In this section, we feature letters written
to us with the author's permission. These letters are heartfelt, as
are all the letters that we receive. We chose these though to
demonstrate that, with help, these affected dogs can live good lives and
even long ones. We hope you find their stories helpful and
encouraging. We know we did at Toby's Foundation.
Toby�s family and friends will continue to answer your email and letters.
|This letter is from Kelly about her dogs Riona and Fearghas.|
I am the proud owner of two epileptic mastiffs. When Riona was diagnosed last February, yours was one of the first websites I found about canine epilepsy. Fearghas was diagnosed in September and this disease has completely changed our lives. I've made Facebook pages for both and will be doing all I can to raise awareness for this disease. We are in Massachusetts, so please let me know if you need any volunteers on the east coast to help raise awareness!
Wanbli, an Aussie mix rescue who had a short life but was fostered and loved by Babette on the Navajo Nation.
Hi there, I am glad I found this website. I was told my puppy was an Aussie mix, a shiny brindle coat of all things. His name is Wanbli and I bottle fed him from two days old. He got epilepsy at three months old and died at nearly seven months old. He passed Nov. 24, and my heart has yet to recover as tears still spill from my face each day. He went into status seizures and never recovered. Rushing him to the emergency vet didn't help either. We were sent home with a slight medication adjustment (1/2 pill of pheno a day addition plus a new drug) and was told he would snap out of it in a day or two even though he couldn't walk, his pupils were dilated and his heart was racing. He was incoherent too. He passed away that evening. When I get some extra money I'll be sure to donate to your research as it seems you are making strides. I feel like I should have done more to help Wanbli, but the strange thing was he seemed to be doing great until that horrible day. He took a small piece of me with him as we were super close, the best of friends. Enclosed is a baby photo. Thank you so much for everything you do. :-)
My husband and I foster puppies and kittens here on the Navajo Nation. Wanbli was one of those rescues.
We are pleased to share with you this letter, about Loki, a police dog with epilepsy, from his partner. We are honored to be listed on Loki's trading card to help in the fight against canine epilepsy.
Hi, my name is J Holdeman a K9 handler with the Cuyahoga Metropolitan Housing Authority PD in scenic Cuyahoga County Ohio (think Cleveland).
My amazing K9 partner Loki, a Belgian Malinois, was diagnosed with epilepsy in Oct 2011 shortly after his first birthday. Needless to say I was terrified, both of the disease and of a premature end to our career together.
Your website was one of the few non-medical based sights I found in the first few panic stricken weeks following his first few episodes. I was both heartened and saddened by your beloved Toby's story.
Loki and I are fortunate that a Keppra regimen has suppressed his seizures without the lethargy associated with some of the other suppression meds. Loki has become fully certified by the state of Ohio and accompanies me daily during our tour of duty.
Our agency has recently approved the K9 unit to purchase 'trading cards' with the K9's picture and a brief bio of the K9 and handler on the reverse. I respectfully request permission to publish your web address at the bottom of our bio preceded by the phrase 'help support the fight against K9 epilepsy'.
|These letters are In Memory of Marley who can be seen in our Aussie Album's memorial pages|
Thank you Pam for all you do! Hopefully there will be a few more donations for Toby's Foundation coming in. No dog should have to live with this terrible disease. Marley was the most special dog I have ever had in my lifetime. I have lost dogs before and it is always hard, but this one takes the cake. I believe he had a purpose in his short life and I am trying to focus on that now. I am sharing with you a video I did of him the day after he left us, I hope it shows how special he was.
Thanks again for all you do. One day the fight will be won.
Marley was just a few months over 4 years old when he had his first seizure. Despite increase in meds and adding new meds, they just got more and more frequent. He was an max doses of Pheno, Keppra, Kbr, and Zonisamide. Occasionally he would have to be hospitalized to receive IV valium to stop close clusters. In the past year he hardly ever went a week without a grand mal and started having more frequent partial seizures. The post ictal period started getting longer. He would run himself into corners, pace, seemed blind and confused for hours sometimes. It was exhausting for all of us (as I am sure you know). We struggled for the past year about putting him down, then he would have good days, he would play, eat normally, and such. He was the happiest dog we have ever had, so even though we knew he suffered at times, he also had such good times. That ate at us every day, should we, or shouldn't we???? It was a fine line. The last few days of his life were really rough, 10-15 GM's, he was just so tired, but he would not rest because I feel he knew he would have a seizure if he did. We finally made the decision the night before that we would take him the next morning. Somehow I think he knew, I laid down on the floor with him and he finally rested. We laid there together for several hours. I will never forget that last night. It was still very hard though as he ate his meal that next morning and his physical body still looked so normal. I know we did the right thing but I still second guess sometimes. I hope he understood and is feeling good now. You are right, he was an angel. God put him here for a reason, he is how I met my husband, so I will forever be grateful for that. Marley taught me more about love, patience, sadness, compassion, hope, and joy, than any other dog or human ever. God knew what he was doing. Marley, 1 other affected relative, and many unaffected relatives gave blood a few years back for research. They have contacted me a few months ago for updates on all of them. So Marley got to help in that way also. Everybody loved Marley, he was a blessing to many more outside of our home also. He will be missed by many for sure. I look forward to the day when we win this battle over epilepsy. My prayer is that no one or no dog will ever have to bare this terrible disease again.
Someday we will meet all our fur babies again!
|Bret's dog Flynn has had good results with the extended release Levetiracetam tablets. Dr. Boothe's report that is referenced in his letter can be read in our September 4, 2012 Aussi-E Update newsletter and on our Research Updates page.|
Dear Toby's Foundation:
My Australian shepherd, Flynn, has been suffering from a particularly nasty case of epilepsy since about a month before his third birthday. Four and a half years later he is still with us, despite scores and scores of horrific grand mal seizures and several hospitalizations. He has had good weeks and months, and once went 11 months without a grand mal seizure. He recently went nearly 11 weeks without a major seizure before suffering a fairly bad one last night. I wanted to do two things: 1. Thank you for your passion for curing this disease in the memory of your beloved Toby and 2. The regimen recommended in your second item below, the one mentioned in the study by Dr. Dawn Merton Boothe, is what I, quite coincidentally, have been following with Flynn with some success. The extended release Levetiracetam tablets have generally done wonders for Flynn, without terrible side effects. I have had to increase the dosages, though, as he has built up some resistance. I would recommend others follow such a regimen to ease the seizures and other symptoms.
Thanks again for your wonderful work.
|This letter is from Debi about her dog, Ripper. Ripper can be seen in our Aussie Album's memorial pages.|
This is a memorial letter for my baby boy, Ripper. He started to have seizures at the early age of 15 months. All testing and imaging came back as idiopathic epilepsy. After several very expensive stays at an animal emergency hospital, I worked closely with my wonderful vets to care for Ripper at home. We explored diets-- I made his own food and biscuits. We decided no vaccines and fleas and tick treatment as they triggered clusters. We never had a month without Ripper clustering 1-2 days. He was a wonderful companion and family dog.
Unfortunately, the week before Labor Day, Ripper started to cluster daily. He was on Phenobarbital, potassium bromide, Valium both orally and rectally. After suffering approximately 30 seizures in a 48 hours we had the hard decision to make. We had Ripper euthanized on September 3, 2011. He would not be 2 until November 11. I miss him dearly and cry daily as I am while writing this. Epilepsy is a horrible disease and I wish for a cure. Donations will be made in Ripper's name. He has a photo in your photo album. As you can see he was and always will be my beautiful boy.
This letter is from Margie about her dog,
Stetson. Stetson can be seen in our Aussie Album.
This moving letter is written from the perspective of Stetson, an Aussie living with epilepsy, by his owner Margie Sterioff who has lived and dealt with epilepsy in her Aussie's life for over 8 years. Stetson turned 11 years old on September 21, 2011. Margie serves on the Board of Directors for Toby's Foundation. Stetson has been featured in many of Toby's Foundation ads.
Hi, my name is Stetson. I've been living with epilepsy for 8 years now. I am starting to show some affects from all the medicines I've had to take, but I've been doing well for the last few years. As I think back on my life, I recall all the things I used to do that I cannot anymore. I had my first grand mal seizure at 2 1/2 years of age. I thought that would be the scariest moment of my life but I had no idea what was in store and how much worse it could get over the next years with all the emotional and financial wear and tear it would have on my family�the never knowing for sure, one minute could be great and the next minute ....
I crawl into my owners lap and beg her to keep the horrible monster away, as I drop into a grand mal seizure. I can't always make it to her when it starts, but when it is over I need her more than anything. When I start seizing I always have what I hear her call 'cluster seizures'. All I know is that it starts and keeps going and going. I beat the battle with one monster and just when things seem to calm another more powerful monster attacks me. I have never been able to stop seizing by myself. My owner always has to do something to me to intervene. Often this results in a trip to the doctor and a change to what she calls my 'drug cocktail'. I take different medicines 5 times a day. My owner has had to change her life to take care of me. With all the worry, the medicines, the trips to the doctors and the ER, all the special routines - I know she didn't think I'd be around this long, but just when you think you have it going great though it all turns upside down in a heartbeat.
A few years ago, I was nearing the end with little or no options left. We had gone through all the standard anti-seizure medicines and some of the newer ones, constantly adding or adjusting my medicine. I was rushed to the ER more times than I can count during those years to pull me out of the monsters jaws. I will never forget my owners� sad face as she lay on the hospital floor with me and all the tears that wouldn't stop. I wanted so much to comfort her but I couldn't. I was so scared; I didn't know what was happening. All I knew was that I needed her non-stop, day and night to help me. I would cling to her every breath. She would sleep on the couch with me because I couldn't stand to be alone. She was the only thing that I trusted to beat that monster.
After these clusters, I barely knew where I was. I would forget how to go outside to the bathroom. She would have to show me what to do over and over. Retrain me. If she could keep the evil monster away for long enough, my brain would slowly begin to understand what I was supposed to do and that it was ok to go to sleep at night. I still need to have a doggie door to get outside every 2 hours though, probably an effect of all the medicine I take. I can't take the heat very well, so I need to be able to get into the house where it is cool, quiet and safe. I need to eat and have medicine at the same times each day to keep my blood levels even. Our life has never been normal due to all the special routines we have to follow, but keeping the seizures at bay would be as close as we could get, while always wondering how long or short this time would be.
On top of all that, my best buddy turned on me. We grew up as pups together, romping and playing and loving each other. As soon as these seizures started, my puppyhood buddy tried to kill me. I am afraid that without our owner helping me, he would have succeeded. I defend myself, but I am weak and unsteady with all the medicine I take. Our owner has had to keep us separated. Whenever we move, she has to rebuild fencing in the yard and also in the house. We no longer can go on walks together, no longer can be in the same room together, no play, no longer do we all sit together on the couch and snuggle. Our owner divides her time so we both get enough attention. She has somehow found a way to make us both happy and loved.
I've also heard her talk to my breeders as they would often call to check on me. I could tell that whatever was happening with me affected and caused pain to them as well. I was grateful they did everything they could to help and support her. This disease has altered in many ways my life, my owners� life and the lives of my breeders. Everyone that loves dogs and our breed is affected by this disease.
This disease is different from others because just when my owner thinks about putting me to sleep, she knows that though today may be bad, tomorrow may be great with me feeling 100%. No one knows how long or short that time will be. It's emotional havoc for everyone. I can sometimes see how it all wears on her but we have such a great bond, she looks into my eyes and can tell that I am so happy. I smile all the time and that makes her smile too. I know how lucky I am to have the life I do so I tell her every day by gently nuzzling her hand in the only way I know how to say "I'm sorry...Thank you for loving me so much."
We really need to find the genetic markers for epilepsy. Please support epilepsy research efforts! We are learning more every day and eventually hope to be able to identify this horrible disease - the first step in eradicating it.
|From Robin on the passing of her Sweet ACE. Robin first wrote us about Ace in 2005. Please see that letter too. - Ace can be seen in our Aussie Album's memorial pages|
October 2011 I sent a letter to Toby about my sweet Ace 10/6/2005 and sadly I have a follow-up letter now. My sweet Ace left us July 20, 2011 and went to Rainbow Bridge. It has taken this long for me to be able to write this email. I can�t express the hole he has left in our hearts and lives. We loved him so very much and right now I can�t imagine not having him. But they are only given to us for a short time and we have to cherish the time we have with them. I have loved Ace from the first time I saw him on the website at two days old and knew he was to be my dog. I wasn�t even looking for a dog had no plans of getting one at that time but then I saw him and it was love at first sight. Long story short the older he got the more I loved him and knew that I had made the right choice in taking him. The day he arrived I cried because he was more than I had expected. I looked at his face through the crate when I picked him up at the airport. The moment I looked into his eyes I knew it was going to be a very special relationship. He has never disappointed me a day in his life. He has always given me more than I could ever ask for. I remember taking him to an AKC Rally trial the day after he had seized all night. I was torn if I should take him or leave him with Al. Al told me Ace would not be happy if I left him. So I took him with me and decided to go ahead and compete. He showed like a dream and placed 1st that day. How much more could you ask for out of a friend. I cried that day when I saw his placement. I couldn�t believe that with the night we had that he had come out and showed like that. But then that was the kind of dog he was. I cried the night he left and have many days since and will for days to come I am sure. When it is feeding time and he isn�t here, when I take the dogs out and he isn�t here, when I sit in the yard with all my boys sitting around my chair he isn�t there. I know life goes on but I really miss my friend. Good bye for now my sweet sweet friend I will hold you in my heart until we meet again. Sleep well and know that you will always be love. Robin
I sent a letter to Toby about my sweet Ace 10/6/2005 and sadly I have a follow-up letter now.
My sweet Ace left us July 20, 2011 and went to Rainbow Bridge. It has taken this long for me to be able to write this email. I can�t express the hole he has left in our hearts and lives. We loved him so very much and right now I can�t imagine not having him. But they are only given to us for a short time and we have to cherish the time we have with them.
I have loved Ace from the first time I saw him on the website at two days old and knew he was to be my dog. I wasn�t even looking for a dog had no plans of getting one at that time but then I saw him and it was love at first sight. Long story short the older he got the more I loved him and knew that I had made the right choice in taking him.
The day he arrived I cried because he was more than I had expected. I looked at his face through the crate when I picked him up at the airport. The moment I looked into his eyes I knew it was going to be a very special relationship. He has never disappointed me a day in his life. He has always given me more than I could ever ask for.
I remember taking him to an AKC Rally trial the day after he had seized all night. I was torn if I should take him or leave him with Al. Al told me Ace would not be happy if I left him. So I took him with me and decided to go ahead and compete. He showed like a dream and placed 1st that day. How much more could you ask for out of a friend. I cried that day when I saw his placement. I couldn�t believe that with the night we had that he had come out and showed like that. But then that was the kind of dog he was.
I cried the night he left and have many days since and will for days to come I am sure. When it is feeding time and he isn�t here, when I take the dogs out and he isn�t here, when I sit in the yard with all my boys sitting around my chair he isn�t there. I know life goes on but I really miss my friend.
Good bye for now my sweet sweet friend I will hold you in my heart until we meet again. Sleep well and know that you will always be love.
"Good bye for now my sweet sweet friend I will hold you in my heart until we meet again. Sleep well and know that you will always be love."
I am still a little slow answering emails about Ace, but it is getting better each day. He was my heart dog so I cry when I talk about him, or write about him. I am actually considering writing a book about Ace�s life. He impacted so many people because he still went to shows/trials with me and people watched how his life and body were eaten by the dreaded disease.
We were blessed as we actually had one full year in the middle of it all where he stopped seizing for no reason. He had seized for two weeks straight with multiple grand mals every day and the one day just stopped. Then one day it all started back as quickly as it stopped. We have no idea what stopped the seizures and kept them at bay for a year, or what made them start back after a year. But we really enjoyed that year. He had a rough life he was 2 1/2 when he start seizing and would have been 9 the 29 of August had he not died in July.
Yes please add my letter to the website with the photo I sent you or Ace or the one I have attached. I love both of these photos of him as both of them have such fond memories. The one in the tub he had been working sheep, the one thing he could always do even after the seizures, and was cooling off. And the one attached of him playing in the snow. He had such a great time that day I think he has a smile on his face in the photo. And I think it shows the deepness of his soul in his eyes. He ran in the snow until his coat was wet.
I remember how I loved to hold him tight and sink by fingers into his coat and bury my face in his fur. There was nothing like that after a long day at work it was like my troubles and stress just faded away in his fur. Or just sitting on a hill overlooking an agility trial, that he was able to compete, where I just sit with him lying beside me with his head in my lap. I remember that day there were several people who didn't know us came over to tell me what a beautiful boy he was. These are the memories I am trying to hold on to now.
Remembering competing with Ace at a Rally trial and all of the sudden he realized that his pet sitter was in the obedience ring next to us competing with her dog. He began to bark wanting her to look at him. She never stopped competing and Qed but really messed up her dog because of all of his barking. He just couldn't understand why she wouldn't come over to him and pet him. She and I both laughed after we got out of the ring, I am glad that she could laugh about it. But that is just the way Ace was. He loved the people in his life.
I am sorry I can go on all day about my sweet boy. He was a very big part of my life. He and I tried to educate people about the disease every time we had a chance.
I can only imagine how much you miss Toby.
Please add either the photo of Ace in the tub or the one attached of him in the snow beside his letter. Please add under his photos. Good bye for now my sweet sweet friend I will hold you in my heart until we meet again. Sleep well and know that you will always be love.
I will be holding a raffle in honor of Ace at our club trials/shows the end of this month to try to raise money or research and to educate people. I can't rest until we at least have a test to know if the dog is a carrier or not.
Thank you for all the work you have done and know that we are all thankful!
"Good bye for now my sweet sweet friend I will hold you in my heart until we meet again. Sleep well and know that you will always be love."
This story was sent to us from Margaret and John Wilkinson in Scotland. It is in Loving Memory of their dog Megan.
Megan's story "Never Forgotten" by Margaret Wilkinson was published in The GSD National Magazine Official Journal of the German Shepherd Dog Breed Council of Great Britain Volume 25 No. 8 August 2011, printed in England and is distributed Worldwide. It is reprinted here by permission. John and Margaret Wilkinson have been working to raise awareness of canine epilepsy in the UK and the importance of getting pedigree checked by the Breed Health Co-Ordinator.
This letter is from Cali's "Mom" - Cali can be seen in our Aussie Album's memorial pages
We got Cali from the Mariposa SPCA in California on May 1, 2004. They thought she was 9 months to a year old. She'd been picked up by the dog catcher and no one came to claim her. Her seizures didn't start until she was about two years old. I thought she was dying when she had her first one, and a part of me died with each successive seizure. Her seizures were always major grand mals, and were never regular, sometimes monthly, sometimes more often, we had a year seizure-free from July 2009-2010--not sure exactly why. But then her liver began to fail from the PB and she started having worse seizures, more often. Even after we got her liver to rebound, the seizures kept getting more severe & frequent until the final endless cluster on Saturday March 5th. She was euthanized early on the 6th.
Her motto seemed to be "What are we gonna do now that's fun??"
We miss her so much, and we are soon to adopt a new Aussie puppy ( Cali said it was a good idea). We will pick him up on May 7th.
This is a letter from Karla about her Yorkshire Terrier, Princess Baby
Thank you for your kind words and
great suggestions... Toby's life was
important and he is now saving others through your love and
My husband loves her just as much as I do... but was unwilling to give meds until I told him about the 3,000. bill... He is now participating fully by helping me get her the meds at the same EXACT time every day... so far so good... but I am never optimistic...always holding my breath for the next seizure... she also has other seizure activity...when she is not in full seizure I catch her having like a Turrets syndrome movement of her head...over and over....those are smaller ones... then I also see agitated behavior sometimes as much as 6-8 hrs before a big seizure... that is the time we give her an extra dose of Phenobarb and hope for the best... we keep trying different things with the meds and see where it takes us! She has not been on the Potassium Bromide as of yet... he was trying the Keppra first and we use a generic brand so it's not nearly as expensive... we are spending on average $100 per mo on her medication to make sure she gets the proper care! Princess Baby started her seizures at age 5.
Thank you for your guidance and I
appreciate your insight... I am a fighter and so is she... I am not even
close to being ready to let her go...but the signs are all there... it's
only a matter of time...which I will do my part to make it longer rather
Karla and Princess Baby
|Below is Tinka�s Story from Carina Josefine in Norway|
Unfortunately the seizures started again. It wasn't just a bit of
wobbeling and throwing up anymore, she had real seizures. She would lose
control of her body, unable to walk or keep her head up. Her body would
go all stiff and her feet would peddle. I have no idea how many times I
ran down the stairs to my mum with the seizing dog in my arms: "She is
dying!". Some times she would have clusters, driving us to the vet in
the middle of the night. It was after one of these nights we also put
her on potassium bromide.
It became very clear that her clusters would increase when she was close to getting in heat. Once it properly started it would calm down. We were very scared to let her have the surgery because of the narcosis, that we had heard could be risky for an epileptic dog. However the connection between her hormones and the seizures were so evident we finally decided to go through with it. When the vet phoned us and let us know Tinka came through the operation ok, we started crying and my mum drove on a red light. The periods where we would have cluster after cluster, day after day, ended after this.
She would still have seizures, and sometimes still clusters. I would sit there with the rectal valium in one hand, and with the phone in the other, crying to my vet, who tried to be my vet, my friend and my therapist all at once. He did a great job and got me through alot of panicky nights. Tinka became incredibly spoiled. She could never be alone. She wasn't one of the "dogs", and she clearly let us know that if we, God forbid, tried to treat her like a dog. At night she slept on my pillow so I felt certain I would wake up if she had a seizure.
While all this was going on, we still managed to live our lives the way we wanted. Me and Tinka both are way too stubborn to let epilepsy get in the way of anything. We did agility competitions, and did really well too. We even went to Spain together. The second time I went to Spain however, Tinka had a 6 month long seizure free streak, and ( let my best friend watch her. But not without giving her a 20 pages long "job-instruction" with do's and dont's, what to watch out for, and important telephone numbers. Of course my friend had to take an oral exam in this before i could trust with my special dog.
"breakthrough" for me was when I discovered the Epil-K9 mailing list.
All the thoughts and the worries I thought i was alone with, turning my
life upside down for a dog... All of a sudden I found people around the
world with the exact same thoughts and worries, also turning their lives
upside down for their epileptic dog. I read everything about canine
epilepsy I could find. I was sat for hours just searching the internet
for resources, facts and other peoples
The more I learned, and the more seizures
me and Tinka got through, the more confident I felt, and little by
little I learned how to cope with Tinka's seizures better. We got into
certain routines. When I felt safer, Tinka also felt safer. The same
routine will of course not work for every dog, or every person, but for
us the following has become a good way of dealing with the monsters:
|Diesel can be seen in our Aussie Album's memorial pages. This letter is from his foster parent, Marla of K-9 PlayTime, Inc.|
November 30, 2009
�I am mailing a donation in memory of my BELOVED friend Diesel Blaige who had to be euthanized last week at the RIPE ole age of THREE due to his increasing CLUSTERS of that didn't seem to respond to any amount of meds. He was my MOST favorite, inspirational foster EVER, adopted by my BEST friends...I was SOOOO excited to be able to share the rest of his life and then BAM!
IF you are able/willing PLEASE send a note to his parents.
Also, I would LOVE it if you wanted to add
his story and photo to your website. Thank
YOU for fighting this AWFUL disease!!!�
|Indy can be seen in our Aussie Album's memorial pages.|
September 23, 2009
My wife and I have been married for 25 years and we never had kids. She was always reluctant to get a dog, so when she finally said yes it took me a month to decide on which breed. The aussie stood out the most to me and I'll never get another breed now. His seizures started last year July and after doing the whole MRI and spinal tap thing to rule out a tumor we knew that he had epilepsy. Indy went with me everywhere I went. We took him to all of our family outings, whether at my sisters or camping. He was the only dog in the family that went to Easter and Christmas get togethers. If he wasn't with us, people always asked where he was. He was having clusters of 4-6 seizures every 2 weeks until May when he started to have 8-10 every month. The weekend of August 13-16 he had a total of 20 seizures. We decided that that was enough for him. The vets couldn't control them and he was a shell of himself. It broke my heart to see a dog that could chase down any Frisbee or soccer ball with ease turn into a dog who stumbled when he took off running most of the time. We still cry when we talk about him. But the good news is that we're are getting another puppy on Oct. 1st. I'll send you a picture. Thanks again for your comments on our Indy. I've included a picture of our new puppy. You can use either picture. The one was taken at Lake Tahoe when he was still a puppy. He truly was a beautiful dog. People stopped us all of the time to ask about him.
Raymond and Denise Armstorff
|This letter is from Nancy about her dog, Mardi. Mardi can be seen in our Aussie Album.|
November 11, 2009
I saw on the Aussie epilepsy a secret in the hope that those who do keep it a dark secret will see that a dog can have a happy life filled with love. We have given blood in the hopes of stopping this horrible disorder. Let us know how we can help. Site that you are looking for new ideas for ads. Our dog Mardi was honored by her breeder, who by the way took every care breeding the litter, and her friends in the current Aussie Times, the Agility issue, for finishing her ATCH. We would be proud to help, as we have never kept Mardi's
|Skye can be found in our Aussie album's memorial pages.|
Please receive this donation in memory of our rescued two-year old "Aussie," Skye. The work you and the University of Missouri are doing is so important! We'll never know if Skye's horrific rages were the result of nature (epileptic or canine rage syndrome) or nurture (abuse before we got her), but we want her too-short life to count for something.
|This letter describes an epileptic Aussie living in Finland. Santtu can be found in our Aussie Album's Memorial Pages.|
November 14, 2006
|This letter describes another dog affected by epilepsy. This touching letter is written by Zephyr, the affected dog's sibling.|
When my parents brought me home, I was delighted to find I had a black tri mini Aussie sister. We had a lot of fun chasing and playing and running through the house. I can just see her with a toy in her mouth dribbling two tennis balls. When I was five months old and she was seven, my mom saw her have three partial seizures. My mom is an occupational therapist and was confident our family could handle this. When my sister was eight months old and one week before she earned her Canine Good Citizen award, she had her first grand mal seizure.
Months went by and between her seizures we had a lot of fun. After diagnosis my sister graduated from beginning, intermediate and advanced agility. Through the Delta Society, she was certified as a therapy dog. We enjoyed hikes in the mountains and walks to the baseball diamond. All of this paralleled countless blood tests, Phenobarbital increases, the eventual additions of Bromide, Felbatol and Neurontin to her daily medication regimen and relentless seizures. My sister went to a neurologist at Colorado State University but she was never stable.
In the final months of her life, my parents saw three seizures a week, then three a week end, then three a day. I saw more because I was home. Finally she developed either psychomotor seizures or dangerous post ictal behavior. She followed her second to last seizure with 11 hours of running, pacing and whining. She looked like a deer in the headlights. The rectal Valium my mom used in emergencies had absolutely no effect.
After 16 months of aggressive treatment, my parents knew they could not make this stop, they could not make her better and they could not keep her safe. Hearts broken, they delivered her to the Rainbow Bridge on October 4, 2005. She was almost 25 months old.
My sister was the dearest, sweetest, most affectionate dog ever even if she was bossy. My mom says she was wicked smart and that she had a black belt in manipulation. When I hear that I know she is forever loved. Since her death, I have done my best to step up to the plate to take care of things. My sister�s DNA and that of her family are at UMO and I understand they are very close to a breakthrough. Please look for our donation and use it to fund research there. I �see� a future free of epilepsy for the Australian Shepherd.
Zephyr, the sight hound
|This letter describes another young dog, Ace, with epilepsy and how this cruel disease has affected his family. Ace can be found in our Aussie Album's Memorial Pages.|
My sweet Ace was born August 29, 2002 one of a litter of six males. He stood out from the moment I saw him. I first saw a picture of him at 3 days old over the internet and I fell in love with him at that moment. We were not even planning to add another dog to our household at the time. I held off telling myself that we didn�t need another dog for a couple of weeks. Then I saw a photo of him at 3 weeks and that was it, he was to be mine. I showed my husband his photo and he told me to contact his breeder and tell her we wanted him. We made the arrangements to fly him in when he was 10 weeks old, and the moment I saw him in the airport I was just blown away by him. He was everything I had wanted in a dog. I called my husband on the way home with him very excited telling him Ace was as beautiful as we had thought. I called his breeder and told her in tears that I could not believe that I owned a dog of this caliber. It was truly love at first site with him. He matured and never disappointed me. Everything I tried to teach him he learned and did it with a passion. In obedience class when I was teaching him the front command at 5 months old it was amazing to watch him learn. You could see his eyes light up when he figured out what I wanted him to do. You could actually watch him learn. Then at 9 months old he took his first Reserve win in conformation. He went on, with very limited showing, to earn a couple of other Reserve wins and two three point majors. We were on our way for sure. Then we started competing in the agility trials he was just awesome and such a joy to trial. We went to an agility trial April 2nd, 2005 and he finished 4 agility titles that day, 2 NADAC and 2 ASCA. He took first place in 3 runs that day. We had an awesome day. Then everything came crashing down April 4th 2005 at 7:00AM. My husband came screaming through the house that Ace was dying. My heart sank, I was not dressed and the dogs were outside going potty. I could not find my housecoat fast enough, it was only seconds but it seemed like hours. By the time I got to him my husband was already at his side. He thought that Ace was having a stroke. I looked at him and told him no it was a seizure. The seizure ended and my husband and I both cried. We took him to the vet who told me that it was most likely EPI, but we would wait and see if he had another seizure. Sure enough April 10th, 2005 at 11:00PM another seizure, so he started on medication the next day. We have been dealing with this ever since then. Currently he has seizures about every 3 to 5 weeks. We have gone through the guilt of what did we do wrong. Was it something we feed him or didn�t feed him that caused this? But we have come to the realization that we, nor anyone else, did anything wrong it was simply in his genes. His breeder was devastated as well, but she has been VERY supportive. She was responsible and called everyone who owned a sibling or half sibling to let them know about Ace. We have a very strong support group and I am thankful for that. But we are blessed as for us there is life after seizures. This summer Ace competed in Rally Obedience for the first time and took First place his first time competing. I cried when they handed me the first place ribbon. Each run is much more precious these days as I don�t take any of them for granted. Then the next day he went in and earned his second leg toward his Rally title. He will also be competing in the Pre-Nationals agility trial, so just because your dog has seizures don�t mean the end of the world. We simply had to learn to be thankful for whatever he could give us. If it is just to be our companion or maybe to compete at some level. Bottom line is I will never regret picking this boy to join our family. He has been everything I have ever dreamed of in a dog. We will love him for as long as we have him and try to do what is best for him and what he enjoys. We probably won�t finish his Championship because he doesn�t enjoy conformation. As for agility and herding we will move forward with that at a pace that will depend of Ace. He loves both of them and I think it would hurt him more if he was not allowed to continue with these. We will continue with Rally Obedience but I don�t know about traditional Obedience at this point, once again it will depend on Ace.
So we are still thankful for our sweet Ace. He is still just as sweet and loving as he ever was, and is a very silly Aussie with a sense of humor. He loves to make us laugh and we enjoy laughing at his silly antics. Ace is a joy to live with and we will continue to treasure each day with him.
God bless you,
|Murphy lived to almost 9 years old. The two letters from his "Mum" about how he came into their lives and about his passing are used with permission. Murphy is shown in the memorial section of our Aussie Album.|
October 29. 2004
My sweet boy, Murphy, died yesterday. Murphy lived with epilepsy for seven years (he would have been nine this January). A tremendous level of drugs were required to allow him even modest control. It was always a balancing act between number of seizures and level of ataxia. His seizures lately had increased in both type and frequency. We knew we were going in a bad direction.
Murphy's liver was finally showing effects of all these years of Pb and then Felbatol, but that was the least of his trouble. During a series of seizures last Friday, he bit his tongue and aspirated a large amount of blood and saliva. He developed aspiration pneumonia, but that, too, was the least of his problems. Upon examination, his vet discovered he had a very irregular heart rhythm, sort of like a jackhammer. His heart rate was alarmingly high, yet he was barely circulation blood and had a very weak femoral pulse. Something, along the way, had damaged his heart. Murphy was in heart failure.
We were told another seizure could be terrible for Murphy and us. We'd been so lucky to be able to control his seizures at home, never needing to rush to the ER. We made the decision to not let this be how Murphy spent his last hours on this earth.
We wanted to make Murphy as comfortable as we could and spend a few more days loving our boy. Antibiotics helped his pneumonia and he did perk up just a bit. When our vet saw him on Wednesday he had 4 pounds of fluid in his belly and was showing signs of discomfort. For the first time in his life he didn't want to eat. I took him home and spoiled him rotten for the next 24 hours. All he wanted to eat was poached chicken and pizza crust, so that's what he got. He watched my every move and wagged his little stump every time I told him what a good boy he was. He even pushed his tennis ball into my lap one last time.
On Thursday morning our vet, our dear friend, came to our home and helped us say good-bye to the sweetest Aussie we've ever known. He died with his head resting on my arm, my husband and I both petting him and me telling him how much I loved him. We told him all the wonderful Aussies that had gone before (Joey, Elsa, Bert, Cassie, and J.D.) were waiting for him.
Murphy was the kindest boy. He never met a man, woman, child, dog, cat, or bunny he didn't love. Somewhere, there are six beautiful Aussies running strong and free. They all smile with shear joy of flying over the ground with strong legs and healthy bodies. And the biggest grin of all is Murphy's. This is what I feel in my heart and what I see in my mind's eye. And that is how I'll remember him all the days of my life.
Hug your pups for me -
It was suggested to me recently that perhaps, in some way, we are chosen by our special pups. This got me thinking about my epi angel, Murphy.
Years ago, very dear friends had a beautiful litter of Aussie pups. They invited me to come to lunch, so I could see them at that wonderful, roly-poly stage at 6 weeks of age. I had no intention of getting a puppy. I already had 3 Aussies. Besides, I was sure they were all spoken for. When I arrived, all the little tykes greeted me, but one in particular took a huge liking to me. He was a fluffy, adorable red merle. Even after the other pups wandered off, he followed me everywhere. All through lunch he watched my every move, and gave me the "full body wiggle" every time I spoke to him. I couldn't stop thinking of him all the way home and called my friends the next day. After jokingly accusing them of conspiring to make this happen, we all agreed the red merle boy must be my puppy.
Twenty-one months later, Murphy had his first seizure. My friends were devastated. They couldn't stop apologizing. Murphy was the only pup in the litter to have seizures. All of them were spayed and neutered. As the years went by, we often talked about Murphy's life with me. (He was almost 9 years old when he died of heart failure). They always said how lucky he was that I was him Mum. We agreed with all our hearts that he picked me. Yet I always felt that I was the lucky one. If I could go back to that sunny yard full of puppies, even knowing what lay ahead, I'd pick that wonderful boy again.
|These letters are stories of longevity and survival in the face of epilepsy.|
|Blue is 10 years old and is shown in the Aussie Album.|
|Blue's Mom and Dad are
writing this short letter to maybe help encourage other Australian
Shepherd owners who suffer with their dogs through seizures.
Blue, a Blue Merle, was born September 1, 1995. We brought him home at ten weeks and everything was wonderful. We never had to house break him. He was full of energy plus. He went through the four classes of obedience and was outstanding. He was the smartest dog we had ever had. He loves everyone and always tries to please. He is great with other dogs and children. When I say dinner is ready, he runs to get Dad.
Then one Saturday night we were getting ready for bed when suddenly Blue started thrashing uncontrollably. He was almost two years old at the time. The vet was closed and we were panic stricken. He finally managed to calm down only to have another attack. We managed to find an emergency hospital and were on our way. In the car he had one more seizure. At the hospital they said he had epilepsy and kept him until Monday when we could take him to our own vet. He evidently had several seizures while under their care. Monday we took him to our vet Dr. John Agostini in San Clemente. They made many tests and tried different dosages of medicine. Finally he was able to come home. Every so often he would have more seizures; we had pills to give him and then the vet would adjust his medicine. This went on quite often until Dr. Agostini was finally able to get the dosage that worked. Blue has blood workups often to make sure all is well in his system. He has been on Phenobarbital 64.8 mg., two pills in the morning and two pills at night. Also, Sodium Bromide 250 mg. once a day which adjusts as needed.
Blue loves walking and riding in the SUV. He sits like a perfect gentleman. You would think he is harnessed in but he is not. He is the love of our life and on September 1, 2005 he will be 10 years old. We have been blessed to have him this long and we only pray he stays a little longer. He is our beautiful boy.
Good luck with your wonderful companion and always make a routine that gives the medication at its due time everyday.
Betty and Frank Venclik
|Samee is 9 years old and his picture can be found in the Aussie Album.|
Dearest Pam - It's Lynee and Samee again - I just got off the Toby
Foundation web site with tears in my eyes. You are truly special to
tackle this disease as you have. I would love to briefly tell you my
Samee's story - He will be nine on August 2nd, and I am truly grateful for
the time I have had with this wonderful pal. It has not been easy on my
husband and myself, but I can't believe nine years has gone by.
We got Samee from a supposedly "reputable" breeder - to this day, I have not spoken to her since - I believe she had to know this was in the lines, as Samee was from a litter of five, his sister had it also, she was put down. Anyway, we brought this beautiful tri-black Samee home to my household of a German Shep and Wheaton Terrier at the time. They all got along wonderfully, although my Wheaton was very old and Samee was sort of the replacement dog, Brandee died a week or so after Samee arrived, I truly believe Brandee was satisfied with his replacement!!! LOL.
Samee was 18 months when he had his first seizure, like you I didn't know what I was looking at as he began to run in circles, the circles got smaller and smaller until he fell over paddling with foam coming out of his mouth. I truly thought he was dying before my eyes. Then just as it had started, he popped out of it and again was my wonderful Samee.
He was put on pb medication two months later when he had his second grand mal. My vet did not know anything about epilepsy or kbr etc. We all just sort of felt our way through this disease. Samee had one status episode over a weekend - I thought he was going to go or I was going to have to make a decision. After a weekend in the ER being pumped with valium and pb (they ran out of both, can you imagine!!!) He again popped out of it and after one week home and being very disoriented due to all the meds, I decided it was the last time I would go to the ER - I could do the same thing they did at home and it would be much less stressful for Samee. I had already found the wonderful Epil-k9 list and I do believe I could not have gotten through nine years without them. I have used so many of their tips, i.e., breyers ice cream etc. I have tried a lot of things over the years, i.e., rescue remedy, melatonin - all seemed to help at the time.
Samee seizes about once a month - I seem to have it under control for him, I takes a lot of meds, he seems to tolerate them well. I don't let him get too stressed out - when he does seize, we have our protocol - mega doses of meds, ice cream, a butorphanol (muscle relaxing drug) to help him sleep it off. This all seems to get him through without clustering. I believe Samee has already won the battle - to have survived this for nine years - he is a happy, wonderful dog. My husband and I have decided as long as his quality of life is good, we will continue what we are doing.
Samee shares his life with one more GSD, Karlee who is seven. We live in Connecticut now, but will be relocating to Sarasota Florida in a few months, something we have been working toward for over four years. I would have more dogs, but I want to get to Florida with just the two for now and let Samee live out his life without too much stress.
I could go on and on with stories and episodes, but you get the picture. You are doing a wonderful services for us Aussie owners. I love reading all the stories. Keep in touch. Will get Samee's picture to you asap.
Stay well, hugs and waggles to Toby.
Lynee and Samee, CT
is on PB/KBR twice a day - 120mg/1000mg AM/180Mg/1000 mg pm
|This letter dates the problem of epilepsy in Aussies back to 1984; this is the earliest case we have received thus far. The writer is a single parent and she credits her local vet for being instrumental in helping her handle the situation. The dog's name is Mandy and she is shown in the memorial section of our Aussie Album.|
just happened upon a copy of the Sept/Oct
Australian Shepherd Journal and the 1st thing that caught my
attention was the "In Memoriam" for Shadow. What a cutie.
Next I saw the Feature Article on The Face of Epilepsy.
What a wonderful article. I too understand the suffering of living
with and loving an aussie with epilepsy. In 1984, after researching
many dog breeds, I put a down payment on a puppy from a litter born just
before Thanksgiving. I wanted a female and a blue merle
(preferably w/ blue eyes). This litter of 7 had 2 blue merle
females. I was drawn to one but the breeder said she would have
brown eyes and encouraged me to consider the other one if eye color was
important. A friend was with me who also suggested the 2nd
female. I agreed and left my down payment. On Christmas
eve I drove back to the breeders to pick up my puppy to have here for my
daughter for Christmas. Everything was set for me to take my
new puppy home except when I got there it was the other puppy who kept
following me. She had been my 1st choice until the others changed
my mind. This time I wouldn't be swayed. I told the breeder I
changed my mind and wanted the brown eyed one. I believe it was
fate. At 11 mo she had her 1st seizure. It wasn't real
bad and I wasn't sure what had happened so I did nothing. 3 mo
later another small seizure. then at 1 1/2 yr of age she had her 1st
grand mal seizure. It was Memorial Day and about dinner time.
It had been a hot day so when I called the emergency vet office they told
me it was probably just heat related and put some cold compresses on her
face. She couldn't get up and just laid there. I freaked
and called my regular vet at home. He told me to meet him at his
office. He was the one who told me that it looked like she had had a
grand mal seizure. We discussed the other small seizures and he said
she might have epilepsy. He kept her there for several days and when
I picked her up he confirmed it. I don't remember what tests he did
or anything other than he said her condition could be treated with
medication. It took awhile to get her on the right meds and
regulated. Even then once or twice a year she'd have a grand mal and
would need to be hospitalized. I can't speak highly enough
about my vet and his help and support through the entire life of my dog.
I could call him anytime day or night (usually it was in the middle of the
night) and he'd get us through it. I lived daily with the fear I
might forget to give her her meds and that it would trigger a seizure.
She was the best dog I ever had. So many people would ask me why I
didn't just put her to sleep. They knew the cost of medication, the
toll of guilt that I may have done something to trigger it, the worry of
how long she could live like this. I told them it was fate that had
me choose her. If she had gone to someone else they may not had
dealt with her condition. The breeder was of no help. I think
they resented me calling them when I found out she was an epileptic.
I didn't want to return her or get my money back. I just wanted to
know if any of the others had the same condition and to notify them for
future breedings. They said none of their dogs ever had epilepsy.
All in all she lived 12 years. If she was alive today I would
certainly donate her blood to help the cause. I would very much like
to send a picture of her for your photo album. I will try and see if
I can scan it and email it. If not is there an address I can mail it
to? Today I have another aussie and a aussie cross. Both
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