2mg everyday

Intermittent:
Honest Kitchen Goats Milk packet mixed warm water for digestive enzymes

Any other suggestions please add bc this is a horrid condition but I feel I am finally fighting it with her :))

ALL LOVE!

Danielle
I need ibd/lymphangiectasia help

Hi ! Is anyone still on this thread chat?? My dog is suffering and I really need advice .

Please help if you are still here.
Thank you !:confused:
 
#14 ·
I know this is an old post but I would like to share my success with Lymphangiectasia/IBD in my 5 year old English Bulldog; paying it forward bc the online/owner message boards saved me and I gathered my lay-person information from them. Even though I don't take vitamins or eat healthy- here is my dogs diet LOL.. the last 3 months her albumin level rose from 2.2 to 3.5 and now 3.7 and she LOVES this diet- Most of it comes from Louie the Love Muffin Site and what I learned by reading her and everyones post- so THANK YOU COMMUNITY!... If your pup suffers from Lymphangiectasia/IBD please try- I don't cook for me but this has become a habit and not a problem :) Paying it forward to help others who are searching bc vets only know so much and I wish I went to an internist years ago, not just my regular vet and did my own research.
Based off 45lb English Bulldog:

Breakfast:
2 cups mashed potatoes (all skin was peels) or potato flakes (easier)
3 ounces mix 1/2 cup water Honest Kitchen Base Preference Mix- fruits & vegetables
1 packet Purina Forti Flora Probiotic (sprinkle on food/mix in)
1/2 teaspoon Spirulina (from Whole Foods) protein goodness
1 fish oil pill- twisted and squirted over food

Dinner:
1 Cup mashed potatoes
3 ounces mix 1/2 cup water Honest Kitchen Base Preference Mix
1 baked tilapia (from Whole Foods from Peru, DO NOT buy China) baked at 375 for 20 minutes on parchment paper

Every other day: steroid budesonide which we are weaning her off of. She was on 2mg everyday

Intermittent:
Honest Kitchen Goats Milk packet mixed warm water for digestive enzymes

Any other suggestions please add bc this is a horrid condition but I feel I am finally fighting it with her :))

ALL LOVE!

Danielle
 
#16 · (Edited by Moderator)
I too have been fighting this disease in my 12 yr old 12 lb. chihuahua mix. He also on Pimobendan for his heart so he cannot go on prednisolone., He had diarrhea for 8 months. After prescribed low fat kibble (he hated) I decided to do something different. Vet said it’s incurable. So I have been feeding him quinoa with 97% fat free organic hamburger, adding 1/4 tsp Dr. Dobias Soul Food for vitamins, 1/8 tsp spiralina, 1/4 tsp psyllium husk powder steamed broccoli, steamed butternut squash. He seems to be doing good. Need to do a poop test and blood test to monitor. No more diarrhea, energy is very good. May try the tilapia for a change.
I cook 1/2 cup of quinoa with 1/4 lb. Hamburger and add the other things per serving. Just a few sprigs of broccoli and 1/2 ice cube size of butternut squash. Any more ideas are welcome. Thinking to add taurine?
 
#17 ·
December 6, 2022. Our Luna was diagnosed with lymphangiectasia a couple of days ago. Right now we’re feeding her some canned food from the vet but we want to come up with a homemade diet for her. She was about 8 pounds and is now down to six pounds. She started the steroids twice a day this week. She is 15 1/2 years old. We’re hoping we have a couple more years with her! Any suggestions pull be appreciated.
 
#18 ·
I am doing home cook for my dog. He doesn't have either of the diseases in this thread. However, my dog is sick and has been for two plus years. I take him to several vets, each has their area of expertise. Two of them are holistic and both have been to the Chi Institute in Florida. One of them has been trained in what she calls floor therapy. She uses the BalanceIt website to create recipes. She created recipes just for my dog and he loves every one of them. The BalanceIT website is a huge pain in the posterior, but if you have the patience, you can do it. You will need to add supplements, which they sell.

A brief search tells me that some folks have improved the quality of life for IBD patients with fecal transplants. Yes, that is a thing. I've done that a few times for my dog.

The Chi Institute website has a database of DVMs that have been trained in TCVM (traditional Chinese veterinary medicine).
 
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