11/06/11 - Today I left for a week- trip for work. Based on Reo's slight regression the last time I was gone for a week, I consulted with Caroline Levin and decided to pulse Reo's daily Medrol dose. Every other day, she'll get 1.5 mg. It will be interesting to see if this preemptively helps stave off any stress/estrogen spike.
She has been really good and stable lately, so we will see how she does this week! We will only do this for the days that I'm gone, unless any symptoms give us an indication we should do it for longer.
I still think that my being gone for a week is more stressful on me than it is on Reo! ;)
In March 2011, our Miniature Pinscher, Reo, suddenly went blind and was diagnosed with SARDS (Sudden Acquired Retinal Degeneration Syndrome). We were given no hope for vision recovery, but through research, perseverance, love, tears, and a lot of luck, we brought our dog back from a serious illness, and restored some functional vision in about 5 months! This is our story, our journey...and we hope that by sharing our story, we can help other dogs diagnosed with SARDS!
BLOG DISCLAIMER
**DISCLAIMER** Please note: I am not a veterinarian, and the purpose of this blog is solely to educate, provide resources, and share Reo's story. In this blog, I will present research and information on the theories of SARDS to which I subscribe, along with my own narrative. If you think your dog may have SARDS, or adrenal exhaustion/Plechner Syndrome, please seek veterinary care right away!
If you are just beginning your SARDS education, I suggest you start with the blog post from August 22, 2011 entitled "SARDS Resources". If you'd like to know our trials, tribulations, and joys from the beginning, start with "But first...Reo!" and click chronologically on from there.
If you would like to read my suggestions as to how I would approach treatment for a newly-diagnosed dog, check the November 16, 2011 post "If I had another SARDS dog" (and then read my blog more fully for appropriate context).
Though we have decided to suspend Reo's retinal protection supplements in September 2012 (see September 16, 2012 post "Decision for Reo") due to the fact that she had very little remaining vision, I am still strongly supportive of our treatment approach, and know that it changed Reo's health and longevity in a positive way. Feel free to comment and ask me any questions - I am happy to help if I can!
Update: Reo became an angel on October 21, 2014. She had a profound kidney infection, causing acute kidney failure, and she was unable to recover. The contributing factors to her decline are covered in my February 16, 2015 blog post "Farewell to Reo".
Though I do not regularly update this blog any longer, much of the information is still relevant (though some of the links may be out of date). Feel free to join the conversation at "SARDS Dogs United" on Facebook.
Sunday, November 6, 2011
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Lynn,
ReplyDeleteI have just completed reading your blog from beginning to present. What a herculean effort to have chronicled this journey you and Reo have been on. Our little Miniature Poodle "Gracie" has just been diagnosed with SARDS earlier this week. My wife and I are just overcome with sadness and concern. I have an ERG scheduled for next Tuesday (11/15) ... I also have the Ocu-GloRx supplement on the way.
I have done a good bit of reading on Dr. Prechner's site but still have much more to do. I am still trying to get my head wrapped around ALL of the medical terminology and the course of treatment involved in "Dr. P's" protocol.
Can I ask a dumb question?
"Gracie" is spayed! How can/could she have excessive levels of estrogen?
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Any guidance you can give will be appreciated.
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Hi there! Thanks for reading Reo's story! If we can help just one person/dog with information, it is all worth it! :)
ReplyDeleteI'm sorry to hear about Gracie. I know just how you feel - it is so hard to cope in the early days of SARDS, feeling so helpless!
Your question is not dumb in the least! :) Estrogen can be produced in the ovaries, but also in the adrenal glands that sit on top of the kidneys. The adrenal glands are responsible for making the stress hormone, cortisol. When in overdrive due to stress (physical, emotional, environmental) sometimes the adrenal glands make a "mistake" and produce estrogen instead. This is why male or female dogs can have adrenal exhaustion/Plechner syndrome.
I highly suggest that Gracie get the blood panel from NVDS as soon as possible, so you can identify whether or not the protocol needs to be initiated.
Caroline Levin's site is a phenomenal resource for SARDS, and the supplements she suggests are readily available (I get mine from Amazon.com).
Please don't hesitate to contact me if you have any other questions! cookypuss1 *at* gmail *dot* com is my address.
Best of luck to you and Gracie!
Lynn,
ReplyDeleteThankyou for the reply ... and, for the offer to help with any questions I might have. Be careful what you ask for! :)
I will post again (or, eMail) after Gracie's ERG on Tues. 11/15.
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I am assuming that I will need to convince Gracie's "primary Vet" to get onboard with the whole "NVDS blood panel" procedure before proceeding with that - correct? Do you foresee this as a potential "at loggerheads" event ... given the reluctance of many Vets to "think outside tha box"?
TIA
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Good luck with the ERG. Do not be surprised if Gracie seems to get "worse" when you get her home after the ERG. Getting the ERG done is very stressful, which can cause an estrogen spike and increase in symptoms (confusion, lethargy, increased thirst/urination/hunger).
ReplyDeleteBased on my experience, your vet will probably be okay with getting the blood panel done - it's "just" a simple blood test! I really encourage you to recommend the NVDS panel and not the Univ. Tennessee or Univ. Michigan ones (the latter are the ones with which most vets seem to be familiar). After Reo's vet did the blood draw, she spun it down and packed it on ice and I had to send it myself to Texas for analysis.
It might be a good idea to print out the submission paperwork and bring to your vet for discussion. If you get the blood draw next week and get the sample to the lab in Texas by u Thursday/Friday, you will get the results back on the following Tuesday (they run the samples over the weekend).
The trick comes after the results come back. If Gracie has Plechner syndrome/adrenal exhaustion, you may need to prepare yourself to convince your vet and/or switch vets (I had to do both in the end). But, this will depend on your research, too, and what you feel is best for Gracie. Dr. Plechner or Caroline Levin are both available to speak to your vet and help you to advocate for her treatment. In what part of the country are you located?
Will look forward to your update via comment or email! Best wishes!
Lynn,
ReplyDeleteBriefly ...'"Gracie" had her ERG today. As was pretty much expected, the ERG registered a "flat line" response.
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A brief conversation ... following the ERG ... with Gracie's Opthalmologist proved to be nothing short of frustrating and disappointing. She was of the mindset of ... "gameover ... deal with it ... she will adjust ... move along ... nutin' to see (no pun intended) here!"
The mere mention of Caroline Levin and Albert Prechner brought on chides of fraud ... junk science ... if not "outright laughter"! Needless to say, "Gracie's Opthalmologist is NOT on board!
Tomorrow I will discuss with Gracie's primary Vet the possibility of initiating the "EI-1 blood panel" per NVDS. We shall see if I meet with the same resistance.
Thoughts ?
I'll post when I know more!
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BTW, I finally got the Ocu-GloRx in the mail today. We'll start Gracie on it tomorrow. Is this enough in your opinion? Should I also consider the other supplements that Levin recommends?
Talk to you soon !
Hope "Reo" is well !
.
PS ... you asked what part of the country we are in ... Dallas / Fort Worth ! fwiw
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Hi there,
ReplyDeleteI am sorry to hear that your ophthalmologist was so discouraging! It is always disappointing to hear that, though I experienced the same, so I am not surprised. :(
With your vet, you could try the approach of "a simple blood test...let's just see out of curiosity". I wish you luck with your vet, and will keep my fingers crossed!
Has Gracie had any blood testing so far - a regular CBC or anything else?
Regarding the supplements, it truly depends on your goals for Gracie. What kind of symptoms is she displaying? How is she feeling and acting? Is your primary goal to get her healthy, or to have vision return, or??
Caroline Levin's research shows that is her protocol is initiated within 4 weeks of SARDS diagnosis, there is a 20% chance that some vision will return. This is not for all dogs, but there is some hope. We started Reo on the protocol 2 weeks after diagnosis. She had her vision return in about 5 months, though I still don't consider her 100% on either vision or health. It is a long road, but we are committed.
I would suggest to consider all of the options and decide what makes the most sense for you and your family. As you know from reading my blog, it can be a tough and frustrating fight to find a vet to help see you through treatment.
If you decide you want to go ahead with treatment, and your vet is not on board, it's possible that NVDS can help you identify a vet in your area who has submitted these panels before, and possibly treated for SARDS.
Back to the supplements, I don't use Ocu-GLO for Reo, and she is on a host of other things. So if you decide to treat Gracie, and get the blood test to determine adrenal exhaustion/Plechner syndrome, you can pro-actively obtain the supplements Caroline suggests, as Ocu-GLO will not be enough.
If you'd like to email me, I can send you some files to review. Or, if you'd rather keep it anonymous, that's ok!
Your comments got me thinking - how would I do things differently, in hindsight? I will write my next post about this - thanks. :)
I have an 8 yr old female schnauzer that was DX last October with SARDS and Cushings. What is the difference between Plechner Syndrome and Cushings, the symptoms sound the same.
DeleteHi there - I'm sorry to hear about your pup!
ReplyDeleteYou are right that the symptoms of Cushing's and Plechner Syndrome are nearly the same. Cushing's symptoms come from INCREASED cortisol production. Plechner Syndrome is DECREASED or INSUFFICIENT cortisol, but increased estrogen. Increased total estrogen causes many of the same symptoms as Cushing's. The hormonal testing that I discuss in my blog can help with diagnosis. Let me know if I can do anything else to help! :)
Hi Lynn,
ReplyDeleteThis week my dog was officially diagnosed with SARDS. Just yesterday my dog had the ERG that registered flatlined. He's been completely blind for about 2 months now. I live in Dallas and my dog is a 10 year old pug. Could you give me advice on the next step in what I should do and if there is anyone in my area that is that can help me further with his therapy. Of course I'd like his vision to return but even more so want to make sure no other auto immune diseases follow as a result of non treatment. Any advice would be greatly appreciated. Thank you!
Hi Richard, sorry for the delay of my response. If you have Facebook, I would encourage you to join the group "SARDS Dogs United", as there is lots of info there, and guidance from our members who have undertaken a treatment plan. If you have any questions, you can email directly at cookypuss1 [at] gmail {dot} com.
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