AFTER A FANCONI DIAGNOSIS

Several months ago I wrote about my 7 year old basenji, Cleo, being diagnosed with Fanconi. After we received the diagnosis I didn’t really know what to expect or exactly what to do. Neither did our vet.

Basenji are not common where I live, and overall, Fanconi disease is truly not that common, therefore not something that a lot of vets have experience treating. When I began to suspect Cleo had Fanconi I tried to educate myself and kind of figured I would end up educating my vet as well. I was right. I had printed the Gonto Fanconi treatment protocol and read it numerous times before our appointment; trying to make sure I understood every detail and knew exactly what we would need to do. Our vet said that in nearly 10 years of practice he had never seen this disease and only vaguely remembers a short discussion about in veterinary school.

To start, I requested the appropriate labs for diagnosis and initial medication dosage. Our vet did not have the equipment to obtain a blood gas reading, so he made some calls and then sent us over to the emergency clinic where they had the correct machine. When the results came we discussed them and compared to the treatment protocol. I set out to e-mail Dr. Gonto, the author of the treatment protocol, for advice. Dr. Gonto graciously accepts e-mails from owners and veterinarians of basenji (and other animals) affected by Fanconi and will assist in interpreting lab values and recommending treatments. My vet sought assistance from some of the larger veterinary training programs in the region. The responses he got were disheartening to say the least. The first program said they had no idea how to help and referred him on to someone else. The next school said that Cleo’s prognosis was poor, and they haven’t found anything to successfully treat this disease. He specifically asked them if they were familiar with Dr. Gonto’s treatment protocol and they said that they had heard of it but do not use it! I was appalled and upset. Having done my research before hand, I knew that Dr. Gonto’s protocol has been shown to allow dogs to live a relatively normal life span with good quality of life. I told my vet that I wouldn’t accept the answers he had been given and I wanted to treat her according to this protocol. He said he was in no position to argue with me because he really didn’t know what to do. So we began treatment per Dr. Gonto’s recommendations.

It took about six months to get the medication dosage just right. During that time Cleo had a blood gas test every two months and her meds were adjusted with guidance from Dr. Gonto until the test results were within the normal range. I think Cleo got tired of going to vet so frequently. Here she is, sitting by the door, wondering why we are not leaving just as fast as we can!

After her diagnosis I also learned of and joined an online support group for owners of Fanconi dogs. I was shocked to learn from the group that my experience with a vet who didn’t know what to do was likely the norm rather than the exception. Even worse, the responses he got from the veterinary schools were not unusual either! Luckily my vet is open to learning how to treat this condition and very willing to work with me.

We are now 1 year and 4 months after diagnosis and doing very well! Cleo must be feeling good because, at 7 years old, she still seems to have a ton of energy…most days I can’t do enough to wear her out!

- Sarah
sedouthit@gmail.com