Fanconi Syndrome, Part 4

After Dr. Young Snot confirmed Yo-Yo's Fanconi syndrome with blood work but before the appointment with the specialist, Elizabeth and I went shopping for all of the supplements the protocol recommended. Mealtimes would never be the same again.

Our first stop was the neighborhood Walgreens. The Centrum vitamins, meant to replace essential nutrients Yo-Yo's kidneys were hell-bent on excreting before her body could absorb them, were easy to find. But the sodium bicarbonate eluded us even after a careful inventory of the shelves. So we went to find a pharmacist who clarified, "Oh, that's Alka Seltzer!" and accompanied us to the digestive remedy section of the store. None of us could find the bottle of pills described in the protocol, though. "Wait here a minute," the pharmacist said, then left to check the shelves behind the counter. "What amount should the pills be?" he asked when he returned. "10 grain," I confirmed from my printout. And then like a pirate showing off his treasure, he presented the 1,000-pill bottle.

In the crash course in blood chemistry and kidney function that Yo-Yo's Fanconi diagnosis has been, I've learned that floating around with the blood cells is sodium bicarbonate, a chemical necessary for regulating the acid level of a mammal's blood. Too acidic a level creates acidosis, a condition that causes irreversible cell damage and eventual organ failure. In the Fanconi-afflicted patient, the kidneys start dumping the sodium bicarbonate into the bladder where it is excreted prematurely, keeping the blood from the benefits of its neutralizing powers. By supplementing the dog with additional sodium bicarbonate [as many as 32 pills per day], the dog manages to retain enough of this important chemical, despite the insistence of the kidneys to usher it out of the body as speedily as possible. Who knew, Alka Seltzer in our blood!

Our next stop was Petco, my least favorite of the pet supply stores but in the same shopping center as Walgreens. Here we braved smelly rodent cages to find the Pet-Tabs Plus and Pet-Cal, the canine-specific supplements on the protocol's list [the Pet Tabs smell so good that even though I am human, I'm tempted to try one myself]. The only problem was that the bottles were so dust covered that I wondered how long they had sat on the shelf.

We decided to do things right and headed over to Pet Supermarket, my prefered pet supplier, for the purchase. Once there, however, we discovered that Pet Supermarket sold neither supplement. We found Pet Tabs, but I stubbornly insisted that since the protocol said Pet-Tabs Plus that I must have that type. Elizabeth, who was doing the driving, agreed to return to Petco where we purchased the dusty bottles.

Our last stop was a General Nutrition Center, which no longer sells the exact product mentioned in the protcol, Stack, an amino acid supplement for body builders. [Now it's called "Fuel."] As I certainly wouldn't pass for a Schwarzenegger wannabe, the clerk asked why I needed this supplement. I explained that the pills were for my dog, whose haywire kidneys were causing her to lose too much protein. "Oh, we get people buying stuff for their pets all the time!" he said. I guess a mammal is a mammal ...

The other items in the protocl were dog food. One Fanconi syndrome story mentioned Innova as a good choice of food, especially because its probiotics reduced urinary tract infections. This food, however, is sold in "specialty boutiques," the closest one quite a drive from either home or work. I mentioned this brand when Dr. Skeptical, the specialist, was quizzing me, and she made a very good point: Don't buy food that would be difficult to get. She said that the lamb and rice Eukanuba, what Yo-Yo and Bug currently eat, qualified as good food. Since the specialist compound didn't have a whole wall devoted to a specific brand of dog chow, since no one attempted to suggestive sell anything to me [as do my regular vets], I decided that I could trust her advice and keep Yo-Yo on Eukanuba. I now add a scoop of low-fat Stoneyfield Farm yogurt as a way to get healthy bacteria into her.

The protocol also requires one can per week of mammal-based wet food as a way to replace long-chain amino acids. Pre-diagnosis, Yo-Yo already got a scoop of canned Eukanuba with every meal; now she gets a huge scoop. In addition, I make meatballs from beef and rice Nutro [more malleable than the Eukanuba wet] to get the sodium bicarbonate pills down.

Since the protocl mentions that the Centrum is replacing "trace" vitamins and minerals lost in the deluge of urine, I also add a slice of roasted sweet potato, a scoop of canned pumpkin, or a pinch of broccoli sprouts [the most nutrient dense human foods I can think of] to her dinner.

Stories from basenji owners made the pilling sound like a difficult chore. They include ways to "trick" the dogs into taking the supplements. Yo-Yo, however, has balked at none of her new meds. The Pet Tabs and Pet Cals are flavored, and Yo-Yo will nose around the kibble seeking them out. I would require a huge gulp of water to swallow either the Centrums or amino acid supplements, but I just roll them in a dog food meatball, and Yo-Yo sucks them down in her happiness over extra wet. Mealtimes are more labor intensive, though. Gone are the days of a scoop of kibble and a scoop of canned. Now I have to assemble complicated bowls with more "courses" than any of my own dinners. So that Bug doesn't feel left out, I give him one Pet Tab per day, pill-less extra meatballs, the yogurt and sweet potato slices.

Fanconi Syndrome, Part 3

After Dr. Young Snot explained her apprehension about treating Yo-Yo, I quickly made an appointment at the area's huge veterinary specialist compound, comprised of four separate buildings and 15 different vets. A week later, we made the long drive and found our building, Internal and Avian/Exotic Medicine. As we sat in the waiting area, we listened to a macaw squawking from the bird side. Dr. Young Snot had described the facility as someplace so nice and so advanced that a human being would feel comfortable receiving treatment there. When a tech put Yo-Yo's front leg into a blood pressure cuff and pumped it up [$25 charge], I was convinced. That we waited 45 minutes past our scheduled appointment time before seeing the doctor was another factor reminiscent of a trip to a human health facility. While Yo-Yo shook beside me, I was happy to observe that regular art decorated the walls, not posters from drug companies advertising medication my pets just had to take.

No matter how impressive the facility was, seeing a specialist is no fun. I waited knowing that the only reason for the visit was a health issue so rare our regular vets couldn't handle the problem. When I glanced at the other patients and their humans, I knew that they were in dire straits as well. One woman left an exam room in tears. The doctor had had to admit her rottweiler for overnight care. The receptionist whispered that after putting down two of her own—one only three years of age, the other four—she would never have another of the breed. Rottweilers must have their own health issues.

When we finally met the doctor, I did find her very impressive, despite my annoyance at the long wait. While Yo-Yo hid under the hardwood bench in the exam room, this woman took out a blank form and asked me all kinds of questions. She wasn't rushed or impatient as our regular vets could be, wrote down all of my answers, and encouraged me to ask questions of my own.

After getting Yo-Yo's health history, she folded her hands and told me that no published scientific research proved that the time-honored protocol made the slightest bit of difference in the progression of Fanconi syndrome. She had seen some owners adhere to it religiously and others who just monitored blood gases. She didn't come out and say it, but she intimated that all the animals progressed identically. The last dog she had treated with Fanconi syndrome lived until 12 [an age I would be happy to see 6-year-old Yo-Yo reach].

I told Dr. Skeptical that I wasn't bothered by the lack of published scientific research. Basenji people had lots of anecdotal evidence that the protocol helped, so I wanted to try it. I realized later, while digesting this whole afternoon, that a scientific study would be nearly impossible to arrange anyway. Fanconi syndrome is incredibly rare outside of the basenji breed while basenjis are rare themselves, so finding enough candidates for a double-blind study would be difficult. To further complicate the research, no basenji owner I know would agree to enter a dog into the study and then receive placebos in place of the meds that the protocol recommends. My understanding is that to prove the protocol's effectiveness, some dogs would receive sugar pills so that researchers could compare the results of those unlucky participants to the dogs who got the real thing. Only under these conditions could the researchers show that the "protocol-ed" dogs lasted longer and did better. Not even in the name of hard science and to make progress toward journal-verified treatment would I allow Yo-Yo to be part of such a study, a feeling I'm sure all basenji owners would share.

After our first discussion, Dr. Skeptical left to prepare the estimate. At this point I was a little panicky. Dr. Young Snot had said, "Why spend money for a very expensive blood gas panel if you don't need it?" Since the blood and urine work that she had performed cost $127, I assumed that the Venous Blood Gas Panel must be double or more in price. I figured that with the expensive exam fee for a specialist, I'd be lucky if I got out of there under $500.

When Dr. Skeptical returned, I was pleasantly surprised. The blood gas panel cost only $40. She wanted to culture Yo-Yo's urine, looking for an infection that might not be readily evident in Yo-Yo's diluted pee. "It's dark, warm, and sugary in there--the perfect place for bacteria!" she noted. This test was a pricey $110 but recommended in the protocol, so I agreed. The exam fee itself was a whopping $125 [compare that to the $36 the regular vets charge], but I really appreciated never feeling rushed and getting plenty of opportunities to ask questions. Dr. Skeptical explained that follow-up visits would be half that price. She also wanted to do an ultrasound of Yo-Yo's kidneys [apparently they had all the toys in the back]. To culture urine, she explained, she would have to insert a needle right into poor Yo-Yo's bladder so that the sample would be sterile and the lab wouldn't be growing bacteria picked up outside the body. So many dogs these days are overweight that the ultrasound is usually mandatory to find the bladder. "Yo-Yo's nice and trim, though, so I think I can find it by feel," Dr. Skeptical added, and we dodged that expensive bullet. She wants to perform the ultrasound at the next visit just to see if my poor dog has shriveled little kidneys or ones that are a normal size.

Yo-Yo got hustled into the back and returned 15 minutes later. Eventually Dr. Skeptical rejoined us with the blood gas results and showed me how to calculate the dosage of sodium bicarbonate [pCO₂ = 37.9 mmHg; pH = 7.252; dosage = 80 grains or 8 tablets]. I knew that some Fanconi dogs took as many as 40 pills daily, so I was happy to learn that in addition to the vitamin and amino acid supplements recommended by the protocol, Yo-Yo needed only 8 sodium bicarbonate pills per day, 4 with breakfast and 4 with dinner. At this point I didn't know what challenge administering the pills would pose, but 8 per day was a way easier number than 32, the highest dosage in the protocol.

I asked Dr. Skeptical if she thought Yo-Yo was asymptomatic or symptomatic as I didn't understand the distinction, and the difference determined how much of the other supplementation Yo-Yo would require. She seemed a little stumped by the question. On the one hand, Yo-Yo looked perfectly healthy and had nearly normal blood readings. Dr. Skeptical had said earlier, "Look, based on her blood work, she feels fine, so don't let what you know about the disease affect how you treat her. Just let her be a dog!" On the other hand, Yo-Yo was drinking and peeing slightly more—although I couldn't tell if that was the result of all the hard play and emotional upset of having our foster boy Java around. Dr. Skeptical finally concluded that drinking more = kidney damage = symptomatic, but she didn't seem entirely convinced.

I left with the blood gas results in hand, something I had wanted for over two weeks. We would have to return in 10 weeks to see if the sodium bicarbonate supplementation was doing its job stabilizing blood acid levels and preventing organ damage in Yo-Yo's body.

Fanconi Syndrome, Part 2

Yo-Yo and I showed up for our appointment at the vet's on the Wednesday before Thanksgiving. Since I had earlier left a list of tests that my poor little dog needed, I expected to walk in, have the techs draw Yo-Yo's blood, and then get me the results. With that information, I would discuss protocol variables with Dr. Young Snot. I already knew that the discolored urine test strip meant Fanconi syndrome and was eager to get Yo-Yo on the pilling regimen that would make the disease a manageable, chronic condition.

Dr. Young Snot had other ideas, however. She was unhappy that I was playing the doctor and diagnosing rare illnesses based on pages I had downloaded from the web. "It's good to see that you've done internet research," she noted with condescension, holding up the protocol I had printed and delivered beforehand. "But none of the doctors here have ever had to diagnose this disease."

On the one hand, I understood her patronizing manner. I have had a similar experience: 18-year-old students from area high schools rated D and F by the state who tell me what excellent writers they are. These young people, with their essentially meaningless diplomas, believe they know more about effective composition than I, a veteran teacher and published author. I could sympathize with Dr. Young Snot; I'm certain that she has seen her share of clients who drag in all kinds of crap off the internet and don't know the difference between credible and bogus websites.

On the other hand, her dismissal really angered me. I might not have ever pithed a frog or dissected a kidney, but I am far from stupid and know my breed and its health concerns. I am also capable of reading and understanding scientific literature, even though I might need a dictionary by my side while doing so. I have been a client at this practice for over ten years and have never waved internet printouts at any of the doctors. I don't interfere during an examination and always follow the doctor's instructions. When the Old Man injected Eudora, my ancient cat, with cortisone [$70 visit] because she was clawing at her face—"It's a food allergy, and this will fix her right up"—I didn't complain when, two weeks later, Dr. Young Snot discovered the abscessed tooth [another $200] that the Old Man had missed since he didn't even bother to look in Eudora's mouth.

Dr. Young Snot was unable to run the Venous Blood Gas Panel, a test necessary for detecting the acid levels in Yo-Yo's blood, because the office didn't have an I-Stat machine, a fact that no one mentioned to me when I left the list of tests that I needed performed. Dr. Young Snot wanted instead to do only the urine analysis and a senior blood screening. These tests, which cost $127, had to be sent out to an independent lab. With them, Dr. Young Snot would confirm or rule out Fanconi syndrome. "Why spend money for a very expensive blood gas panel if you don't need it?" she asked.

She drew blood for the senior screening as well as a heartworm check—"Might as well while she's here"—and sent us on our way [total bill = $193]. I had hoped, after leaving the office, to know how many and which pills I would be administering, but instead I had a five-day wait for the lab to return results. "I'll call you on Monday," promised Dr. Young Snot. "It's probably not Fanconi syndrome, and you can bring her back for her shots since she's overdue."

While waiting for the lab results, I was plagued with anxiety and guilt. Although the protocol notes that dogs lead fairly normal lives with the correct supplementation, basenji people always discuss Fanconi syndrome in tragic terms. That I couldn't immediately start the pilling was also frustrating. If I had tested the dogs every month as recommended, how much sooner would I have caught the problem? Yo-Yo was showing few if any symptoms. She was a healthy weight and had a nice coat and skin, all things negatively affected by the disease. She had been drinking slightly more, but I had [mistakenly] attributed that to a very long, very hot summer, worse than usual because we had lost so much shade after last year's hurricanes took out one-third of the neighborhood trees.

Late on Monday afternoon, I still had not heard from Dr. Young Snot. I called the office as soon as I arrived home from work. The techs told me that she was with a client and would return the call. In my imagination, I saw her in front of the computer visiting the same websites where I had done my research, trying to make sense of Yo-Yo's test results. The basenjis and I sat by the phone, unable to take our afternoon walk, waiting to hear. Elizabeth came over to walk Bug for me, but Yo-Yo refused to leave the house for more than a quick pee and seemed as impatient as I for the news.

I decided that at 4:45—fifteen minutes before the office closed—I would call back and demand my $127 test results. At 4:43, the phone finally rang. Dr. Young Snot said that yes, Yo-Yo had Fanconi syndrome [big surprise]. Yo-Yo did have sugar in her urine [yet another big surprise] and a high level of creatinine in her blood [1.8 when the reference range is 0.5 - 1.6]. The high creatinine level meant abnormal kidney function. The good news, though, was that she was heartworm negative [wow, another big surprise]. I'm sure that I imagined it, but I thought I heard in her voice disappointment, not that Yo-Yo was sick but that my unschooled diagnosis had in fact been correct.

Since none of the doctors at this practice had any experience with the disease, Dr. Young Snot wanted to refer me to a specialist, which meant postponing the start of the protocol even longer. I told Dr. Young Snot that I wasn't bothered by her lack of experience, that we could learn the ropes together, but she felt uncomfortable and had already consulted with a doctor who had treated a couple of dogs with Fanconi syndrome. Dr. Young Snot couldn't say enough good things about the specialist and the huge veterinary compound where the doctor worked, but I was demoralized by another expensive trip to see someone who didn't have considerable experience with the disease but would charge me twice as much for the privilege of working with her.

I was able to get a copy of the test results and could compare some of the numbers on it with those that Dr. Gonto mentioned in the protocol. Yo-Yo seemed very close to normal, and I realized that if I hadn't fostered Java, hadn't tested all of the dogs because of a remark that the coordinator made, but had brought Yo-Yo in for her regular annual, that the disease would still be undiagnosed. In this situation, a well-informed basenji owner did know a little more than the vet.