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The Keoni Project: Epilepsy in the AWS

 

The First AWS Health Project

AWS Partners started "The Keoni Project - Epilepsy in the AWS" as the first health study for American Water Spaniels.  This was done with the support of the Canine Health Foundation and the University of Missouri College of Veterinary Medicine.  The following article is Keoni's story and how you can help in the fight against canine epilepsy.

by Beth Lagimoniere

Am/Mex CH California Wavecrest Keoni, PC, CGC, DPP…epileptic.  This news hits many more owners and breeders of AWS than I care to think about.  It is one of the most devastating and deadly diseases afflicting canines today.

Where It All Began

 I have had dogs all my life.  I first became familiar with competitive obedience when I had a Rottweiler and joined the local kennel club.  Together we successfully earned the Canine Good Citizen certificate, played a little in agility, and were well on our way in training for a CD and CDX when he incurred a spinal disc injury that left him partially paralyzed.  We worked hard for his health recovery and when he was 4 years old, we titled in Novice A for a CD.  After that we could go no further since any jumping activities in pursuing a CDX could risk his health. 

I had become very active in our local kennel club as one of their obedience trainers.  I needed to have a dog involved in competition in order to continue training classes and pursue titles.  On went the search for the perfect dog.  I researched a variety of breeds looking for something smaller in size, low coat maintenance, bright, willing to train, and listed as having very few health issues.  I narrowed it down to a couple of breeds out of the Sporting Group and ended up choosing the American Water Spaniel. 

On May 19, 1996, I thought the perfect dog was born: California Wavecrest Keoni.  I intended to try my hand at conformation while simultaneously training for obedience.  When Keoni was almost a year old, I was introduced to clicker training.  My pup was clicker-crazy.  He was easily trained and had so much spirit.  This dog had potential!

In January of 1999, at 2 ½ years old and all in one weekend, we achieved a Mexican Championship earning a grade of Excellente on all 4 days, and a Mexican PC (CD equivalent), earning placements all 4 days, including a High in Trial. The next goal was for AKC Championship and start training in Open obedience.  In August of 1999, at 3 years old, he earned CGC (Canine Good Citizen) and DPP (Delta Pet Partner) certificates at the AWSC nationals.  After watching more of the hunt test events, I knew he could also accomplish those titles, so a Started Dog was added to the list of goals.  This was, indeed, the perfect dog for me; my everything dog.

When It All Changed

In October of 1999, it all changed during the night with a strange sound coming from one of my dogs.  I jumped out of bed, flipped on the light and saw my little brown dog sitting on the bed, head in the air, smacking his lips as if he was choking on something, and drooling profusely.  When I opened his mouth to check, I had recollections from my nursing experience when I worked with epileptic patients.  His tongue was rigid, and his “air biting” was uncontrollable.  It was a seizure.  Within moments he collapsed on the bed, neck twisted backward, body rigid and tremoring.

The vets began the process of testing for anything and everything that may have caused it.  All results were negative.  One month later Keoni again had another grand mal seizure.  Within 13 hours of that, he had yet another.  I became familiar with the signs indicating that he had seized, and I realized he had experienced a few of these previously when I had not been present.  After more testing and more negative results, I had to face the devastating fact that he was epileptic. 

How It All Progressed

This news was a shock to me, as well as Linda Ford, his breeder, as she had not known of epilepsy in her lines prior to this.  When I finally got through the denial part of accepting Keoni’s fate (yes, the dog owner does experience denial), I found that I didn’t feel angry as most people would expect.  I kept insisting to myself that there must be a reason that this was happening to us, wondering what road this was going to take me down.  Linda and I started teaming up and learning more together, reading an endless number of books and articles, searching the web, attending a genetics seminar, and openly discussing Keoni’s illness.  Linda and I had ongoing discussions about what a sad situation this was, but that I would feel somewhat rectified if something good came of his being diagnosed with this awful disorder.  Linda dubbed our efforts “The Keoni Project”.  Already I felt better knowing that good could come from my little guy’s dilemma.

The more openly I spoke about epilepsy, the more people began approaching me about their health concerns in the AWS.  What we have discovered is that Epilepsy is more prevalent in the AWS than we were initially aware of.  So far, 21 dogs have been identified as either currently having seizures or had already died from them (this has been updated to 35 as of July 2004).  This is just from a small group of people that have come forward which indicates the actual number is probably much higher.

Thanks to resource referrals from Lara Suesens and Jonne Adams, I began working with other breed club members to investigate how they were addressing health concerns in their breeds.  Other breed clubs, as well as the AKC Canine Health Foundation, agree that Epilepsy, being as debilitating and devastating as it is, should be given high priority.  They have seen the ramifications of ignoring the presence of Epilepsy in other breeds.

Through my research, I came across a familiar name from an epilepsy email support list: Liz Hansen.  She now works for the University of Missouri as Dr. Johnson’s Coordinator of Veterinary Information.  With her assistance, we have started a DNA bank for the study of epilepsy at the U of MO.  The first donated AWS blood sample arrived on October 20, 2000.

What is often considered to be a “short-coming” of having a small gene pool is what interests some of the geneticists.  Our pedigrees, along with good documentation, could provide them with an ideal situation for research.  Initially, the University allowed us to be combined in a study under Grant #1845, which was an all breed epilepsy study funded by the AKC Canine Health Foundation.  Within one year, we were offered participation in Grant #2304, a 2-year continuing investigation into epilepsy.  From the Canine Epilepsy Network web page http://www.canine-epilepsy.net:

"The Canine Epilepsy Project is a collaborative study into the causes of epilepsy in dogs. It is supported by grants from the AKC Canine Health Foundation (CHF), National Institutes of Health (NIH), individual breed clubs and private donations. Grants supporting this research are CHF Completed Grant #1718, CHF Completed Grant #1729, CHF Completed Grant #1845, CHF Active Grant #2252, CHF Active Grant #2304, and NIH Award #1K08NS0224501."

Participating in the Canine Epilepsy Project in conjunction with other breeds benefits our small breed in that:

1.      It reduces initial costs that are necessary to pursue the research.

2.      It allows the AWS to be compared to other spaniel breeds for similarities.  (Researchers have indicated that the small gene pool of the AWS proves to be an ideal research group.)

3.      It allows AWS DNA to be stored at the University without incurring additional costs.

4.      It allows AWS DNA, if accompanied by the appropriate release forms, to be used for additional studies that could benefit the AWS.

This is a phenomenal advance for the AWS, as there have been no other studies of this magnitude developed for us prior to this.

In December 2000, we established a Donor Advised Fund with the AKC Canine Health Foundation under the name “AWS Partners”.

Where We Are Now

We have collected 249 AWS samples at the University of Missouri, College of Veterinary Medicine (Columbia).  28 of those are from American Water Spaniels affected with epilepsy.  There have also been many pedigrees of deceased epileptics and their family members submitted.  The University now has a foundation group of data to begin evaluation of our samples in an attempt to locate a genetic marker and determine the mode of inheritance.  Learning the mode of inheritance would be the first step in assisting our breeders in eradicating this affliction.  It is hoped that the small gene pool of the AWS will enable researchers to move quickly in meeting these goals.  There is hope that it will also assist them in progressing with studies in breeds of a much larger number, especially those thought to be closely related.  Epilepsy has become a major problem in many breeds of dogs, and is the #2 concern overall, second only to Cancer.

Through our fundraisers and contributions from our caring partners, we have raised over $10,000 in the AWS Partners-Epilepsy donor advised fund to sponsor our grants.

How to Move Forward

The University needs to continue collecting individual dog information, pedigrees, and blood samples from ALL American Water Spaniels, even if they never had problems with seizures.  They will also continue to accept pedigrees of affected dogs that are now deceased.  This collection of information will enable them to identify AWS with seizures and non-seizing AWS who are related, and obtain a rough estimate of the prevalence of primary epilepsy in the breed.  It will allow them to identify similarities and differences between DNA of families of affected dogs and their unaffected relatives, and the remainder of the unaffected population.  Studying the pedigrees for those similarities and differences can provide the information to determine the mode of inheritance.  Some individuals may not realize that they own an AWS related to an epileptic dog, and through the pedigree research, the University can make the connection in these dogs.  Researchers also hope to acquire enough data to later focus on environmental determinants of seizures (e.g., vaccines, pesticides, etc.) and again this information will be necessary to compare seizing and non-seizing AWS.

The University needs all owners of epileptic dogs to fill out their Seizure Survey form to assist in collecting accurate history on the affected dogs.

Important Note:  All information sent to the University is strictly confidential and each sample is assigned a number.  No information on any dog is released to any one except the owner of that dog.

What YOU Can Do

 1.      PARTICIPATE!  You can have blood drawn from all of your American Water Spaniels to be sent to the University of Missouri.  Remember, any DNA used for the epilepsy study can be used for future studies, and will be banked at the U at no additional charge.  We have a letter to your vet available requesting reduced or donated fees.  So far, all vets have been cooperative.

(Information on obtaining complete packets listed below.)

 2.      SPREAD THE WORD!  You can contact other AWS owners and encourage them to participate.  We have found that ALL pet owners we have contacted were very enthusiastic about participating.  Many AWS owners are not members of a club to become aware of this effort.

3.       MAKE A FINANCIAL CONTRIBUTION!  You can make a donation to the AKC Canine Health Foundation Fund “AWS Partners”.  We are a small group and will need funding in the future.  With a small breed group like ours, AKC CHF will often equally match the amount in the fund.  In the Welsh Springer Spaniels, the breed group collected only $4,000.  At the request of the University, the AKC CHF matched it to develop an independent study of epilepsy in that breed.  Please consider donating even a small amount equal to what you might pay for a conformation, obedience, agility, or hunt test event.

4.       CONTRIBUTE YOUR IDEAS!  Ideas for promoting this project and fund-raising are welcome.

To obtain more information, submit suggestions, or request a complete packet for your blood draws, please contact:

AWS PARTNERS 

awspartners@earthlink.net

or

Linda Ford

1-760-723-1706 

 

 Beth Lagimoniere

1-805-925-3547 

Complete packets contain:

Instructions for Submitting the Samples; Individual Dog Information Form; Litter List Form; Letter to the Vet; DNA Release Form; your dogs’ Pedigrees; your dogs’ Genetic Chart.

Keoni Update -2002

At this point in time, Keoni’s seizures are still not under control, although he is on a natural diet, Phenobarbital, Potassium Bromide, and a multitude of supplements.  Most recently, he has had acupuncture treatments, but we have not found them to be effective in stopping or reducing his seizures.  His best record is almost 3 months seizure free, but more commonly only 2 weeks to 1 month.  He is still my demo dog for my training classes and for training mobility impaired individuals to train their own service dog.  He is a natural in the field and water, but I will not allow him to swim without a floatation vest for fear of a seizure.  In spite of his dilemma, he is still a happy, active dog during the good days.  We will persevere, and I hope that some day things will be better and we can attain our goals.  If not, I know it’s not his fault, and I know he’s still the perfect dog for me.

Keoni Update -2004

Keoni is still with me, soon to turn 8 years old.  Since the time of initially writing this article, we have pursued participation in more activities and have acquired an AWSC Started Dog hunt test title, a UKC-CD obedience title, and earned one leg toward a UKC-CDX title.  We have been playing a bit in agility training for almost a year, and have been training further in obedience.  Unfortunately, Keoni's seizures have not improved any, but the good news is that they also have not worsened.  He's a hardy little brown dog and neither one of us is giving up!

Keoni Update -2005

Keoni is now 9 years old and still participating in fun activities in spite of his continuing seizures.  This year we have earned the AKC CDX obedience title, and earned Rally Novice, Rally Advance, and Rally Excellent titles, as well as the 2nd leg toward his UKC CDX title.  We are still playing in agility training and have earned the 1st Novice Standard leg.  Unfortunately, as in the previous years, Keoni's seizures have not improved any, but the good news is that they also have not worsened.  He remains the hardy little brown dog that I am blessed to still have with me.  I hope our endeavors and accomplishments help to encourage others dealing with this terrible affliction to not give up!

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Click on the following links for more information on canine epilepsy:

Canine Epilepsy Resource Center

awspartners@earthlink.net

   

 

AWS PARTNERS

Achieving Wellness Solutions in the American Water Spaniel

 

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