Selina, soon to be 6 years old, has epilepsy. She is a picture-perfect bright adorable girl with big eyes. The first major seizure was in November last year, before that there were repeated absences since 2019. No one was prepared for a grand mal seizure that ended up in the hospital in the emergency room. No one expected that not even the doctors, the child was stable, seizure-free, so to speak. “Mommy, I’m scared I’m going to die” and the little girl still found it very difficult to fall asleep weeks after the first seizure.
Susan, Selina’s mom, is a nurse and loves her job. She comes from a large family of 10 children (5 girls and 5 boys) and as a child herself she experienced epilepsy (absences) since the age of 7, which then passed with the years. In the past, the topic of epilepsy was often given little attention in the family, her mother thought “she was drunk” when she had absences. Susan has a twin brother, she herself was a premature baby and was born by emergency cesarean section. There are no known dispositions for epilepsy in the family, and no other family members are affected. She would like to have a genetic test performed on her daughter to determine the cause. The new attending physician supports her in this and said that these tests will be normal in 10 years.
From absences to a grand mal seizure
Susan is knowledgeable about illnesses and care and yet, at first, helpless when it comes to epilepsy. “When a grand mal seizure firmly shakes a small delicate body, everyone gets scared in the first moment.” And after that, in addition to medical care and support, the only thing that helps is to cuddle the little one tightly and offer comfort until both mom and daughter feel like things are getting better. That’s just life.
Before the big seizure turned Susan and Selina’s lives upside down, she was happy. The EEG was unremarkable and much improved. Various medications were tried, each causing different side effects from listlessness to loss of appetite and weight loss. The use of Lamictal drove away the absences and hardly had any side effects, but then, the first major seizure.
Never give up!
But Susan and Selina do not give up. Susan has learned this as a former competitive athlete and triathlete, do not give up, as in sports: “Never give up! The pain passes and the pride remains, it goes forward. It takes a lot of strength and it hurts, but you get something in return. The love you get and the appreciation.”
Since the seizure, Susan has sought out surveillance monitoring to help her feel safer. She found NightWatch at Rehadat and NightWatch won her over. Her daughter loves “the watch”, to her it’s like a wristwatch (sports watch). She’s proud of it when she slips it over her little arm at night. And the children’s book and owl Buddy watch over her at night together with the NightWatch. This helps them both sleep better, mother and daughter. “I can sleep again,” Susan says, “after the seizure, we were both wiped out. We desperately needed a solution.” The attending physician, Dr. Kutschke from Caritas Klinikum Bad Mergentheim, wrote a socio-medical justification and issued the prescription, and the application was approved by the health insurance company within a few days. So everyone is helped.
Better sleep thanks to NightWatch
After the first night with NightWatch, Selina woke up and said “Mom, I slept well”. Since then Susan feels relieved and things are getting better step by step. In the kindergarten, they have an integration worker and Selina goes to the speech therapist to compensate for developmental delays related to epilepsy. She participates normally in life, she is a happy and curious child. Selina likes to do handicrafts and paint and loves to be outside in nature, with horses and animals. Horses are her favorite animals, large horses of course. Mom and daughter spend quality time together. “Today I had the day off and we went for a 9 km walk with friends, had breakfast, and spent the day outside together.”
Susan’s tip for parents
Susan’s tip to any parent: “Epilepsy is not something to take lightly. Selina was always independent, but she was also behind in some things. That’s why individual support and 1:1 care are necessary. Someone who can respond to individual needs and is compassionate. And it’s important to know your child well and know when activity and when rest is needed. It’s important to have a good balance and to be informed about all the options and things related to epilepsy. It’s also important to have a good network and not be alone. And NightWatch also helps me reduce my fear of failure as a mother. I have the system connected to the Internet, I look at the records, I discuss it with the doctor, and I always have all the data related to epilepsy up to date with me via the Helpilepsy app. That helps me and my daughter a lot. And above all, the thought that it always goes on. Never give up!”.