My Carrier now has Fanconi

[JoT]

@Batcavebasenjis:

Back in 2007 when the Fanconi DNA test first became available I did what every other Basenji owner on the planet did….I rushed to get in line to have my dogs tested.

In Sept of 2007 my little Basenji girl, Ace tested carrier for Fanconi.
Jan 31st 2011 Ace was diagnosed with Fanconi.
In Dec and Jan, Ace had been drinking more water and started having potty accidents in the house. So I made an appt and took her in for what I thought might be a UTI. When Dr. Carter said she had no sign of a UTI but was spilling sugar (++++) I didn't know what to think, I told him she tested carrier. He drew some blood and sent it off. He called me first think Monday morning and told me her blood looked fine, it had to be Fanconi. I rushed her in to get her blood gases done, and then ran around town finding as many of the pills that she would need as I could. She started the protocol that night. Ace now takes 12 pills a day 6 in the am and 6 in the pm. There are two more she takes once a week. We also had to start a new food. She just had her 4 week recheck and her levels look good. Dr. Carter said we must have found it early. We really lucked out...if you can say it that.

Now I know the test is just a linked marker test and we were all told it was not 100%.
Our test results are all listed as probably clear, probably carrier or probably affected. Also there is always the chance for human error.
But I am sure like many others as the years went by I slowly stopped test striping.
Please Please don't be like me...don't push your luck...strip test no matter what your test results came back as. Don't risk not finding it early.

Jessica Ryno

Dear Jessica,
My heart goes out to you and Ace. Please know that as you deal with this new situation, you are part of a big family (the breed fancy) who has just circled our wagons around you.
You are in my thoughts and prayers.

[sharronhurlbut]

Jessica, your on the closed fanconi list yes?

[Batcavebasenjis]

Jessica, your on the closed fanconi list yes?

---

Sharron Hurlbut
BRAT, basenji rescue
Evergreen basenji club
Seattle Purebred Dog Rescue

Yes I am.

[Batcavebasenjis]

@Kipawa:

Oh dear - how sad for you. I am terribly sorry on this turn of events. However, you sound very dedicated and diligent in regards to Ace's health. Please keep us posted as to how things go.

What was the Fanconi status of Ace's parents, grandparents, etc. - do you know?

I do not. They were never tested.(they are not in the OFA database)

I tried to find her"breeder" but all I found out was that she divorced a short time after I got Ace and "got out of the breed" she went back to her maiden name but I don't know what that is. I found her now, ex-husband and he is re-married but he is not returning any emails or phone. I found on of her kids on facebook but he will not friend me.
So no help there.

Jessica

[Batcavebasenjis]

@Kipawa:

Is changing from Fanconi carrier to Fanconi affected heard of a lot? Possible the first test was wrong? This is very sad but I'd love to hear our Forum experts' thoughts on this.

Well Aug 28th 2007 Ace tested Carrier the in 2011 re-tested affected

I had them retest her three pups. In 2007 two had come back carrier(run Sept 2007), the 3rd Ra's came back affected(run Oct 2007).
When they were retested all three came back carrier.

I know what you are thinking Ace and Ra's tests/results got mixed up…no once I got Ace's test back (and the sire had come back carrier as well) I made his owner get him tested right away.

I have been talking with Julie Leicht of Tailwind Basenjis, in Oregon..the same thing is happening with her dog...in 2007 he tested carrier and Feb 16th he was diagnosed with Fanconi.

So 5 dogs that were tested in the fall of 2007 were retested last week and 3 of the 5 now have different results.

Jessica

[sharronhurlbut]

Heartbreaking. Hugs, hugs, hugs.
Sometimes life is so darn unfair.

[Therese Leimback]

Jessica,
I'm so sorry for you and your girl Ace, I will keep you both in my prayers and hope your girl responds well to the protocol and lives many happy years with you.
Thank you for sharing your news at a difficult time and please keep us posted on your girls treatment when you can. With a name like Ace she must be very special.
Hugs,
Therese and Kevin Leimback
FoPaw's Basenjis

[sharronhurlbut]

We really are here for you. Hugs again.

[tanza]

I agree with Therese… we all need to remember that the Fanconi DNA test is a "linkage" test... and we should not forget that strip testing should still be done... especially on Carriers and tested Affecteds... and to take a step further, even Clears... Until we get a direct test.. this is our best line of defense.. and to report those findings as hard as they might be to accept. It is not easy... it is not happy to find errors in the Linkage test, but they will happen. Hopefully the BCOA (Basenji Club of America) will become better at advising the membership of results and of results that may indicate one test result that is then proven incorrect. But at this point, we need to use what we have and continue to test and strip our Basenjis... until we have a direct DNA test

[Batcavebasenjis]

@tanza:

I agree with Therese… we all need to remember that the Fanconi DNA test is a "linkage" test... and we should not forget that strip testing should still be done... especially on Carriers and tested Affecteds... and to take a step further, even Clears... Until we get a direct test.. this is our best line of defense.. and to report those findings as hard as they might be to accept. It is not easy... it is not happy to find errors in the Linkage test, but they will happen. Hopefully the BCOA (Basenji Club of America) will become better at advising the membership of results and of results that may indicate one test result that is then proven incorrect. But at this point, we need to use what we have and continue to test and strip our Basenjis... until we have a direct DNA test

I totally agree.
Strip test, strip test, strip test all of them!!!

Chances are you never will but trust me you do not want this feeling…my baby girl is sick and she was not feeling well, for who knows how long and I was not doing everything I could have been, to help her....and I should have been. I really lucked out and she is doing well, and everyone seems sure we found it early. But trust me the guilt is still there.

I have been talking to a few BCOA board members and they are working on getting more info out of the lab....info that they will not give me.

[tanza]

Not sure that information you are looking for… but the BCOA Health Committee is working on updating information and any new information, especially from Dr. Johnson's point of view. However it will be at least 2wks before he can address our questions directly.

[dcmclcm4]

I strip test any of my rescues whose parents-both of them have not been DNA tested and that is most of them. I also recommend strip testing these dogs starting at age 2 and any dogs that have not had the DNA test done. So far, I have not had a problem with the testing.

Jennifer

[Kirsten]

Jessica,

Heartbreaking news. I'm so sorry.

[khanis]

It was almost 2 years ago that I posted on this list the NEED to strip test your basenjis if they came from ANY breeding that COULD produce an Affected.

I was the first to admist that I was NOT stripping, and as a result, one of our kids that tested as Carrier was bred to a Clear and all resulting pups were Carriers. While this wasn't a bad thing, we thought it odd. At the same time, our girl was looking kind of crappy and I suggested that Mom test her thyroid… when at the vet they catheterized her and tested her urine... not only was there a UTI, but she was spilling sugar.
"Funny" was swabbed and re-tested and each time showed as a Carrier.
Funny died of Fanconi Syndrome a few days after my Mom returned home from the hospital. Funny held on to wait for Mom. Funny NEVER showed any signs of excessive drinking and peeing when we found she ws spilling sugar. She was 5 years and 10.5 months of age when she passed away in Mom's lap.

Since the inception of the linkage test, they have new testing equipment. Things are getting better. Sure, there may be mistakes. But ANY type of procedure that involves humans will also involve human error.

I hate that we are seeing (not saying here, but in general) many people try to lay blame on those doing the test.
BE THANKFUL FOR THE TEST.
Were you around with Basenjis in the 70s and 80s and 90s and see/experience the Fanconi Syndrome in yours and others Basenjis?
As the saying goes: WE HAVE COME A LONG WAY BABY!

I NEVER thought that I would see a test for Fanconi Syndrome in my lifetime.
I am, and will always be, thankful for this test, NO MATTER the number of errors, in my favor or not. I have had far more than my fair share of Fanconi Syndrome in my dogs. But, I will remain positive that they WILL find the exact gene and they WILL develop a direct test. MY GLASS IS HALF FULL.

All that aside Jessica, I do sympathize with you, as I have been there, many many times already.

[bewler]

So, some people have mentioned a "blood gas test". Is THAT an effective test? Can you give it to a young dog to find out if it's clear or do you only use that test after they have strip tested positive? I am confused by all of the different tests mentioned.

[tanza]

@bewler:

So, some people have mentioned a "blood gas test". Is THAT an effective test? Can you give it to a young dog to find out if it's clear or do you only use that test after they have strip tested positive? I am confused by all of the different tests mentioned.

Blood gas test is not a test that can determine Fanconi. It is a test used after you determine that they are spilling sugar in the urine and have had them check by the Vet to determine that they do not have sugar in the blood(as would a diabetic)

[khanis]

When a dog is Affected Fanconi Syndrome [ie, spilling sugar], a VBG (Venus Blood Gas) panel is ran on their blood.

The majority of general vets do not have this particular machine (the iStat). In Portland, we have two emergency clinics with it and travel to either of them to get the panel ran. The emergency clinic generally passes the results to the regular vet that consults Dr Gonto, or consults the portocol to decipher the amounts of supplementation needed for the dog.

This panel will then tell us important values that we need to know on our dog.
BUN, Creatnine, pH, sodium, potassium, etc.
We watch those values and use several of them to determine the number of sodium bicarbonate tablets to supplement per day.

About a year before the test was available, I was in talks with a few fellow breeders about purchasing an iStat machine so we did not all have to go to the emergency clinci to have the panels ran.

[Batcavebasenjis]

Talked to Dr. Gonto today. Ace was having some crabby spells about once a week….and that is just not like her.

I sent him all her blood work and a list of everything we have been giving her/doing for her.

He said her blood work look "wonderful"

He said her potassium was still a little low but only a little bit.

He upped her other vitamins from a 1/2 twice a day to 1 pill twice a day.

I told him she seemed to feel better when she had the "wet meat" the night before so now we do that every night.

I had told him about Ace testing carrier and how we found it because she was peeing in the house. He said him too. He took his girl in for a UTI and came back with a Fanconi diagnosis and his girl was from a Carrier x Clear breeding.

He is such a nice guy and I am just amazed that he takes the time to help Basenji owners around the world. He emailed me back with in a few hours and then several times after that.

He thinks what with a few changes I will have a full time happy Basenji girl!!:D

I have found some comfort in that with every error found we can get closer to finding the gene and a 100% test, till then,
Strip test, strip test, strip test!!!!!

Jessica
Ace says "Dr. Gonto is my hero!!":)

[Therese Leimback]

Jessica,
I am glad Ace is feeling better and thrilled Dr Gonto was able to help. I agree he is a hero, I thought that the first time I met him. He truly does this for love of the breed and no one can dispute that.
I don't know if you are on the MDG list, it is members of the BCOA. I believe this would be valuable information for them. Would you be willing to post this message or would you give me permission to post it as you wrote it here. I am trying to impress upon people that we need to strip test all dogs not just dogs that tested carrier or affected. I think we should all keep strip testing all basenjis until we get an actual genetic test and I think this might help get that point across. If Dr Gonto has a dog from clear to carrier then it reinforces we should test all dogs because his the clear in this breeding may have been carrier or affected instead.
I want to be respectful of what you are going through and don't want to ask you to do or allow me to do anything you aren't comfortable with, after all you don't know me from Adam. But two people with Ace's like you and I must have like minds.
I will keep your girl in my prayers and ask my Ace now above to put in a good word for her too.
I will respect whatever your decision is on this. Hugs to you and Ace!
Therese Leimback
FoPaw's Basenjis
www.fopawsbasenjipuppies.com

[Batcavebasenjis]

@Therese:

Jessica,
I am glad Ace is feeling better and thrilled Dr Gonto was able to help. I agree he is a hero, I thought that the first time I met him. He truly does this for love of the breed and no one can dispute that.
I don't know if you are on the MDG list, it is members of the BCOA. I believe this would be valuable information for them. Would you be willing to post this message or would you give me permission to post it as you wrote it here. I am trying to impress upon people that we need to strip test all dogs not just dogs that tested carrier or affected. I think we should all keep strip testing all basenjis until we get an actual genetic test and I think this might help get that point across. If Dr Gonto has a dog from clear to carrier then it reinforces we should test all dogs because his the clear in this breeding may have been carrier or affected instead.
I want to be respectful of what you are going through and don't want to ask you to do or allow me to do anything you aren't comfortable with, after all you don't know me from Adam. But two people with Ace's like you and I must have like minds.
I will keep your girl in my prayers and ask my Ace now above to put in a good word for her too.
I will respect whatever your decision is on this. Hugs to you and Ace!
Therese Leimback
FoPaw's Basenjis
www.fopawsbasenjipuppies.com

I was not and another friend asked me about it today too. So now I am.
Wow. My ears should have been burning…
Thanks for the heads up but most of all thanks for the kind words.
Jessica