Marcie’s Embrace story - My daughter refuses to let epilepsy overcome her
These are a few things that caregivers of people with epilepsy go through. The changes that happen to a family when one person is suffering from the condition cannot be quantified, most especially for the parents and spouses of children and adults with epilepsy.
Living with epilepsy is difficult and so is having to see and take care of a loved one who constantly has seizures.
In this Embrace story, Marcie Robles, mom to Jessica who is now 11 years old, narrates Jessica’s epilepsy journey, from her first seizure at 3 years of age, to when she became seizure-free in January 2019. Jessica’s story, is filled with anxiety and terrifying days for her mom and family, as well as a lot of pain for Jessica until they discovered the Embrace watch, which brought them the peace of mind they deserved.
Her first seizure happened just before a car ride. It felt like an eternity.
Jessica’s epilepsy journey started when she was just 3 years old. We were heading out of town to visit my in-laws. Jessica and her younger sister Penelope were coming out into the garage, ready to hop in the car. That’s when it happened. All of a sudden Jessica freezes and doesn’t respond to me calling her over to the car, as I buckle her sister in her car seat. It felt like an eternity, but in reality, only 45 seconds to a minute passed. Finally, as I was about to approach her, she just came out of this daze as if nothing had happened. I was so puzzled, that had never happened before nor did Jessica have any behavioral disorders.
Throughout the two and a half-hour car ride, the situation kept replaying in my mind. I really felt that something was very wrong. After arriving, I mentioned it to my mother-in-law. She told me not to freak out but that Jessica could have had a seizure. My heart broke.
On the ride back home, I jumped on my phone and started googling “staring off” and “seizures”. I watched videos and just sank in my seat. On Monday, I called a neurologist, and Jessica was seen not too long after. He made her blow a pinwheel and sure enough, she went into this daze. He diagnosed her with petit mal seizures, once we got our EEG test results, and she was prescribed an antiepileptic drug.
Living and dealing with the condition
When Jessica was 7, she started having more seizures, and we had to increase her dosage of medicines. That came with so many side effects; she was falling asleep in class, taking naps at school, felt depressed, and felt fatigued. Besides, she was full of anxiety, would shy away from family members, and she was not growing. After much thought, my husband and I agreed that we could no longer use this medicine. We consulted with her doctor and requested to see a dietician. Our neurologist did not believe that a diet would help, but to his surprise, the ketogenic diet helped her seizures. She was growing and thriving, and she had gone back to her joyful self. After 2 years, we were able to wean Jessica from the keto diet, and she remained fairly seizure-free.
In 2017, we were offered to relocate for a job in Texas. We accepted, and in October, we moved our family from California. Not long after we moved, we noticed Jessica’s seizures started to come back. She would be napping at school, and when she awoke, she was not able to stay awake because she was having several seizures. She was absent from school for a long time. We found our new neurologist at Children’s Hospital in Dallas. We did not want to start any AED (anti-epileptic drugs) and risk the side effects, so we started Jessica on Haleigh’s Hope CBD instead. With this, she showed improvements that we were very pleased with.
On September 18, 2018, it happened. My husband had traveled to Houston for his job, and anytime he was out of town, Jessica and Penelope slept in my bedroom. That night, Jessica had played softball, so she had practiced hard. I remember her falling asleep on the way home from practice. After taking a shower, we headed to bed. Not long after, I woke up to a noise that I couldn’t make out.
I looked over, and Jessica was no longer beside me. My bathroom light was on and the door was closed. A few more seconds passed. I was so alarmed by the sound that I jumped out of bed and ran to the restroom. That’s when I found Jessica face down, seizing.
It was the most terrifying day of my life. My child was blue, unresponsive, and seizing. I quickly picked her up, kept her on her side, and called 911. She was then taken by ambulance to Children’s Hospital. The seizure lasted over six minutes. Jessica was in a daze at the hospital and was in a lot of pain as her head suffered trauma from the constant banging against the tile floor. We were discharged with emergency medicine.
We needed something to alert us that she was having a seizure, and we found the Embrace watch.
That day, I knew that I needed something that Jessica could wear that would alert us when she was having a seizure. I didn’t even know if such a thing existed. After some research, I saw a few different monitors. One was for her bed, another a camera in her room, and then the Empatica Embrace watch. That made so much sense because Jessica was not in bed or her room when the last seizure happened, so the other monitors would not be useful.
We purchased the watch and waited patiently for it to come. During this time, Jessica slept with me in my bed. I hardly slept; I woke up constantly to check on her. My anxiety was out of control; I was so tired and stressed. Once the watch came and we set it up, Jessica requested to go back to sleep in her room. It gave her and us as parents the confidence we desperately needed.
I love that it tracks her sleep and daily activity. We can see her activity for the day in correlation to seizures. We are very grateful for the technology of the Embrace watch. Jessica can be confident that we will be notified if she has a seizure; her stress and fear of us not getting to her in time is no longer a worry.
She’s got brains and a heart of gold
Jessica is currently in the 7th grade. She is an honor roll student who enjoys school and being in a girls' leadership club. She loves playing softball, drawing, reading, watching movies, hanging out with friends and family, and playing with her sister. When she grows up, she wants to be a dietician and help kids like her achieve freedom from this illness by using food as a medicine.
She may be diagnosed with epilepsy, but she does not let it define her.
She is a resilient 11-year-old girl who refuses to let this illness overcome her. Because of Jessica, we have become better parents. She has to overcome very difficult mornings when she’s having seizures while trying to get ready for school. She motivates us to do difficult things. If she can get through each day the way she does, there is NOTHING that I cannot accomplish. She is dedicated to her health and making sure that she’s eating proper foods, as she is on a modified Atkins diet. She doesn’t complain or grumble. She truly has a heart of gold. She’s my hero.
For inspiration, read about some famous people who have epilepsy here.
Jessica has currently been tonic-clonic free since January 2, 2019.
For parents looking for a monitor, the Embrace watch is a must-have! We are so thankful for the Embrace watch; it has given our family peace of mind and allowed Jessica to have confidence every day. We were blessed that our insurance did help cover some of the cost of the watch. But even if it hadn’t, it would have been by far be the best investment for our daughter!
Words worth reading
Embrace is a prescription-only medical device indicated as adjunct to seizure monitoring (subjects age 6 and up with epilepsy or at risk of epilepsy) in home or healthcare facilities during rest. Embrace detects patterns that may be associated with generalized tonic clonic seizures. For safety information, please refer to Embrace IFU.
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