Necrotizing Encephalitis or GME

[highonart]

Well, tomorrow will mark one week down and one to go for Crissey. So far, so good. She is alert, eating well and hasn't had another seizure. She is still slightly unstable at times, but she is not listing to the right or falling down like she did before.

We take her back for her neurological check-up on Thursday, so I will let you know what the doctors think after the exam.

They told me that if she makes it two weeks past her release date (which will be July 16) without worsening, then they will deduce that her encephalitis was actually of the infectious variety and that the antibiotics are indeed working.

They want to get the low-dose steroids they gave her in the beginning for the inflammation, time to get out of her system so that they are not "masking" her symptoms.

So keep your fingers crossed! We are almost there!!! And thanks to you all for your prayers and support!

[amandawash]

Prayers and support from little Ranger and I. You are truly lucky to have caught this disease so early, and to have access to extremely advanced veterinary medicine. Please keep us updated.

[highonart]

First the Good News: Crissey is acting completely normal and is back to her usual "Yorkie" self. She has never been hyperactive, she is generally calm and not easily excitable. But she has even "trotted" a couple of times over the last two days. She is still on antibiotics, but no steroids.

Next the "Iffy" News: We took her back to UGA last Thursday. They had originally told me that if she made it two weeks with no worsening, then they would deduce that it was infectious and the antibiotics are working. The two weeks will be up this coming Wed (July 16).

But at our check-up last Thursday, they started to back-pedal a bit. It seems that there is not a definitive consensus among the 3 Board-certified Neurologists on faculty there. They are still concerned that it might be the sterile type - probably Yorkie Necrotizing Encephalitis. If that turns out to be true, then she needs to be on immunosuppressive doses of steroids combined with Cytazar (to start).

So even though she is SO MUCH better, we still can't quite relax. We have to take her back for another check on Friday (July 18). So maybe we will know more then.

I have sent Dr. Sisson in Boston an email to see what he recommends. Please keep praying for us - the prayers are working!

Thank you all for you concern and support! We are hopeful that the antibiotics are knocking this thing out of her system and she will be cured. She sure is a little trooper!

Deborah

[nikkinack]

I hope all goes well with your baby

[highonart]

We met with the docs at UGA vet school again on Friday (July 18). Crissey has been off of all steroids for 3 weeks now and has been taking antibiotics (Clindamycin and Trimeth/Sulfam) during that time.

She is now symptom-free except that her right eye is a little slow to dilate. They are very encouraged with her progress and are beginning to lean toward a diagnosis of infectious encephalitis. They are still not completely convinced that it is not sterile, but they are beginning to believe that her progress may be due more to the antibiotics than the initial steroid treatments she received for the inflammation.

They want to keep her on the antibiotics for another 10 days and recheck her then. It appears that she may just fall into that 30% that have the other kind of encephalitis - either bacterial, viral, or fungal. We still don't know with her, but are hopeful that we may actually be able to cure this.

Thank you all for your continued prayers! They are helping all of us!

Deborah

[highonart]

Well, most of you are familiar with the saga of Crissey's encephalitis. And the other yorkie that we met who got her encephalitis from her annual vaccines. After doing extensive research on the dangers of annually vaccinating our pets, I have also been reading quite a bit about raw food diets for dogs (and cats).

Have any of you had experience feeding raw? Have you discussed any risks that are particularly associated with encephalitis? I know raw makes sense in the wild, but what about dogs like ours with a health issue?

Any thoughts???

Deborah

P.S. Crissey goes back to UGA next week for a follow-up. She is still on the antibiotics and is still symptom free. I am really hoping for a "she's cured" message!!!

[gidgetann]

Originally Posted by Dan & Corinne

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.

Dan & Corrine,
you mentioned in the first post of this thread you put jewel on a special diet. Can you tell me what kind of diet? my gidget has necrotizing encephalitis, she is on predinsone and responding to it, she starts chemo this week, but i want to look at anything else that might help so am interested in the diet you put jewel on. Thanks, Lee Ann