My Haley has Fanconi…........
First Basenji's

It's a sad time at my house. She depends on us (her family + vets) and we've all let her down. Haley's nearly nine years old and I think she's been misdiagnosed for at least two years. My husband took her to the vet 2 years ago (6 mos. before we got married) because she was peeing in his house a lot….and his ex-wife's house, too. She had been for quite a while. John's son found something on Fanconi on the internet so John suggested it to the vet. The vet just thought she had an infection and a weak bladder. So, she's been on PPA or Cystolomine for incontinence ever since.
After we got married I started taking her to the dog park and I met other people with Basenjis. Until then she'd never seen another Basenji......neither had my husband, his ex-wife, or I. That's when I started to "network" on this forum and with other owners and read books on Basenjis.......as I am fascinated by this breed and I adore her! I had never had a dog until I married John.......Haley's my first.
Since we got married (1 1/2 years ago) I've noticed that we have a hard time keeping weight on her......but, recently I can tell that her little body has changed a lot. She's not as muscular as she was last year. Then last week, even though she's on the Cystolomine, she accidentally peed in the house twice and I noticed that she was drinking a lot of water. Suddenly I started adding things up in my pea brain and grabbed one of the urine test strips that just came in the mail from BRAT (we adopted a rescue a few weeks ago). The strip changed immediately. I called the vet to make an appt. and went on the internet and printed out the Fanconi Protocol and bunch of other info on it. Two hours later I was educating the vet............me! A person who'd never had a dog before.....let alone a Basenji......educating a VET! Both vets said they knew nothing about it. I had to kinda convince him to let me take her to an emergency center and get a blood gas! I also got copies of all the labs the vets had ever done on her. The high glucose, BUN, creatinine....etc. goes back years! The vet is now doing his own research. I'm just gathering all the stuff I need for the protocol. The urine culture results will be back by the end of this week. It should tell us if she has a kidney infection or if the kidneys are involved in the Fanconi.........as in "failing", I guess. It's very possible, I think, that it will be the latter.
Anyway, I feel sick. I'm devistated. I'm sad and mad all at the same time. All of these amazing creatures depend on us. Haley depended on us and we all let her down......even me....I should have jumped on this earlier. I learned as a (human) mom that I cannot just completely entrust my children's health care to the doctors....that I have to do my own research and then follow through. I should have applied this to Haley's care, too.
There's a lot to be learned here. Hopefully, some other step-mom can learn from my experience. Honestly, right now.......I'm sick of learning.

I'm so sorry, but it does sound like you're doing all you can do now. You're a good dogmom.

Sadie,

I'm so sorry you are going through this, and I know your heart must just be aching. Don't beat yourself up about this. You are doing the best you can for her NOW, and that is what is important. A very wise person on this forum is known for saying "Once you know better, you do better." This definitely applies to you.

You cannot be expected to know everything right out of the gate. Ease up on yourself. Being stressed out and feeling bad is not going to help Haley. She will sense how YOU feel, and it will affect her.

I am sending you positive thoughts for the outcome of her tests, and her adapting to the protocol (if that is necessary.) Keep your chin up.

@EskiLovr:

Sadie,

I'm so sorry you are going through this, and I know your heart must just be aching. Don't beat yourself up about this. You are doing the best you can for her NOW, and that is what is important. A very wise person on this forum is known for saying "Once you know better, you do better." This definitely applies to you.

You cannot be expected to know everything right out of the gate. Ease up on yourself. Being stressed out and feeling bad is not going to help Haley. She will sense how YOU feel, and it will affect her.

I am sending you positive thoughts for the outcome of her tests, and her adapting to the protocol (if that is necessary.) Keep your chin up.

Well said.

Houston

Oh Sadie..
I am so sorry about Haley and her poor body feeling so bad..I know that it must feel as if you are helpless, but in this you must thank yourself for wanting to learn more about the breed..this could've gone on even longer, should you not have been searching for an answer..You have actually brought help to Haley, even if later then you wished..

I am sending good vibes and comforting hugs to all of you , hoping her test results comes back more positive then you are expecting…
Hopefully she will do wonders on the protocol and become her "normal" self again...soon.

Sadie,
i know its easy for others to say but what everyone is saying is correct. You now have the knowledge and are getting Haley the best treatment.
Before joining the forum i trusted everything the vets said to me and to a certain extent i still will. After all they are highly trained proffessionals. However with all the benefit of peoples experience on here i will question which i probably wouldn't have done before.
As you say it feels wrong to be telling the vet what to do.
Hope everything goes well with Haleys tests and hold on to the thought you are a good Basenji mum.

Please have your Vets call or email Dr. Gonto, his contact info is on the protocol… anything they wish to learn about Fanconi and the protocol he can educate them (and you too if you want to call/email him)... he is happy to talk to anyone with an affected Fanconi Basenji

Good luck with her... most important thing now is to make sure she is comfortable and maybe will do a turn around with the protocol.

If by chance she has papers and you know her breeder, it would be a good thing to try and contact them. Also it would be helpful to the rest of the breeders if you know the pedigree to sign her up (its free) on the CPP site. You can find out information at www.basenjihealth.org

I would also like to suggest that you have a DNA test done on your new rescue to find out the Fanconi status. Information on that is also at www.basenjihealth.org

Don't beat yourself up over this. You didn't know and now that you do you are doing your best for Haley. This is not an uncommon situation. Many vets know nothing about Fanconi and so instead of finding the root cause focus on the symptoms. Several years ago when BCONC could still do rescue we got in a girl Bijoux who was being given up for incontinence and chronic bladder infections. She had these symptoms for 2 years before they contacted rescue and they never did strip test her. We were very lucky that a home with another Fanconi dog said that they would take her and if she was Fanconi Affected then that was okay with them. I think she lived another 5 years in her new home.

First Basenji's

Oh, Ivoss…....thank you for the story of Bijoux. That's the only positive prognosis story I've read. I needed that! And the kind words of support from all of you: Agilebasenji, EskiLovr, Dan, Basenjimama, Shelley, and Pat. I told myself that I was posting Haley's illness on this forum in case someone had good advise for me.......but, could it be that I really NEEDED to hear (read!) your love and support? 😉 Seriously, it's VERY appreciated. Thank you for taking your time to comfort me!

First Basenji's

@tanza:

Please have your Vets call or email Dr. Gonto, his contact info is on the protocol… anything they wish to learn about Fanconi and the protocol he can educate them (and you too if you want to call/email him)... he is happy to talk to anyone with an affected Fanconi Basenji

Good luck with her... most important thing now is to make sure she is comfortable and maybe will do a turn around with the protocol.

If by chance she has papers and you know her breeder, it would be a good thing to try and contact them. Also it would be helpful to the rest of the breeders if you know the pedigree to sign her up (its free) on the CPP site. You can find out information at www.basenjihealth.org

I would also like to suggest that you have a DNA test done on your new rescue to find out the Fanconi status. Information on that is also at www.basenjihealth.org

Pat…...I printed out Dr. Gonto's information last night in case I had the guts to call him today. I've read other posts that talk about his advise.......But I wondered if he really does take the time to talk to anyone who needs him. Isn't he a busy doctor somewhere? Do we need more doctors in this world like him, or what????!!!!!! I will take the time to gather a whole bunch of questions before contacting him.....so I don't have to pester him more than once.
Also, I actually do know Haley's pedigree and the name and phone number (although it may be old info) of her breeder. She was never actually registered, but John still has all of the paperwork/information. Months ago when I was looking at the Zande website I found Haley's sister (litter mate) registered there. Even though Haley is nearly nine years old, I will contact whoever I can in case it's important information to them.
Thank you for your support and suggestions!

Sadie, your the best your caring with help from vet and love that she all ready has from you. Going to have your baby a long time yet. Hang in there my prayers go to you.

Rita Jean

@SyberSade:

Pat…...I printed out Dr. Gonto's information last night in case I had the guts to call him today. I've read other posts that talk about his advise.......But I wondered if he really does take the time to talk to anyone who needs him. Isn't he a busy doctor somewhere? Do we need more doctors in this world like him, or what????!!!!!! I will take the time to gather a whole bunch of questions before contacting him.....so I don't have to pester him more than once.
Also, I actually do know Haley's pedigree and the name and phone number (although it may be old info) of her breeder. She was never actually registered, but John still has all of the paperwork/information. Months ago when I was looking at the Zande website I found Haley's sister (litter mate) registered there. Even though Haley is nearly nine years old, I will contact whoever I can in case it's important information to them.
Thank you for your support and suggestions!

Yes, Yes, he really does talk to anyone. He is much easier to reach via email.. at least I think… but he is more then happy to lend his support in the care of our Basenjis. And I think it would be really good for you to suggest to your Vets that they call him. It is hard to believe that there are Vets out there that do not know about Fanconi.... but it is the truth.... And Dr Gonto would like nothing better then to take the time to "educate" those who do not know.

Would you care to share the pedigree information? Many breeders on this forum keep track of Fanconi lines.

Also, you really should consider doing the DNA on your new rescue if he/she has not been done yet...

First Basenji's

@tanza:

Would you care to share the pedigree information? Many breeders on this forum keep track of Fanconi lines.

Also, you really should consider doing the DNA on your new rescue if he/she has not been done yet…

You are right, Pat….I will look into getting Prince tested, too.

If you go to the zandebasenjis pedigree website and look up a dog named "Lady Ginger Snap" (which I think is SO cute) you will see all of Haley's pedigree. This would be Haley's sister and litter mate. They were born on December 6, 2000.

Sadie, sorry to hear the news about Haley. You're doing all you can at this point. Haley, I'm sure thanks you for that.

Best wishes for a good response to protocol. Keep us posted.

"The high glucose, BUN, creatinine….etc. goes back years"

Question: Was the blood glucose high as well? Your statement above implies blood glucose was high too.


FERRARI WIKI SPECIFICATIONS

@SyberSade:

You are right, Pat….I will look into getting Prince tested, too.

If you go to the zandebasenjis pedigree website and look up a dog named "Lady Ginger Snap" (which I think is SO cute) you will see all of Haley's pedigree. This would be Haley's sister and litter mate. They were born on December 6, 2000.

Thanks, there is lots of Fanconi in that pedigree or dogs that most likely these days would have tested as Carrier. I hope whoever the breeder turns out to be is not breeding at least not without testing. But that is most likely wishful thinking.

Good luck with your girl, fingers crossed that you can get her on the protocol and she will perk back up and be with you for a good while more…. lets us know how it goes. There are ones on the Forum with affected Basenjis and also there is a closed yahoo list for just people with Fanconi affected dogs you might think about joining.
http://pets.groups.yahoo.com/group/fanconidogs/

As Linda asked, was the BLOOD glucose high as well? If so, she could be diabetic instead of Fanconi, or in addition to. As I'm sure you know now, high urine glucose with normal blood glucose is Fanconi, if both are high, think diabetes. We had a diabetic dog, drank a lot, peed a lot (with a dog door not so noticeable) and lost weight for months before we diagnosed it.

A dear friend recently discovered her girl has Fanconi. Like you, she noticed slow onset of symptoms and crankiness, but thought Fanconi was rare and had onset at about 5 years so had not been testing! (her girl is three). She has had a lot of contact with Dr. Gonto via e-mail. He has tons of knowledge to share but be aware, he scolded her rather fiercely about being so ignorant of her breed and of Fanconi. She understood that he is very passionate about this disease, so please understand that if he seems "less than sympathetic". She is working with 2 vets as well as Dr. Gonto to manage her girl, who has some 'normal' renal failure as well. My friend has beat herself up already (as you are doing) for not picking up on it sooner, she feels she may have had it for at least a year, looking back at events that were attributed to other things at the time.

So you see, you are not alone, if you have never been exposed to Fanconi, or only know about it as a "rare disease", you miss all these symptoms and don't put 2 and 2 together. Now you know, and I imagine you will educate every other basenji owner you ever meet. And you will do the best you can and hopefully you have more good years with your sweet girl. Try to just look forward and give yourself a break, you are doing the best you can and that is all anyone can ask of themselves!

Anne in Tampa

The post by Anne (MacPack) is right on.. it only puts a "period" on researching a breed before you buy… and know the health concerns before hand...know what questions to ask when considering a puppy or even a rescue.... Of course in the case of Sadie, this girl was born and sold well before the new DNA testing for Fanconi.., not that the breeder (IMO) was responsible to begin with, because they were not, but you need to read about health concerns.. and what better place then the Parent Club Website.. they all have one...

Very sorry to hear about what is happening with Hayley! My Tayda was diagnosed with Fanconi about a year ago and we have since gotten her pretty much stabilized on the protocol. It has become our routine. I feel sad about it and it does take some organization and more frequent visits to the vet, but I just tell myself that Tayda doesnt know that she is sick so she is just as happy as she was before.

I correspond with Dr. Gonto regularly about Tayda's test results and he is FANTASTIC about responding and is very thorough with his advice. A great resource.

Of course the first thing would be to find out the results of her labwork to determine if it is Fanconi or Diabetes.

One thing I would stress is that Dr. Gonto NEVER recommends giving any supplements prior to the first round of bloodwork. I was very tempted to do this because I had to wait a few days before the vet could see her. However he strongly insisted not to do this. You need to know where she is at rest to determine what her supplementation will be. If you give her some supplements to get a head start on correcting her losses, you'll never know what her true "at rest" state is.

Good luck! and join us on the yahoo fanconi group. there's a ton of experience there with Fanconi…. lots of tips, tricks, sharing and support!

Great Advise Michelle… I am so glad that you jumped in on this thread..... boy and I so agree with nothing given before bloodwork.. in fact, IMO anything that was being given should be stopped at least 24 to 48 hours prior.

And the comments made about Dr. Gonto being a bit agressive to people that have a Fanconi dog and didn't have a clue... I can understand where he is coming from... but don't take offense... please.. he is the best of resources... and again I urge you to contact your Vets to talk to him

Hey Michelle, so how is the potential move coming?.... I know that Lisa can help you line up some goods Vets out here... and of course there is UC Davis

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