The Faces of GME/NME

If you would like to learn more about GME/NME, click here.

 

If you have a dog with GME/NME and are looking for support groups, check out the NewGME group on Yahoo and the new GMEDOGS.

 

 

Annabelle Weaver

Feb 2007 - June 2011

Annabelle's Story

 

 

Chip Chisholm

2 June 2005 19 November 2010

          A Letter from Mom

 

 

Zefi Giles

Zefi was diagnosed with GME in September of 2007.  She has been under treatment with Dr. Sisson (Angell Animal Medical Center in Boston) since shortly thereafter.  I am happy to say she has been off  prednisone since last October with no relapses.  She is still on Leflunomide until April but then she comes off all meds.  She is fortunate in that she has never had a relapse as we decreased the prednisone and now seems totally normal except for maybe a slight vision impairment.
 

 

Hunter Fern-King

Ch Ecstasy's Thrill of the Wild/Hunter diagnosed Oct 2006 with GME has been med free since May 2008

 

 

 

Lilly Fern-King

Ecstasy's Against All Odds/Lilly diagnosed with GME in June 2008

Lilly lost her battle with GME in Nov 2008.

 

 

Carleigh Cowgill

Carleigh is a long-haired dachshund who was diagnosed with focal GME.  She had vaccination boosters at 16 months (2/04), onset of symptoms that evening. Her symptons included wall-hugging when she walked, urinated on bed, head tilt, and I forget what it's called, but when her hind leg was placed behind her, she left it there (and should have immediately returned it to normal position.  We went to regular vet next day, and started her on a low-dose prednisone. When she did not respond, her regular vet referred us to neurologist.   It seems there was a couple week wait before we could get in. They did MRI and CT scan which confirmed focal GME. She was put on high dose of prednisone and Imuran (anti-rejection med). During the time she was on the meds, she did get a terrible staph infection and lost a lot of hair on her back (which of course grew back). She became med-free 9/04. Her last visit with neurology was 12/04.   The veterinarian said Carleigh never reached 100 improvement.  She had back pain in 10/06 and neurology said the GME has caused her to age more than her chronological age. She'll still leave her back paw behind her on the above-referenced test and has a head tilt when tired, but otherwise, she's a healthy, playful dog. Neurology advised no vaccinations for the rest of her life.
 

 

 

Gidget Chassay

Gidget  has Necrotizing Encephalitis which I believe they call NME.  She was diagnosed on 9/11/08 by a CT Scan and Spinal Tap.  Gidget is a Yorkshire Terrier, was born on April 15, 2001 and she was the runt of the litter and weighs 3.5 lbs. 

We live in Olathe, KS (Kansas City Metro Area) and Gidget is seen by Dr. Brian Cellio the Neurologist at the Veterinary Specialty and Emergency Clinic (VSEC) in Overland Park, KS.  He consulted  with Dr. Allen Sisson of Boston and put Gidget on Dr. Sisson's protocol.  Gidget was on the following meds during her treatment:  Prednisone Daily, Leflunomide Daily, Atopica twice daily, and once a month she received a Cytrabine Shot.  She was weaned off the Prednisone on March 24, 2009.  Due to a severe respiratory infection and her blood cell counts, Gidget was taken off all meds on November 11, 2009. With the help of many dedicated doctors and nurses at the VSEC including an Internist Dr. Catherine Peace, Gidget was given antibiotics and oxygen therapy and she recovered from the infection and her blood counts are now all in normal range. She has remained off of all meds and is now in remission.

  When she was originally diagnosed over a week period she went totally blind, was shaking, walked in circles like she was drunk, had a limp left leg and by the end of the week could hardly walk.  When Dr. Cellio saw her as well as our regular vet, they both thought she would probably pass away in a week. 

 

She is our Christmas Miracle and I want others to know there is hope.  When she was diagnosed everything I read on the internet until I found the NewGME group said that she would die.  I couldn't accept that, so I prayed to God that he would help me find a way to save her, I researched the disease,  found the group and Dr. Sisson and we started the treatment.  We are so thankful to the NME Group, Dr. Sisson,  Dr.Cellio, Dr. Peace, and the rest of the staff at the VSEC  for saving Gidget.  Remission was the best Christmas present we could have ever received.

 

 

Kisa Hutchins

Kisa is a Siberian Husky who was born on March 1st, 2003.  She was diagnosed with GME on September 28th, 2006.  Her original symptoms were complete paralysis of the hindquarters, unresponsive pupils, and a head tilt.  Her treatment was Dr. Sisson's protocol - prednisone, lomustine, and cytarabine.

Kisa's initial treatment was high dose prednisone, tapered to zero over six months. Beginning in November 2006 she received one oral dose of lomustine per month for seven months. In March 2007 she also began receiving injections of cytarabine, 4 doses within a 48 hour period once per month, offset two weeks from the lomustine. She received her last lomustine dose in May 2007, and continued receiving cytarabine injections until October 2007.  At that point all medications were stopped.

Date Treatment began: 10/1/2006

Date Treatment ended: 10/15/2007

Kisa is in complete remission. She has no residual neurological deficits. Today, Kisa is completely healthy and shows no signs of ever having suffered from GME.  She speed walks with me at least 3 miles per day, goes on hikes, goes to the dog park where she has a dozen friends with whom she runs and wrestles. She has been off all medication for over a year, and has never shown the slightest sign of relapse. The only way in which she is different from a completely healthy dog is that she can never receive vaccines, other than the killed rabies virus, for the rest of her life.  Kisa is living proof that GME is not a death sentence, and it is not a disease that can merely be managed for awhile.  GME *can* be cured.

 

Bailey Bear Burrell

The Drive Home

Bailey Bear is my precious little six year old Maltese.  Healthy all of his life, I came home one day to find him spinning on my kitchen floor like a top, completely blind, and didn't know his foot from the food bowl.
 
When the GME diagnosis came, I didn't know what it was.  Researching it, I was devastated until I found the NewGMEdogs group.  Joining, I immediately began to follow the treatment of Dr. Allen Sisson in Boston, who has the best success rate for GME remission.  Without the people who are experienced in this disease on the site, I doubt Bailey would be here.  Across many miles, from many states, they have shared my happiness and my disappointment, offered advice and words of encouragement. 
 
Bailey is in his seventh month of battling this disease.  Until recently, he could have been the poster child for success, but a relapse occurred suddenly and at the moment, the future looks bleak for my little guy.  Miracles happen though and I'm hoping my Bailey can be one of them.  Whether treatment eventually works for Bailey or not, I encourage everyone to keep trying.  There are precious babies out there who have beat this.
 
Our journey has been long, but it's been filled with tremendous love and bonding.  I've considered it a true honor to help my brave little soldier as we've battled this disease together.

 

 

 

Tito Sartin

Tito lost his battle with GME on April 1st, 2008

 

 

Sophie Arnason

Sophie passed away of NME determined by necropsy.

 

 

Stormy Zulick

Born Jan 1, 2004
Diagnosed with GME: Nov 18 2004, symptoms started Nov 14, 2004
Stormy went to the Rainbow Bridge on Feb 24, 2007....Confirmed diagnosis of NME at necropsy.
 
Stormy was a healthy happy little girl who loved life.......She had a ZEST and Love that was TOUCHABLE...We got her when she was 9 months old and she was PERFECT......Sassy, beautiful, full of fun and she loved her brother and sister....The one day that she was not all those things  we knew something was wrong.....several tests and a few days later and still no answers.  We were referred to  North Carolina State University Vet School and it was there that Dr. McKillop told us the diagnosis of GME.  She had all the normal test, CT, spinal tap, additional bloodwork, and a neuro assessment.  I was devastated when they told us.  How, what, when and where.... were the only questions I could think of..   Then there was the infamous question "What Now' and Please Help........
For the next 15 months we learned what GME was and what we needed and how we needed to do it.  Stormy received wonderful care and was placed on a combination of medications to help.  Thankfully she responded and slowly she was more herself. I  was always amazed at how well she did, she did not look sick, or even act sick, she was a rock.  Stormy only had 1 very scary relapse but NCSU was able to get her through it and she never looked back.  We had tried many times to taper her prednisone but she would always shows signs of relapse and need to be put back on prednisone.  It was the combination of meds and love that allowed her to be happy, healthy and enjoy her life on earth with us. 

How blessed we were to have her, to be a part of her journey, and to receive the TOUCHABLE love she gave to us.  Stormy was the color in my life, she gave me so much love, and was so PERFECT....except for a disease called GME/NME.....We miss her everyday but we know that her fight continues for all GME/NME babies through the CREATE Fund. 

 

Kissie Hogan

We lost our Bunny, a Maltese, who was 14 years old in October 2007.  Within a few days of Bunny's death Kissie was acting strange.  She had her tail tucked, her head was down and not moving, she would not jump up or down from the sofa, and not even step down a 2 inch step from the porch to the outside.  We thought she was in mourning because of Bunny and also picking up vibes that we were upset.  After 4 days, we took her to the vet. Our vet could not find anything wrong. This went on for a week before I decided something was not right and wanted to see a specialist.  We went to see a neurologist at Carolina Veterinary Specialists who diagnosed Kissie with GME.  After returning home from the specialist and Kissie still there, we got on the internet for information on GME.   Needless to say, what we read was devastating. Now move forward 17 months later - Kissie is doing great. I will say it took 8 months for us to see her really play again and become herself before GME  but every step was a victory and a reason to celebrate! Anyone that has a pet diagnose with GME, please do not put a lot of stock into what is on the internet. Our Kissie is playful, lively, funny, enjoying every day, and full of herself. Hopefully she will not relapse but at this time we have had 17 months of Kissie with GME and all is going well. Keep the faith.

 

 

Itsy Akers

Itsy was born on 9-12-08 and came into our lives when she was 7 weeks old. She has been an absolute joy and the sweetest, smartest little dog (guess everyone thinks that). She is very playful and always overjoyed to see us when we get home from work. She has been perfectly healthy until she exhibited the head nod thing on 3-15-09.  We took Itsy to Carolina Specialists Veterinary (Dr. Skeen) which is located in Winston-Salem, NC. They have a 24/7 emergency hospital and also have several specialists there in addition to Dr. Skeen. From what I've read, we are very fortunate to have a neurologist so close to us.  While it is saddening to read others stories and the realization that there are so many babies with GME, it is also a comfort to have the support of so many good people.
 

 

 

 

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