Have just spent the better part of an hour on the phone with Dr. Gonto and told him I would try to remember all his advice and comments and post. Since I have fairly severe auditory short term memory issues, I fear I will leave out a lot, but am copying this to him so he can correct or add.
(EDIT NOTE: I should have written him first. Below is corrections and direct quotes.)
First, before I get onto Fanconi in general, in regard to clear or possible carriers developing Fanconi.
1. He said that false negatives AND positives are to be expected at this point in the game, it is not perfect. PLEASE ask Johnson for actual stats.
I DO suggest strongly that REGARDLESS of the GENE MARKER TEST FINDINGS that dogs still be considered "somewhat at risk" at this point, and urine strip testing STILL be done. PLUS, if a dog tests as CARRIER or POSITIVE, we immediately do a VENOUS BLOOD GAS, since we have detected the onset of Fanconi in these dogs, well before there was ANY glucose lost in urine (on multiple tests). Till we have a true 99.997% accurate test, we cannot rely fully on the Marker Test. My dog tested "CLEAR", and to my understanding, one parent tested "CLEAR" as well. She, however, HAS Fanconi and we immediately air rush shipped blood from her to Dr Johnson to help further refine the test. I hope EVERYONE with a false negative or positive test does the same. (A false positive would, to my mind, be a dog that tested as "affected" and yet reached ten or eleven without onset of anything).
2. He asked that PLEASE, anyone with either a dog that previously tested possible clear and now possible carrier (actually ANY change in testing), to please please please directly contact Dr. Johnson. This is the case I promised to make for him here in hopes a breeder or 2 will follow through. He said, while Dr. Johnson has a woman who screens his calls, he will get back with you and help with enormous amounts of information if you ask. He suggested you ask if the tests have change, how much, what the change in false positive/negatives is from say, several years ago (esp when using blood to now with swabs– even though both tests evaluated the same markers), to today's stats. He said Johnson will KNOW.
YES, let's get information from the SOURCE. Better yet, instead of individuals bombarding him with the same questions, why not have ONE individual get the data….percent accuracy, current test accuracy verses prior testing, expected percent false negative and positive numbers, how to proceed if you have a dog who tested one way and turned out another..as to providing additional samples, etc. THEN that information can be shared with all.
His (Gonto) opinion is that there is no reason for a dog to test differently unless the test or reliability has changes. This was a part I didn't know, though many of you may. He said normally, a dog tests possible clear or possible carrier will STILL test possible clear or possible carrier even if develops Fanconi. Because the test is for linkage, the problem isn't that the test is "wrong" but that it isn't a guarantee that the dog doesn't have Fanconi (ie the test was accurate for the markers but the markers don't fully predict outcome). He said if your dog tests possible carrier, but still develops it, CALL DR. JOHNSON to discuss it. He suggested you ask Dr. Johnson if he would like his contact put on the BCOA/BRAT etc. with the advice to contact his office in these situations of both status changes or different test results, as he suspects Dr. Johnson will want that contact. (Dr Gonto said he has never seen BCOA or any of the magazines suggest it and he thinks going to the source of information is always the best route.)
My point is that an individuals dogs genetics will NEVER change. If it is positive, it is positive. If it is carrier, it is carrier. UNLESS the test changes, the RESULTS should be the same every time tested. However, the test SHOULD change and improve over time, as we all hope it will, and thus become MORE accurate. Again, DR. JOHNSON should be the only one who knows details about this…so ASK HIM. I would.
I called to discuss the need to test more than once each month and why it wasn't recommended. Basically here are the points.
1. Yes, you can get variations from one day to next. (Which of course some knew from personal experience!) We discussed why but I'll leave out the med stuff and just say factors, even with same diet, same time of day, can show difference from one day to the next VERY EARLY ON in development (not later).
Simply, early in the disease, not enough nephrons are effected to be consistent in results and so as blood levels of glucose change from minute to minute, the results in the urine can too. Later in the disease, glucose loss becomes constant.
2. In reality, it is better to test 2 or 3 days. However,
a. Compliance at even once a month not good so suggesting 2 to 3 days won't help. (((my own thoughts are, so? Tell them anyway and let it be on them… I am sorry I didn't know before.)
b. It doesn't matter much. Very early on, if you miss it this month, it is highly unlikely you will not hit it the next month and in health protection, it doesn't make much difference if you wait a month to start treatment.
3. Here is the kicker that, if the info is out there, I didn't absorb it before. So in case others were like me and left "what if" to when it happens, here is his info. He said dogs may spill bicarbs long before sugar. Therefore, if your dog tests as possible carrier or affected, do NOT rely on urine testing to find out if your dog is already symptomatic. I said, so do the blood gas immediately and his response was "HELL YEAH!" (LOL I told him I would quote that directly.)
Let's be accurate with that "direct quote"..it was "HELL YES". Not "yeah".
(LOL note, I wrote hell yeah, but I'll take his word for it, especially since this response had me laughing very loud.)
Hopefully it will supply just a baseline and not show a problem yet. But he said, because there may be months between spilling bicarbs and sugar, your dog is better protected by immediate screening. I am sorry, if he said how often after that to retest, I missed it so hopefully when I send him this he'll give me the recommendation. Of course, then you strip test routinely.
I can answer that, since I have before. If a dog tests "afflicted" or "carrier" and has a normal blood gas, MY recommendation is then WEEKLY urine strip testing and every six month Venous Blood Gas.
4. He agreed that yes, because there can be issues, changes in tests, etc… if you tested your dogs years ago, but now are going to breed them, you might want to retest or ask Dr Johnson about the need to retest if the ones you had before HAVE changed. He wasn't sure about the changes and felt that this is an area <cough cough="">a breeder might want to discuss with Johnson so they can post official response from the horse's mouth (ie Johnson) for BCOA etc. (Can you tell he truly feels Johnson would be a straight great resource to help get the up to date info from for public posting?)
He is the ONLY source, not just a "great source". In case no one has noticed, he developed and is administering the test, and refining it now. Who else on earth is more qualified to offer the numbers and data we need? Who else can even begin to duplicate what he has in testing??? I know what we had prior to his lab offering this test, which was "WING AND PRAYER"…and it did NOT work very well. Now, at least, we have SOME indicator to help guide us. Anyone have anything better? If so, let's use it, by all means.
Okay I am sure there are things I left out, but that's all I can recall. It was just super nice to have him answer and be so incredibly gracious and informative.
I try, and I don't mind being quoted, but I hate to have MY little self quoted on areas where I AM NOT THE EXPERT, such as the facts, figures and numbers…where MY advice is to "find out from the ONE who knows".
That is MY take.