In Part One we learned quite a bit about Epilepsy Assistance Dogs. We explore further now with the mother of an daughter with epilepsy who had to take a different approach and we learn more about how epilepsy can present itself
Debby Simon is a freelance researcher and writer. Her work has appeared in USA Today online, The Kansas City Star, METROPET Magazine, 913 Magazine, Law Talk, and numerous anthologies. She is currently working on her first novel... about her first dog. Most important is that she Jorie's mother.
"Jorie was diagnosed with JME (Juvenile Myoclonic Epilepsy) in 2003. She was eight years old," Simon recalls. "She first experienced absence (pronounced ab-sahnce) seizures. This type of seizure resembles daydreaming, so it slipped right by all of us (parents, teachers, siblings, friends) until one winter morning, Jorie and I were alone eating breakfast. Suddenly, with no apparent cause, she startled, jumping what seemed to be four feet in her chair. Her arms flew up over her head. When I asked, "Are you okay?" she didn't respond. She was staring out of the windows. When I asked again, she looked at me, confused. I then asked, "Has this ever happened before?" She climbed up into my lap to hug me and burst into tears and I had my answer. I called her pediatrician who sent us to Children's Mercy Hospital for testing. The diagnosis followed. We were told she had over an 80% chance of outgrowing her seizures. Unfortunately, 4 days before her 9th birthday she had her first tonic clonic (grand mal) seizure. She would not outgrow her condition; her seizures would now all be grand mal, and her condition would only get worse."
|Before the Seizures; Jorie and the family's first dog, Rhapsody|
When was the decision made that a seizure alert dog would be a good idea?
"Jorie's seizures increased in frequency, intensity and length. Witnessing her seizures was terrifying, especially when we learned about SUDEP (Sudden Unexplained Death from Epilepsy which accounts for 34% of all sudden deaths in children) and status epilepticus (an acute, prolonged seizure lasting more than 4 minutes, or multiple seizures within a short span of time - this is life-threatening.) We felt 'parentally impotent' because there is no cure for epilepsy, so we couldn't find a solution to stop her attacks, nor could we prevent them or do anything remotely helpful. I stopped sleeping, worried she'd seize at night and we wouldn't hear her despite setting up our old baby monitor. Late at night, I'd scour the internet to learn everything I could about epilepsy. That's when I learned about Seizure Assistance Dogs. I was a bit surprised that our neurologist didn't mention this. We are a dog-people family so learning about these special dogs and how one could alert us if Jorie started seizing seemed like a great solution. But then we learned that the cost for a professionally trained seizure assistance dog was over $10,000. This was not an option for us. I then learned of a non-profit that trains seizure dogs for individuals/families who need them; it accepts donations. We eagerly applied. It's an involved process," Simon recalls. "We learned that the wait period was 'at least five years.' We were back to square one. Shortly thereafter we lost our beloved Sheltie who had been a member of our family for almost 15 years, and all of Jorie's life. It was a very difficult time."
Somehow things seem to happen because they are meant to be.
"When the grief of losing Rhapsody eased, Jorie begged us for a Golden Retriever puppy, but we held off, still hoping for a seizure dog. We'd never been without a family dog for such a long period of time. Meanwhile, Jorie's seizures continued. I'd call the organization every few months. Each time I was told, 'You are still at least 5 years out.'
One day a dear friend phoned, 'There is an animal foster person with an almost 13-month-old Golden Retriever who needs a home. She's already received a lot of responses so if you are at all interested, you can't wait. The dog's housebroken. Do you want the number?' It was Jorie's decision. I warned her that even if we saw the dog, and she wanted it, there were no guarantees because others were interested. Jorie was now approaching her 13th birthday. She said, 'I want to see this dog. We are the same age.' We drove to the foster caregiver's home and sat on her couch. She then brought Daisy into the room, telling us she had been abused as a puppy and that she was very skittish with new people. She kept talking while the dog sat next to her. Jorie's patience ran out - she wanted to pet the beautiful, small red-coated dog. She looked at the dog and simply said, 'Here, Daisy.' The dog did not show an ounce of skittishness; she immediately walked over to Jorie. The foster care person stopped talking, apparently stunned. She watched as Daisy stood looking at Jorie while Jorie hugged and petted her. 'She has never, ever done that before,' the woman said. I believe that Daisy somehow sensed that Jorie and our family needed a four-legged, tail-wagging friend. The stunned woman had us sign some papers and we brought Daisy home."
|Daisy & Jorie; Daisy's first days at home|
There is still the issue of training.
"Daisy already knew a few basics: sit, stay, lay down, stay. Jorie and I worked together to further expand her repertoire. With regard to training her to help with seizures, we did the following: Daisy sat next to me in the kitchen. Jorie went into the hallway and laid on the floor without moving. I then told Daisy, 'Go to Jorie.' She didn't understand the first time, but Jorie was in sight. I repeated, 'Go to Jorie.' Jorie then called 'Daisy.' I nodded my head and repeated, 'Go to Jorie.[ We kept it simple and Daisy got it. She went to Jorie. We repeated this drill and each time, Jorie would increase the distance from the kitchen to where she would lay down. Each time Daisy did what we asked, she received a treat and an abundance of positive pats and accolades. Jorie no longer needed to say Daisy's name. Daisy knew exactly what 'Go to Jorie' meant. We then furthered this training by turning it into a game. I kept Daisy with me in different rooms of our home while Jorie found places to hide, lying on the floor in other parts of the house. I then said, 'Go to Jorie.' Daisy got this down very quickly and, as always, was rewarded with treats, accolades and major pats and hugs when she found Jorie. Daisy still loves to play hide and seek.
How did this translate when Jorie had a seizure? Not well the first time," Simon admits. "Jorie had a seizure in the front hall one morning right before leaving for school. Daisy watched as I went into protocol, timing the seizure, putting something soft under Jolie's head, moving things out of Jorie's way for her safety, and gently turning her onto her side. The seizure was still going at five minutes, which meant I needed to call 9-1-1. When the paramedics arrived, Daisy, the supposedly skittish dog, went into protection mode. She barked viciously at them, adding to the chaos. I grabbed her collar and put her outside so that the paramedics could do their job. She whined and scratched at the door.
|Daisy and Jorie - love at first sight|
Jorie was post ictal (the period right after a seizure) and the paramedics finished making sure she was okay. They moved her to the nearby couch where she endured her typical post-seizure migraine and, because such seizures tax the heart, she had to sleep. The paramedics left and I let Daisy back into the house. She raced into the front hall, saw that 'the intruders' were gone, and then without any direction from me, went directly to Jorie and laid down on the floor right next to her. She didn't leave Jorie's side for the more than three hours that Jolie slept. This became Daisy's routine. After a seizure Daisy would lie quietly by Jorie's side. She stopped barking at the paramedics during the other times they had to come, but she remains very threatening to other strangers. Also worth mentioning, I was in the kitchen making breakfast, Jorie was upstairs in her room. I didn't hear the floorboards creaking, my signal she was getting dressed for school. I called Jorie but she didn't answer. Daisy raced up the stairs before I ever asked her to 'Go to Jorie.' I ran up the stairs behind her. Jorie as on the floor seizing. I think Daisy connected the dots and when she heard Jorie seizing, she ran to her. She stayed out of my way, waiting to do her part - keeping watch over Jorie post seizure."
Daisy has obviously made a difference in Jorie and her family's life.
|Jorie and Daisy, post-seizure|
"It is difficult to verbalize and consolidate how much this amazing, wonderful, loving and intelligent dog changed all of our lives. She brought joy, laughter and light back into our home. She bonded with our family and especially with Jorie. Of particular significance, her presence after a seizure has been very calming to Jorie. Sometimes during post-seizure sleeping, Jorie's arm would drift down and her hand would rest on Daisy's back. Daisy kept Jorie's spirits up. Though she was mostly Jorie's dog, she was still our family's dog, and she loves all of us. Her sense of humor spreads laughter to everyone witnessing it. Her favorite routine if I'm working and she wants attention and isn't getting it: she will find out of my shoes. put it in her mouth and streak past me, knowing full well I'll be forced to engage to claim my shoe. I know this is one of those 'you have to be there' bits but it is always hilarious! And it wouldn't surprise me at all if, when she does this, she's thinking to herself, 'Ha! Just who is the retriever now?' We are extremely fortunate that this wonderful dog came into our lives and we are grateful every day - even when she's not perfect. She became Jorie's best friend and confidant at a most critical time. My favorite heartwarming moment took place each afternoon when Daisy would ride with me to pick Jorie up from school. The moment Jorie would approach the car, Daisy would do her happy dance. Her large tail wagged most of her body and she made happy sounds in her throat. Jorie's eyes would light up and she would often ride in the back seat in order to sit next to Daisy. I believe this wonderful dog has some sort of a canine sixth sense; she knew we needed her as much, if not more, than she needed us."
When I asked if there was something else she would like to say, the response was definitive; she wanted to share some information about epilepsy which she calls "The Black Sheep" of neurological conditions. It affects dogs, and almost all mammals.
|Impish Daisy with a shoe, ready for a game|
"Epilepsy affects more people than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy and Parkinson's disease combined, yet receives fewer federal dollars per patient than each of those.
- An estimated 3 million Americans live with epilepsy, and each year 200,000 new cases are diagnosed.
- 2.2 million troops have served in Iraq and Afghanistan; it is estimated that 440,000 of these soldiers will experience traumatic brain injury (TBI) and more than 100,000 of them will likely develop post-traumatic epilepsy (PTE).
- Please, please, please take the time to learn about epilepsy - particularly first aid for seizures. There are many types of seizures. Here's a link that provides a good starting point for seizure first aid: https://www.youtube.com/watch?v=hLeSlQS9g2c
- To read more about our family's experience, here is a link to an online article written in 2010: http://www.youandmemagazine.com/articles/epilepsy-a-good-morning
Jorie started seeing an Epileptologist in February 2009, she was admitted to a Level 4 epilepsy center. She was put on a new drug that has since been determined to be the best for her type of seizure. She was seizure free for 5 years. She is now in College!
Thanks to Debby Simon for sharing her family's story. I believe we can all learn something from it.
|Jorie as a High School Senior with her BFF, Daisy|