Aria’s Seizure Service Animal and Support

This is a journey about the bravest 6 year old I know. Her name is Aria Grace Shapiro. I am the lucky woman who gets to be her mom. My goal is to present our story, in detail, as it has truly happened. My beautiful, witty, smart, talented, animated six-year-old was diagnosed in 2018 with life-long Epilepsy.

 

I was at work and got a call any parent would dread, “Aria is having a seizure that won’t stop.” I asked, “Will she be okay?” The response was, “I don’t know.” She was rushed to the hospital by ambulance. When I got to the hospital, I could see that the the left side of her body was paralyzed, including the left side of her face. The right side was still having seizure movements. It was all very surreal. I scooped my baby up and just held her. I prayed, “Just let ‘her’ still be ‘her’. That’s all I want. Please let Aria be ‘her’ in there.”

 

That day in 2018 Aria’s seizure lasted 90 minutes. This is called Status Epilepticcus (a prolonged potentially life-threatening seizure). The paralysis was luckily temporary and was due to something called Todd’s paralysis. My 3-year-old and I spent days at Phoenix Children’s Hospital. We were hoping for a diagnosis where all evaluations (EEG and MRI) were “clear”, as this would probably mean Aria could grow out of seizures. The team of Doctors, Specialists, Neurologists, and Epileptologists, walked into our room at PCH. Aria’s MRI was abnormal. She has a type of Cortical Dysplasia called “Grey Matter Heterotopia” along with some other abnormalities.

 

In Gestation, in the first trimester, when a baby is forming, first the brain forms “Grey Matter.” The Grey Matter migrates outward and inside the Grey Matter, “White Matter” is formed. The Grey Matter is “Excitatory Neurons” and the White Matter is “Inhibitory Neurons.” Both work together. Aria has multiple specs of Grey Matter that did not migrate out. (There’s Excitatory Neurons where there should be Inhibitory Neurons.) These displaced Excitatory Neurons always have the potential to start “misfiring.” When Neurons misfire, this can cause a seizure. Aria was born with this, and probably had subtle seizures I wasn’t aware of the first 3 years of life, until the big Status Epilepticcus occurred at 3 years old.

 

Unfortunately, this is a life-long diagnosis. Aria’s beautiful brain is formed and complete. Aria’s Epilepsy is not a Genetic or Hereditary. In medical science, at the current time, we don’t know why Grey Matter Heterotopia happens. Aria is not a candidate for brain surgery and there is no cure for this.

 

Aria has had Neuro Psych Evaluations that show she has no cognitive or developmental delays. She is a very bright, social, talented kid. I have been told by many doctors Aria’s MRI does not match Aria. I count my blessings daily for this. Aria is a medical miracle. My close circle and I learned seizure protocol, and became CPR and First Aide Certified. We learned Epilepsy and First Aide lifestyle changes.

 

The next step was figuring out what medications work best to control Aria’s seizures. Seizures would still occur around every 2 months followed by the Todd’s Paralysis. If one of Aria’s seizures lasts over 3 minutes, she needs rescue medication. For some people with Epilepsy, they have a 5-minute seizure; then it’s over. Since Aria has gone into Status Epilepticcus (prolonged seizure), she is at risk for going into Status again. Aria needs rescue meds ASAP if a seizure starts. If the seizure isn’t resolving itself quickly, 911 and an ambulance is needed.

 

For many people it takes “trial and error” to find this perfect medication or medication combination. Aria started having seizures with Hypoxia. Hypoxia is where O2 drops and you have limited or no breathing. This is terrifying. In 2019 Aria caught a virus called Roseola. We quickly learned illness is a major seizure trigger for Aria, along with fevers, which can lower the seizure threshold.

 

In 2020, the Corona Virus Pandemic hit our world. I knew the outcome of Covid would not be good for Aria. In 2021, We decided to try adding CBD to Aria’s base seizure medication and Aria made it 5 months seizure free! After 5 months seizure free, unfortunately our inner circle became COVID positive and on December 18th, Aria tested positive for Covid. The night of the 18th Aria went to sleep and had a seizure. Luckily, this seizure was only for a few minutes, and did not require rescue medication.

 

My instincts told me we needed to go to the hospital. The evening of Dec 18th, Aria fell asleep in the ER, and not 10 minutes later, Aria went into Status Epilepticcus (prolonged seizures that wouldn’t stop). Hypoxia started and Aria stopped breathing before the first rescue medication was even given. An Ambulatory bag was used to keep Aria breathing. The first rescue medication was given but the seizures would not stop. Aria was rushed to the trauma room where “loads” of rescue medications were given, one after the other, trying to get the seizures to stop. Aria was intubated so the ventilator would keep her breathing.

 

Over the period of the next 6 days Aria remained in the PICU. The experience of keeping Aria sedated, while trying to slowly get her to breathe on her own, was horrifying. Eventually, Aria began slowly breathing on her own and the EEG showed the seizures had stopped. As Aria progressed, she was taken off of the ventilator, and sent to the Neuro floor, where she developed Syndrome of Inappropriate Antidiuretic Hormone Secretion (SIADH). This caused Hyponatremia, which is critically low sodium. This was caused by a combination of Covid, Status Epilepticus, and her seizure medication. Aria was quickly rushed back to the PICU. We don’t believe the Hyponatremia will be permanent, but we are still struggling with it today.

 

Aria experiences Tonic Clonic seizures, but also experiences Focal seizures which can have no movement. Though there are motion detection devices, there is nothing in our modern-day world that can monitor brain activity at home (like an EEG). At home, I have battled with how to sleep at night. If Aria makes no sound, and there is no movement, how will I awaken if Aria is in a seizure and requires rescue medication or 911? We don’t want her seizure to lock in and progress to Status Epilepticcus, or for her to go into Hypoxia and stop breathing without us knowing.

 

Since 2018, have tried everything I could think of to help me detect Aria’s seizures as she sleeps to prevent a medical emergency. I have multiple motion detecting cameras, and an at-home Pulse Oximeter to alarm me if Aria Destats (stops breathing).

 

This has brought me to a point where the idea of a seizure dog came to be. Service dogs, that are trained to deal with Epilepsy, can not only notify the family when a seizure is about to occur or is occurring, but they can also be trained to put their head under the person’s head to open the airway. Knowing this resource is out there, makes things feel more hopefully for us.

 

The process of acquiring a seizure dog is not a small task. It takes a year of training, placement, and getting the dog to acclimate to Aria, Aria’s body, and Aria’s seizures. There are only 4 organizations in the nation, that participate in the process of seizure/service animals for children under 8 years old. The process of obtaining a seizure/service animal will take around a year. We will not be put on the waiting list until we have paid in full. The cost of this extensive type of service animal for a pediatric service, is around $20,000 - $25,000. Having this Service/Seizure Animal, would be such a beacon of light to our journey.

 

I currently provide for Aria with my amazing career as a Cosmetologist, which is my passion. Due to Covid, and the lasting effects it has had on Aria’s Epilepsy, and her sodium absorption, we have been at Phoenix Children’s Hospital for almost 3 weeks. At this point, we are not sure of a discharge date. Once we are discharged, Aria will be managed out-patient, with labs 3 times a week, and follow-ups with Neurology and Endocrinology regularly. Being a cosmetologist, I am a Sole Proprietor. Sole Proprietors do not receive any paid time off. This means I have no income until I go back to work. I have not left the room or hospital in 3 weeks. I won’t leave Aria. Between our regular bills and medical expenses, this is a financial hardship on and me and my daughter.

 

Aria has been through what no child should have to experience at the age of 6 years old. This has been the most traumatic experience of our lives; Aria is my whole world. However, don’t be fooled by the trauma. Aria and I, live a beautiful life with more good days than bad.

 

I want to thank you all from the bottom of my heart, for any and all support. We are hopeful in obtaining the funds to start the process of getting Aria a seizure dog and getting through this traumatic time-period. It is not easy for me to ask for help. The support and prayers we have received, have lifted us, and truly mean more to us than I can express. Thank you for following our journey and we look forward to a bright, amazing future, and journey for Aria and my family. So much love to you all.