Just need to vent - *@^@#$ Fanconi!

[DebraDownSouth]

I think Pat had a logical question.. and one I was wondering. At some point, most of us have to consider that. If you feel the answer is no, GREAT. But please know that most here respect you have a right to make that call.

With a new baby, lack of sleep, everything gets magnified.

I know people hate me suggesting it so much, but if Tayda does not have heart issues, about the only thing you don't use it with– consider cyproheptadine for an appetite stimulant. It works wonders most of the time. I know with Sayblee I got so tired of having to spoon feed her, and the drug just helped incredibly. She sucked down her food, all done.

I'd also change up how you give the pills, or rather what you give them in. At least a little variety, especially if you have her on cypro and she is HUNGRY, might help.

Not much more I can add except when people talk about lacking sleep I nearly cry with empathy. It is a living hell that affects everything. Sadly, you may need to put her into a crate at night with an easily washed towel or 2 for bedding so you don't have to get up with her for a while. You need rest.

[Terry]

I hear you, Michelle. And I know how hard it is, although I was fortunate not to have a baby in the house, I did have 3 with Fanconi at one point, so we definitely had the revolving door at night - just when we would doze back off from taking one out, another would need to go… And while we generally managed to get everyone's pills in without fear/argument, we did have that problem when we were doing sub q fluids. We couldn't bring out the bag until we had her secure or we wouldn't catch her.

Note to all, excellent suggestions about crushing pills, but the primary medication that needs to be given 2 or 3 times a day is the sodium bicarb, which can not be crushed, must be given whole.

Have you tried the Pill Popper? Quicker and less traumatic for us than prying mouth open, attempting to stuff treat/pill and then holding mouth closed.

Terry

[Tayda_Lenny]

Yes, I wish the bicarbs could be crushed but they can not. they must be given whole. She gets 10 bicarbs per day. I do crush all of the other pills and mix them in her food. Sometimes she eats it all, sometimes she doesn't and then I will warm some white rice and mix it in with her food and that usually does the trick and she will eat it all. I've tried many many many MANY different ways to hide the bicarbs to give them to her and the only thing that works consistantly is hiding them in a glob of cream cheese, opening her mouth and wiping the glob on the roof of her mouth, and then holding her nose toward the ceiling so she swallows the glob. I'll try to mix it up and use other things, and sometimes something will work for a little bit, but then she finds a way to spit the pills out. Yesterday I encased each pill into a segment of bread, dipped it into some chicken gravy and she ate them without protest. I mixed in some empty bread balls w/ gravy to throw her off. It was great. This morning, I tried it again and she spit out the first one. So back to the cream cheese. I have a pill popper, but I've never been successful at it. I must try again… as I keep hearing that it is way easier.

Thanks everyone for the thoughts, suggestions and sympathy. It does help to know you are all supporting me.

I know we will have ups and downs, the weekend was a definite down... but yesterday was pretty good. She took her pills without protest, ate all of her food, and peed only on the pee pad in her crate or outside. That's all I can really ask for right now. It was nice when I got home, so I played with Tayda and Lenny outside for a while with their toys. Tayda has never been all that playful - even when I got her at age 2 - but she was chasing the toy and playing keep away from Lenny and trying to rip it's guts out.

[tanza]

Bravo Michelle!!!! Even a little victory is a good victory!!!! And certainly I understand needing to vent… we are here for you and whatever decisions you make....

[Buddys Pal]

Gosh Michelle, sorry to read all you are going through. Since this is a forum and you asked for help, I was wondering if you ever considered these ideas:

1. for her elimination, have a corner somewhere out of the way. Set up a medium pan of some sort. A metal pan from a large dog kennel or a baking pan for instance. Cover it with pee pads (the first time get one with her pee on it, place a piece of sod on it or some dirt (?). It has worked many times before with clients' training their puppies. You will have to use your imagination to fit your lifestyle, but it is an idea….
2. How many pills does she get every day? I hid them in small pieces of hot dog, cooked beef heart, velveeta cheese(best to form the ball). If you put it in her bowl with a little food, she may like the variety. Suggestion so she is hungry at mealtime/pill time: don't leave the food on the floor all day. First it can get bacteria from sitting, and if she realizes she has to eat it all because it will disappear if she doesn't eat it-you get the idea. Second, she will be hungry if she did not eat that am or last pm, etc. I will stop here to keep it short and sweet. Will continue to follow this thread, good luck.

[Tayda_Lenny]

Thanks for the suggestions. She used to be trained to pee in a litter box with pine chips in it, but somehow she untrained herself about a year and a half ago, and I have been unable to train her again. I could try with the pee pads, though, instead of the pine chips, and see if that makes a difference.

She takes 10 whole pills per day and a number of others that are crushed into her food. I have tried many many things, including the things you mentioned - and she is able to pick the pills out of all of them. However, last week I tried wrapping her pills in little bread balls, dipping them in gravy and she eats those no problem! It's quite a breakthru. It worked the first day with a particular type of bread I had, and then the 2nd day I tried it with some leftover hot dog buns I had and it didn't work! So, I guess I'll be buying this EXACT bread from now on! It's WAY nicer for her to be eating the pills on her own, rather than having to force them down her. I am expecting that it will stop working at some point, so I'm just enjoying it while it lasts!

@Buddys:

Gosh Michelle, sorry to read all you are going through. Since this is a forum and you asked for help, I was wondering if you ever considered these ideas:

1. for her elimination, have a corner somewhere out of the way. Set up a medium pan of some sort. A metal pan from a large dog kennel or a baking pan for instance. Cover it with pee pads (the first time get one with her pee on it, place a piece of sod on it or some dirt (?). It has worked many times before with clients' training their puppies. You will have to use your imagination to fit your lifestyle, but it is an idea….
2. How many pills does she get every day? I hid them in small pieces of hot dog, cooked beef heart, velveeta cheese(best to form the ball). If you put it in her bowl with a little food, she may like the variety. Suggestion so she is hungry at mealtime/pill time: don't leave the food on the floor all day. First it can get bacteria from sitting, and if she realizes she has to eat it all because it will disappear if she doesn't eat it-you get the idea. Second, she will be hungry if she did not eat that am or last pm, etc. I will stop here to keep it short and sweet. Will continue to follow this thread, good luck.

[Patty]

My heart goes out to you - I don't have any new suggestions but i had to just let you know that.

[agilebasenji]

how are you doing michelle?

i was thinking about you.

[khanis]

I know this is chiming in late, but having lived with Fanconi affecteds over the years, I have found a number of things that 'work' on most of them.
First, I would cease putting any type of medications in her meals.
She may be passing themup because she does not want them.
Bicarb is nasty bitter and why eat if you won't have to? That is what she is thinking.
Lenny, well, he is just pigging to get it fast and probably doens't even taste them!

If she takes the cream cheese pilling, just stick with it because it works…
just VARY your times so she does not expect it at any given time.

There comes a time when we have to decide:
1-do I want to make sure my dog is getting a kazillion supplements a day, yet starting him/herself?
or
2-would I rather see my dog eating regularly and feeling good without the supplements?

At nearly 10, you are doing good with her... but her body will tell you when it is time.
When Benny let the youngsters invade his 3' bubble, I knew he'd reached his limit... he was telling me by observation.

Good luck with her... many belly rubs to Tayda.
And a pat on the back to you. Fanconi is hard. Real hard. And it takes a dedicated owner to help our dogs live the best most fulfilling and happy life possible when inundated with this horrific affliction.

[DebraDownSouth]

Letting Fanconi advance, knowing how horrible it can be, is something I cannot even comprehend, Kathy. To me it's like saying eh, I hate insulin shots that keep me healthy, so I'll just stop, let my blood sugar soar, go blind, lose a foot, die. So I have to utterly disagree with you and say at 10, your dog could live a mostly healthy 3 to 5 or more years WITH the protocol, so find a way to get the pills in even if you need to get a capsuling machine (they aren't that expensive) to avoid the taste. It isn't like the protocol keeps them alive, barely. It helps drastically minimize the effect. Call Dr Gonto for ideas.

[Tayda_Lenny]

Hi Everyone, I really appreciate the thoughts and suggestions. Things have been going pretty well with Tayda - still up and down of course, but more up than down recently. For the pilling, she really has become skilled at spitting out the cream cheese, unfortunately. For a few days she happily ate the pills hidden in a bread ball dipped in gravy, but then she figured that out too. So, then I started pilling her with the pills in the bread ball and it's actually easier than the cream cheese was. I found the little pocket that is on either side of the back of the tongue, and when I get the bread ball into that pocket - down the pill goes. Easy peasy (for now). I've also been able to hide 3 bicarbs in one bread ball and 2 in the other, so I actually only have to pill her twice at each session.

She still hasen't gotten the hang of peeing on just the pee pad and not in her bed, but I just bought more reusable pee pads and fleece bedding, so I can do laundry just once a week with all of her stuff, instead of multiple times a week. Not ideal, I know… but until I can figure out how to get her back into the groove of peeing just on the pee pad, this at least makes it easier.

I have to say though, she seems uncomfortable. She goes through spurts of playing and fighting with Lenny, but her tail is usually down nowadays... I always think when her tail is down, that means she's unhappy or not feeling well. She has her annual checkup in a few weeks so we'll see what's going on with her bloodwork, maybe there's something off with her supplementation that is causing her discomfort?

[DebraDownSouth]

I am glad the pilling is going better but sorry she is not doing so good.

I wish that Fanconi owners would make a web page of the horrors of this disease to share with people who don't test their dogs, both their pets and those they breed. So many pet owners from byb/puppymill/rescue that aren't tested.

[nomrbddgs]

I'm really sorry she's not doing better, this will be hard on you.

I have to agree with Kathy. When a dog is constantly avoiding being pilled, to the point of avoidance of feeding times, you have to make a decision if it's worth it or not. I would think, at this point, the dog would be trying to tell you it is tired of the process. In my mind, you are now keeping the dog alive for you-not for the dog's quality of life. Kathy has been through this a number of times and knows what works for her. Not everyone would agree with what I am saying. But having been through a number of sick dogs, I would never, ever impose my 'feelings' on a dogs quality of life. I certainly don't think I could do the longterm fanconi protocol. But, that would be my choice and my lifestyle. I just think there comes a point when a dog knows it's time to stop and wants to be let go. Again, this is my opinion and I think everyone has their own threshold of tolerance.

[Tayda_Lenny]

This is so hard - it seems like most of the time when someone on the Yahoo Fanconi list posts a message of a Fanconi B crossing the rainbow bridge - it is something drastic that has happened - uncontrollable seizures, cancer, things like that…. none of that is happening to Tayda. I feel like she is just progressing with regular 'ol Fanconi. She has a few elevated kidney numbers so we have her on the hybrid protocol, but there is nothing MAJOR going on with her. But, regardless of what her bloodwork numbers are, her disease is progressing. And she's getting older. She will be 10 in a couple weeks and maybe some of what is going on is just apart of being an aging basenji. For the past 4 years, I have tracked and charted and calculated the protein levels in her food, made sure her supplementation was spot on, and every night - refused to go to bed unless she ate ALL of her food with pills mixed in, even if it meant re-making her food at 11pm with a new batch of pills in a yummier medium - like warm rice, pasta or something else besides the kibble. Even now with the baby, she gets pilled at almost exactly the same times every day, and she gets all of the rest of her vitamins I'd say 95% of the time. Sadly, I don't always have the time or the energy to spend hours chasing her around with a food bowl of vitamins, and I feel SO guilty about that remaining 5% of the time when I decide "it's ok, she got most of them." At what point do you say "ok, this poor dog has been through enough." And what if her bloodwork comes back and she's deficient in a vitamin or two that we could increase to put her back on track? If she's been through enough already, is it worth getting those extra few vitamins in her? Will it make her happier? Will she become the dog she was 5 years ago before she was diagnosed with Fanconi? Of course not. But, even pre-Fanconi - she was always a picky eater, she was always on the skinny side, she was always the dog that wanted to be close by, but not on your lap.

I don't know. I miss seeing her curly Q tail, she has it down a lot of the time these days. Why? I don't know. I don't know if she is in pain, I wish she could tell me. She'll turn her nose up at kibble, but if I make her pasta she'll come prancing in and run through her repertoire of tricks in advance to my even giving her the commands as if to say "That's everything I know, now DROP THE PASTA!" Is that how a dog behaves if she has checked out? Doesn't seem like it, but she can't live on pasta can she? Sigh....

[lvoss]

My old man was diagnosed with squamous cell carcinoma in September. The primary tumor is on his soft palette and he has a metastasis on his neck. Some days he does not curl his tail much and when he does it is a loose curl, he just doesn't have the muscle tone to curl it any tighter any more. We were given 2 options for treating him, the first would have required him to go in weekly for radiation treatments that might have bought him 3-6 months. He would have had to spend 4-6 hours at the vet and undergone anesthesia at each appointment. He hates vet visits. The second option was treat with piroxicam, an NSAID that has shown some activity against this type of cancer. We have opted for giving him the piroxicam and doing our best to make him comfortable. He still likes to eat but stretching his head all the way to the floor to eat out of a bowl is no longer comfortable so we bought him an elevated feeder. He is losing muscle tone so getting in the bed is hard so we got him his own ottoman to use as a stepping stool or his own bed, whichever he chooses. Right now, though we have good days and bad days, the good days are more often. He still seeks out the best sunny spots to lay, begs for tasty morsels, and comes down stairs eagerly for his breakfast but he moves slower and it seems each day he ages more than I thought possible. I know he will let us know when it is time but it is hard especially on the bad days, when the cold makes his old bones stiff and he doesn't move around so well.

Let Tayda tell you what she wants. Do the best you can and cherish the time you have. It doesn't sound like she has checked out but she may not be in it for the long fight anymore either.

[lvoss]

My old man was diagnosed with squamous cell carcinoma in September. The primary tumor is on his soft palette and he has a metastasis on his neck. Some days he does not curl his tail much and when he does it is a loose curl, he just doesn't have the muscle tone to curl it any tighter any more. We were given 2 options for treating him, the first would have required him to go in weekly for radiation treatments that might have bought him 3-6 months. He would have had to spend 4-6 hours at the vet and undergone anesthesia at each appointment. He hates vet visits. The second option was treat with piroxicam, an NSAID that has shown some activity against this type of cancer. We have opted for giving him the piroxicam and doing our best to make him comfortable. He still likes to eat but stretching his head all the way to the floor to eat out of a bowl is no longer comfortable so we bought him an elevated feeder. He is losing muscle tone so getting in the bed is hard so we got him his own ottoman to use as a stepping stool or his own bed, whichever he chooses. Right now, though we have good days and bad days, the good days are more often. He still seeks out the best sunny spots to lay, begs for tasty morsels, and comes down stairs eagerly for his breakfast but he moves slower and it seems each day he ages more than I thought possible. I know he will let us know when it is time but it is hard especially on the bad days, when the cold makes his old bones stiff and he doesn't move around so well.

Let Tayda tell you what she wants. Do the best you can and cherish the time you have. It doesn't sound like she has checked out but she may not be in it for the long fight anymore either.

[DebraDownSouth]

Is 10 young? Yes. Are there plenty of Fanconi dogs living much older and in good shape? Yes. But I do wonder if other things are also going on with her, medically. And it does not sound like AT ALL that you have missed enough pilling to be a reason for the disease progressing faster. Sometimes no matter what you do, it just does.

Can she live on pasta? Yeah, if you ground chicken with it so she's getting protein.

I am sorry the Wimauma dogs have such high rate of Fanconi, but I hope that the research Pam is undertaking to see if supplementing low levels from Dx instead of blood gas indications may help stave off symptoms ever beginning. And I hope that we get such high rates of testing and responsible breeding that Fanconi becomes totally rare ever. But for now, people like you end up suffering, I believe, more even than the dogs you love because of it.

I am going to be flamed, but I don't much care.

I don't know if she would be her old self if you got her routine 100 percent. I don't know if things would be much easier if you got her on cyproheptadine or another appetite enhancing drug so she was HUNGRY and would eat easier, including pilling.

I do know that I believe you have the absolute right to say enough and let her go, even if the above were true. You sound so sad and exhausted. You have given her your all for so long and if you have reached a point where you just can't keep doing it, realize inside that you gave her a better life than 99.99999 percent of companion animals on EARTH get for even a year, much less 10. If your gut says time, it is time. I wish I could send you the strength to not second-guess or be so sad, but all I can do is say thank you for being the kind of owner I wish all dogs could have.

[Terry]

Michelle, I know how hard it is. You never stop wondering if you did enough, if you had just tried a little harder. But in your heart, you will know when you and Tayda have given everything you have.

The Fanconi test is one of the best things that ever happened for Basenjis. Yes, it may have some issues, but compared to not knowing anything, it's magnificent. We had to make breeding decisions based on, "Well, no one's ever said any of this dog's close relatives have had Fanconi," and "All the dogs are strip tested monthly."

All you can do is love her for as long as you have her.

Terry

[tanza]

Michelle, from those of us that have lost our Basenjis over the years, it is never easy. As Terry said, because we are human, we always will second guess ourselves, did we do enough? Did we miss something early on? On and On… but in the end, we did the best we could and in the end we love too much.
Terry is right, the DNA test for Fanconi is the best thing that happened for our breed, it is perfect, NO... is any test perfect, NO! But is it certainly better then what we had before....

Debra - I didn't know that the Wimauma dogs are showing a high rate of Fanconi?

[EskiLovr]

Michelle,

I don't know if a dog can live on pasta, but there IS a higher protein pasta available. http://us.barilla.com/aggregator/prodotto_barilla/1301 I buy this and no one in my family knows it is any different! And we've got some picky eaters. It might be helpful to try it. It has 5 g of protein per ounce, so it isn't as good a source as actual meat, but it is something. If you could mix in egg or milk or yogurt, or even beans, those are other options.

My heart just breaks for you both, it is so hard to know what is going on in there. But if she still likes pasta, then pasta she should have, imo!