Cystine Crystals

[pigbaxterboo]

I did a search before posting and although I know it's a rare disease, (though thankfully) I'm struggling to find others suffering with it.

My George is 14 months, he's been treated on and off over the last 3-4 months with what the vet suspected was cystitis. When it kept re-occurring he decided George needed an x-ray and samples sending off. Found out last week that the high level of cystine crystals are a big concern. I've been told that cystine stones are opaque so unlikely to have been picked up on the x-ray and that if he has crystals it is likely that he has stones too.

I know there's no cure, and only some say that a diet can help with reducing crystals, reading up there is so much conflicting information. Some say that a low-protein diet is a myth, others say it's all about the quality of the protein not necessarily the protein level.

I've sent an email to Dr Paula Henthorn in Philadelphia who has a research program ongoing, into finding a DNA test for cystinuria, I'm not sure if she has any bulldogs on the program or if she'll want George on it...or what it entails for us!

It does seem that the US has better food options for dogs with urinary problems, than what's available in the UK. I'm still searching for a suitable alternative to the vets recommendation of Hills U/D which is not what I want him on long term, or at all!

I'm watching him like a hawk, to make sure he's drinking lots and his urine has good flow.

I have read that other breeds are getting good results from neutering.

Sorry for my long post! Just wondered if other members had any experience in coping with this dreadful disease??!

 

[Lucy-licious]

Hello again...good of [MENTION=2277]Suzy2[/MENTION] to point you in our direction. I have no experience either but I do feel your pain when it comes to the dog food thats available here in the UK.
I'm thinking maybe [MENTION=4]Lindathedogsmaid[/MENTION] may be able to offer you some help with this. If not I hope that someone here can. xx

 

[Vicaroo1000]

No experience to share but sending all the love in the world to your baby there! I'm certain that your experience and research will benefit many here at EBN. Our collective experience is a valuable thing! Welcome.

Vicki, Bea and Bo

 

[SunDog]

I think neutering/spaying can help with infections if there is a superficial defect (kind of a good thing anyway in a lot of people's minds). Lupe had a slightly deformed lady part (out of respect for her, I shant be explicit) which was NOT looked at when she was altered, nor did we know to ask the Vet to look, so it was months later that we discovered she needed another surgery to correct the problem to stop chronic bladder infections.


Nevertheless, she still continues to have crystal problems (struvite), which I'm learning can just be genetic.


We add water to Lupe's food. I also try to pick up a few gallons of filtered water every week ( $1 a gallon here). That can help. She's on the Hills right now, and it works and she doesn't have allergies etc. Every time we take her off her PH goes wacky and the crystals return. Still, part of me feels like the Hills/Royal Canin deal is a scam and I'm always looking for another approach. I think the only reason these work is because they're high in salt, which makes the dogs drink more. Over time, that sodium in not a good thing at all.


I'm assuming they've checked to make sure the crystals are not the result of something else, like an infection.

Good luck! Keep us posted with any discoveries. What a cutie you have!!

 

[cowsmom]

I don't have any experience with this but just wanted to say hi and welcome and I'm sure someone here can help you. So hope he gets better

 

[Davidh]

Welcome to the site and no help here either, just hope he gets better soon.

 

[pigbaxterboo]

I think neutering/spaying can help with infections if there is a superficial defect (kind of a good thing anyway in a lot of people's minds). Lupe had a slightly deformed lady part (out of respect for her, I shant be explicit) which was NOT looked at when she was altered, nor did we know to ask the Vet to look, so it was months later that we discovered she needed another surgery to correct the problem to stop chronic bladder infections.


Nevertheless, she still continues to have crystal problems (struvite), which I'm learning can just be genetic.


We add water to Lupe's food. I also try to pick up a few gallons of filtered water every week ( $1 a gallon here). That can help. She's on the Hills right now, and it works and she doesn't have allergies etc. Every time we take her off her PH goes wacky and the crystals return. Still, part of me feels like the Hills/Royal Canin deal is a scam and I'm always looking for another approach. I think the only reason these work is because they're high in salt, which makes the dogs drink more. Over time, that sodium in not a good thing at all.


I'm assuming they've checked to make sure the crystals are not the result of something else, like an infection.

Good luck! Keep us posted with any discoveries. What a cutie you have!!

poor Lupe, sorry to hear of her problems but thanks for sharing your info! I've not looked into struvite at all, I have heard of it, there are quite a few different types from what I can gather. I had a bit of an insight into the urate ones when I first started researching and got mixed up between them and cystine. Must admit I'd not read anything about cystine being caused by an infection, all I can find is that it's a genetic defect of the kidneys. I am looking for a food which has a decent quality protein in it, I won't know until I've tried it whether it will make any difference at all, but I can't help but feel it's the best way forward, or at least the first avenue to explore. I might be completely wrong, just wish there was a right way that everyone agreed with and that worked, it's really frustrating!

 

[Hanx67]

Hi, I am new here but actually found the forum when looking for info on crystals. This thread showed up and immediately registered. Possibly our 2yr old bulldog has the same condition. Had noticed blood in the urine and had it tested. The results showed a becterial infection and all sorts of crystals (struvite, urate, and some other stuff). The Vet told me its possibly genetic and has to live on Royal Canine UC and Hills UD for life!
Naturally we were all upset as Hanx (thats his name) enjoyed his cookies and all sort of stuff! He was not that happy with the new food and was looking pretty confused! In any case, we had no choice, gave him the medication for the infection, as well ended hand-feeding the new food. After a while I thought there had to be something natural to mix with his boring menu to cheer him up a bit! I did a lot of research on the net looking for low purine foods etc, and found that eggs, chicken, potatoes, carrots, parsly, ricotta, pasta and rice should be ok. We started boiling some water, throw in some small pieces of chicken, a carrot and a potatoe, some parsely, and eventually throw in a bit of pasta (or rice). Once a week added an egg or some ricotta. Smelled great! Mixed same with his vet food, and the dog was as happy as ever. We did not see any blood in the urine any more, but 3 months later I decided to have another urine test just to make sure all was ok. To my surprise and big disappointment, the infection was there and also the cocktail of crystals. This time round we followed the diet strictly (+ medication for the infection), and repeated the test after one month. No infections or blood detected, but still there were crystals, though less. Since I am worried that this vet food is not ideal in the long run, I asked the vet if I could give some vitamins, and will be getting him Multibionta.
In any case, fact is that this is a condition he has to live with, but I cannot accept that there isnt anything natural to mix with the vet food. I decided to take a risk and give him one egg a week and see what happens. I will test his urine again in a month's time or so and see if with just an egg a week I messed things up again! The vet wants that I dont add anything as she does not know what is safe, due to the variety of crystals.
I think given the situation there is no choice but to give the vet prescribed food, but somehow we need to find some risk free natural food to add. This is my recommendation to you, though I admit that I still have to identify what is completely safe. I had to take the risk and try one thing (the egg) at a time and hope for the best. If it works, I will then add some other ingredient, leave a month an make another urine test. So its going to take time and money, which is not ideal. If anybody has some clue re a natural food whihc is 100% safe given the condition, much appreciate to know! Thanks

 

[pigbaxterboo]

Sorry to hear about poor Hanx, it really is frustrating when all we want is the best for them. I still find it hard to believe that they can't make a good quality prescription food, why it has to be only the RC and Hills that are available to us. It's such poor quality ingredients, though I've also been told that that's all they should have too. I was persuaded to try it for 6 weeks, but I'm adamant that after the 6 weeks I will be trying him with a different, better quality food. My instinct is to go with a wet food, with top quality ingredients but low protein. I know with urate crystals they recommend a low purine diet, a lot of dalmatians suffer with these and get good results from a home-made raw diet, but not sure if any of those have overcome a cocktail of crystals with diet?? I read a lot of information from dalmatian forums I came across. I agree it's just a waiting game, to see if what we try helps at all, I think what you're doing sounds perfect, good luck and hope you manage to get the balance right for Hanx. Thank you for sharing

 

[Hanx67]

Hi. I also looked up a lot of dalmation stuff and maybe you can try out mixing low purine foods with his vet food. Once you add water its the same thing as wet food, but cheaper and you know what you are giving your bully. Just boil some small pieces of chicken (I used to buy sliced chicken breast, cut in small pieces and freeze), have it boiled and add rice etc (see my other post). A friend told me that maybe rice is better than pasta. The dog loved it, and had no external signs that something is wrong. Always happy, shiny coat, etc. Maybe it will do the trick in your case. On the internet also found recipes to make low purine biscuits!

In any case, if there is someone out there who knows something more about such issues, and can suggest a safe natural food, pls do drop a line. There has to be something apart from water which is safe enough! Thanks

 

[RiiSi]

My Usko was diagnosed with urate stones and had an operation to remove then. The vet also recommended Hill's prescription kibble but I declined. Usko use to hate kibble, he only ate it if he was really hungry. He was too thin and he was starting to react badly in other ways also. I started feeding him raw at about 7 months. Not knowing he had the same defect that Dalmatians do I of course gave him meats with lot of purines.
Since I refused to feed him that kibble I've done a lot of reseach on this matter. I still feed raw only not anything high in purines. I've added more veggies and also give him a tsp of baking soda. (Potassium citrate would work also, but can't get in Finland) He's also getting 1 tablet of Allonol per day. It's been less than 2 months since the surgery and there's no infection, stones or crystals. He's urine Ph is even a bit too high at the moment so I just redused the amount of baking soda. I test his urine Ph my self every week and the vet will check it recularly. Most vets get their knowledge about feeding from the dogfood companys so that's why they say it's the only thing to feed.

 

[LisaMarie]

[MENTION=3458]pigbaxterboo[/MENTION] another member when through this with his dog, He wrote about it not long ago and it was a great article.Hes username is [MENTION=1531]Lkane0322[/MENTION]

 

[pigbaxterboo]

Thanks I read their post earlier today! Their dog suffers with a different type of stone, but their story was great to read, really positive

 

[pigbaxterboo]

Had Georges first test for cystine since we found out, done today. No crystals found!! So pleased that I seem to be doing something right :D still have to have regular test every few months, but so far so good, we're going in the right direction for the time being.

 

[2BullyMama]

Had Georges first test for cystine since we found out, done today. No crystals found!! So pleased that I seem to be doing something right :D still have to have regular test every few months, but so far so good, we're going in the right direction for the time being.

Great news... keep up the great work!