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Old 02-03-2006, 11:04 PM   #1
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Default Necrotizing Encephalitis or GME

We have posted this in response to another thread a few weeks ago but decided to start another link in case some of you may be going through the same experience we have been living with for over 8 months. This is the long version so please bear with us.

We have a 2-1/2 year old little girl who has been battling a life ending disease. Her neurologist believes she may have necrotizing encephalitis or GME (Granulomatous Meningoencephalitis). Basically, she has an infection in her brain that is spreading and terminal. There is no known cause or cure.


It all started on Mothers Day, 2005 when she had a cluster of seizures for the first time. Test after tests came back negative for anything our family vet thought might be causing the seizures so he referred us to a veterinary neurologist for an MRI and spinal tap. The MRI did not look good. Even to our untrained eyes, we could clearly see something was wrong. The neurologist gave us little hope and told us to be prepared to lose her in a few weeks, if she was strong maybe a month. He put her on prednisone to suppress the inflammation in her little tiny brain and potassium bromide to control her seizures. She was a true terrier, full of energy and attacking her toys like a true ratter. Soon she lost interest in toys, began to spend more and more time sleeping. Next she couldn’t jump up on the sofa, then slowly started to loose strength to a point she couldn’t stand up.

We reached out to various university veterinary schools to see if there were any doctors doing research on this disease, researched the net for any information useful to help her.

We don’t have any answers but we believe the changes we made in her diet and keeping a positive attitude around her has helped her. The 2-week death sentence is long past and after declining the suggestion to start chemotherapy we started to reduce the prednisone. She can now stand and run. She has beaten this disease for 8 months to date. Jewel is a TERRIER. She is tenacious and is not giving up. We know she will never recover to who she was.

We just want to let anyone else fighting the same battle to not give up. Feel free to PM us with questions. We want to share with you our experience, help you with the emotional rollercoaster and just be here for you and your baby.
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Old 02-04-2006, 12:07 AM   #2
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Cry I'm So Sorry!

I have not experienced what you are going through, But you will be in our Thoughts and Prayers.
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Old 02-04-2006, 12:09 AM   #3
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Thank you so much for sharing your inspirational story about your little girl. Do they know what causes this?
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Old 02-04-2006, 12:22 AM   #4
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One of the teaching doctor at UC Davis is applying for a grant to research the disease. They don't even know what causes it. The doctor there suspect it could be viral, bacterial or genetic. The breed with most cases reported are Pugs, and less than 1% of AKC registered Pugs has been diagnosed with it so it's a pretty rare disease. The only way they can determine exactly what it is, is by doing a biopsy of the brain (yikes! Never!) or by an autopsy if the body is donated for research.

Yeah it pretty much stinks!

Thanks for your encouragement and prayers!
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Old 02-04-2006, 03:34 AM   #5
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How awful for you and that little angel...I'm so sorry to hear this and wish you all the very best....maybe she'll get her miracle and beat the odds ? you sound like you're doing everything you can & what a little trooper she is to be still active and playing.....

I'm so sorry.....but your positive thinking may be just what she's needing...
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Old 02-04-2006, 08:56 PM   #6
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Dan and Corinne -- I am so very sorry for you and your Yorkie baby. I know first hand how heart breaking it is to go through something like what you are experiencing.

It all started on Mothers Day, 2005 when she had a cluster of seizures for the first time. Test after tests came back negative for anything our family vet thought might be causing the seizures so he referred us to a veterinary neurologist for an MRI and spinal tap. The MRI did not look good. Even to our untrained eyes, we could clearly see something was wrong. The neurologist gave us little hope and told us to be prepared to lose her in a few weeks, if she was strong maybe a month. He put her on prednisone to suppress the inflammation in her little tiny brain and potassium bromide to control her seizures. She was a true terrier, full of energy and attacking her toys like a true ratter. Soon she lost interest in toys, began to spend more and more time sleeping. Next she couldn’t jump up on the sofa, then slowly started to loose strength to a point she couldn’t stand up.

I went through something similar with my first Yorkie, Laciebug, she never had seizures, she started walking "funny". At first we thought it was a spinal problem. So my wonderful vet referred us to the UGA Veternary Hospital. Within about 3 minutes the University Vet said he thought it was neurological and suggested a CAT scan. The scan showed leisions in the lining of her brain -- I don't know the name of the condition, only that it was a type of encephalitis so rare that it is almost never discovered in a living dog, only found in a necropsy. The university vets had only seen a couple of cases and my local vet had never seen a live dog with the condition. I was sent home with 2 weeks of meds and told to go to my regular vet for follow up (the university vet did not expect her to live to take all of her 2 weeks worth of meds). She was on prednisone for the swelling and periodically other meds for symptoms. Each time I took her to visit Doc I would ask him, "Doc, is it time?" and every time Dog would give me the same answer, "Cindy, listen with your heart and she will tell you." She lived for over three years -- what a brave, loving soul my little Laciebug was.
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Old 02-04-2006, 08:56 PM   #7
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Good luck, keeping the three of you in my thoughts and prayers.
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Old 02-04-2006, 09:07 PM   #8
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Cindy~

I never knew the story of your laciebug and it was so touching. I am so sorry for your baby but she was definitely a fighter to live so long with such an awful diagnosis.

I am praying for this baby.....
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Old 02-04-2006, 09:14 PM   #9
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Thank you for sharing that- baby and parents are truely an inspiration.

Hugs to you and your little one!
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Old 02-04-2006, 10:04 PM   #10
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Quote:
Originally Posted by chattiesmom
Dan and Corinne -- I am so very sorry for you and your Yorkie baby. I know first hand how heart breaking it is to go through something like what you are experiencing.
Thank you for sharing Laciebug's experiance with us. I thank each of you for your care, concerns and good wishes . Love & kiss your babies evey opportunity you get. The time our babies has with us is so short even when they live a full life.

Each of us worry and harbor fear in our hearts when our babies are not well, but there is a huge difference when your doctor doesn't even know what to do and you're told at each appointment "I can't believe she is still doing well". All they can offer is to keep her "comfortable" and monitor her bloodwork.

So, I want to send a heartfelt "Thank you" to Chatties Mom. You have given us peace and hope. To hear from another person who had lived through this terrible disease makes us feel like we are not fighting blind. To hear Laciebug beat the odds for 3 years is priceless.

Was Laciebug on prednisone during the entire time or was she weaned off and get other medications? I'd like to hear more about what you and your doctor did for her to see if there is more we could be doing for Jewel.

Thank you all!
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Old 02-05-2006, 05:47 AM   #11
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Laciebug remained on Prednisone for the duration of her illness. The Prednisone was to help relieve swelling. Other symptoms were treated symptomatically (please forgive my crummy spelling). She would have weeks and weeks of pretty much normal doggie life and then we would have periods of time when she was in a "fog". One of the few great blessings we had during this time was that she never appeared to be in pain and our vet felt certain that she was not suffering. I'm sure that the outcome would have been considerably different had I known that she was hurting.

Our biggest fear during her "goofy" times was that she would get disorientated and wander away.

Dan and Corinne -- this memory of Lacie just came to mind -- one of Lacie's greatest joys was to chase the barn cats. She was a real "fighter" and loved nothing better than to run down to the barn (it is about 100 feet from the house) and tangle with the cats. Any time she thought about the cats, she would run as fast as her little legs would carry her and jump into a pile (at the time there were six cats that were charged with the duty of keeping the barn free from mice -- and to entertain Lacie). The cats seemed to understand, they never ever hurt Lacie and allowed Lacie her one true joy in life. I always had the fear that she would get hurt, but somehow, for us, the quality of her life was always more important than the quantity, so I could not deprive her of her one true joy.
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Old 02-09-2006, 12:47 AM   #12
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Default Jewel Update

Jewel got her results from her blood test taken on Monday. Mostly it's all good. No damage to her liver or kindeys, Bile Acid is normal, Thyroid is improving and her Bromide level is stable. Her eyes shows no sign of blindness either. Yippy!

Our wonderful doctor said he can see improvements in her reflexes. The one thing that is puzzling him is her chronic circling. She just can't stop walking in circles. I can't walk her on a leash anymore because she will keep circling. But she never gets dizzy.

The doc is going to do some research to see if he can help curb it a little bit.

She's had 2 seizures last week but that was the first time since early December so we are thrilled.
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Old 02-09-2006, 06:01 AM   #13
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This is such a terrible disease. I have not ever experienced it myself. But I hope that more funds become available for research. Good luck with your baby! I am glad to hear her tests came back better! I will keep her, and your family in my prayers. God bless you for making sure she gets the best care possible!
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Old 02-13-2006, 11:57 PM   #14
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Star Another Jewel Update

It's been about a month since Jewel cut back on her prednisone to half her previous dosage. I'm happy to report she is getting stronger and her legs only slides out when she first wakes up. She is still doing the chronic circling but the best news is she is getting her spunk back and doesn't seem to be in fog as much.

She did have a good size seizure today but the ice pack I put on her lower back seemed to help her recover more quickly.

She will have another set of blood work next week. We may try acupuncture to see if it will help curb her urge to circle.

Keep on Sending the Happy Thoughts! It works!
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Old 02-14-2006, 12:40 AM   #15
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Quote:
Originally Posted by Dan & Corinne
It's been about a month since Jewel cut back on her prednisone to half her previous dosage. I'm happy to report she is getting stronger and her legs only slides out when she first wakes up. She is still doing the chronic circling but the best news is she is getting her spunk back and doesn't seem to be in fog as much.

She did have a good size seizure today but the ice pack I put on her lower back seemed to help her recover more quickly.

She will have another set of blood work next week. We may try acupuncture to see if it will help curb her urge to circle.

Keep on Sending the Happy Thoughts! It works!
I just found this thread.

My prayers, happy thought, and love go out to all of you.

Your Yorkie is definitely a fighter, and I can tell you are too.

Please keep us posted on how she is doing.

I am thinking positive.

Kate
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