Wanted

[Tayda_Lenny]

Looks like I missed this thread - I just posted this on a different thread - maybe its too late, but my Tayda has Fanconi and this was my "day in the life" with her.

Tayda was just diagnosed in November so it's only been about 6 months that we have been managing her Fanconi. First - the pills she is on:

1/2 pet tab plus - twice a day
1/2 pet cal - twice a day
5 bicarbs - twice a day
1 potassium tablet - twice a day
1 fish oil - once a day (not for fanconi)
1 cranberry - once a day
1 centrum complete - once a week (wednesday)
1 amino fuel - once a week (friday)
1 scoopful of yogurt with probiotics in it (to help with UTIs))

So if you add it all up - she is taking somewhere between 18 - 19 pills per day, depending on which day of the week it is, separated between two meals. The good news is, all of these pills are available over the counter and are not expensive. The bicarbs and the potassium MUST be given intact, the rest can be ground up and mixed with food, provided she eats the food.

When we first started, she was on 1 bicarb 2x day. Since the bicarbs need to be given intact so I would cover them in cream cheese and she would just eat it without inspecting them. After about a week of that, she became wise to them so now I basically have to force her to eat them. It doens't matter what I hide them in, she will spit out the pill if I give them to her to eat on her own. So, I hide them in cream cheese, pry open her mouth, wipe them on the top of her mouth and she will reluctantly swallow them. As of a few days ago, I have started hiding all 5 bicarbs and the potassium in a big glop of the yogurt and if i can get that in her mouth, she will swallow it. Sometimes she spits it all out all over the floor, and I have to quickly scoop up all the pills before Lenny eats them all, and then start over again. I could grind the rest of the pills, but since she rarely finishes her food - I have been giving her the rest of the pills the same way, in case she decides she doesn't want to eat, which is most of the time.

Her food is a mix of dry and wet food. She is super picky so I am still trying to find the right foods that she will eat consistently.

I feed her one round of pills around 7am and food right after. Usually she doesn't touch the food.

I go to work and come home around 4:30pm. I check the crate she and Lenny are in for any wet spots to see if she has peed in the crate (signs of UTI). If she does have a UTI, I call the vet to get a course of Clavamox. Which means two extra pills per day for ~10 days. Luckily the vet has just trusted me that I know what a UTI looks like in Tayda - particularly since in Fanconi dogs a urinanalysis can come up normal even if a UTI exists.

Second round of pills at 7pm and food right after.

We are still getting her blood work done every 3 months until she is stabilized. Every vet visit is around $250 for the venous blood gasses and blood chemistry panel. The vet I found that has the blood gas machine is not familiar with Fanconi so I email all of Tayda's results to Dr. Gonto directly for his recommendation.

Other than the pill/meal times, everything is normal. She plays with me and Lenny, snuggles on the couch with me, gets grouchy at Lenny and turns him over on his back, chases squirrels in the yard, all the usual stuff.

i have a fenced yard so letting her out all the time is not an issue. She does drink a lot more than before, but so far there haven't been any accidents in the house that were not connected with a UTI.

Thats about it. Like I said, aside from keeping things organized with the pills and being more cognizant of what I feed her, it's all pretty much business as usual.

Oh, except - I have pretty much written off going on vacation anywhere. There is just no one around here I trust to take care of her. Which, from a selfish standpoint, SUCKS.

[tanza]

Never too late… and thanks for posting your experience with Tayda.... it is an eye opener to everyone.... Kudos to you for all that you do for her.....

[nomrbddgs]

There are different perspectives on all sides. I wonder too, how many people actually make an effort and if some, 'put on a face' about it, and if some just don't treat it because they don't think it would matter. I think it's important to have different aspects from different people's experiences. I don't understand Fanconi-unless I had a dog with it, I could never really understand it. Just like people can't understand how my Boxer Zina is being treated and what she has gone through and what she will go through. But, if I don't continue on, myself, the breeder, the vets that are treating her, and Cornell University (of which she is part of a study pod) could not draw on to treat other dogs that have some of the same issues. Even though I went into this knowing she would have variable problems, when you face them it is still a shock. I'm lucky, my kids are very good at giving Zina her pills if I am not around, and even though the breeder is about 4 hours away, I can still drop her off if need be. So I can go on vacation. It is not easy for anyone to take care of a sick dog. The same thing has followed Fanconi syndrome. If we don't have people who treat their dogs, we don't have solutions to some of the problems that can, and do, crop up.

Kathy makes very good points-she had five babies diagnosed! Before Benny! Not only does it suck, it's scary. And can anyone imagine how Kathy feels? I'm sure Kathy still feels the following (I know I would);

Denial-it can't be as bad as everyone says. How do I know, I'm not the person with the Fanconi dog!

Anger-You think she doesn't know what people are saying? Not only does she know, she has to defend herself all the time. It could have happened to any one of us!

Bargaining –- Was there a point in going there? The results spoke for themselves.
Depression --- I’m sure there are still days.
Acceptance --- What are you going to do except deal with it!

Then we have Michelle with Tayda and Lenny. She has a different perspective as well. While she probably did research the health background, it's still something you don't expect. A breeder has usually some sort of experience dealing with vets and pills and some health issues. I still say this. A pet person probably has never had to deal with anything remotely like this. I know in all my years with animals, including breeding terriers, I never had a health issue until I had the other boxer and had to deal with leukemia. Even then the pills were minimal. But dealing with Zina has taught me that even with dealing with 8 pills a day-some on an empty stomach, some with food, some not with food, and a specialized diet is tough, Fanconi would be tougher. Boxers will eat anything, not so Basenji's. Michelle's comments above put proof to this. I've had to deal with the odd pill out of the mouth, but thank goodness Zina is good with them. How hard would it be to shove the pills back in on a constant basis and/or crush them all the time?

I still believe each person still has a different perspective on the issue and it's important for all of us to hear what we could have to go through. Many of us will never have to, but it's a real eye-opener for everyone.

BTW, Michelle, you must be superorganized! Kudos to you!

[Tayda_Lenny]

lol - yeah, I am pretty organized, I should post a pic of Tayda's kitchen cupboard and shelf in the fridge. ha.

I was prompted to test when Tayda peed in the few house a few times - which she never does. Once I saw the strip turn color I immediately accepted that she had Fanconi and was frantically trying to find a vet with the venous blood gas machine. For me, the denial was before I tested her. . The breeder assured me before I got her that there was no Fanconi in her line. I trusted that (or maybe I WANTED to trust that), and I didn't test as often as I should have. My anger was directed toward the breeder when I emailed him to tell him about the strip turning color and his response was "oh, yeah, I think her mom is affected too" Come to find out her mom has been on the protocol for 5 years! Uh… I got Tayda 4 years ago - so clearly it WAS in her line. I was definitely angry. Maybe he really didn't know, although I think the person that has Tayda's mom is another breeder and pretty close with him. Who knows, it really doesn't matter now. I should have been testing more - and I'm just glad she started peeing in front of me to give me a kick in the butt.... otherwise I would have continued to turn a blind eye to it. It's not like I didn't read about it on this message board all the time. It was definitely a case of "I got MY dog from a responsible breeder, MY dog doesn't have that"

Right now, she is not having any other adverse health effects - I just watch her weight like a hawk. But, she has actually put on about 1/2 lb on her despite her refusual to eat regularly. Just last night she ate about 2/3 of her meal and I hand fed her the rest even though it was all mushy and gross. Somehow she was willing to eat it out of my hand. I'm afraid I'm teaching her to be super spoiled. Not sure how to deal with that.

I am on the Fanconi yahoo list though and am definitely aware that there are lots of other things that can crop up in Fanconi dogs - seems like they can be sometimes attributed to the loss of minerals... so I'm just trying to really keep up on her bloodwork and analyze the heck out of it. I don't accept that just cause something is in the normal range, that it is normal. I'm looking for trends now and supplementing for that. Of course with Dr. Gontos recommendations. For example, her potassium level has been decreasing with every test. It is still technically in the normal range, but its at the low end now... so I added Potassium to her pill regimen. Im not waiting for it to drop out of range. Low potassium can cause seizures and who knows what else so better safe than sorry. But that means more check ups and more $$. I'd like to think that once she's stabilized we could cut back to testing once or twice a year, but so far we're on track for every 3 months. So that will be $1000 for the year.

Fanconi for us right now is just the inconvenience of all the pills. And I want to keep it that way.

So, for prospective puppy owners - CHECK THE DATABASE.

[lvoss]

@nomrbddgs:

There are different perspectives on all sides. I wonder too, how many people actually make an effort and if some, 'put on a face' about it, and if some just don't treat it because they don't think it would matter. I think it's important to have different aspects from different people's experiences.

Back when BCONC was still able to do rescue and I was the rescue coordinator, we got in a 7 year old bitch that was surrendered because she "kept peeing in the house". When questioned further she had been showing signs of polydipsia, polyuria, and chronic bladder infections since she was 4 years old. We asked if they ever strip tested her to see if she was spilling sugar, "No, our vet doesn't think there is any point. There's nothing you can do if its Fanconi." We were very lucky and there was a home that was willing to take her even knowing that though we had not yet been able to strip test her yet it was pretty much certain she had it. Bijoux lived to be around 12 years old and had a very good life with her new family and responded well to the protocol.

[nomrbddgs]

Oh, there are lots of stories out there that I'm sure we all hear about. The end result is usually it's better this way! Better for whom? Another sad case-'our vet doesn't think there is any point!' Why? Because they didn't want to be bothered. I'm sorry, but some people are just basically lazy and ignorant. We can only educate those who want to learn. And sometimes, it's the people that matter (the vet) that are lazy and ignorant.

[lvoss]

It was their vet's opinion that the protocol was a waste of time and money since it was not written by a vet.

[Basenjimamma]

Wow, after reading this thread I am overwhelmed. Our Otis, 4 months old, comes from clear/normal parents, but I am so going to have him tested. This is scary business and we can not hear enough of it, IMO. It can not become on of those diseases we just learn to live with.
Michelle, thank you for that "a day in a Tayda's life" I think if more people see a thread like this before they get a Basenji from a not so reputable source they will ask the right questions and demand the answers before they take a leap and become owners of a beautiful but potential sick puppy.

Arlene, as a petowner and not a breeder I so appreciate what you are trying to make with this thread and article. Thank you.

Basenjimamma

[tanza]

@Basenjimamma:

Wow, after reading this thread I am overwhelmed. Our Otis, 4 months old, comes from clear/normal parents, but I am so going to have him tested. This is scary business and we can not hear enough of it, IMO. It can not become on of those diseases we just learn to live with.
Michelle, thank you for that "a day in a Tayda's life" I think if more people see a thread like this before they get a Basenji from a not so reputable source they will ask the right questions and demand the answers before they take a leap and become owners of a beautiful but potential sick puppy.

Arlene, as a petowner and not a breeder I so appreciate what you are trying to make with this thread and article. Thank you.

Basenjimamma

Amen to that…. it is scary business... especially now that it can be prevented... kudos again that test (and health test for more then just Fanconi).... For many, many years Fanconi was a disease that we just had to live with and try to breed the best way we knew how... knowing the bloodlines and the health behind the dogs.. and hoping for the best... and being crushed when you did get that call or strip tested and found your beloved pet spilling.... Now there is a test... but it doesn't just end with
Fanconi testing.. there are other genetic problems in the breed that are just as horrible, IMO.... and the only way to stop people from breeding without testing is NOT to buy from them...

[JazzysMom]

@Tayda_Lenny:

When we first started, she was on 1 bicarb 2x day. Since the bicarbs need to be given intact

We are still getting her blood work done every 3 months until she is stabilized. Every vet visit is around $250 for the venous blood gasses and blood chemistry panel. The vet I found that has the blood gas machine is not familiar with Fanconi so I email all of Tayda's results to Dr. Gonto directly for his recommendation.

.

Question: Why does the bicarb have to be intact? The paper I have with the Protocol info on it {Fanconi Disease mangement Protocol for Veterinarians by Steve Gonto} says the bicarb can be crushed somewhat and put into a gel-tab and more easily hidden in food.

Also, I guess I'm pretty lucky – the venous blood gas test only cost me $80 at an emergency vet clinic, and the blood chemistry panel is $88, so only $168 total.

As I mentioned before, my vet is also not familiar with Fanconi, but is eager to learn and will be in contact w/Dr. Gonto as we move forward.

[Tayda_Lenny]

If the bicarbs are crushed and given to the dog they will neutralize whatever they are in… i.e. whatever you use to hide the pill. If they are given intact, they will buffer the dog, rather than the food. The protocol does say that if the dog is resistant to eating the whole bicarb hidden in some cheese or something that you can crush it up (as little as possible) and put it in a hollow gelatin capsule. I have never done that - I have just found ways to get them in Tayda.

That's good about the cost. I was considering asking if I could just get the bloodwork done and not have the office visit so I wouldn't have to pay the office visit fee - since it usually just consists of me saying "ok, i'll send these results to Dr. Gonto, and let you know what he says, thanks." That would save me another 60 bucks and I'd be down to about $190 also....

[tanza]

That is what I have heard and been told… about the bicards... that they should be given whole... but whatever is needed to get them into the dog... works.... most that I know have had to do the crushed and put into a gel cap....

And for Tayda... I would certain lean to just have bloodwork done... and just get the results.. since it is really Dr. Gonto that is advising his treatment... and honestly... I would be pretty pissed off with paying for an office visit with an ongoing health problem... my Vets do not charge for that....

[nomrbddgs]

Hi again guys,

Patty, did you get my message to you?

Has anyone tried those 'pocket pills'? I think that's what they are called. Apparently they are treats with a pocket in that you hide the pill. I don't know, but it may be worth a try?

[Patty]

Nomrbddgs - I think so. I have emailed my editors to get your request in our newsletter (BOBA News) and am now in the process of emailing the Basenji correspondent of Our Dogs (UK weekly).
Am I correctthat your newsletter is BCOC?
Did you send another later message? If so I didn't get one. My apologies for not replying earlier.
Incidentally - just remembered - the OD correspondent also had (many years ago) a Basenji cross Boxer. He looked just like a Basenji but Boxer size

[JazzysMom]

Tayda, where do you get your sodium bicarb? I've looked at a couple of pharmacies but can't find plain' ol' sodium bicarb. I find antacids which have sodium bicarb as an inactive ingredient, but not the 10 grains tablets.

[Tayda_Lenny]

I got mine the first time from Walgreens, but then when I went back a few months later they said they didn't sell them anymore. I went to the pharmacy at Stop and Shop (grocery store) and they had a bottle. They said that if they didn't have any they could order them or me. It is about $18 for a 1000 ct bottle.

I have also found them online at amazon.com and even on ebay, but have not bought from there yet. The brand they sell is called Concord…

This is what the bottle I have looks like (URL brand): Crappy pic but you get the idea...

[JazzysMom]

@Tayda_Lenny:

I got mine the first time from Walgreens, but then when I went back a few months later they said they didn't sell them anymore. I went to the pharmacy at Stop and Shop (grocery store) and they had a bottle. They said that if they didn't have any they could order them or me. It is about $18 for a 1000 ct bottle.

I have also found them online at amazon.com and even on ebay, but have not bought from there yet. The brand they sell is called Concord…

This is what the bottle I have looks like (URL brand): Crappy pic but you get the idea...

Thanks – our Walgreens doesn't have them either. I guess I'll check the grocery store pharmacies and see.

[dcmclcm4]

I am with my third B with Fanconi. She turned 10 in December. Two of them were rescues. I also have a young rescue, 18 months old, who was tested via the DNA test, and is probably affected. He came from a BYB in Southern OH and his parents came from KY. He was sold with other Bs to an Amish commercial broker/breeder in central OH so his relatives are probably still breeding and the pups are being sold at petstores. He will probably stay with me permanently as he originally had socialization issues and I was working with him on that when I had him DNA tested. I have all my rescues DNA tested for Fanconi. It is much easier now that one only has to send in a cheek swab but if one of my Bs did come back probably affected then I would send in blood for research purposes.

My suggestion is not to buy from breeders who do not DNA test. If you do anyway, have your dog DNA tested. If you do not DNA test, start urine strip testing your dog monthly starting at 2 years of age and train your dog to take pills. I train mine using brewers yeast tablets coated with dog food. If you do not test your dog monthly, do not have a doggy door and make sure the vet is doing a urine test at the yearly visit. My first rescue with Fanconi was diagnosed soon after being rescued because the owners did not strip test and because the dog used a doggy door they did not notice the frequent peeing. Originally it was thought that he had an UTI. The dog had been to a vet right before being rescued but ironically no urine test was done. He was not always good at taking pills. I think he would have lived longer if he was.

[Terry]

We currently have 2 Fanconi dogs, but have had 6 altogether. We get our bicarb from Costco; they don't have it in stock, but it only takes 1 or 2 days to get it. Here in CA it is $12.75 for 1000 of them. Note: you don't have to be a Costco member to use their pharmacy!

Thanks to the DNA test, we hope never to have to worry about Fanconi again.

Terry

[kiroja]

I've gotten them at WalMart. I think it was $12.