Coby has gained 1 pound in the past week - all thanks to his new homemade diet!! :-) He's too skinny & needs to put some weight on. Thankfully the only cooking I do is for Coby - it's exhausting cooking his special recipe diet!
A special thank you also to Chris, Greg & Kassi for the Christmas card & donation! Thank you so very much for all the support!
Thursday, December 30, 2010
Sunday, December 26, 2010
Improvement Continues
Coby had another CBC drawn today & the lab values are continuing to improve.
Hct 32.3
Platelets 261,000
WBC 4.45
Neutrophils 2.6
We will be able to give Coby his lomustine pill tonight. Coby will have another CBC checked New Year's Day.
Hct 32.3
Platelets 261,000
WBC 4.45
Neutrophils 2.6
We will be able to give Coby his lomustine pill tonight. Coby will have another CBC checked New Year's Day.
Saturday, December 25, 2010
MERRY CHRISTMAS
Merry Christmas!! Thank you for all the support & prayers over the past year & especially this past week!
Friday, December 24, 2010
Repeat CBC Results
Coby had another CBC drawn this morning. We got the results & his lab values are continuing to improve - which Dr. Sisson predicted!!! They are still a little low, but are rising slowly & improving. We will have another repeat CBC done Sunday to determine whether or not we can give the 5mg lomustine that night. We will be resuming the nightly 10mg leflunomide tomorrow.
LAB RESULTS:
I think the lab values are correct, but it's difficult to read the clinic's results & interpretation.
Sunday, December 19th (Date of Admission)
Hct 30.8
Platelets 75,000
WBC 0.26
Neutrophils 0
Monday, December 20th
Hct 27.5
Platelets 44,000
WBC 0.4
Neutrophils 0.12
Tuesday, December 21st
Hct 28.3
Platelets Clumped & unable to get adequate reading, but appears < 50,000
WBC 0.6
Neutrophils 0.23
Wednesday, December 22nd
Hct 30.5
Platelets 75,000
WBC 1.6
Neutrophils 0.67
Friday December 24th
Hct 30.8
Platelets 127,000
WBC 2.5
Neutrophils 1.03
In addition, it has been 7 months since Coby's GME diagnosis AND he has been prednisone free for almost 1 month!!!
Merry Christmas & Happy Holidays to Everyone!!!
LAB RESULTS:
I think the lab values are correct, but it's difficult to read the clinic's results & interpretation.
Sunday, December 19th (Date of Admission)
Hct 30.8
Platelets 75,000
WBC 0.26
Neutrophils 0
Monday, December 20th
Hct 27.5
Platelets 44,000
WBC 0.4
Neutrophils 0.12
Tuesday, December 21st
Hct 28.3
Platelets Clumped & unable to get adequate reading, but appears < 50,000
WBC 0.6
Neutrophils 0.23
Wednesday, December 22nd
Hct 30.5
Platelets 75,000
WBC 1.6
Neutrophils 0.67
Friday December 24th
Hct 30.8
Platelets 127,000
WBC 2.5
Neutrophils 1.03
In addition, it has been 7 months since Coby's GME diagnosis AND he has been prednisone free for almost 1 month!!!
Merry Christmas & Happy Holidays to Everyone!!!
Thursday, December 23, 2010
Hospitalization "Wrap Up"
Coby's final diagnosis was Neutropenia (drug induced). The final cost for those 4 days = $1924. The severe neutropenia was caused by the chemo & immunosuppressant drugs - mostly from the synergistic effect from the cytarabine & lomustine. Sepsis was a high risk, but thankfully Coby didn't actually become septic like we initially thought. His recovery was slower than expected, but he made it home after 4 days. He is on 2 different antibiotics for the next 7 days (Amoxicillin & Baytril) & his Leflunomide is on hold until his next CBC. We will get another CBC drawn tomorrow - those results will help determine our next step - whether or not to restart the chemo drugs. We will eventually resume all the chemo meds, but the doses will be much lower. Hopefully Coby will only have another 5 or 6 months worth of chemo. He continues to be prednisone free. :-) It has also been 7 months since his GME diagnosis. Coby is also receiving a "homemade" diet now. With Coby's weight loss & extreme pickiness when it comes to dog food, we decided a special homemade diet (recommended by Dr. Sisson) was our only way to get him to eat. And, as expected, because it was not dog food, but rather chicken & rice, he scarfed it right up. There are a few more things mixed in the food for additional vitamins, calcium, etc. Hopefully Coby will put some weight on soon.Hopefully this experience has decreased Coby's chance for a GME relapse in the future! Maybe this is why it happened....so we don't have to experience a relapse & Coby can live a full, healthy happy life! Only time will tell....
Finally home
Coby's home! He's doing good - eating good, playing a bit & catching up on his rest! We go back to the clinic tomorrow for another CBC to make sure his neutrophils & platelets are continuing to improve (as expected).
Wednesday, December 22, 2010
Coby's Home!!!
Coby is finally home! He is a ball of energy & looks much better!! Will write more tomorrow!
AM Update
Sorry for not posting updates yesterday - it was an emotional day of differing opinions regarding Coby & his labs. Coby's white blood cells/neutrophils are slowly improving. Platelets are very low. Dr. Sisson said he is not worried about it & Coby will pull thru this - it's just a matter of how long it will take him to recover. I went to visit last night - Coby was more alert & active than our Monday night visit. I received an update this morning from the hospital & Coby did fine overnight - no problems or complications, vital signs good & eating well. Lab work will be done around 9am. That is what we are all waiting for - those lab results. Hopefully his labs have improved over the past 24 hours. All I want is to have Coby home with us for Christmas....what a wonderful gift that would be. Thank you for all the support & prayers - Coby certainly needs them & I greatly appreciate them. Will update more later.
Monday, December 20, 2010
Afternoon Update
Just got a update from the clinic on Coby.
He looks good, active, eating well.
Temperature is still high - 104.4 degrees
His WBC were up to 400 (I think they were 260 yesterday).
Neutrophils were 120 (I think those were at zero yesterday) - goal 1000-1500.
Blood sugar & blood pressure good.
Repeat CBC tomorrow.
We are going to visit Coby tonight!!
He looks good, active, eating well.
Temperature is still high - 104.4 degrees
His WBC were up to 400 (I think they were 260 yesterday).
Neutrophils were 120 (I think those were at zero yesterday) - goal 1000-1500.
Blood sugar & blood pressure good.
Repeat CBC tomorrow.
We are going to visit Coby tonight!!
Hospital Update
one night in the clinic & this is the update from our neurologist who called the clinic this morning:
"Coby's temperature is still elevated but down to about 104 degrees. There has been no further vomiting or diarrhea. His blood glucose became a little low so they gave some IV glucose to correct that. He is continuing on IV fluids & antibiotics. He would not eat any dog food so they fed him a little cooked steak & rice. For this stage of treatment that all sounds good for now. Hopefully within another 12-24 hours the fever will fully resolve."
More updates to come when available.....
"Coby's temperature is still elevated but down to about 104 degrees. There has been no further vomiting or diarrhea. His blood glucose became a little low so they gave some IV glucose to correct that. He is continuing on IV fluids & antibiotics. He would not eat any dog food so they fed him a little cooked steak & rice. For this stage of treatment that all sounds good for now. Hopefully within another 12-24 hours the fever will fully resolve."
More updates to come when available.....
Sunday, December 19, 2010
Coby has been hospitalized
Coby has been hospitalized with a fever of 105.7 - he has caught an infection & is now septic. Thankfully, we caught it early enough today from the symptoms he was exhibiting - shivers/tremors, diarrhea, vomiting, lethargic. I knew in my gut something was wrong, emailed Dr. Sisson (our neurologist in Boston) who suggested bringing him to the ER. We did just that & if we had not, Coby would have died. Coby had a fever of 105.7 indicating sepsis. He is currently at the hospital where he will remain for a few days. He is receiving 3 different IV antibiotics and IV fluids. They ran blood work and as Dr. Sisson predicted, Coby's white blood cells/neutrophils were very low. The normal "low" (for neutrophils I think...I don't have his lab work with me) is around 5500...Coby's level was 260!!! Either way, it was SUPER low!!! The goal is now to get them back to normal, get rid of this infection & hopefully be home by Christmas. Coby will be off all his chemo medications for right now & only on the zonisamide for his seizures.
I am not sure of the medically correct reasoning for what has happened, but it has something to do with Coby no longer being on prednisone & because of that, he is unable to handle such a big chemo load like last month. It was confusing when I was explained that over the phone, so I apologize if I am totally wrong. Once I have a correct answer, I can repost.
On a positive note, there is a "silver lining" to the situation according to Dr. Sisson: His chance of relapse is lower because the cells causing the disease were severely damaged the same way his normal cells were which made him sick.
I will continue to post updates as I receive them! For now, positive thoughts & looking forward to having Coby home for Christmas. Here are some pictures of him this morning when I thought he was only shivering b/c he was "cold".
I am not sure of the medically correct reasoning for what has happened, but it has something to do with Coby no longer being on prednisone & because of that, he is unable to handle such a big chemo load like last month. It was confusing when I was explained that over the phone, so I apologize if I am totally wrong. Once I have a correct answer, I can repost.
On a positive note, there is a "silver lining" to the situation according to Dr. Sisson: His chance of relapse is lower because the cells causing the disease were severely damaged the same way his normal cells were which made him sick.
I will continue to post updates as I receive them! For now, positive thoughts & looking forward to having Coby home for Christmas. Here are some pictures of him this morning when I thought he was only shivering b/c he was "cold".
Saturday, December 11, 2010
WebMD pets
Check out Web MD's pet health website & see Coby's picture on their "Winter Pet Photos slideshow! Slide 21. :-)
http://pets.webmd.com/slideshow-photos-winter
http://pets.webmd.com/slideshow-photos-winter
Wednesday, December 8, 2010
Quick Update
Coby has been prednisone free now for 11 days & continues to do well. He still receives his other medications: zonisamide twice a day, leflunomide once a day, lomustine once a month & cytarabine injections 2 days every month (twice a day = 4 injections). Coby's next cytarabine injection is this friday (the 10th & 11th of every month) - I still hate giving those shots.
Tuesday, November 30, 2010
Treatment of Autoimmune Diseases of the Central Nervous System of Dogs
I recently found an interesting article while researching GME. I wanted to add more GME information to the blog & I stumbled upon a website, which linked me to a newsletter - it was the Veterinary Referral News from Angell Animal Medical Center. This is the animal medical center in Boston where our neurologist works. He even wrote an article for this Summer 2010 edition of the newsletter. I've copied & pasted the entire article, but also included the link to the website.
Veterinary Referral News from Angell Animal Medical Center
http://www.mspca.org/assets/documents/alumni_news_september-2010.pdf
Treatment of Autoimmune Diseases of the Central Nervous System of Dogs
By Allen Sisson, DVM, MS, DACVIM (Neurology)
Several inflammatory, primary central nervous system (CNS) diseases of dogs have been described:
1. Granulomatous Meningoencephalomyelitis (GME)
2. Necrotizing Encephalitis of Pug, Maltese, and Yorkshire terrier dogs
3. Corticosteroid-Responsive or Neutrophilic Meningitis
4. Eosinophilic Meningoencephalomyelitis
5. Idiopathic Tremor Syndrome or Cerebellitis
It is now suspected that these idiopathic diseases are due to abnormal immune system function (an autoimmune disorder).
Depending on where in the CNS these diseases start, they can cause a wide variety of signs such as:
1. Progressively worsening central vestibular signs
2. Progressively worsening seizures and behavior abnormalities
3. Progressively worsening neck and/or back pain
4. Progressively worsening para- or tetraparesis often mimicking a disc herniation
5. Progressively worsening generalized severe-intention tremor
6. Acute onset of blindness
These signs can progress at various rates, but they are often acute (1–2 days) to peracute (8–12 hours) in duration. In the peracute form these CNS diseases are emergencies. If rapid neurologic deterioration is noted, immediate referral to a 24-hour emergency center or aggressive immunosuppressive therapy should be started until a spinal fluid analysis and advanced CNS imaging can be done to confirm the diagnosis. Since abnormal spinal fluid can be normalized within 24 hours of starting prednisone therapy, referral for diagnostic testing as soon as possible after initiating therapy is best. High-dose, low-term immunosuppression is the key to successful therapy for all autoimmune diseases of the CNS. For this reason it is important that infectious causes of CNS inflammation be ruled out by diagnostic testing, since immunosuppressive therapy would worsen these conditions. Corticosteroids, primarily prednisone, are the drugs of choice and are sometimes used as the sole therapy for neutrophilic meningitis. It is important that immunosuppressive doses be used initially, and therapy be sustained at high doses, very gradually tapered over many months, or relapses are likely to occur. Prednisone causes many adverse effects. When these adverse effects are severe, they may require the prednisone dose be reduced or even stopped and another immunosuppressive drug to be used in its place or combined with a reduced prednisone dose. In addition, when immune-mediated encephalitis or myelitis is present, it is unlikely that prednisone therapy alone can lead to permanent remission. For this reason the neurology service at Angell Animal Medical Center now treats all immune-mediated CNS diseases with combination immunosuppressive therapy. Dogs with immune-mediated meningitis are treated with prednisone and with the immunomodulatory drug leflunomide, which is a once-daily oral medication given for one year or in some cases longer. This drug inhibits T and B lymphocyte proliferation and function and is very effective. It is a bone-marrow suppressor and requires monthly CBC monitoring and initial dose adjustment based on leflunomide blood levels. Treated this way it is rare for immune-mediated meningitis cases to relapse, with most cases achieving permanent remission and coming off of all therapy within one year. Most dogs with GME are treated with a combination of prednisone, leflunomide and monthly cytarabine injectable therapy given over a 48-hour period. This three-drug combination leads to long-term remission in over 90% of dogs after one to 1.5 years of therapy. Pug dogs, Maltese and Yorkshire terriers that have necrotizing encephalitis, are given a combination of prednisone, leflunomide, cytarabine lomustine and cyclosporine modified. The cytarabine and lomustine are given monthly 14 days apart, since both drugs cause leukocyte nadirs 6 to 14 days post-treatment so that they cannot be given at the same time. The use of these two chemotherapy drugs in combination requires CBC monitoring twice a month, to be sure that neutrophil and platelet numbers are adequate before each therapy. Cyclosporine modified is given BID orally and requires dose adjustment based on blood level measurement. With this five-drug therapy for 1.5 years, about 80% of dogs with necrotizing encephalitis achieve complete remission.
For more information, please visit angell.org/neurology.
Veterinary Referral News from Angell Animal Medical Center
http://www.mspca.org/assets/documents/alumni_news_september-2010.pdf
Treatment of Autoimmune Diseases of the Central Nervous System of Dogs
By Allen Sisson, DVM, MS, DACVIM (Neurology)
Several inflammatory, primary central nervous system (CNS) diseases of dogs have been described:
1. Granulomatous Meningoencephalomyelitis (GME)
2. Necrotizing Encephalitis of Pug, Maltese, and Yorkshire terrier dogs
3. Corticosteroid-Responsive or Neutrophilic Meningitis
4. Eosinophilic Meningoencephalomyelitis
5. Idiopathic Tremor Syndrome or Cerebellitis
It is now suspected that these idiopathic diseases are due to abnormal immune system function (an autoimmune disorder).
Depending on where in the CNS these diseases start, they can cause a wide variety of signs such as:
1. Progressively worsening central vestibular signs
2. Progressively worsening seizures and behavior abnormalities
3. Progressively worsening neck and/or back pain
4. Progressively worsening para- or tetraparesis often mimicking a disc herniation
5. Progressively worsening generalized severe-intention tremor
6. Acute onset of blindness
These signs can progress at various rates, but they are often acute (1–2 days) to peracute (8–12 hours) in duration. In the peracute form these CNS diseases are emergencies. If rapid neurologic deterioration is noted, immediate referral to a 24-hour emergency center or aggressive immunosuppressive therapy should be started until a spinal fluid analysis and advanced CNS imaging can be done to confirm the diagnosis. Since abnormal spinal fluid can be normalized within 24 hours of starting prednisone therapy, referral for diagnostic testing as soon as possible after initiating therapy is best. High-dose, low-term immunosuppression is the key to successful therapy for all autoimmune diseases of the CNS. For this reason it is important that infectious causes of CNS inflammation be ruled out by diagnostic testing, since immunosuppressive therapy would worsen these conditions. Corticosteroids, primarily prednisone, are the drugs of choice and are sometimes used as the sole therapy for neutrophilic meningitis. It is important that immunosuppressive doses be used initially, and therapy be sustained at high doses, very gradually tapered over many months, or relapses are likely to occur. Prednisone causes many adverse effects. When these adverse effects are severe, they may require the prednisone dose be reduced or even stopped and another immunosuppressive drug to be used in its place or combined with a reduced prednisone dose. In addition, when immune-mediated encephalitis or myelitis is present, it is unlikely that prednisone therapy alone can lead to permanent remission. For this reason the neurology service at Angell Animal Medical Center now treats all immune-mediated CNS diseases with combination immunosuppressive therapy. Dogs with immune-mediated meningitis are treated with prednisone and with the immunomodulatory drug leflunomide, which is a once-daily oral medication given for one year or in some cases longer. This drug inhibits T and B lymphocyte proliferation and function and is very effective. It is a bone-marrow suppressor and requires monthly CBC monitoring and initial dose adjustment based on leflunomide blood levels. Treated this way it is rare for immune-mediated meningitis cases to relapse, with most cases achieving permanent remission and coming off of all therapy within one year. Most dogs with GME are treated with a combination of prednisone, leflunomide and monthly cytarabine injectable therapy given over a 48-hour period. This three-drug combination leads to long-term remission in over 90% of dogs after one to 1.5 years of therapy. Pug dogs, Maltese and Yorkshire terriers that have necrotizing encephalitis, are given a combination of prednisone, leflunomide, cytarabine lomustine and cyclosporine modified. The cytarabine and lomustine are given monthly 14 days apart, since both drugs cause leukocyte nadirs 6 to 14 days post-treatment so that they cannot be given at the same time. The use of these two chemotherapy drugs in combination requires CBC monitoring twice a month, to be sure that neutrophil and platelet numbers are adequate before each therapy. Cyclosporine modified is given BID orally and requires dose adjustment based on blood level measurement. With this five-drug therapy for 1.5 years, about 80% of dogs with necrotizing encephalitis achieve complete remission.
For more information, please visit angell.org/neurology.
Saturday, November 27, 2010
Last Day of Prednisone!!!
It has been 6 months since Coby's GME diagnosis and his LAST dose of prednisone was given this morning!! :-) YAY! Coby's chance of relapsing is now increased without being on the prednisone, so fingers (& paws) crossed we don't encounter any problems!! He is still receiving the chemo meds until May. Keep him in your thoughts & prayers....the chance of relapse is greatest in the first 30 days after stopping the prednisone, but could happen at ANY time!
Wednesday, November 24, 2010
Picture Time!!!
Just posting some new pictures....enjoy!
Coby & I...showing off his portrait tattoo.
My "Princess" (my husband calls him a princess....lol)
Coby all snug in his new bed. 
Coby's new Christmas sweater.
Coby's new winter vest.
Coby's skull sweater.
Coby playing fetch with his ball....such a happy little boy!
What am I thankful for this Thanksgiving?
Tomorrow is Thanksgiving - people everywhere have the day off and are spending it with family & friends. Aside from eating turkey & then passing out in a food coma, the day is about being thankful for what we have. Most people take for granted all of the things they have. It is so easy to get caught up in every day living & sometimes we don't stop to really be thankful for all that we have. This year has been a roller-coaster ride, full of many ups & downs, so this Thanksgiving I am taking the time to stop for a moment & remember the many things I am thankful for. I am thankful for MANY things, but here is just a list of some.....
1. I am thankful for Coby & having him here with us this Thanksgiving!! He is happy & healthy & nothing makes me happier than that!
2. I am thankful for my supportive, wonderful & understanding husband - without him, there's no way (without going into some serious debt) I could be caring for Coby the way I am. He supports our family, while I support Coby & his medical needs/expenses.
3. I am thankful for Coby's neurologist Dr. Sisson. Without him, I don't know if Coby would be here with us right now. Although he works in Boston, he is always available when it comes to Coby's health, answering my many emails, questions/concerns, etc. I believe in his treatment protocol & believe Coby will be one of the many full-remission GME dogs.
4. I am thankful for the many medications available for Coby & treating his GME.
4. I am thankful for our local vet, Dr Wendy, for supporting my decision regarding Coby's GME treatment. Dr. Wendy is wonderful with Coby & is always here to help & support us. All the staff at St. Paul Vet Clinic are great.
5. I am thankful for the New GME Dogs Yahoo Group. This group is full of wonderful, knowledgeable & caring people. Without this group I would not have found Dr. Sisson. I have learned so much from this group. All the advice and support is greatly appreciated.
6. I am thankful for the AKK community. As Coby being the first (known) AKK diagnosed with GME, the support, prayers & donations received from the AKK community alone have been tremendous!
7. I am thankful for my supportive family & friends. This has been a difficult & life changing last 6 months, ever since Coby's GME diagnosis & those closest to me have helped a great deal. Without them, I don't know what I would do.
8. I am thankful for the internet - yes, the internet!! Without the internet, I would not have found the many things, places, people, information, etc. I have for Coby's care. I have been able to connect & network with SO many wonderful people via the yahoo groups & Facebook. Having the ability to network with such supportive, kind people has been incredibly helpful this past year.
9. I am thankful for my job. Without my job, I would not be able to pay the medical bills for Coby. I am thankful for those dog lovers I work with that have been understanding, helpful & supportive of the things I do or must do for Coby.
10. I am thankful for all the support, thoughts, prayers & donations made to Coby & I over these past 6 months!
Happy Thanksgiving!!
Love,
Jaime & Coby
1. I am thankful for Coby & having him here with us this Thanksgiving!! He is happy & healthy & nothing makes me happier than that!
2. I am thankful for my supportive, wonderful & understanding husband - without him, there's no way (without going into some serious debt) I could be caring for Coby the way I am. He supports our family, while I support Coby & his medical needs/expenses.
3. I am thankful for Coby's neurologist Dr. Sisson. Without him, I don't know if Coby would be here with us right now. Although he works in Boston, he is always available when it comes to Coby's health, answering my many emails, questions/concerns, etc. I believe in his treatment protocol & believe Coby will be one of the many full-remission GME dogs.
4. I am thankful for the many medications available for Coby & treating his GME.
4. I am thankful for our local vet, Dr Wendy, for supporting my decision regarding Coby's GME treatment. Dr. Wendy is wonderful with Coby & is always here to help & support us. All the staff at St. Paul Vet Clinic are great.
5. I am thankful for the New GME Dogs Yahoo Group. This group is full of wonderful, knowledgeable & caring people. Without this group I would not have found Dr. Sisson. I have learned so much from this group. All the advice and support is greatly appreciated.
6. I am thankful for the AKK community. As Coby being the first (known) AKK diagnosed with GME, the support, prayers & donations received from the AKK community alone have been tremendous!
7. I am thankful for my supportive family & friends. This has been a difficult & life changing last 6 months, ever since Coby's GME diagnosis & those closest to me have helped a great deal. Without them, I don't know what I would do.
8. I am thankful for the internet - yes, the internet!! Without the internet, I would not have found the many things, places, people, information, etc. I have for Coby's care. I have been able to connect & network with SO many wonderful people via the yahoo groups & Facebook. Having the ability to network with such supportive, kind people has been incredibly helpful this past year.
9. I am thankful for my job. Without my job, I would not be able to pay the medical bills for Coby. I am thankful for those dog lovers I work with that have been understanding, helpful & supportive of the things I do or must do for Coby.
10. I am thankful for all the support, thoughts, prayers & donations made to Coby & I over these past 6 months!
Happy Thanksgiving!!
Love,
Jaime & Coby
Saturday, November 6, 2010
Thursday, November 4, 2010
October Overview
What can I say except October was a stressful & expensive month - about $1,000 spent in just one month! We had issues with titrating his chemo medication - the once a month Lomustine. So, we ended up having to get 3 CBC's done within a 3 week period. Coby has also been very hyper & trying to chew up everything in site. He ended up with a sock of mine, which I thought he had totally ingested (a 2x2 inch piece) - needless to say, 2 days later I finally mentioned it to my vet. We did x-rays & then rushed him to the vet hospital ER in Madison for (what we thought at the time) an endoscope. Good news - no endoscope was done/needed. After an over-reaction to the entire situation, I think Coby just ripped a big hole in the sock & did not end up eating it b/c I have yet to see the sock! And, of course his medications are always being ordered & shipped to us, which costs money!
On a positive note, Coby continues to do well. He's very energetic, happy & appears healthy. We're still working on getting the right dose of chemo - due to last month's mishap with the CBC's, we've now fell behind in getting him to that much needed dose of Lomustine. Hopefully this doesn't affect the outcome of his treatments/health.
Coby's last dose of Prednisone will be November 27th. If he relapses, we will need to restart it, but of course....we hope he never needs it again & never ever relapses. The chemo will continue for another year or so.
Hopefully this will be a successful month of medication administration, dosing, lab work, etc!
On a positive note, Coby continues to do well. He's very energetic, happy & appears healthy. We're still working on getting the right dose of chemo - due to last month's mishap with the CBC's, we've now fell behind in getting him to that much needed dose of Lomustine. Hopefully this doesn't affect the outcome of his treatments/health.
Coby's last dose of Prednisone will be November 27th. If he relapses, we will need to restart it, but of course....we hope he never needs it again & never ever relapses. The chemo will continue for another year or so.
Hopefully this will be a successful month of medication administration, dosing, lab work, etc!
Saturday, October 9, 2010
Update
Coby's doing great & now only getting 7.5mg Prednisone every other day! It will be almost 5 months since he's been diagnosed with GME! We are so happy our little boy is responding so well with treatment & remains in remission!
Because Coby has such a special place in my heart, I decided to get a tattoo to remind me of him today, tomorrow & always! Coby isn't just a "pet" or just a "dog"....he is my little angel & I will do any & everything I can my boy!! He is a fighter & will continue to fight & win this battle against GME!
Sunday, August 22, 2010
3 Month (almost 4 month) Update
It has been 3 months (almost 4 actually) since Coby's GME diagnosis & I am happy to report he is still in remission & doing great! It has been a very busy & stressful time, which is why the blog isn't as up to date as I'd like. We've been traveling and will be getting married at the end of the month, so this post will be quick, but I will resume the blog after October with hopefully more detailed & more frequent posts.
As far as Coby's overall health goes, he appears stable & healthy. He is happy & very active - he has also gained 2 pounds in the last 3.5 months. We are still working with our neurologist in Boston (Dr. Sisson) via email & our local vet...both of whom I am very grateful for. We continue to diligently follow Dr. Sisson's protocol.
Coby's current medications are as follows:
7.5mg Prednisone once daily
25mg Zonisamide twice daily (every 12 hours)
10mg Leflunomide once daily
1.2mL Cytarabine injections (Given every 12 hours on 2 specific days of the month - 10th/11th)
Lomustine once a month (the same day every month - 26th) - first dose will be this month
We will be lowering the Prednisone at the end of the month - we will be giving it every other day starting September 28th until the end of November tentatively.
I wish I had more time to write & I will try my best when I have some more down time. I will try & add more pictures also of our recent trip to Florida - Coby had a better time than us!!
As far as Coby's overall health goes, he appears stable & healthy. He is happy & very active - he has also gained 2 pounds in the last 3.5 months. We are still working with our neurologist in Boston (Dr. Sisson) via email & our local vet...both of whom I am very grateful for. We continue to diligently follow Dr. Sisson's protocol.
Coby's current medications are as follows:
7.5mg Prednisone once daily
25mg Zonisamide twice daily (every 12 hours)
10mg Leflunomide once daily
1.2mL Cytarabine injections (Given every 12 hours on 2 specific days of the month - 10th/11th)
Lomustine once a month (the same day every month - 26th) - first dose will be this month
We will be lowering the Prednisone at the end of the month - we will be giving it every other day starting September 28th until the end of November tentatively.
I wish I had more time to write & I will try my best when I have some more down time. I will try & add more pictures also of our recent trip to Florida - Coby had a better time than us!!
Monday, August 16, 2010
Quick Note
It's been almost 3 months since Coby's diagnosis with GME. I will post a more detailed blog this weekend with current & future treatment plans, as well as a few more things!
Friday, August 6, 2010
August Update
Again....where did the past month go? Time has been flying by & I have not been updating the blog. Sorry! Where do I begin?
Tuesday we visited the vet & had Coby's leflunomide blood levels checked again. The results are still pending, but like last month....it cost $300. I'm hoping this is the final test we need to do for this medication. During our visit while drawing blood, Coby's vein ruptured & a hematoma started to develop, so we had to wrap his neck up with this cute little bandage. My poor little boy....he is such a trooper!!! Such strength & courage out of this tiny pup.
Thursday we visited the vet again for Coby's monthly fasting CBC & super chem profile. I received those results today & everything came back just fine! Labs looked wonderful. :-) So happy!
On the 10th & 11th we are to give the cytarabine injections again!! I'm nervous already. Coby is still receiving the Prednisone and Zonisamide. He is still eating like a horse & is now at 8.5 pounds - that's a 1 pound weight gain since last month's post! So, he has gained 2 pounds in 2 months & is looking great! Needless to say with his increased weight, we had to increase the Prednisone a few weeks ago. I'm trying to keep him stable at this weight now.
He's still very active & we've been walking & running a few times a week when the weather isn't so hot & humid. He's loving life right now & it's so great to see him happy & healthy! He loves to play with his sister, Olive (bengel cat).
Oh...our trip to Cali last month....that went great! Coby did amazing on the flights! Didn't make a peep....he slept the entire way & actually did ok around the other dogs. I was very proud of him! We're going to FL at the end of the month & are taking him with us again. I hope this trip goes just as smoothly! This is a picture of him waiting in the airport with us! LOL So cute!!
Here's Coby at the AKKAOA picnic - taking advantage of the photo area! 
Tuesday we visited the vet & had Coby's leflunomide blood levels checked again. The results are still pending, but like last month....it cost $300. I'm hoping this is the final test we need to do for this medication. During our visit while drawing blood, Coby's vein ruptured & a hematoma started to develop, so we had to wrap his neck up with this cute little bandage. My poor little boy....he is such a trooper!!! Such strength & courage out of this tiny pup.
Thursday we visited the vet again for Coby's monthly fasting CBC & super chem profile. I received those results today & everything came back just fine! Labs looked wonderful. :-) So happy!On the 10th & 11th we are to give the cytarabine injections again!! I'm nervous already. Coby is still receiving the Prednisone and Zonisamide. He is still eating like a horse & is now at 8.5 pounds - that's a 1 pound weight gain since last month's post! So, he has gained 2 pounds in 2 months & is looking great! Needless to say with his increased weight, we had to increase the Prednisone a few weeks ago. I'm trying to keep him stable at this weight now.
He's still very active & we've been walking & running a few times a week when the weather isn't so hot & humid. He's loving life right now & it's so great to see him happy & healthy! He loves to play with his sister, Olive (bengel cat).
Oh...our trip to Cali last month....that went great! Coby did amazing on the flights! Didn't make a peep....he slept the entire way & actually did ok around the other dogs. I was very proud of him! We're going to FL at the end of the month & are taking him with us again. I hope this trip goes just as smoothly! This is a picture of him waiting in the airport with us! LOL So cute!!
Here's Coby on the plane with us underneath the seat in front of me....all snuggled up!!
Overall, the past month has been a good month! :-)
Thursday, July 8, 2010
Chemo Bag
Here's pictures of what I received in the mail today....it's for Coby's cytarabine injections. Very scary looking!!
Wednesday, July 7, 2010
It's July Already?
Wow....where did June go? Sorry for not posting any updates recently! Coby is still doing very well!! :-)
Last week Coby’s leflunomide blood level came back below the therapeutic range, so we had to increase his leflunomide dose from 5 mg once a day to 10 mg once a day. We will have to repeat another leflunomide blood level 20 to 23 hours after a pill is given in 30 days. There is some chance 3 leflunomide blood levels will have to be done to get the dose correct. This test requires I send (overnight) Coby's plasma to Dr. Sisson in Boston, along with a check for $270. It's a very expensive test & hopefully we won't need to do THREE! Coby will be on this medication for about a year & a half. Once we get to the therapeutic range we won't need to continue to check his blood levels.
Dr. Sisson also wants us to start cytarabine injections (another immunosuppressant). It is given as four injections 12 hours apart over a two day period once a month. It will be the same two days every month - we will start this Saturday & give the shots every 10th & 11th of the month. We will also need to have a CBC done once a month 3 to 5 days before the injections are given each month with the results sent to Dr. Sisson. Coby will be receiving these injections for about 1 year.
Coby is also still receiving the Prednisone and Zonisamide. He is eating great & is now at 7.6 pounds - that's a 1 pound weight gain since his diagnosis. He looks much better!
Right now I'm trying to train Coby to adapt to his new airline carrier. He only flew once & that was when he was 9 weeks old when we were bringing him back to Milwaukee from San Antonio. He did great back then, but now....he's much more difficult & anxious...lol. We are planning on attending the AKK meeting in Claremont, CA - we want everyone who has been a great support to meet Coby & learn about his disease. We had $1500 of airfare credit that we needed to use by the end of the year & we certainly didn't think we'd be able to use it up by then. But...now we can put that credit to good use! I just hope Coby doesn't cause an uproar on the flights!! :-)
Last week Coby’s leflunomide blood level came back below the therapeutic range, so we had to increase his leflunomide dose from 5 mg once a day to 10 mg once a day. We will have to repeat another leflunomide blood level 20 to 23 hours after a pill is given in 30 days. There is some chance 3 leflunomide blood levels will have to be done to get the dose correct. This test requires I send (overnight) Coby's plasma to Dr. Sisson in Boston, along with a check for $270. It's a very expensive test & hopefully we won't need to do THREE! Coby will be on this medication for about a year & a half. Once we get to the therapeutic range we won't need to continue to check his blood levels.
Dr. Sisson also wants us to start cytarabine injections (another immunosuppressant). It is given as four injections 12 hours apart over a two day period once a month. It will be the same two days every month - we will start this Saturday & give the shots every 10th & 11th of the month. We will also need to have a CBC done once a month 3 to 5 days before the injections are given each month with the results sent to Dr. Sisson. Coby will be receiving these injections for about 1 year.
Coby is also still receiving the Prednisone and Zonisamide. He is eating great & is now at 7.6 pounds - that's a 1 pound weight gain since his diagnosis. He looks much better!
Right now I'm trying to train Coby to adapt to his new airline carrier. He only flew once & that was when he was 9 weeks old when we were bringing him back to Milwaukee from San Antonio. He did great back then, but now....he's much more difficult & anxious...lol. We are planning on attending the AKK meeting in Claremont, CA - we want everyone who has been a great support to meet Coby & learn about his disease. We had $1500 of airfare credit that we needed to use by the end of the year & we certainly didn't think we'd be able to use it up by then. But...now we can put that credit to good use! I just hope Coby doesn't cause an uproar on the flights!! :-)
Friday, June 18, 2010
Brief Update & Pictures
It's been over a week without an update, so I thought it was about time. Coby is doing very well right now. He is now only on the Prednisone once daily & so far, so good! He's also gained almost a pound during this past month, putting him at alittle over 7 pounds. He's more energetic & overall seems more interested in playing with his toys & us! He seems to be himself.
Tuesday, June 8, 2010
Lab Results
On Monday, Coby went in for his first round of lab work since starting Dr Sisson's GME protocol. It was 10 days after starting the new medications - including the high dose of Prednisone. The results came back today & even though some were out of range & concerning to myself, according to Dr Sisson, the labs were normal (actually milder than usual changes) expected from Prednisone therapy.
Out of range labs:
WBC 18.4 - high (normal 4.0-15.5)
RBC 4.5 - low (normal 4.8-9.3)
HGB 10.3 - low (normal 12.1-20.3)
HCT 31 - low (normal 36-60)
Neutrophils 15456 - high (normal 2060-10600)
Monocytes 1104 - high (normal 0-840)
Creatinine 0.4 - low (normal 0.5-1.6)
BUN 14 - normal (normal 6-31)
BUN/Creatinine Ratio 35 - high (normal 4-27)
Amylase 248 - low (normal 290-1125)
We continue therapy as planned. More labs to be drawn June 28th.
Out of range labs:
WBC 18.4 - high (normal 4.0-15.5)
RBC 4.5 - low (normal 4.8-9.3)
HGB 10.3 - low (normal 12.1-20.3)
HCT 31 - low (normal 36-60)
Neutrophils 15456 - high (normal 2060-10600)
Monocytes 1104 - high (normal 0-840)
Creatinine 0.4 - low (normal 0.5-1.6)
BUN 14 - normal (normal 6-31)
BUN/Creatinine Ratio 35 - high (normal 4-27)
Amylase 248 - low (normal 290-1125)
We continue therapy as planned. More labs to be drawn June 28th.
Sunday, June 6, 2010
Partial Seizure?
Coby may have had a partial seizure this afternoon, but we are not sure.
Out of the blue, he just started trembling - his head & upper body. He was shaking as if he was extremely cold or scared, but neither of the 2 could have been the reason though. I put my hand on top of his head....nothing but trembling....I was so scared & in tears all over again. He would tremble for about 5 seconds, then stop, then tremble again for another 5 seconds, then stop....this repeated for at least 15-20 minutes. Then....he was fine...no more trembles.
I emailed our neurologist right away & of course, as amazing as he is, he responded within the hour. He said he can't be sure but it could have been a partial seizure....we have to wait & see if it happens again. He also wants us to videotape it if it happens again. Our video camera is ready!!!
Tomorrow Coby goes to the vet for some more blood work. It's been 10 days since starting his new medication protocol with Dr. Sisson. I guess we're looking to see how his body is responding to all the meds....to make sure his liver, kidneys & whatever else is doing ok! Will let you know how things turn out!!!
Out of the blue, he just started trembling - his head & upper body. He was shaking as if he was extremely cold or scared, but neither of the 2 could have been the reason though. I put my hand on top of his head....nothing but trembling....I was so scared & in tears all over again. He would tremble for about 5 seconds, then stop, then tremble again for another 5 seconds, then stop....this repeated for at least 15-20 minutes. Then....he was fine...no more trembles.
I emailed our neurologist right away & of course, as amazing as he is, he responded within the hour. He said he can't be sure but it could have been a partial seizure....we have to wait & see if it happens again. He also wants us to videotape it if it happens again. Our video camera is ready!!!
Tomorrow Coby goes to the vet for some more blood work. It's been 10 days since starting his new medication protocol with Dr. Sisson. I guess we're looking to see how his body is responding to all the meds....to make sure his liver, kidneys & whatever else is doing ok! Will let you know how things turn out!!!
Tuesday, June 1, 2010
Good news, Sad news, Good news!
Good news first! Dr. Sisson says that Coby is in remission!!! Because Coby is walking and balancing with no problem and there are no obvious neurological deficits (that I can see), we can now say Coby IS in remission! :-)
Sad news - Coby will no longer be able to go back to Doggie Daycare! He has been going every Tuesday & Thursday since he was a puppy. He loved it there & had a blast every time. He was only nice to the dogs at daycare - he typically doesn't get along with other dogs outside of daycare. I think he has "little dog syndrome". Unfortunately, with the GME, Coby will not be able to get vaccinated for anything except Rabies for the rest of his life. The DHLP/PV vaccine because it is a modified live virus, commonly causes a GME relapse. The Rabies is a killed virus & does not cause a problem. With the inability to be vaccinated and the rules of daycare to be up to date with vaccinations, Coby will no longer be able to go back. That breaks my heart....I know he loved it there!
One last bit of good news....
We have been successful with our website - in just one week we have received $1000 in donations! I continue to kindly ask for your support - please pass on our story to all your friends & family.....pass on our website links....spread the word to all those pet lovers you know!!
Sad news - Coby will no longer be able to go back to Doggie Daycare! He has been going every Tuesday & Thursday since he was a puppy. He loved it there & had a blast every time. He was only nice to the dogs at daycare - he typically doesn't get along with other dogs outside of daycare. I think he has "little dog syndrome". Unfortunately, with the GME, Coby will not be able to get vaccinated for anything except Rabies for the rest of his life. The DHLP/PV vaccine because it is a modified live virus, commonly causes a GME relapse. The Rabies is a killed virus & does not cause a problem. With the inability to be vaccinated and the rules of daycare to be up to date with vaccinations, Coby will no longer be able to go back. That breaks my heart....I know he loved it there!
One last bit of good news....
We have been successful with our website - in just one week we have received $1000 in donations! I continue to kindly ask for your support - please pass on our story to all your friends & family.....pass on our website links....spread the word to all those pet lovers you know!!
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. :-)
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
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 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!
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.
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!
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!
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!
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