Thursday, May 12, 2011

Payton’s battle with PDE…after the diagnosis

Christy here. I just want to thank everyone for their kind comments on my previous posts.  Before continuing with the details, I feel a warning and another disclaimer is in order. As you may guess, Payton’s fight has not always been easy, and cramming a bunch of issues from the last 5 years into a page or so of text makes it seem even more intense. But if you think about it, this only makes her survival even more of a miracle. We know there will be a time when it will be in her best interest to say goodbye, but we know without a shadow of a doubt (and Dr. Podell agrees) that now is definitely not that time. Payton isn’t just living, she is thriving! She has such a zeal for life and long stretches of “normal” pug life, so please remember that the moral of this story is hope and overcoming obstacles.

If you haven't read the previous posts this series [diagnosis and medication/treatment], please check them out.  Ok, getting back to Payton’s story…I left off bringing her home after seeing Dr. Podell for the first time. 

It was great having her home. We had hope that we could take on this nasty disease, but as Dr. Podell warned, it was going to take a while for her little body to get used to the drugs. I’d say for about the next 3 months she was very lethargic, sleeping almost all the time. She would grab a toy and want to play, but ended up just taking it to bed realizing that she didn’t have the energy. Then slowly she began to get her spunk back! She wasn’t the high octane puppy any more, she had mellowed and slowed down, but the expressive, loving personality was still there. In fact, I don’t think there’s been a time in the last 5 years that Payton hasn’t shown a drive to fight and live. She is my hero.

Since her diagnosis, she has had only an average of 1 relapse (of varying severity) per year. The first one was the worst. Only about 6 months into treatment, she started the stereotypical PDE circling and then started having cluster seizures (ones that start and stop quickly). After that, things were going so well I thought we’d never have to use that Diazapam (aka valium) stuff again. One of the mildest relapses was a constant twitching of her left back leg. Throughout all of these problems, Dr. Podell has been there for us and adjusted her medications to successfully fend off the disease. In fact, she has such good stretches in-between issues, that it’s easy to forget that she’s sick.

Over time the disease has left lasting scars, some of which we deal with daily. Her left side is gimpy having taken the brunt of the seizures. She is blind and deaf on her left side (although her right side isn’t much better), and her left legs have nerve damage like Walter the Miracle Pug. In fact, thanks to Walter's mom, Heather, we are looking into making our own Pug Ugg. Payton's low/compromised immune system makes her prone to infection and cancer, and she has become a very slow healer. She’s had a handful of bladder infections and one nasty fever ridden sinus infection over the years, and it took a lot longer for an eye scratch/lesion to heal. Our vets always say, it should be nothing, but with Payton, we better check into it further.

She still goes through periods of shedding, but not as often as most pugs, and her hair doesn’t grow back at the same rate so there are long periods where she is fairly bald. As a result of the buildup of the drugs in her system, she developed calcium deposits on her skin that look like scabby blisters. At first, they flared up like wildfire and had to be treated with nasty smelling DMSO (something used at U of I in the horse stables), but fortunately those have kinda gone into remission. Also because of the drugs, she had to have her gall bladder removed. Boy was that scary! Luckily we were already in Chicago for one of her routine, quarterly check-ups. Payton didn’t show any signs until it was about to burst, so we caught it just in time. Told you she was tough! Anesthesia is always a risk with her, so it was not fun waiting for the results of her surgery. At the same time, Payton had a weird mole-like lesion on her side that we had removed and analyzed. Turns out she developed a rare skin cancer.

This pic shows off Payton's bald chest and some of the calcium "scabs" on her belly

Here's what the skin cancer looked like - the red ring only lasted a few days and part of the "mole" fell off before the biopsy.
 Despite all of these issues, for the first 3 years since her diagnosis, we were extremely lucky that Payton did not have seizures in between relapses - which we think is rare. On any given day, she looks and acts much like any other pug. However, about 1 ½ to 2 years ago, she started having single seizures that appear to be triggered by the extreme cold and by going “outside” as we call it. We have since purchased an indoor Porch Potty for use in the garage during cold months and nights. This has helped a great deal, but she still has these “bathroom” seizures once in a while. There is so much of the brain that is a mystery, so Dr. Podell thinks that something about the act of "going" (or even thinking about it) triggers or activates the part of her brain affected by the disease.

Around the same time as the onset of these “bathroom” seizures, Payton had a seizure that affected her right side. This had never happened before. We wondered if the disease had spread to the other side of her brain…was that even possible? A totally unrelated (non-PDE) incident on one of our trips up to Chicago would shed some light. For the first time after all these years of being sick, this was the first time that Payton didn’t want her food and she began to shiver violently in pain. We didn’t know what was wrong, and X-Rays weren’t conclusive. So, Dr. Podell had to perform another MRI. He took the opportunity to take another look at her brain. Turns out Payton developed a bulging disk in her back (the reason she was in pain). Since the surgical fix for a bulging disk was not an option for Payton (surgery itself and the risk of infection are too great), we had to hope it would fix itself. We had to restrict Payton’s activity and she is no longer allowed on the furniture, but it worked! And as for the PDE, well, the MRI showed it had indeed spread to both sides of her brain. But so far, it has not had additional impacts on Payton’s life. In fact, oddly enough, it’s been in these last few years that Payton’s personality and energy has come back more than ever! She wants to play a lot more and is always up for an adventure or another vacation to Chicago.

Whew! I think I covered all the relevant events. Hopefully this has helped you all to get a feel for what Payton’s battle with PDE has been/is like. As warned, I talked about a lot of serious issues, so I want to remind you that Payton has a great quality of life and is happy – despite the disease.

The great news is that all of these relapses and related issues probably add up to only a couple of weeks of “bad” days out of nearly 5 years. Again, she’s as happy, playful, and loving as any pug you’d meet. In fact, you’d be hard-pressed to notice she’s at all sick if you met her (well, aside from the balding spots!). So if you ever find yourself in a similar situation (and we hope that you do not!), don’t give up. With the right treatment, patience, love, and prayer, you could enjoy a much longer, quality life with your baby than you might think.

If you have any questions, please feel free to ask them in the comments section, or contact us privately via email. Although we are here to shed some light on this disease and answer any questions you may have about our experiences, please, please make sure to consult your own vet if you have fears that you or some dog you may know is ill.

I’ll be back with one more post next week. I’d like to continue “keeping it real” and talk about what a dramatic impact this has had on my husband and I. Payton’s PDE diagnosis has changed our lives in so many ways.

Christy (and Payton)


Noodles said...

Hi Christy and Payton
I am so excited to get more and more proof about how AWESOME I think Payton is. She is more than a survivor - she is an INSPIRATION!
Love Noodles

Anonymous said...

Christy and Payton
My heart was in my throat while reading this whole post. I don't even want to imagine going through such a scary, emotional rollercoaster of an experience.
Payton truely is a special pug and a real fighter. She is so lucky to have such a devoted and loving family who are willing to go the distance where others would have given up long ago.
Shay and Sabrina

Two Pugs in a Pod said...

I can't imagine how much strength it must have taken for you to go through all this with your baby Payton, although I can absolutely identify with how special, and how WORTH IT, she must be to you. I would go to the end of the earth for my two little ones. I wish, one day, we could see Payton through to a CURE for PDE. We're all in your corner, for sure.

Sequoia & Petunia & Emma said...

Payton truly is a fighter and so very lucky to have you guys as her parents.

Anonymous said...

My husband and I lost a fur child to PDE 11 years ago. All of those quirky little things Dale used to do (tail chasing, licking) were seizures. We thought it was just Dale. His first grand mal seizure was 3 days after his 2nd birthday. The vet prescribed meds for seizures but it was unsuccessful. Two days later his seizures were so severe it would have been cruel to continue treatment. So our Dale left us to be a healthy boy on the other side of the rainbow bridge. Payton is blessed to have you as a Mom. I pray you are victorious and Payton has a long fun filled life.

Winston Wilbur said...

Payton and you are truly an example of dedicated, hope and strong will. At 8 she is an example that life doesn't have to stop because of a devestating illness. You carry on to the end living life to it's fullest. We can't wait to read more of her daily adventures as she continues to fight and never give up.

Anonymous said...

Hi, how are you? It's nice to see your story. Payton is such an inspiration. My ill pug Geordie was just diagnosed with pde three days ago. With high dose steroids, phenobarbital, and low dose chemo she is doing better against all odds. She's a strong little girl. I was just wondering if you could answer more of my questions. We are bringing her home tomorrow (thank god) but I know it's not an easy road ahead. We just want to give her the best life possible. She is a little lethargic from her phenobarbital but is not in pain and is walking and acting great. It just breaks my heart that she has had to go through this. Please email me when you get a chance.
Thank you

Anonymous said...

I stumbled upon your blog while researching more on PDE. My baby boy Prince Percy, was diagnosed 14 months ago, just before his first birthday, and was having great difficulty and the vet believed he would only have a few weeks. He proved them wrong! Not only is he still here, but he is doing great! He has bad days and they break my heart. He is on steroids, which in turn has done some damage to his liver. I found your story as a form of hope!!! Hope that we will be blessed with him in our lives for years to come. Thank you for sharing your story.

chloe said...

my one year old pug had a really bad seizure and the vet ran every test apart from the MRI and she was clear for everything and we didnt run the mri because it was too expensive and she had the symptoms of PDE so she has been given medicine for PDE and all the research i have reaad says she wont have long. I have cried non stop for these past twp days. my baby is now out of hospital and seems so depressed. i think she is blind and she cant walk very well. im hoping this will go as she gets used to the drugs. i feel like she is so sad and lost and will never be her normal playful self again. it makes me so sad to watch her like this and i wonder if its best to put her to sleep but reading this gives me hope. shes only a year old and shes my baby and i love her more than anything but i just dont know what to do i just want her to be happy but it doesnt look like thats ever going to happen

Prince Arnold said...

Hello my son is 8 years old and had is first seizure at 2 years he was diagnosed with generalized epilepsy at 5 years old has been on medication since until doctor got him off and on he broke out on a seizure lasting almost 10 minutes he was put back on medication and the meds even increased ever since were back to his moody ness, tantrums, waking up every morning struggling and at night when asleep his body is constantly twitching mostly from his upper body, he had another big seizure and were still at it with all these moods. we tried different meds nothing was really working. I never stopped battling it, I’m open and supportive when looking at alternative and procedures. I saw someone comment on a website. Her daughter had seizure and she used a herbal medicine for her daughter seizure and she was seizure free. I’m glad that it was possible. I was ready to try anything that we help my son, i had a conversation with the Dr . I decided try the herbal medicine, I purchased the medicine. my son started taking the medicine. I was shocked to see my son improve, he stop having seizures. his more active and no more seizure. I’m so happy to see my son seizure free. Do as much google research as you can and do not give up on trying. If there is improvement continue, if there is no improvement stop and try something else Everyone is different. thank God my son is seizure free. you can email him on