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Thread: Our experience with Cystinuria - cystine stones

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    Pooper scooper Odessa's Avatar
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    Default Our experience with Cystinuria - cystine stones

    Tucker is an 18mo happy male whom had always been healthy and raised on a strict diet of the most premium kibble I could find. Tucker had sudden onset of frequent peeing, blood in urine and what we and the vet thought was a bladder infection proved to be much more serious. I noticed the change in Tucker on a Wednesday evening, Thursday I made a vet appointment for the following day. Friday the vet did a full exam and urinalysis, by this time his peeing had become a strain that he would now dribble rather then pee in a stream and would take 3x as long for a pee session. Saturday the urinalysis came back negative for any infection but showed cystine crystals and the vet recommended a x-ray and ultrasound.

    I took Tucker into a second vet on Saturday for a second opinion, Tuckers straining had progressed over the 24 hours to the point he was now needing to drip pee every hour. The second vet looked at Tuckers urinalysis and predicted that he might have stones and agreed the next step would be an ultrasound, the only problem is no one does ultrasounds in the 200km radius on a weekend! Tucker was at risk for a complete blockage which would then be life threatening, I was stunned that being in a big city no one could do the ultrasound he needed until Monday! The vet offered to try a catheter to relieve some of the back up in the bladder, he tried and unfortunately he couldn't get it to pass which he said likely confirms Tucker had stones in his urethra.

    So we went home Saturday hoping Tuckers condition wouldn't worsen at the same speed it had in the past 2 days, we waited through Sunday and Monday morning I was on the phone with the specialist office trying to confirm an appointment time from Tuckers referral. They promised someone would get back to me, they didn't until 3pm only to tell me no tech was in that day and the soonest Tucker would be seen was Tuesday at 2pm or I could book for the following appoint on Thursday. I couldn't believe he couldn't get in, this was an absolute emergency! Tucker now was peeing 3 drips or urine with 2 mins of straining. I was told he would make it as long as he didn't stop completely...

    By 5 pm Tucker was completely blocked and I had to rush him to a specialty emergency department. At emergency they sedated him, ran iv and tried to run another catheter with no success. They ran x-rays which showed no stones which further backed the prediction of Cystine stones, the dr did a non diagnostic ultrasound and he saw stones in Tuckers urethra. The ER Dr blasted the stones back into Tuckers bladder in order to drain his bladder, but said he needed surgery first thing tomorrow and not to wait for the diagnostic ultrasound or he will be in the same situation. He said it would be up to the vet if they were comfortable doing the surgery without the diagnostic ultrasound. Six hours in emergency we took Tucker home still half sedated and not sure if our puppy would even make it through.

    Tuesday morning I pleaded my vet to do the surgery and they graciously agreed. They pulled more then 50 stones out of my boy, I still can't believe he had so many. Tucker has spent the week recovering, it is one week today and he is heeling great but still having troubles peeing due to the swelling. He will be seen again in a couple days and then bi-weekly for the first 6 months, then monthly there after until he has 6 months clear of urinalysis. Cystinuria is life long and this is likely to reoccur, it is a matter of when and to what degree. With the severity and his young age his outlook isn't good and it is very painful to think I may have only bought Tucker some more time with us and he will go through this again. This was a very painful and difficult thing for him to go through, it has cost $2000 so far and I was already struggling in debt.

    Cystinuria is a defect which prevents the kidney tubes from naturally absorbing cystine crystals, they build up and create stones. I have read it is highly rare, only 1% of all stones are cystine and it is not controllable by diet. My vet said the only prevention is to lower the amount of cystine crystals by feeding a very low protein diet because protein turns to amino-acids which create cystine crystals but of course protein deficiency also creates it's own set of problems. The Dr recommends Hills urinary, I have my reservations on this and will need to research all options, if anyone has any recommendations I would really love to hear them.

    That said, it has been one roller coaster week, we are so grateful to have Tucker with us today to cuddle and laugh at his goofy ways. Anyone else had this battle too?

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    Default Re: Our experience with Cystinuria - cystine stones

    OMG...what an ordeal. I know what you must have gone through not to mention Tucker. He has to be a real trooper. We had a cat that suffered with crystals. It is a real PITA! Thank you for taking such great care of Tucker.

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    Default Re: Our experience with Cystinuria - cystine stones

    Omg- so glad he made it through okay!! I'm going to tag a couple of members who may have some advice about the diet.


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    Default Re: Our experience with Cystinuria - cystine stones

    I have no experience and so hope you find some treatment for your baby.... Sending lots of positive thoughts and wishing all the best for you all
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    Default Re: Our experience with Cystinuria - cystine stones

    OMG… I'm so sorry to hear about Tucker, I have never dealt w/this and my pets but I did have a kidney stone myself last year that I had to have surgery on. I can't even begin to tell you how painful that was, and I can't even imagine your baby having 50 stones!!! I would say that any food the vet recommends would be your best choice, even if it ends up being Hills. Please keep us posted on your baby… I hope he feels better soon!!!

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    Default Re: Our experience with Cystinuria - cystine stones

    Years ago I had a cat who had problems all the time like this-a male cat. The eventual solution for him was a "sex change" operation. Seriously.
    This came from internet>>> How do we control the pH of the urine? Well, the pH is largely influenced by the diet consumed. Generally speaking, high-protein diets, based on large quantities of meats, lead to acidic urine. Low-protein diets, based more on plant materials, lead to alkaline urine. This diet is designed to balance the proportions of meat and vegetables, such that the dogs’ requirement for protein is met, but not vastly exceeded. We have also carefully chosen the included food items based on their analyzed cystine and methionine content, selecting those with the least amount of these amino acids.

    Another way to trick the urine into becoming more alkaline is to use what are called buffering agents. These are substances that will react in the digestive system and internal organs, to de-acidify, or "buffer" the urine components. This results in maintaining the pH at a higher level, thereby preventing stone formation. This diet offers the option of mixing some buffering agents into the food. The most common one is plain old baking soda (sodium bicarbonate). Some of the other recommended supplements, such as special forms of vitamin C, also serve to help control the urine pH.
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    Default Re: Our experience with Cystinuria - cystine stones

    I'm so sorry that this is happening to your boy. It's much like what my boy went through, but he has Hyperuricosuria and is prone to develope urate stones. The vet wanted to put on on low protein diet as well, but I feed him raw food and give baking soda 3 times a day to control his urine pH. Cystine stones are unfortunately bit trickier than urates, but there's always an alternative to prescription food. I can't give you any advice on feeding, but there'a a Yahoo group for feeding bullmastiffs which suffer from Cystinuria more than any other breed.

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    Pooper scooper Odessa's Avatar
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    Default Re: Our experience with Cystinuria - cystine stones

    Quote Originally Posted by Manydogs View Post
    Years ago I had a cat who had problems all the time like this-a male cat. The eventual solution for him was a "sex change" operation. Seriously.
    I have heard of a similar option actually. They shorten the urethra and widen it by making a new opening closer to the abdominal wall so that they can pass the stones rather then trapping in their natural anatomy. Sounds extreme and not sure anyone would even be willing to do something like that here, but it may be one of the few successful options for him.

    I read a lot of online info too, but was hopeful someone here has been down the same road with their EB and might have a success story. I haven't found anything pertaining to EB or first hand experience or also dealing so many stones at a young age... I also worry about his allergies sticking him on the Hill's RX and the potential problems from feeding low protein.

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    Pooper scooper Odessa's Avatar
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    Default Re: Our experience with Cystinuria - cystine stones

    Quote Originally Posted by RiiSi View Post
    I'm so sorry that this is happening to your boy. It's much like what my boy went through, but he has Hyperuricosuria and is prone to develope urate stones. The vet wanted to put on on low protein diet as well, but I feed him raw food and give baking soda 3 times a day to control his urine pH. Cystine stones are unfortunately bit trickier than urates, but there's always an alternative to prescription food. I can't give you any advice on feeding, but there'a a Yahoo group for feeding bullmastiffs which suffer from Cystinuria more than any other breed.
    Brilliant idea about the Bullmastiff group, I will be sure to try that route. I am surprised raw is working out for you and it gives me hope, my vet immediately shot down that idea with me. She is dead set against home made too, but I feel it has to be better then RX kibble, so unsure of what to do.

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    Default Re: Our experience with Cystinuria - cystine stones

    Unfortunately it is very common misconception that all protein is bad for dogs suffering from urate stones. It the amount of purines, not the protein. Organs are the highest in purines and some other foods as well that we have to stay clear of. Purines are not the worst culprit with cystines, but you need to avoid high purine contents as well. You can find a great purine table by googling "purine table". Too little protein can lead to other more serious problems like muscle loss and heart failure.



    Quote Originally Posted by Odessa View Post
    Brilliant idea about the Bullmastiff group, I will be sure to try that route. I am surprised raw is working out for you and it gives me hope, my vet immediately shot down that idea with me. She is dead set against home made too, but I feel it has to be better then RX kibble, so unsure of what to do.

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