Thursday, May 21, 2015

PDE Updates and Action Plan

Hi everyone!  I know it’s been a while, and perhaps some of you might be wondering if I’m still around.  I try to stay aware of any news regarding Pug Dog Encephalitis (PDE) and you can always contact me via email, boostrom1@charter.net, or on Facebook (Payton Boostrom is my profile name, and you can message me even if we aren’t friends).  Besides this new post, I have also updated the blog by creating pages with the latest information about the disease, research, and treatment (links are in the text below).  I also want to reassure you that this blog, Pugnacious P, will forever remain online in honor of the toughest and sweetest and most inspirational pug, my angel Payton.  I will continue using it to raise awareness of PDE and spread hope of her miraculous story. 


If you don’t know what PDE (or more accurately, Necrotizing Meningoencephalitis (NME)) is, please read my summary – What is PDE?, which I’ve updated and also briefly reference two other common inflammatory central nervous system diseases, Granulomatous Meningeoncephalomyelitis (GME) and Necrotizing Encephalitis (NE).

For those of you who are new to this blog and Payton’s fight against PDE, I’d encourage you to read through the compilation of posts that detail her experiences – Payton’s PDE Story. 

Perhaps most importantly, for those of you discovering Pugnacious P after a frantic Google search suspecting your pug may have PDE, this post outlines what I would do today.  I am not a medical doctor or vet of any kind, and I provide this information solely based on my experiences and research trying to give Payton the best possible life.  So please consult your veterinarian before making any health related decisions about your pet.

Act fast.  You must act fast to give your pug a fighting chance.  See a vet immediately and consult a specialist/neurologist if at all possible.  Trust your instincts.  Note that some pugs do not display the entire classic profile for PDE so do not assume that the list of symptoms you find in on-line resources is complete.  Don’t be afraid to seek a second opinion.  Even Payton’s neurologist has consulted on other cases around the world after being contacted from someone who found this blog.
Treat.  It is imperative that treatment start immediately and aggressively if your vet has diagnosed PDE/NME/GME/NE.  Do not let any discouraging words stop you from trying to save your pug.  There IS hope!  Many vets, and even some neurologists, are just not familiar with PDE (and related inflammatory diseases) and not up to date with successful treatments.   Please read the PDE Treatment Guide I put together that summarizes the key medications that will fight this tough disease.  In this guide, you will also find a link to the exact drugs that worked for Payton and another regimen from a neurologist who claims to have dogs in remission.  I’d highly recommend bringing those two treatments to your first appointment.
Learn.  Do your homework and learn as much as you can.  But realize that many on-line resources contain narrowed thinking and incomplete or out of date information.  
Hope.  Despite what most on-line resources imply, know that there is hope for a quality life with successful treatments!  If you scan through other blog posts, it won’t take long to really get a feel for the wonderfully adventurous life that Payton led despite having PDE.  She truly was a miracle, living with PDE for 5 ½ years to the age of 9. 
Plan.  Unfortunately, there will come a time when we must say good-bye.  Please think about allowing your pet to become a part of a research effort when that time comes.  Arrangements can be made for veterinary pathologists to examine the brain tissue while still allowing your pet to be cremated and returned to you.  I know for me, it is a comfort and gives meaning to all of Payton’s struggles, and I’m so proud that she is still fighting against PDE by furthering Dr. Kimberly Greer’s research.  Through this research Payton is helping other pugs and their families.  So please consider contacting Dr. Greer (PDE Research Information) or another PDE researcher to discuss options.  Note that it is crucial to have their body refrigerated, NOT frozen, if you are waiting for further instructions. 

For those of you who are wondering what you can do in the fight against PDE, consider some of the following suggestions.

Share.  Raising awareness of this disease is crucial.  Even some pug owners have never heard of PDE, so talk to your pug friends about it.  Tell them about this blog.
Adopt.  Consider giving a rescued pug or other shelter animal a home, rather than purchasing a puppy.  There are certainly reputable breeders that test for PDE, but adopting ensures that you have not supported a puppy mill.  Not only will you have a pet that is so appreciative for a second chance at a good life with a loving family, but older dogs are less likely to develop PDE.
Test.  If you breed pugs, please be responsible and test prospective mates in hopes of eliminating the disease in future generations.  UC Davis and Dr. Kimberly Greer developed a susceptibility test (http://www.vgl.ucdavis.edu/services/PDE.php).
Donate.  Monetary donations are always welcomed for PDE research too.  Sometimes the grants and university funding doesn’t cover the medical and logistical costs of helping families who choose to donate samples after their beloved pet passes. (PDE Research Information)

I hope this information has helped.  There has been much progress made in the research and treatment of this nasty disease, and I look forward to the day when I can write about even more good news, perhaps a future cure and prevention!

Love,
Christy (and angel Payton in spirit)

6 comments:

tubby3pug said...

Pde has always been my biggest fear. I'm relieved there a test and that many breeders are using it
Retro rover

Tweedles -- that's me said...

We always have fear it too.
Thank you for this Christy!
love
tweedles

Idaho PugRanch said...

We so admire the love you shared with Payton and your continued dedication to fighting this disease
hugs
Mr Bailey, Hazel & Mabel

Southern Fried Pugs said...

Thank you for continuing to share this information. We hope you all are doing well.

Laura Drago said...

Mi primer Pug vivió solo 9 meses por esta maldita enfermedad!!!!tenía 5 meses y medio cuando se la detectaron; la luchamos un tiempo más pero el triste desenlace fue inevitable y fue muy desgastante verlo como se deterioraba cada día. Nunca olvidaré a mi cachorrín precioso al que pude disfrutar tan poco tiempo!!! Ahora tengo otros 4 Pugs pero ninguno con la enfermedad afortunadamente!!!

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