Saturday, May 29, 2010

Saturday Fun for Coby!

Coby had some fun in the sun today!
We took our little boy out to the lakefront and relaxed.
It's so nice to have him home with us again. :-)

Trying to shield Coby's shaved spot from the sun!

Enjoying a ride in the truck!

My beautiful blue-eyed baby!

Relaxing!! So nice to be out of the ICU!!

Mommy & Baby




Thursday, May 27, 2010

New Pictures

Coby napping and getting his rest.



New Treatment Finally Begins

Good news...Coby's ready to start Dr. Sisson's new treatment protocol! YAY! We started his new anti-seizure medication Zonisamide tonight and began tapering him off the Phenobarbital. We will start the mega dose of Prednisone tomorrow morning. Take a look at my baby's medication schedule for the next 3 days!!


It took me at least an hour to put his entire medication schedule together. With all the medication changes - whether adding or discontinuing medication, decreasing or increasing medication doses, figuring out what blood work needs to be done when in conjunction with certain medication - it is overwhelming to say the least! But...I emailed my "medication schedule" to Dr. Sisson for his review - I had to make sure I had every med/dose/time correct. We're all set....however, it looks as if Coby will be on medication until at least mid-November.

Please continue to pray for Coby! Hopefully he responds VERY well to the medication and can be in FULL remission for his entire life!

Wednesday, May 26, 2010

Who is Coby?

Some of you that may not know Coby, so I will give you a brief history of our little boy.

He is a 1 year old Alaskan Klee Kai who is an important and very special part of our family. We've had him since he was about 9 weeks old - we actually flew to San Antonio to get him (we live in Milwaukee, WI). He's a very shy and timid little guy, but very loving and sweet to those he knows and feels comfortable around.

Before all of these medical conditions occured, he was a happy little boy, always playing with his "sister" (Olive, our cat) or playing fetch with his ball. He went to daycare every Tuesday and Thursday and enjoyed every minute of being there. He was a fun loving, little puppy.

Coby (to me) is my "son". Yes, I call him my son....some call me crazy, but dog people understand. Some may think it's absolutely absurd to spend the amount of time and money I have on him, especially being diagnosed with GME - a "poor prognosis" disease, but I will do everything I can to help him. I am able to go thru each day knowing I'm doing every single possible thing I can to help him. It's just as if one had a child with a serious, incurable disease.....you would do every last possible thing to help your child, no? So....yes, it may be alittle crazy to some, but to me, he is my son and I love him with all my heart.

Medical Expenses

As of today, I have calculated our medical expenses to be right around $4200!!!

Breakdown thus far:
$350 - ER Vet
$2625 - UW Madison
$100 - Gas/Travel Expenses
$800 - Initial testing done at local vet
$315 - Neuro consult Boston & new medication

Needless to say, Coby's new treatment plan with Dr Sisson will require monthly blood work, some of which totals $275/test.

Treating GME requires a lifelong commitment. I am committed to do all I can for the health of Coby and do all I can to get Coby in remission & stay there for many years!

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!