# Gme/nme??



## Muffin's Mama (Mar 3, 2012)

Is anyone else dealing with GME/NME right now or have you had experience with it in the past? Lulu was diagnosed in Sep last year. She's been on prednisone since then. She was doing remarkably well and then a month ago she started having trouble walking so her prednisone dose was increased. About 3 weeks ago she had 2 seizures (first ones ever) and was prescribed phenobarbitol. The seizures stopped until yesterday. She's had 4 since then. Our vet told us to increase her dose of pheno, which we did. I guess anyone who'd dealt with this disease knows the feelings we have. We're fighting a losing battle and it's heartbreaking.

I want to take one day at a time with Lulu and enjoy the time we have with her, but I can't help wondering how this will play out. I try to keep my mind on today so I don't dread the days to come. Another thing I wonder is how we'll know when it's time to stop fighting and let her go. My experience has been that they let you know and I guess that will be the case with our Lulu. 

Any advice or words of wisdom? Thank you so much.
Jane


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## pippersmom (May 21, 2012)

I am so sorry you and Lulu are going through this. My heart is breaking for you.


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## kd1212 (Nov 5, 2013)

I had the seizure issue with my Chihuahua who passed away last May at 17 years, one month and 20 days old. He started getting seizures in 2008. He had a cluster of them, we did an MRI, which was clear, he was on Pheno for 6 months, but seizure free. He remained seizure free until 2012. He started getting grand mals periodically. He was not on Pheno, but something else that was less druggy (he had an awful reaction to the pheno--very groggy--could hardly stand up)--I'm so sorry that I can't recall the name of the other drug at this moment--I think it was with an L and I was able to get it at CVS or Costco. I completely empathize with you--it is the most frightening thing to go through. if you have any questions or want to talk let me know. Kim


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## Piccolina (Dec 25, 2009)

Hi Jane,

I had a doggie who had GME, she however didn't died from GME but she choked on a treat 2 years ago.

There is a treatment for GME but time is of the essence and you have to act fast.

Please read my thread "We flew from California to Boston to meet Dr. Sisson".

Also there is a web site: gmedogs.freeforums.org which will help answer a lot of your questions.

There is hope for Lulu. Don't despaire:wub:





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## kd1212 (Nov 5, 2013)

Should have mentioned that ultimately the cause of death was unfortunately GME, however, he was never diagnosed with it with the seizure situation.


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## KAG (Jun 1, 2006)

Hi Jane, 
Yes, unfortunately a lot of us know about the horrors of GME/NME. Here's Sammy's link to her thread:

http://spoiledmaltese.com/forum/64-...we-flew-california-boston-meet-dr-sisson.html

I lost 2 babies to GME. I hope I give you some hope though, because since my girls deaths, there is so much that has changed for the better. 

Please know my heart and prayers are with you and Lulu.
Xoxoxo xoxoxo

Kim, I'm so sorry about the loss of your baby. 
Xoxoxoxoxo

Oops, almost forgot. FU GME/NME


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## Piccolina (Dec 25, 2009)

For whatever reason, on my post listing all the medications, the Prednisolone schedule of Dr. Sisson's protocol was not included, so here it is:


1 mg x lb every 12 hours for 4 days
0.5 mg x lb every 12 hours for 17 days
0.5 mg x lb every 24 hours for 35 days
0.25 mg x lb every 24 hours for 60 days
0.25 mg x lb every 48 hours for 60 days




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## KAG (Jun 1, 2006)

Love you, Sammy.
Xoxoxoxoxoo


Jane, here is what is happening medically, research and development wise. My dear friend Pam, whom is a member, user name pammy4501, lost her beautiful Lola to NME. Pam and the wonderful people at Morris Animal Hospital are so involved to get to the bottom of this horror. 
Hope this works:

Morris Animal Foundation


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## kd1212 (Nov 5, 2013)

KAG said:


> Hi Jane,
> Yes, unfortunately a lot of us know about the horrors of GME/NME. Here's Sammy's link to her thread:
> 
> http://spoiledmaltese.com/forum/64-...we-flew-california-boston-meet-dr-sisson.html
> ...


Thanks Kerry--this Thursday he would have been 18 and last week marked 10 months--difficult couple of weeks. I'm glad I've got Tyler for a slight distraction! :wub:


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## maggieh (Dec 16, 2007)

Jane, I'm so very sorry you're dealing with this. Unfortunately, a number of our members have experience with it, and you've been given some great resources. All the best to you.


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## pammy4501 (Aug 8, 2007)

First and foremost, if you haven't already, you need a consult with a vet neurologist. The treatment for GME/NME is more complex than just prednisone and anti seizure drugs. This is an auto immune disease and needs to be treated as such. You need Immunosuppressive drugs like cytosar or lomustine. If you aren't on one of these drugs, you are not treating the underlying disease. I see that you live in Az. If you are interested you can P M me and I will provide you with a list of neurologists in your area. i had a dog named Lola that lived with NME for two years before she died. Good luck. There are lots of threads on SM re: NMW/GME if you search that term. Good luck to you and your pup.


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## pammy4501 (Aug 8, 2007)

This is from a brochure that Jackie (JMM) and I produced a couple of years ago, before the National Specialty Show. Just for informational purposes only. The study referenced has been completed. 

Maltese as a breed appear to be pre-disposed to certain types of encephalitis. It is suspected that there is a genetic component to these diseases. In this handout we will talk about 2 common types of encephalitis in Maltese: GME and NME. Then we will discuss how you can help with current research into the potential hereditary components of these diseases 
Important Terms: 
Encephalitis is a general term for in-flammatory conditions affecting the brain. 
Meningitis is a general term for inflammatory conditions affecting the covers of the brain and spinal cord. 
MRI refers to a non-invasive imaging scan. For animals, the scan requires they be placed under a general anes-thetic to insure the animal remains per-fectly still. Typically when a veterinarian is expecting to diagnose a form of en-cephalitis, they request views or the brain and cervical spinal cord. 
CSF Tap refers to sampling of some of the fluid near the spinal cord. This is often done on the neck or back of the dog. This test also requires anesthesia. 
Necropsy is an autopsy (examination after death) on an animal. 
What is GME? 
GME stands for Granulomatous Meningoencephalomyelitis. The name describes the type of inflammatory cells and the parts of the body it can affect. Symptoms of GME can vary and be vague. Some symptoms can include back pain, neck pain, lethargy, de-creased appetite, seizures, difficulty walking, circling, and vision problems. GME is diagnosed by MRI and CSF tap under the supervision of a veterinary neurologist. Based upon the appear-ance of lesions on the MRI and the types of cells found on the CSF tap, a presumptive diagnosis of GME can be made. A definitive diagnosis would re-quire biopsy of the lesions. This is only done after the death of a patient at the necropsy. 
What are the treatment options and prognosis for dogs diag-nosed with GME? 
The most successful treatment options for GME are a combination of immune-suppressive steroids and chemothera-peutic agents. The precise combina-tions and dosages will vary from dog to dog. 
GME is typically considered fatal. The goal of treatment is to place the dog in a remission (a period of time where the dog is free of symptoms). With newer therapies, many dogs survive months or even a year a more. This is a massive leap from 10 years ago when dogs were typically given weeks to months on steroid therapy alone. 
The individual prognosis of a dog pre-sumed to have GME will depend on their lesions (MRI results) and response to treatment. 
What is NME? 
NME stands for Necrotizing Meningoencephalitis. The name refers to necrotic (dying) lesions in the central nervous system. NME is typically considered more se-vere than GME. It has a quick, severe onset of symptoms like GME (see above). Like GME, NME is presumptively diag-noses by MRI and CSF tap under the supervision of a veterinary neurologist. The most common difference between the two illnesses on the tests is the appearance of the lesions in the brain on the MRI. Like GME, NME can only be definitively diagnosed at necropsy. 
What are the treatment options and prognosis for dogs diag-nosed with NME? 
Treatment protocols are similar to those for dogs with GME. Some veteri-narians will be even more aggressive with their treatment if they suspect NME. NME is considered fatal, with a shorter lifespan after diagnosis than GME. Most dogs survive weeks to months after diagnosis. 
What should I do if I am con-cerned my Maltese has a neuro-logical disorder? 
Talk to your regular veterinarian first. Based upon your dog’s presentation they can help you decide if your dog needs to have a consultation with a veterinarian who is board-certified in neurology. 
Veterinary neurologists can be found in private practice (often near big cities) or at veterinary schools throughout the United States. Your local veterinarian can refer you to the closes neurologist nearby. 
Time is of the essence! Don’t wait if you are concerned that your dog may have neurological symptoms (such as trouble walking, seizures, back or neck pain, etc.). Call your veterinarian or closest emergency clinic and seek treatment immediately. Time is of the essence with these diseases. Maltese are also prone to epilepsy, hydrocephalus, and Chiari Malformation. Without proper diagnostics, your vet will not be able to distinguish what disease process is present. While diagnostics can be expensive, they are necessary. 
What are the treatment options and prognosis for dogs diag-nosed with NME? 
Treatment protocols are similar to those for dogs with GME. Some veteri-narians will be even more aggressive with their treatment if they suspect NME. NME is considered fatal, with a shorter lifespan after diagnosis than GME. Most dogs survive weeks to months after diagnosis. 
What should I do if I am con-cerned my Maltese has a neuro-logical disorder? 
Talk to your regular veterinarian first. Based upon your dog’s presentation they can help you decide if your dog needs to have a consultation with a veterinarian who is board-certified in neurology. 
Veterinary neurologists can be found in private practice (often near big cities) or at veterinary schools throughout the United States. Your local veterinarian can refer you to the closes neurologist nearby. 
Time is of the essence! Don’t wait if you are concerned that your dog may have neurological symptoms (such as trouble walking, seizures, back or neck pain, etc.). Call your veterinarian or closest emergency clinic and seek treatment immediately. Time is of the essence with these diseases. Maltese are also prone to epilepsy, hydrocephalus, and Chiari Malforma-tion. Without proper diagnostics, your vet will not be able to distinguish what disease process is present. While diag-nostics can be expensive, they are nec-essary. 
How Can You Help? 
How can I help with research into the genetic components of GME and NME in Maltese? 
The University of Georgia, Dr. Scott Schatzberg, Dr. Renee Barber, and a team of other researchers are currently collect-ing samples of normal and affected Mal-tese dogs to research potential genetic markers for these types of encephalitis. Maltese dogs that have died from pre-sumed GME or NME can have their brain and DNA submitted to the study. Owners will receive a necropsy report on the brain with a definitive diagnosis. Maltese dogs that are live and presumed affected by GME and NME can submit their DNA and test results to be part of the study. There will be no results given to owners. Maltese dogs that are live and normal, age 5-12, can submit their DNA as a "normal" for the study. The study needs lots of normal dogs! At AMA Nationals we have special permission to sample 25 nor-mal dogs regardless of age. See us as the table if you are interested! Submission forms will be available at the in-formation table at Nationals and on the AMA website: 

(American Maltese Association) 

Questions: 
Will the study share my informa-tion or my dog’s information? 
Nope! Unless you submit a sample of necropsy, there will be no information returned to you. All submissions remain confidential. Nobody will know your dog partici-pated. No information or result with your dog’s name will be published. Even request for sampling material remains confidential. Nobody will know your name or that you re-quested DNA swabs or information. If you have questions or need to re-quest DNA swabs, please contact Jackie Nelson ([email protected]) or via phone at XXX XXX XXXX.
Donations for this research may be made to the Morris Animal Foundation: 
Morris Animal Foundation


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## Muffin's Mama (Mar 3, 2012)

Thank you for all of your responses and information. Lulu is under the care of a neurologist and has been for almost all of her life. She's had a lot of issues --AA Luxation, 2 spine surgeries, 6 months in a neck brace, paralysis on her left side. When she was diagnosed with encephalitis we were told about our options and I believe we're doing the right course of treatment for her in this case. Had she been a perfectly healthy dog to start with, we would probably pursue more aggressive treatment. We all have to make these decisions for ourselves and each situation is different. 

I guess the reason I started this thread was just to reach out and not feel so alone going through this. Our life has been centered around Lulu and her health problems for the past year and a half. Some of my friends understand, others shake their heads, so I don't talk to them about it. I knew you all would listen and you did...so thanks. 
Jane


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## eiksaa (Jun 8, 2012)

So sorry to hear about Lulu. Hoping the drugs and steroids give her relief. 


Sent from Petguide.com App


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## Furbabies mom (Jul 25, 2011)

Praying that the treatment helps Lulu. Gee she's been through so much in her life.


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## pammy4501 (Aug 8, 2007)

Muffin's Mama said:


> Thank you for all of your responses and information. Lulu is under the care of a neurologist and has been for almost all of her life. She's had a lot of issues --AA Luxation, 2 spine surgeries, 6 months in a neck brace, paralysis on her left side. When she was diagnosed with encephalitis we were told about our options and I believe we're doing the right course of treatment for her in this case. Had she been a perfectly healthy dog to start with, we would probably pursue more aggressive treatment. We all have to make these decisions for ourselves and each situation is different.
> 
> I guess the reason I started this thread was just to reach out and not feel so alone going through this. Our life has been centered around Lulu and her health problems for the past year and a half. Some of my friends understand, others shake their heads, so I don't talk to them about it. I knew you all would listen and you did...so thanks.
> Jane


Well, I can certainly empathize with your plight. I had my GME dog in treatment for two years. And you are right, most people didn't understand it. But she was the dog of my heart. I had to try to help her. You are not alone. And at the end of the day, you must make the best decisions for her. Just curious, where did she come from? Have you told the breeder about all of her problems? Or was she a rescue dog? She certainly has had some serious issues poor dear.


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## Bailey&Me (Mar 8, 2010)

Oh, I'm so sorry to hear of Lulu's diagnosis. Sending you prayers.


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