A friend of mine tried to join it but found it inactive. Try the Yahoo Fanconi group list, it is very active!
My Haley has Fanconi…........
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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.
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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.
Good idea….I'll try the once a day feeding. I should make it at a different time than when I'm giving her 10 to 12 pills that are coated in yams or other food.
I tried to get accepted into the Yahoo Fanconi Group and also the group I saw on this forum.....but haven't heard anything back yet. I'll try again. Thanx!
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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!
Too funny! But, OK…..you may be sorry!!!
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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!
Oh I just saw some pics in your user profile. She's adorable, love the fairy costume and Prince is very handsome! Lovely pair you have there!
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Re: The yahoo fanconi group,
I bet the moderator is just busy with Thanksgiving stuff - I'm sure they'll get to your membership soon! There's tons of good advice there so I'll look forward to seeing your welcome post shortly!
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Good idea….I'll try the once a day feeding. I should make it at a different time than when I'm giving her 10 to 12 pills that are coated in yams or other food.
Yeah, try it and see how it goes - in general - feeding twice a day helps to reduce the bile throw up from empty stomach… and if she takes pills on an empty stomach it might not sit well with her, but maybe she'll be fine with it. keep trying things until you find something that works. something will work. I pill tayda in the morning before i go to work, and just give her a few baby carrots, or a little pasta or rice (she has to be on a low protein diet cause of her high BUN/CREATININE) so that her stomach isn't empty. she gobbles those things up. then when i get home I feed and pill separately. Seems to work so far....
So how are Haleys kidneys doing besides the Fanconi? Is her BUN/Creatinine under control? What food did your vet recommend?
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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.
It's Royal Canin Renal MP….....low/medium protein because we are expecting that her kidneys are involved or that she also has a kidney infection. I'll know the answer to that when we get the results of the urine culture - probably Friday.
The DRY FOOD has rice, corn, wheat, chicken meal and fat, egg, oil and lots of vitamins and stuff.
The WET Food has meat by-products, water, chicken by-products, rice and a bunch of minerals and vitamins.
Doesn't sound appetizing to me.
So, there's lots of grains.....I guess because it's low protein.
Hmmmmm......I wonder if she getting way too much of one or more of the vitamins or minerals since she's also taking Pet-Tabs Plus, Centrum and a potassium supplement per the Fanconi Protocol?
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So how are Haleys kidneys doing besides the Fanconi? Is her BUN/Creatinine under control? What food did your vet recommend?
Her BUN/Creatinine was high as of Friday. I think we'll do another blood gas and urine test in a couple weeks. Friday I'll find out what her urine culture says about kidney involvement, too.
