SARDS and mitigation/treatment

Pepi and the blinding condition Sudden Acquired Retinal Degeneration Syndrome (SARDS)

My 10-year old Maltese, Pepi, had a sharp drop in vision on June 12, 2010. He had difficulty seeing the treats I held in front of him, and a visit to the vet was a shock as he said that Pepi was blind - there was no response to the vet moving his fingers close to Pepi's eyes. Glaucoma was ruled out , and blood tests were done. Cushing's was stated was as a possibility and the recommendation was to also see an opthalmologist. It was heartbreaking to see him walk into things, and among other things, Pepi was also stressed out with not being able to see a step leading from the dining room to the den where he has his meals.

I checked the internet and read what I could. I found and bought the book Living with Blind Dogs by Caroline Levin. The first opthalmologist I visited diagnosed Progressive Retinal Atrophy (PRA), based mostly on a comment I made about a lady who helps with boarding saying that Pepi didn't see well at night, but that an electroretinogram (ERG) was needed to confirm. Blindness was certain according to him. More reading followed, and the suddenness of the blindness didn't seem to fit. SARDS looked like more of a possibilty as Pepi had insomnia, dark skin, pimples, scratching, and allergic reactions leading up to this.

I found good material in Ms. Levin's book, as well as on the author's website at www.petcarebooks.com. There's also www.sardsawareness.org which documents a couple's experience with their dog and their visit with Dr. Grozdanic, a SARDS researcher at Iowa State University. I went to a second opthalomologist who thought that SARDS was more likely. I showed her material from Ms. Levin and Dr. Grozdanic, but she said that there was no medically accepted treatment, and that the work was experimental.

The SARDS diagnosis at least gave me some hope. I felt from what I read that time was of the essence, and I followed Ms. Levin's diet recommendations (supplements and home cooked meals) as soon as I could, as Ms. Levin stated that the supplements were protective of the retinal cells.

I had an ERG done, and the result was written as "The electroretinogram lines are flat, showing no evidence of photoreceptor activity (no amplitude or latency waves). This result is consistent with SARDS", and the prognosis for vision was "Poor OU". He was blind and there was nothing that could be done. While this was depressing, I read from Ms. Levin's and Dr. Grozdanic's sites that some percentage of dogs do recover functional vision if treated early, and I felt I had to try.

Pepi's ERG on Jun 28, 2010 (2 weeks after onset):

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Pepi's ERG

I compiled info from Ms. Levin's website and from Dr. Grozdanic and showed them to the vets and an internist that I visited, hoping that they could confirm adrenal exhaustion (the cause stated by Ms. Levin) and begin Ms. Levin's suggested therapy of hormone replacement. The vets agreed to testing, but they invariably wanted to test for causes that they were familiar with.

I submitted Pepi to their many tests (blood chemistry, ultrasound, low dose dex, Univ of Tennesses's blood panel) thinking that if the evidence built up to rule out what they thought, and if the results instead matched those documented by Ms. Levin and others (there's a research paper documenting elevated sex hormones in SARDS dogs), that they would be more receptive to treating as recommended. The test results did indeed provide contradicting evidence - atypical Cushing's, atypical Addison's, no tumor... This dragged on for another 2 weeks and it was disheartening to hear them dismiss Ms. Levin's and Dr. Grozdanic's work and encourage acceptance in various ways including: adrenal exhaustion is a new-age term, human biology is different, there is no treatment, he'll adjust quickly, etc. Meanwhile, Pepi's condition was getting worse - more lethargy, more scratching, etc. He wasn't entirely blind yet - I noticed he could still make some things out in bright light, but the little he could see was decreasing.

The Univ of Tennessee's test results showed atypical Cushing's but elevated sex hormones (matching Ms. Levin's materials again), and the vet followed the lab's recommendation and prescribed melatonin to start. I googled and found material on Ms. Levin's website saying that melatonin actually made things worse for a SARDS dog. That was the last straw for me.

I contacted Ms. Levin and paid to consult with her - it was great, and something I wish I did much sooner. On her encouragement, I tried a different vet and this time, the vet agreed to treat Pepi as Ms. Levin recommended. Almost a month after onset, Pepi had a low-dose dexamethasone + triamcinolone acetonide injection to start and he's been on low-dose hormone replacement therapy since.

Pepi's condition started improving - becoming livelier and amazingly, his vision started getting better as well. It wasn't a straight line though - there would be stretches of days where things would go great, then there'd be regression, but slowly, things have gotten much better.

His sight is still impaired but he can see in bright light, and not well in dim light, though that seems to be improving too. On his best days, he can see and chase birds off the fence, react to cats and dogs from a distance. For the step to his food, he's adapted by moving up close, finding where it is and jumping off. It looks like he needs much more contrast than before onset to see.

Pepi is 10 lbs, and the supplements he's taking daily include:

For hormone replacement:

Videos of Pepi from Aug 2010 (following treatment, 2+ months after onset):

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Ms. Levin's states that many SARDS dogs test low for thyroid and immunoglobulins, and is the reason why she recommends the L-Thyroxine and Sulfasalazine. Pepi's National Veterinary Diagnostics Endocrine/Immune panel results from Oct 2010 (4+ months after onset) bore this out as he is still showing above-normal estrogen, low thyroid, and low immunoglobulins.

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Immune Panel test result from National Veterinary Diagnostics

I see that Dr. Grozdanic has had successes too, and in common, I see that he prescribes steroids as well. For the case that Ms. Levin's makes, it is an impaired ability by the adrenal glands to produce cortisol, with precursor hormones ending up or elevating estrogen instead. Ms. Levin explains that high estrogen symptoms are similar to those of high cortisol, which leads vets to think it might be Cushing's, but the Cushing's tests are commonly negative for dogs with SARDS, as was the case with Pepi (low dose dex + Univ of Tenessee ACTH). The Univ of Tennessee blood panel showed elevated sex hormones, and specifically estrogen with the test from National Veterinary Diagnostics. Ms. Levin's recommended treatment is to replace cortisol.

It seems unfortunate to me that the vets/the internist/opthalmologists/lab I encountered had such poor recommendations with mitigating and treating SARDS. I had no reason to question any recommendation by a vet prior to this. They recognize, detect, and treat for high cortisol (Cushing's), but not low cortisol/high estrogen. A problem that I read about may be with the tests themselves - not many labs distinguish between the cortisol and the cortisol precursor deoxycortisol, and both register as cortisol in the tests. Cortisol may then be reported as normal or high, even while the dog is impacted by low cortisol. From what I understand too, adrenal estrogen rises with low cortisol. Estrogen is not measured for in most tests and I remember one vet saying that it is of questionable value.

I wrote this with the hope that it can be helpful, and perhaps provide some encouragement that all isn't lost even when the vet or others may say that there's nothing to be done. If there is a possibility for mitigation or recovery, especially for newly diagnosed SARDS cases, this is a vote for Ms. Levin. I'm very glad and thankful that I found and followed her recommendations and advice. Both observations and test results matched her writings very well, and she helped save Pepi's sight and more.

For someone whose pet is newly diagnosed, an ERG and a test from National Veterinary Diagnostics + reading from the various sites (including Ms. Levin's and Dr. Grozdanic's) would probably be good, and if confirmed, it would probably help to treat as soon as possible.

Cheng Tan