Coby's (GME) Journey Begins

I've started this blog so more people can keep up to date with Coby's medical condition and progress. Here is a brief overview of the events that have happened over this past week.

5/20: Coby starts having seizures at doggie day care and then loses his ability to walk and balance and we rush him to the ER. X-rays are taken for possible fractures or a ruptured disc - nothing conclusive was found. He will stay overnight to be monitored.




5/21: Coby was reported to have a few more seizure episodes overnight and the ER vet believes he has definite neurological problems. We now take him to University of WI (Madison) to the veterinary teaching hospital for further work up and diagnosis. An MRI and CSF tap are recommended, but cannot be done until Monday. Blood work is done, but is relatively normal, which indicates no metabolic problems. They believe he has some inflammatory brain disease. Coby will stay the weekend in ICU while being watched for seizures. They do start him on phenobarbital.

5/22: Received phone call from the vet.
UPDATE: No seizures reported overnight (receiving phenobarbital). He is eating great, sleeping well and overall interactive and more alert. He is walking a little better, but still unbalanced and still presenting obvious signs of neurological deficits. The CSF remains on hold until Monday unless Coby's status declines.

5/23 am: I drive to Madison to see my little boy during visitation hours! He's so happy to see mom! Coby appears well. No seizures over night.



5/23 pm: Coby's stable - NO seizures, but no improvement with his neurological deficits. We wait one more day and hopefully we will have more answers following the MRI and spinal tap. Inflammatory brain disease is suspected....I pray for a miracle!

5/24 am: MRI and CSF around noon. Meeting with doc at 4pm for results.

Results of the MRI are normal.
Results of CSF conclude inflammatory brain disease - diagnosed with GME!!

With the diagnosis of GME, the prognosis is (usually) poor and unknown. It all depends on his response to the steroids. He will be on a large dose to start and then tapered down accordingly. A follow up CSF will be done in about 4 weeks to see if the meds are working. GME cannot be cured and is only controlled for some time. It is very unlikely Coby will live a full life - an estimated 1-3 years for those that respond to meds. Of course, there are exceptions....we are hopeful he is one.

Coby comes home with us!



5/25: Coby had a good day today. He was walking better, able to go up and down stairs, eating great....overall he seems to be doing well. I have been in contact with another neurologist, Dr Sisson, located in Boston who is said to be the best in the country in terms of GME and remission success rates!! Starting tomorrow, we are taking a whole new approach with Coby's care and starting Dr Sisson's treatment protocol. We will start the prednisone more aggressively, along with leflunomide - the higher dose medication and other meds provide better immune suppression than lower doses, which in turn increase success rates. The internet is a wealth of information, both good and bad. Luckily, I've come across a yahoo group for people with GME dogs, which is where I discovered Dr Sisson. Everyone I have emailed has been positive regarding his treatments, have a more positive outlook on the GME prognosis and has truly given me hope for Coby! :-) Thank you to all those that have given advice, donations and support....it is truly appreciated!

5/26: Supposed to start the new treatment plan, but Coby has diarrhea, likely due to his prednisone and low fiber food. This will now prevent us from starting Dr Sisson's GME protocol until the diarrhea resolves. I pray it only takes a day or 2. The diarrhea is currently our setback to starting the new medication....that could be very debilitating to his prognosis. :-(

11 am - I take Coby to the vet for new high fiber food to help resolve the diarrhea, so we can begin the new treatment. While at the vet, Coby needs more blood work for Dr Sisson to rule out possible infectious causes (why UW didn't do this is beyond me). Poor Coby gets so much blood drawn he needs IV fluids before we leave. My poor little man has been through so much in this past week! Unfortunately these tests Dr wants are very expensive....I owed $800 for just tests & food. Yes, $800.

I am now home with Coby & he is doing fine. His diarrhea apparently has improved - according to Chris, so I have yet to observe myself. If it IS improved, we can start the new treatment tomorrow!