After the Shock and Tears : Life After Your Dog's First Seizure

By Pamela Douglas, J.D.
President, Toby's Foundation, Inc.

This is written in response to requests that Toby's Foundation regularly receives from pet owners both inside and outside of our breed for help and information. The following letter has been changed to protect the privacy of those who have requested help. We are making this available because so many people write to us to say they relate to Toby's story.

We are especially struck by the number of puppies that are seizing. We fear that this disease will eventually affect every breed. We must keep working towards the day when there will be a screening test to prevent this disease and save all of our dogs.

Dear Pet Owner,

We feel deeply for what you are going through. It is reminiscent of the pain and shock we went through with Toby. Having experienced the heartbreak and anguish of seeing our own beloved dog in a grand mal seizure, we are sorry you are facing this terrible disease and your precious dog has epilepsy. We would like to assure you, even if you feel overwhelmed right now and amidst the tears and sorrow, there can be good days again for you and your dog. You can get through this. You will be surprised by how well you will able to adapt to your changed circumstances.

We got our precious boy Toby to fill our empty nest since our daughters are grown. We had hoped to do agility with him or train him as a therapy dog. Whatever your hopes and dreams or expectations are for your dog, perhaps they can still happen or perhaps you will discover a new dream or develop a new expectation. Every dog is different. Even though our life was turned upside down by this disease, Toby is by far the best dog we have ever had and we have had dogs our entire lives. We often tell people that if we had to do it all over again, knowing what we know now, we would still have to choose Toby!

You are going through an especially difficult time right now if your dog has just started seizing and has been diagnosed with epilepsy. We hope your dog is adjusting to the medications and doing well and you will get a much deserved break from the seizures. Toby began having partial seizures at ten and a half months old and had his first grand mal at thirteen months old. Within a few months he started cluster seizures and we didn't think he would make it to his second birthday. He also suffered from, but survived a bout of pancreatitis. Today, Toby is three years old and he is doing OK and we are too! We have a set schedule that we closely follow and a detailed treatment plan for his everyday care as well as for emergencies. I can not emphasize enough the importance of a workable plan and sticking to it. This will help you even when you have to make changes or adjustments. It will also help you avoid the potentially high costs of emergencies by being able to eliminate or at least reduce the number of trips to the emergency room. A good veterinarian as well as time and experience will shape your own schedule and treatment plan for your dog. We remain always hopeful for our boy Toby and are cautiously optimistic for the long term.

Epilepsy is diagnosed by default, meaning all other possibilities must be ruled out before a diagnosis of epilepsy can be given. If all the tests have been run, including brain imaging, be sure to get a written diagnosis of idiopathic epilepsy from a doctor if that is the final diagnosis. This is important to have and you may be glad later you have it since it prevents anyone from saying your dog does not have the disease. It also helps to have it if you want to bring this to the attention of your breed since some breeders are in denial about the problem of epilepsy.

Right now your thoughts are probably focused on how to help your wonderful dog deal with this terrible disease. None of us want our dogs to suffer. A dog is unconscious during a grand mal seizure and will not recall what he has been through. We are the ones who see the suffering and remember it. In between seizures, Toby runs and plays and loves life. During adjustment periods when the medications or dosage must be changed to gain control again, side effects from the medications may be apparent until the dog's body adjusts to the change. Once the dog has adjusted he will be fine again. Yes, medications can take their toll but many epileptic dogs are able to live long and happy lives.

This is a disease without a cure. The goal is to be able to manage it. Don't set your goals around being "seizure free" because seizures do break through. You can achieve varying levels of control at different times. A good veterinarian or veterinarian neurologist can help you here. Find a veterinarian you are comfortable with, who is knowledgeable about the disease, is responsive to your concerns and questions, and will work with you in caring for your dog at home. Your dog does not have to be hospitalized every time he has a seizure. I always recommend to people, too, that they join the Epil-K9 list, an all-breed chat group. I am a member of it as well. You will learn from supportive people how to live with this disease. Many people share what they have been through and are doing to help their dogs. We all learn from each other's experience. Toby's Foundation has a link to it on our website or you can go directly to it at www.canine-epilepsy.com.

If your dog received high doses of phenobarbital while in the hospital,  I hope the side effects were explained to you. Phenobarbital can make your dog seem intoxicated for a couple of weeks while his body adjusts to the medication. Your dog may have trouble walking or standing up. He may seem wobbly or may act strangely. Whenever medications are changed or increased, especially Phenobarbital and potassium bromide, please remember there can be changes in the dog's behavior while his body is adjusting.

I want to encourage you that you will get used to dealing with seizures. I am not saying you will ever stop being concerned or even upset about them, but you will find a rhythm as you become adept in dealing with the seizures at home. Toby takes his medication three times a day. He takes phenobarbital, potassium bromide, and keppra. For those of you working full time, you will probably give medication to your dog twice a day, unless you work nearby or have someone who can give your dog medication in the middle of the day. Doctors usually prescribe twice a day, but for dogs like Toby who are difficult to treat or with whom the disease has progressed, three times a day is more helpful.

After a seizure, if your dog has a severe post ictal period (which is itself a partial seizure) or is having cluster seizures, valium is usually administered rectally. Toby often has to be given rectal valium in addition to extra Phenobarbital after he seizes. He usually clusters, which means two or more grand mal seizures in a 24-hour period. We have worked his post seizure treatment plan out in advance with his veterinarian neurologist. This has helped us to avoid bringing him to the emergency room in spite of cluster seizures. We used to panic the minute he had a second seizure and rush him to the emergency room. This disease is expensive to diagnose and can be quite costly to treat. Planning ahead and adhering to a set schedule are important in helping to control costs.

We are amazed at how well we have adjusted and are able to deal with seizures at home. We never thought we would be able to. Though Toby is usually with us, there have been occasions when we have had to leave him home alone and he has had seizures. You can only do your best. There are people who work full time and still manage to care for their epileptic dog. Seizure proofing the area you keep your dog in is a good idea to prevent him from getting hurt during a seizure. When your dog is alone it is best not to give him the run of the house, to avoid injuries or your house being damaged. Some people leave their dogs in crates. Personally, I feel a crate is too confining for a seizing dog. However, providing the crate is large enough for a seizing dog, some people prefer leaving their dog in one when they go out. We restrict Toby to one area of the house we have seizure proofed whenever we have to leave him alone. For extended absences such as a trip we cannot take him on, we are fortunate we have a grown daughter who comes to our home and takes care of him for us. Others have found a trusted friend or dog sitter who can stay with their dog and still others have found they can kennel their dog in spite of epilepsy. You simply must leave very good instructions with the person caring for your dog.

Diet is very important for an epileptic dog. There is a great deal of discussion on this. Some pet owners do not feed their dogs any grains or dairy and only feed them raw food. Others simply feed a high quality kibble or a homemade diet. You will learn what works best for you and your dog, just as you will learn what may trigger some of your dog's seizures. It is a good idea to keep a log of your dog's seizures. For instance, note what your dog was doing and where he was at the time of the seizure. This can help you identify possible triggers that can be avoided in the future.

In addition to traditional medications, some people use alternative remedies and treatments like acupuncture, vitamins, and supplements. Some of the supplements more commonly used are taurine, magnesium, vitamin B, EFAs (essential fatty acids), and GABA (gamma-amino butyric acid). You should always let your doctor know what you are giving your dog that has not been prescribed. Some doctors are open to alternative treatments and some are not. While all of this may sound overwhelming, as with most things, just take it one step at a time.

Finally, we encourage you to donate a blood sample from your dog for the research being done to find a gene marker for this disease. This can lead to a screening test being developed to identify carriers of the disease and even more improved treatments for the disease. We provide a link about donating blood on our website or you can go directly to the Canine Epilepsy Network at www.canine-epilepsy.net for more information about the research and donating blood.

We wish you and your beloved dog the very best. Please let us know how you are doing and if Toby's Foundation can be of any further assistance to you. We are here to do whatever we can to help you and your "best friend" get through this. Please visit our website for more information.

Sincerely,
Pam

Pamela Douglas, JD
President, Toby's Foundation
www.tobysfoundation.org