Trixie's Story
Rachel was a bright, normally developing 2-year-old when she had her first two seizures; both happened after an exposure to the pesticide Round-up. With these seizures, the serious nature of Rachel’s epilepsy was clearly established. The first seizure was status—lasting 1 ½ hrs—and required 4 doses of IV rescue medication to stop it. A month later, the second seizure—also status but stopped with rescue meds at home at 25 minutes—resulted in an aspiration pneumonia that led to an 18-day hospitalization and the loss of half a lung.
Over the next year Rachel had a series of complex (status) febrile seizures, and though each one needed rescue meds to stop it, each also grew progressively less severe. And then—just as suddenly as her seizures had appeared--they disappeared again.
For the next five years, Rachel was completely seizure free with no epilepsy meds. During that time, she learned to read as a four-year-old; traveled with her family to Canada, Europe, and South Korea; pursued her many creative interests (violin, dancing, stop motion film making, theater, art, etc.); excelled in school, and had fun with her family and friends.
Her family assumed that Epilepsy had been a short chapter in her life, and that Rachel was forever done with it. They could not have been more wrong. Rachel’s epilepsy would come back again for a longer and even harder, second round.
In spring of her 9th year, Rachel suddenly began having trouble following her violin teacher’s directions; all involved—including Rachel—were puzzled. In late summer, as she practiced violin, Rachel began to frequently lose her place in the music, and one day, as she did so, her mom noticed her eyes roll back under her eyelids. A month later, after an EEG, Rachel’s epileptologist diagnosed her with absence seizures: short seizures that cause a momentary loss of consciousness. A longer EEG revealed that Rachel’s seizures—clinical and subclinical—numbered in the “too many to count” a day range. Soon after, Rachel also began having “big seizures” (aka grand mal, tonic-clonic, convulsive seizures).
Over the months that followed, it became clear that antiepileptic drugs (AED’s) didn’t control Rachel’s seizures (big or little); in fact, AED’s didn’t even reduce their frequency or make her big seizures non-status. Every big seizure needed rescue medication to stop it—and even with rescue meds, each one still lasted 10 minutes or more. Rachel’s seizure load was significant. The seizures made learning harder, but Rachel bravely pushed ahead and more than kept pace with her peers. However, the fatigue the seizures and AED’s caused, was often overwhelming; consequently, that fatigue began to slowly chip away at Rachel’s extra-curricular activities. She didn’t have the energy to do anything except what she absolutely had to do. It was also no longer safe to travel, so she lost that aspect of her life.
Over the next several years, Rachel’s big seizures grew progressively more frequent; she went from having one every 6 ½ weeks to one a week. Rachel required constant supervision for, if her family missed the start of one of her big seizures and rescue meds were delayed, the seizure could quickly become a life-threatening medical emergency. The longer a seizure goes on, the harder it is to stop—and at some point, the seizure gets ahead of the efficacy curve of rescue medication protocols so that the seizure is always stronger than the means being used to stop it. The end game in this scenario can be a child who ends up intubated on the ICU in a medically induced coma. Likewise, if Rachel’s family missed the start of a seizure, Rachel could also end up in an unsafe position during and after a seizure--and aspirate and then develop aspiration pneumonia again.
The serious responsibility of watching Rachel carefully was brought home to her family powerfully after Rachel was nearly intubated after a status seizure where rescue meds were delayed. After Rachel spent a night in the ICU step-down, a consulting neurologist told her family that Rachel could never, ever again be allowed to seize for more than five minutes without rescue meds. And so, in order for this to happen, it meant that—since no one could predict when a seizure would happen—Rachel could never again be out of her family’s--her caretakers--sights for more than 5 minutes at a time, lest they again miss the start of a seizure. And she could never be alone anywhere unless she was being actively monitored by video camera—and someone was close by ready to intervene.
As time passed and Rachel and her peers got older, her peers’ need for supervision grew lesser and then all but disappeared. Rachel, however, continued to need close supervision to stay safe. As Rachel’s peers’ worlds and freedoms expanded, Rachel’s world began dramatically shrinking and her freedoms evaporated.
CBD—begun as soon as it was legal in 2016—helped more than anything else had. It made Rachel’s big seizures non-status for a full year before it began to lose efficacy. As CBD’s efficacy waned and the severity of her seizures continued to increase, during 2018-2019, Rachel became a frequent flyer in the ER. Her rescue meds began to not always be effective in stopping her status seizures, even when administered early in a seizure.
In 2017, Rachel’s epileptologist first suggested that it was time to explore getting a service dog for Rachel. A service dog could help keep Rachel safe by alerting family members at the start of a seizure—to ensure that she got rescue meds sooner and to ensure that the start of a seizure wasn’t missed. A service dog could also provide bracing during and immediately after seizures, keeping Rachel in a safe position to prevent aspiration. And finally, a service dog might, over time if her seizures could become somewhat more controlled, help Rachel work towards a degree of greater independence as she got older.
There are very few service dog programs that accept children or teens. After a false start with a national program that specializes in placing service dogs with children, but that was unwilling to place a dog with a cognitively normal teen, we settled on a program in Atlanta known for force-free training. However, that program had a five-year waiting list, and required that applicants also apply to other service dog programs as they wait. In fact, applicants must list on the application itself, several other service dog programs to which they’ve also applied. While looking for other programs, our dog groomer told us about Abigail Witthauer and the Roverchase Service Dog program. It seemed from the first—in being local, in adhering to a force-free philosophy, and in being familiar with epilepsy—that Roverchase was a perfect fit. We quickly completed the Roverchase application. And never submitted our Atlanta service dog program application.
We were surprised when, just weeks later, in early summer of 2018, we got a call from Abigail. Roverchase’s C-litter, the first Roverchase-bred litter of service dog puppies, had just been born. Weeks later, Rachel was paired with Cashew, aka Trixie (Rachel asked to rename her Trixie, since she was still just a tiny puppy, and Roverchase agreed). When Trixie was just 8 weeks old, she came to live with us. While living at our house, Trixie went to school at Roverchase three days a week. Every school day, when we picked her up, we were given daily reports on Trixie’s training, and were also given plenty of homework to do with Trixie—and so we learned along with Trixie! Because she was in our home so early, Trixie grew up bonded to Rachel, her handler. Things were perfect in that way. However, that time was also a challenging one because, as Trixie was training, aside from worsening seizures and frequent ER visits, Rachel was also going through an extended period of Epilepsy Pre-surgery Testing—both in Birmingham but also in Boston--to see if she would be a good epilepsy resection candidate. It was a long, grueling process with lots of hospitalizations, outpatient tests, and anxiety-producing debate among groups of doctors as three different hospitals tried to determine what was what in Rachel’s difficult case.
In December 2019, Trixie graduated from service dog school, and a few weeks later, in January 2020, we flew to Boston where Rachel underwent two brain surgeries a week apart with a difficult period of invasive monitoring between. The brain surgery was only partly successful, so that, while Rachel’s little seizures became a thing of the past, her big seizures continued. And so, Trixie still gets lots of practice in helping Rachel with her seizures. Going forward, Rachel will go back for another round of Epilepsy Pre-surgery Testing, and perhaps another surgery. Even if a future surgery were to be successful, and Rachel were to become completely seizure-free, Trixie’s job as Rachel’s seizure response/alert dog would continue for years to come—likely beyond Trixie’s normal retirement age—because the need for surveillance will continue for years. No one assumes seizures are gone for good, until they’ve been gone for 7 or more years.
Trixie is literally Rachel’s life-insurance policy. Trixie is there for every one of Rachel’s seizures.
She learned as a young puppy that seizures were when Rachel needs her most. Trixie has decided that it is her job--during and after seizures--to lick Rachel’s face and try to wake her. This stimulation is helpful as it allows us to monitor Rachel’s level of responsiveness more easily. Trixie’s licking also helps clear away the excess saliva produced during seizures—and thus, helps keep Rachel’s airways clear. Trixie also braces during and after seizures to keep Rachel in a safe position on her side, something that helps keep Rachel’s airways open and prevents aspiration pneumonia. In the post-ictal ( immediately after seizure) period, Trixie becomes a floofy comforting presence; her soft, gentle calm, concerned, and snuggly demeanor helps calm and comfort Rachel, as Rachel starts to become conscious and wake up again.
Currently, post-surgery, Rachel also suffers from status mild complex partial seizures on or shortly after waking. Trixie gets up early, eats, potties, romps in the yard, and then comes back to bed to wait for Rachel—who sleeps late--to wake. On the mornings that Rachel struggles with these seizures, Trixie signals to all present-- by pawing at Rachel and licking her face—that Rachel is in danger of a seizure. Trixie then settles down on the bed beside Rachel and puts her head on Rachel’s chest. As Rachel struggles with slowed cognitive functioning, difficulties with expressive language (Rachel is usually supremely verbal), muscle weakness affecting one side of her body, facial spasms, and intermittent lack of awareness, Trixie stays with Rachel with her head on her chest. At times, Rachel will decide that she wants to get up, but Trixie settles her head into the space between Rachel’s chest and chin, and defiantly declines to move—effectively keeping Rachel in place, not allowing her to get up. Trixie stays loyally beside Rachel until the seizure—usually 3 to 30 minutes--has passed. All this Trixie does for Rachel, even though Trixie often gets too hot snuggled in beside Rachel.
Trixie’s also there to love and be loved on when Rachel’s having trouble dealing with the way that epilepsy has hijacked her life. And so too, when epilepsy makes Rachel tired so that she naps, Trixie always chooses to nap on the floor beside the couch where Rachel sleeps.
Over time, Trixie will hopefully also be Rachel’s ticket to more independence—able to accompany Rachel to the nearby college they will both one day attend.
Beyond all this, Trixie helps keep our lives less serious and more humorous. Trixie’s nickname is Trixie Trouble, because, at home, Trixie is a floof of pure goofball who keeps life interesting by trying to eat inedible things and by stealing various items—wet washcloths are her all-time favorite--in hopes that someone will chase her to get it back. She gets the Zoomies. She adores the garden hose and goes crazy whenever it gets turned on. And she loves to help anyone trying to get something done—by sticking her nose in the middle of it all—often so that nothing can get done.
But Trixie changes entirely—from goofball to serious worker—the minute her service dog vest is snapped on. Out in public, she becomes a serious, well-behaved dog. She ignores all those who would distract or make over her in an adoring way. (The exception to this is Trixie’s Roverchase family—because Roverchase is also home as far as Trixie is concerned). Trixie knows how to behave. She quietly concentrates on Rachel, handling every situation appropriately. Business and restaurant owners go out of their way to tell us what a pleasure she is to have in their shops/restaurants, and sadly too often to reinforce their point, they recount stories of not so well-behaved service dogs.
Having severe, intractable epilepsy has taken much from Rachel and kept her from being able to do many of the things her peers do, but Trixie is one of the things that Rachel has gotten in return. Trixie stands beside Rachel, along with us, her family, ready to do whatever is needed.
We are so happy and thankful that Rachel has Trixie as her service dog! And we do what we can do to support Roverchase’s service dog program—and will continue to do so. Abigail and Roverchase are and always will be, part of Trixie’s family, and they have become like family to us too.
Over the next year Rachel had a series of complex (status) febrile seizures, and though each one needed rescue meds to stop it, each also grew progressively less severe. And then—just as suddenly as her seizures had appeared--they disappeared again.
For the next five years, Rachel was completely seizure free with no epilepsy meds. During that time, she learned to read as a four-year-old; traveled with her family to Canada, Europe, and South Korea; pursued her many creative interests (violin, dancing, stop motion film making, theater, art, etc.); excelled in school, and had fun with her family and friends.
Her family assumed that Epilepsy had been a short chapter in her life, and that Rachel was forever done with it. They could not have been more wrong. Rachel’s epilepsy would come back again for a longer and even harder, second round.
In spring of her 9th year, Rachel suddenly began having trouble following her violin teacher’s directions; all involved—including Rachel—were puzzled. In late summer, as she practiced violin, Rachel began to frequently lose her place in the music, and one day, as she did so, her mom noticed her eyes roll back under her eyelids. A month later, after an EEG, Rachel’s epileptologist diagnosed her with absence seizures: short seizures that cause a momentary loss of consciousness. A longer EEG revealed that Rachel’s seizures—clinical and subclinical—numbered in the “too many to count” a day range. Soon after, Rachel also began having “big seizures” (aka grand mal, tonic-clonic, convulsive seizures).
Over the months that followed, it became clear that antiepileptic drugs (AED’s) didn’t control Rachel’s seizures (big or little); in fact, AED’s didn’t even reduce their frequency or make her big seizures non-status. Every big seizure needed rescue medication to stop it—and even with rescue meds, each one still lasted 10 minutes or more. Rachel’s seizure load was significant. The seizures made learning harder, but Rachel bravely pushed ahead and more than kept pace with her peers. However, the fatigue the seizures and AED’s caused, was often overwhelming; consequently, that fatigue began to slowly chip away at Rachel’s extra-curricular activities. She didn’t have the energy to do anything except what she absolutely had to do. It was also no longer safe to travel, so she lost that aspect of her life.
Over the next several years, Rachel’s big seizures grew progressively more frequent; she went from having one every 6 ½ weeks to one a week. Rachel required constant supervision for, if her family missed the start of one of her big seizures and rescue meds were delayed, the seizure could quickly become a life-threatening medical emergency. The longer a seizure goes on, the harder it is to stop—and at some point, the seizure gets ahead of the efficacy curve of rescue medication protocols so that the seizure is always stronger than the means being used to stop it. The end game in this scenario can be a child who ends up intubated on the ICU in a medically induced coma. Likewise, if Rachel’s family missed the start of a seizure, Rachel could also end up in an unsafe position during and after a seizure--and aspirate and then develop aspiration pneumonia again.
The serious responsibility of watching Rachel carefully was brought home to her family powerfully after Rachel was nearly intubated after a status seizure where rescue meds were delayed. After Rachel spent a night in the ICU step-down, a consulting neurologist told her family that Rachel could never, ever again be allowed to seize for more than five minutes without rescue meds. And so, in order for this to happen, it meant that—since no one could predict when a seizure would happen—Rachel could never again be out of her family’s--her caretakers--sights for more than 5 minutes at a time, lest they again miss the start of a seizure. And she could never be alone anywhere unless she was being actively monitored by video camera—and someone was close by ready to intervene.
As time passed and Rachel and her peers got older, her peers’ need for supervision grew lesser and then all but disappeared. Rachel, however, continued to need close supervision to stay safe. As Rachel’s peers’ worlds and freedoms expanded, Rachel’s world began dramatically shrinking and her freedoms evaporated.
CBD—begun as soon as it was legal in 2016—helped more than anything else had. It made Rachel’s big seizures non-status for a full year before it began to lose efficacy. As CBD’s efficacy waned and the severity of her seizures continued to increase, during 2018-2019, Rachel became a frequent flyer in the ER. Her rescue meds began to not always be effective in stopping her status seizures, even when administered early in a seizure.
In 2017, Rachel’s epileptologist first suggested that it was time to explore getting a service dog for Rachel. A service dog could help keep Rachel safe by alerting family members at the start of a seizure—to ensure that she got rescue meds sooner and to ensure that the start of a seizure wasn’t missed. A service dog could also provide bracing during and immediately after seizures, keeping Rachel in a safe position to prevent aspiration. And finally, a service dog might, over time if her seizures could become somewhat more controlled, help Rachel work towards a degree of greater independence as she got older.
There are very few service dog programs that accept children or teens. After a false start with a national program that specializes in placing service dogs with children, but that was unwilling to place a dog with a cognitively normal teen, we settled on a program in Atlanta known for force-free training. However, that program had a five-year waiting list, and required that applicants also apply to other service dog programs as they wait. In fact, applicants must list on the application itself, several other service dog programs to which they’ve also applied. While looking for other programs, our dog groomer told us about Abigail Witthauer and the Roverchase Service Dog program. It seemed from the first—in being local, in adhering to a force-free philosophy, and in being familiar with epilepsy—that Roverchase was a perfect fit. We quickly completed the Roverchase application. And never submitted our Atlanta service dog program application.
We were surprised when, just weeks later, in early summer of 2018, we got a call from Abigail. Roverchase’s C-litter, the first Roverchase-bred litter of service dog puppies, had just been born. Weeks later, Rachel was paired with Cashew, aka Trixie (Rachel asked to rename her Trixie, since she was still just a tiny puppy, and Roverchase agreed). When Trixie was just 8 weeks old, she came to live with us. While living at our house, Trixie went to school at Roverchase three days a week. Every school day, when we picked her up, we were given daily reports on Trixie’s training, and were also given plenty of homework to do with Trixie—and so we learned along with Trixie! Because she was in our home so early, Trixie grew up bonded to Rachel, her handler. Things were perfect in that way. However, that time was also a challenging one because, as Trixie was training, aside from worsening seizures and frequent ER visits, Rachel was also going through an extended period of Epilepsy Pre-surgery Testing—both in Birmingham but also in Boston--to see if she would be a good epilepsy resection candidate. It was a long, grueling process with lots of hospitalizations, outpatient tests, and anxiety-producing debate among groups of doctors as three different hospitals tried to determine what was what in Rachel’s difficult case.
In December 2019, Trixie graduated from service dog school, and a few weeks later, in January 2020, we flew to Boston where Rachel underwent two brain surgeries a week apart with a difficult period of invasive monitoring between. The brain surgery was only partly successful, so that, while Rachel’s little seizures became a thing of the past, her big seizures continued. And so, Trixie still gets lots of practice in helping Rachel with her seizures. Going forward, Rachel will go back for another round of Epilepsy Pre-surgery Testing, and perhaps another surgery. Even if a future surgery were to be successful, and Rachel were to become completely seizure-free, Trixie’s job as Rachel’s seizure response/alert dog would continue for years to come—likely beyond Trixie’s normal retirement age—because the need for surveillance will continue for years. No one assumes seizures are gone for good, until they’ve been gone for 7 or more years.
Trixie is literally Rachel’s life-insurance policy. Trixie is there for every one of Rachel’s seizures.
She learned as a young puppy that seizures were when Rachel needs her most. Trixie has decided that it is her job--during and after seizures--to lick Rachel’s face and try to wake her. This stimulation is helpful as it allows us to monitor Rachel’s level of responsiveness more easily. Trixie’s licking also helps clear away the excess saliva produced during seizures—and thus, helps keep Rachel’s airways clear. Trixie also braces during and after seizures to keep Rachel in a safe position on her side, something that helps keep Rachel’s airways open and prevents aspiration pneumonia. In the post-ictal ( immediately after seizure) period, Trixie becomes a floofy comforting presence; her soft, gentle calm, concerned, and snuggly demeanor helps calm and comfort Rachel, as Rachel starts to become conscious and wake up again.
Currently, post-surgery, Rachel also suffers from status mild complex partial seizures on or shortly after waking. Trixie gets up early, eats, potties, romps in the yard, and then comes back to bed to wait for Rachel—who sleeps late--to wake. On the mornings that Rachel struggles with these seizures, Trixie signals to all present-- by pawing at Rachel and licking her face—that Rachel is in danger of a seizure. Trixie then settles down on the bed beside Rachel and puts her head on Rachel’s chest. As Rachel struggles with slowed cognitive functioning, difficulties with expressive language (Rachel is usually supremely verbal), muscle weakness affecting one side of her body, facial spasms, and intermittent lack of awareness, Trixie stays with Rachel with her head on her chest. At times, Rachel will decide that she wants to get up, but Trixie settles her head into the space between Rachel’s chest and chin, and defiantly declines to move—effectively keeping Rachel in place, not allowing her to get up. Trixie stays loyally beside Rachel until the seizure—usually 3 to 30 minutes--has passed. All this Trixie does for Rachel, even though Trixie often gets too hot snuggled in beside Rachel.
Trixie’s also there to love and be loved on when Rachel’s having trouble dealing with the way that epilepsy has hijacked her life. And so too, when epilepsy makes Rachel tired so that she naps, Trixie always chooses to nap on the floor beside the couch where Rachel sleeps.
Over time, Trixie will hopefully also be Rachel’s ticket to more independence—able to accompany Rachel to the nearby college they will both one day attend.
Beyond all this, Trixie helps keep our lives less serious and more humorous. Trixie’s nickname is Trixie Trouble, because, at home, Trixie is a floof of pure goofball who keeps life interesting by trying to eat inedible things and by stealing various items—wet washcloths are her all-time favorite--in hopes that someone will chase her to get it back. She gets the Zoomies. She adores the garden hose and goes crazy whenever it gets turned on. And she loves to help anyone trying to get something done—by sticking her nose in the middle of it all—often so that nothing can get done.
But Trixie changes entirely—from goofball to serious worker—the minute her service dog vest is snapped on. Out in public, she becomes a serious, well-behaved dog. She ignores all those who would distract or make over her in an adoring way. (The exception to this is Trixie’s Roverchase family—because Roverchase is also home as far as Trixie is concerned). Trixie knows how to behave. She quietly concentrates on Rachel, handling every situation appropriately. Business and restaurant owners go out of their way to tell us what a pleasure she is to have in their shops/restaurants, and sadly too often to reinforce their point, they recount stories of not so well-behaved service dogs.
Having severe, intractable epilepsy has taken much from Rachel and kept her from being able to do many of the things her peers do, but Trixie is one of the things that Rachel has gotten in return. Trixie stands beside Rachel, along with us, her family, ready to do whatever is needed.
We are so happy and thankful that Rachel has Trixie as her service dog! And we do what we can do to support Roverchase’s service dog program—and will continue to do so. Abigail and Roverchase are and always will be, part of Trixie’s family, and they have become like family to us too.