Long talk with Dr. Gonto

[DebraDownSouth]

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.

Testing

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.

Be well,

Steve

</cough>

[Elscodobermann]

A terrific post Debra, thank you for posting this - lots of food for thought for all of us who have basenjis tested as affected/carrier especially.

[Terry]

Thanks Debra! You took initiative and came back with some very valuable and timely information.

I would hope all of this has been something that the Basenji Health Endowment is on top of - after all, they provide a major funding source for Dr. Johnson's research. All of those statistics should be available to all of us; if we are, to a large degree, depending on the test to provide guidance in breeding healthy Basenjis, we all need to know specifics, not simply,"Well, you know, it's only a marker test, it's not 100% accurate," which is about the extent of the information we generally get.

Thanks again Debra!!

Terry

[tanza]

@Terry:

Thanks Debra! You took initiative and came back with some very valuable and timely information.

I would hope all of this has been something that the Basenji Health Endowment is on top of - after all, they provide a major funding source for Dr. Johnson's research. All of those statistics should be available to all of us; if we are, to a large degree, depending on the test to provide guidance in breeding healthy Basenjis, we all need to know specifics, not simply,"Well, you know, it's only a marker test, it's not 100% accurate," which is about the extent of the information we generally get.

Thanks again Debra!!

Terry

I would suggest that you write the BCOA board. It is the responsibility of all members to be engaged and since we have not seen any of this from the BCOA or BHE would make one wonder.

[DebraDownSouth]

Pat, I don't know if Terry is a member of BCOA, but I am not now (lapsed when I got sick). I suspect the info sent by a member would be better received but if you or another breeder doesn't want to, is there someone in particular I should contact? I just think someone like you who is respected and involved would have more impact.

[tanza]

@DebraDownSouth:

Pat, I don't know if Terry is a member of BCOA, but I am not now (lapsed when I got sick). I suspect the info sent by a member would be better received but if you or another breeder doesn't want to, is there someone in particular I should contact? I just think someone like you who is respected and involved would have more impact.

Honestly.. this same information from Dr. Gonto was sent to the BCOA Health Committee, what they have decided to do with it… I can't say

And obviously with the current Board for BCOA... I have no impact and the fact that I questioned was met by the co-chair of that committee with obvious negative results. I was member of the Heath Committee unitl recently when I questioned too much and was put on moderation for that group. I resigned the committee as many other long time BCOA members have done with committees they were one. Including the Bulletin for the last few years... among others.

[Therese Leimback]

Debra,
Thanks for your post, I read through and felt strongly it was important that BCOA membership know what you posted. Because this is a public forum I posted a link on a BCOA membership list. This list consists of members of BCOA as well as BOD and committee members. My hope was it would stir the conversation between breeders and encourage talk with all basenji owners about the items you and Dr Gonto brought up.
I am personally not clear if the Basenji Health Endowment or the BCOA health comm are the people to talk to, I considered the linkage test is done by OFFA and if there was a question in regards to test maybe the questions should be directed at them, as I would ask them about a process involved with hip evaluations. I thought the place to start is the MDG list which is members of the BCOA only and where I posted a link to your post. I would also like to forward a link to the OFFA and ask for a few answers from them as well.
I for one am thrilled to see this topic opened for conversation and really appreciate your well thought out post to open such discussions.
Therese

[feebeejeebee]

As a new owner of a Basenji and one who is hooked on this delightful breed, I have to say this was really good information for me. I have read a few conflicting things in my effort to educate myself on Basenji health issues. I am so glad I was directed to this forum.

[DebraDownSouth]

Therese, Dr Gonto's point was that the person who developed and still works on the test should be consulted. OFA merely collects data stats from testing.

However, that said, you are free to copy and post the entire thing, not just a link, wherever you like, but please don't change anything since what is posted is what Dr Gonto read and his responses. The goal is education. I would never have known to test more than once if it weren't for Pat. And while it probably isn't a biggie if it isn't caught for a month, why not do the best we can? Or at least have the info and make our own call.

[Therese Leimback]

Debra,
I suppose by contacting OFFA I was attempting to look for an avenue to ask questions of Dr Johnson without having every basenji owner contacting him as Dr Gonto had mentioned using BCOA etc.
I agree that information from the source ie; Dr Johnson is the best source. My purpose for posting the link was honestly to ensure the post was read by everyone exactly how you wrote it, I really appreciate you giving me the go ahead though.
I have not seen any response from any member of any BCOA committees on the list I posted all day. I thought maybe if I contacted the OFFA I might get some response in regards to where to find some answers or even the best route to get questions answered by Dr Johnson.
I just couldn't imagine Dr Johnson having to answer the same questions for several people was the best route to take. Just hoping people involved with the testing would have advice on the best way to get answers from Dr Johnson.
Thanks again for opening this subject up.
Therese

[sinbaje]

@tanza:

Honestly.. this same information from Dr. Gonto was sent to the BCOA Health Committee, what they have decided to do with it… I can't say

Pat - you tendered you resignation to the Health and Research Committee (HRC) one week ago so YES you do, or should, know what the HRC has been working diligently on for several months, up to and including Dr. Gonto's information. How misleading to imply that the HRC is not doing anything. What a slap in the face, IMO to your fellow committee members who have been working so hard to get accurate information out to the public.

@tanza:

And obviously with the current Board for BCOA… I have no impact and the fact that I questioned was met by the co-chair of that committee with obvious negative results. I was member of the Heath Committee unitl recently when I questioned too much and was put on moderation for that group. I resigned the committee as many other long time BCOA members have done with committees they were one. Including the Bulletin for the last few years... among others.

It is not my opinion you were put on moderation because you asked too many questions. Lots of folks - on the committee and not on the committee but a part of the chat group - ask many, many questions. It is my opinion you were put on moderation because of your continued hostility, if not downright attack, of the chairs.

In truth - had I been running the show - which I am not - you would have been at the very least moderated, at the most fired from the committee days earlier for your threats to publicly undermine the HRC if they posted something you disagreed with - despite the majority of the committee having no issues with it.

Seeing as how Alex the forum owner is a friend of yours - I have no doubts you will have this edited and/or removed and/or have me kicked off if possible. It seems to be the MO of this forum - allowing certain 'chosen ones' to continue to disparage others but when called to task on their own personal responsibility to a problem - it is removed.

Therese and Debra - having immediate access to information has created a very impatient populous. Sadly doing business properly does not allow for instant gratification. Neither the HRC, the BCOA nor the BHE have the means to get immediate information out without risk of being seriously setback by folks intent on undermining the group as a whole as has been evidenced in the past 6-12 months.

Rest assured - the BCOA by way of its HRC is working hard on getting accurate and current information ready for the public. It is a combined effort of a rather large committee so it takes time to listen to and incorporate numerous opines.

Don't take my word for it; for those BCOA members - feel free to ask to join the group and see for yourself how hard folks have been working:

http://pets.groups.yahoo.com/group/bcoahealth/

Debra - if you want to re-join the BCOA - download an application, get one signature and send along to me for your second one and we can remedy your situation.

[tanza]

I take great exception to your post Linda…. and Yes, I do know what the committee has been working on and it has NOT been for months, it has been weeks... and IMO it is not good enough for what there has been put out to the general public, think when members see the results they too will ask questons. I was moderated because I questioned the co-chair more then once for putting words into my "mouth" that I did not say and not addressing the person directly that first asked the question. And believe me, I could not care less if is was you or anyone else as the Co-committee chair, my response would be the same. Others agreed with my questions, but even if they did not, doesn't matter, it was not deserving of the "non" response from the a committee co-chair.

And please Privately explain "threats".... LOL... and I say privately because I doubt that anyone here really cares

And by the way, Alex is not a friend of mine, I know his wife because she has a dog from Kathy Britton and Marilyn Leighton, not sure where you get your information, but feel free to ask him ... I have no control over who is here or what they post including myself.

Speaking of "friends" that would be for your friend the Co-Chair of the Health committee

[Therese Leimback]

Linda,
I'm confused by your post, you mentioned that Debra and I had access to information and are now looking for instant answers which is difficult, yet in the start of your post you stated the HC has been working on this for several months. What exactly is the HC working on that has taken months and still has not compiled information for the breeding and pet public?
Also at the risk of offending you, you might consider that correcting what you thought Pat F put out as "bad information" is one thing but attacking her publicly on a friendly open forum like this one made you look a bit like a "pot calling the kettle black". As someone who is not involved in this situation I just thought you might want to consider how it made you look to someone outside the situation.
Thanks for the link to the HC list, I'll join right away.
Therese Leimback
FoPaw's Basenjis
www.fopawsbasenjipuppies.com

[Batcavebasenjis]

@Therese:

I thought maybe if I contacted the OFFA I might get some response in regards to where to find some answers or even the best route to get questions answered by Dr Johnson.
Therese

Good luck with that! I emailed the OFA a few weeks ago about Ace and Ra's and I got nothing!
Jess

[DebraDownSouth]

Jess, I quit emailing OFA long ago. Call them! Have gotten wonderful results on the phone.

[sinbaje]

@tanza:

Yes, I do know what the committee has been working on… and IMO it is not good enough and other on the committee.

I disagree with your premise that it is not good enough and I imagine there are 10-13 other committee members who would agree with me. I think for what is needed in the here and now it is and it addresses the concerns that have been brewing in recent months.

If it is not as perfect as some folks think it should be (and really - what ever is??) it will be a reflection on the committee as a whole since every single member has had input into the making of it and has had ample opportunity to weigh in. And yes Pat - that would include you (sans 7 days ago when you took your ball and went home.)

@tanza:

I think when members see the results they too will ask questons.

I would hope like heck members WOULD be asking questions. Without questions - the HRC has no direction on where to go and /or what needs to be addressed for the future. I do not have the impression the HRC is considering what they are currently working on as a static piece but one that will evolve as more becomes known.

@tanza:

And please Privately explain "threats"…. LOL... and I say privately because I doubt that anyone here really cares.

Seems folks SHOULD care since it could affect many of us as current and/or future BCOA basenji lovers; as you say we should all be responsible to be engaged within the BCOA - the good the bad and the ugly <insert western="" music="" here="">.

While I can not directly quote what you wrote on the 25th as that would be a breach of the list - I can certainly paraphrase; you and one other committee member (out of I think 14 members) did not like how a certain passage was worded. You wrote to the group that if this passage went as written you would have no problem shouting to the BCOA roof tops via voice or written word your discontent with the very committee you are supposed to be working in tandem with.

Sorry - that is not team playing, that is undermining and manipulative. For me it almost borders on bullying. And folks wonder why it can take many weeks, if not months to put something together.

That said - some folks on the HRC did not agree with many things during the brainstorming sessions of the HRC but at no time did they threaten to stir trouble for the HRC outside of the group and in fact most showed tremendous respect for each other and consideration for the differing opinions. On more than one occasion folks asked the group to get back to that "zone" as it was refreshing to be a spectator on the sidelines, which I was/am.

I for one am proud of what the HRC have accomplished and while it may not be perfect to everyone - it is the cumulation of many, many hours of dedicated volunteers whose sole intention is to make the basenji world a better place.

BCOA folks are more than welcome to join the health chat group and read for themselves. Do note - that only committee members are allowed to vote on anything related to the HRC.

Am I 'friends' with the co-chairs? I would like to think so (I certainly respect their knowledge and contributions to the BCOA), as much as I am 'friends' with anyone in the breed. Just as I would have thought you and I were also 'friends' Pat until your private, and seemingly misdirected post to me venting after you got put on moderation, told me otherwise. I am sorry you feel that way about me.

@Therese:

Linda, I'm confused by your post, you mentioned that Debra and I had access to information and are now looking for instant answers which is difficult, yet in the start of your post you stated the HC has been working on this for several months.

Sorry if I have not been more clear. Firstly - I did not mean to imply you and Debra had access to anything since I do not know what you do or do not have access to.

Secondly - me, you, Debra, and everyone else in the world seem impatient for information in a world where information is at our virtual fingertips. However in the real world there are times when information can not be so readily available and as adults we need to exercise a certain amount of patience without implications that work is not being done or secrets are being kept. I was just reminding folks of that basic fact.

When you have a committee of 14 or so members in various parts of the world it can and does take awhile for things to come together as they should. And there is nothing negative to infer in that depsite what some would have you believe.

So sorry you read my reply to Pat as an attack. I was only replying to her disparagement of the BCOA, the HRC (esp. the chairs) and the BHE - who do not have a voice on these forums - when she and I both know the HRC has been hard at work for many, many weeks.

It is, IMO, unfair for Pat to continue to imply to this forum that the HRC, the BCOA and/or the BHE have been resting on their laurels doing naught.

In truth it would go against my nature to allow such implications to go un-addressed when I have information to the contrary. If that makes me a pot or kettle - then whstttttt</insert>

[tanza]

People might be able to join and make a comment, duly noted that they are ignored with some exceptions when others are "assigned" to tasks and are not even members of the committee, just observers.

And Linda, your attacks are directed at me personally as noted by Therese, my vent to you was because of an attack to me personally.

People will need to judge for themselves if the response from the Health Committee answers the questions. I think not.

And I am totally for the Linkage test if anyone is interested and think that it is the greatest tool we have in addition to breeders knowing the bloodlines they are breeding. It is certainly better then just only knowing the pedigrees, however there have been questions raised that need answers.

[Chealsie508]

I was very much not going to post in regards to this thread seeing as it is highly controversial but I am going to say this: and I must say that some may like it and some may hate that I am saying this but someone has to say it,

I am not a member of the BCOA and to be honest I do not really have the need to know specifics of why Pat is no longer a member and likewise I do not care to know if Sinbaje is friends and how close with the chair (which I am assuming is lingo for president?).
I learned a lot about Basenji's when doing research and found that the biggest commitment wasn't in owning one but in having to deal with the BS that people in this breed tend to get themselves in. Most of the people in this breed are people like myself- that love the breed and have moderate knowledge, however the select few ruin it for people like myself by getting crazy, gossiping about breeders, getting political about the BCOA etc…it has to stop! I enjoyed the knowledge this thread started with and it ended up like this: lord knows what I am going to do when I am getting my second because I do NOT want to deal with this craziness again, and many do not want to deal with me because I don't want to get into it. When it gets ugly it is never because of a Basenji, it is always about one person bashing another....jeez

Lastly, I will say this: everyone who gets nasty or crazy says it is because they love the breed, well let me tell you this:
I have chosen not to get involved in any BCOA activities or into lure coursing or agility or even go to shows for the sole reason that I DO NOT want to witness or be part of the garbage that comes out of some adults mouths. Now tell me how that helps the breed that MANY MANY people feel so discouraged that they do not get involved? Now thats a shame!

What this thread turned into is a prime example of the banter that scares people away

To Debra: thank you for this valuable information, Oakley and I appreciate it

[tanza]

While I respect your views, I disagree and challenge that all Basenji owners should be engaged with BCOA. This is the club of the people and only the people can make it their own, run with the leaders they want, trust and respect.

[Chealsie508]

I agree that everyone should be but it is not an easy world to navigate when you are new and have to deal with all the politics. There is no respect and trust with what I have seen.. I can not tell you how much gossip I hear, has been spread about me when I post here etc…it is disheartening because I wanted to be involved in the Basenji community but with what I see ( this as an example) it isn't a place I want to be in my spare time and I wouldn't subject Oakley to it either. To me, with what is happening, I am being a better Basenji owner than if I were involved.