It is my understanding that Dr Gonto can only respond about the protocol to a Vet and can not give advise direct to an owner, so you may want to have your Vet sent that information to him. Or send the lab information and copy your Vet so that he can communicate directly with your Vet if he suggests changes.
My Haley has Fanconi…........
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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
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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...
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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.
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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.
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"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.
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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
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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...
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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!
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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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Thanks Pat,
I dug out my correspondence w/ Dr. Gonto where I asked about "pre" supplementation… here it is;
Should I start giving her some vitamins/supplements even before I
get the other test results? If so, what/how many/how often? NO..NO..NO…NO..NO and NO. Clear enough? No reason to muck up our numbers so we have no clue of our starting point.I also want to post this regarding the target PCO2 levels. In one of Tayda's sets of bloodwork she had a PC02 level of 33 and HC02 level of 20. Dr. Gonto was pleased, which confused me because the protocol states the target PCO2 level is between 45-47. So I wrote:
Are we shooting for the PC02 level of 45-47 as it states in the Protocol? Or is a PC02 level of 33 all right if the HC03 level is at least 20?
And he responded:
When I have time to rewrite the Protocol there needs to be a change in the PCO2 levels we look for. The original numbers came from my own dog and a number who were actually owned by vets or doctors and thus could be easily and often stuck for blood with very little stress. That means that those numbers…45-47 are correct...but for a dog AT REST. Normal dogs..at the vet, excited and getting poked, BLOW DOWN their CO2 by at least five. We now simply look at the lab result and ADD FIVE to get the AT REST number to use. Understand? Thus, a 40 CO2 would be PERFECT...but we rarely get there. Even if the dog is SUPER hyper, that may be WAY lower. If I can see a dog with a 37 or better CO2 I am happy. The MUCH more important number is the HCO3. That is the REAL deal as to what is going on with the bicarbonate..and YES, the goal is 20....or close to it.
I hope that all makes sense.
Steve
This may not make much sense right now, but just keep in mind that there is a little adjusting that is done to the target PC02 levels in the protocol - I pretty much have to reeducate myself every 3 -6 months when I take her in for repeat bloodwork to remember what exactly we are looking for.
Basically, my advice is - take all the numbers you get and send them to Dr. Gonto. He will respond and tell you what to do. And then you'll learn along the way what to look for…
It can be overwhelming - hang in there, it will get better, you'll settle into a routine. I was a total mess a year ago, and now all seems to be in order - but it still sucks every time I take her to the vet - i get SO anxious waiting for the test results.
As for CA - Just started the job hunt... working with some recruiters - but seems pretty quite over there for my industry right now. Maybe it will pick up after the New Year... if I don't find something by about March, I'll put my house up for sale and move after it sells and continue job hunting.
I'm home in Michigan now and will be doing intense wedding planning for the next 2 weeks! Then I'll go back to job hunting....
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As Linda asked, was the BLOOD glucose high as well?
Anne in Tampa
Question: Was the blood glucose high as well? Your statement above implies blood glucose was high too.
Sorry, I wasn't specific enough. We have had blood work and the blood glucose was and is fine….just the urine glucose consistantly high.
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We've just completed our first day of the protocol. A.M. pills I gave her wrapped with yams. P.M. pills with a little Valveeta. (I haven't bought Valveeta in DECADES! I had to ask where it was in the grocery store!!! I had a little taste…..still tastes good!) All the pills went down without a problem. YEH! One day down! It was a good start!
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Excellent! My friend was overwhelmed at first, like Michelle, but now has her routine and system in place and it isn't hard, just takes planning and organization, according to her. And she values Dr. Gonto's advice and understands completely if he sounds a bit feisty, combating Fanconi is his passion! He is a wonderful resource and finds the time to answer all her questions and guide her treatment, if you have not contacted him, don't hesitate!
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Glad to hear that your have her on the protocol…. hugs and best wishes... you can find lots of support out there and we are all sending good vibes her way that she does well on the protocol....
I know that sometimes at some point they might figure out that you are hiding pills in the food... if you have one that is food motivated that that is 3/4 of the battle.. and since you have two.. you can play one against the other to hide pills... good things to try hiding them in is cream cheese, butter, raw meat like gound beef, ground chicken, ground turkey...
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Day 2 wasn't quite as easy as day 1, but not too bad as far as the pills go. She turned her nose up at the prescription dog food, though….both this morning and tonight. She woofed (heehee) it down yesterday. She tends to be a picky little eater normally.
Here are two odd things I've noticed today:
1. For a couple of months now her coat has not looked good. Seems like her fur is really thinning out. It's been dull and just doesn't feel normal when I pet her. BUT, today it feels much softer......noticibly...and appears a little shiny! I asked the vet if one or two days of vitamins, etc. could make a difference and he said probably not. So....weird.....don't know, but it feels great to pet her now.
2. Suddenly she's very pink on her little belly and any place that doesn't have much fur on it.....like arm-pits and the white part of her muzzle. Kind of like she's flushed or something. She doesn't seem sick at all, but her belly is a little warm. It doesn't seem to itch, but now and then when I've petted her belly for a little while, she'll yelp a little like I hit something that hurts. She did have urine removed from her bladder with a needle on monday morning....so there may be an internal bruise or something. Regarding the pink skin, the vet said she could be reacting to one of the supplements or something in the new Rx dog food. He said I should feed her our normal way (not the Rx food) for a few days and see if the pink goes away. Anybody out there ever seen this pink skin after starting vitamins and supplements or new food?
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i have not experienced anything like what you described with the pink on the belly. hopefully someone else can chime in. You could also post on the yahoo fanconi group and see if anyone there has seen it.
Tayda is a really picky eater - I switched to feeding her once a day, she seemed to be more consistant when I did that. Like it gave her more time to get hungry or something. I prefer to feed twice a day but I got sick of trying to get her to eat for like 1/2 hour in the morning - and usually she only ate about 1/4 of what i'd give her after all that effort.
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Thank you, Thank you, Thank you everyone. Your comments, advice, and support are so valuable to me. Believe me, I am reading and noting everything you say. I look forward to signing on each day in case someone has posted something. I'M PITIFUL
but VERY appreciative!!!!! -
Anytime! The advice isn't free though! You must pay us by posting pictures of little Haley!
Just kidding, obviously, but would love to see pics!
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What prescription food are you feeding? What are the ingredients? My first thought would be a corn allergy or a grain allergy.
