This is the Köse family who lives in both Germany and Turkey. In October 2020, their daughter Yagmur Tuana had a grand mal seizure at night. At about 5:30 in the morning, the bed began shaking heavily. Arzu looked at her daughter and thought she was clowning around because she was moaning so much. She turned on the light and was shocked. She saw that her daughter’s eyes were rolling, and she could not breathe. She was completely cramped and was shaking. Suddenly she became frightened and reacted instinctively. Fortunately, Arzu’s mother was with her and together they put 10 year old Yagmur in the shower until she recovered. In retrospect, she does not know if her daughter has had seizures before because she always slept in a different room.
Father Musa, mother Arzu, daughter Yagmur Tuana and son Toprak
Experience with epilepsy
Arzu entrusted her daughter to the treatment of Dr Bosch in Fürth where she was well cared for. They went through the classic diagnosis and treatment process: first an awake EEG (epileptic waves visible), then a sleep-deprived EEG (epileptic waves more extreme) plus an MRI which indicated that the epilepsy is “benign.” According to current medical science, she could grow out of it by puberty. However, after the MRI a shadow was discovered, which is unusual. If Yagmur does not outgrow her epilepsy, it could possibly be related to the shadow. This will only become clear in a few years.
She is being treated with Ospolot 50mg; she takes 100mg in the morning and 100mg in the evening. The awake EEG was done again after she started taking the medication and it looked good, but the sleep-deprived EEG didn’t reveal any changes. The epileptic waves are still visible, and the nocturnal epileptic seizures are also still there.
Life-changing epilepsy diagnosis
Yagmur used to love having a bath, swimming and climbing, but the doctor advised her not to do so because of the possible dangers. For the rest, everything is fine, not much has changed. Only the nights are different now. Because of her daughter’s epilepsy, the mother couldn’t sleep well, so Dr Bosch recommended and prescribed a NightWatch epilepsy monitoring system.
Applying for an assistive device for epilepsy
Arzu contacted her health insurance company, AOK Bayern. Unfortunately, AOK Bayern initially rejected NightWatch, as Germany had not yet assigned it an official medical device number. In February, she submitted an application for reimbursement, and it was approved at the end of August, as AOK Bayern had assigned an internal medical device number to NightWatch. Arzu was very happy and relieved. It would have been impossible for her to buy NightWatch herself.
Everyday life and sleeping with epilepsy
Until she got NightWatch, Arzu was always awake until 3-4 am. She hardly got any sleep, and it was a tough time. She always asked herself, “What if I hadn’t woken up on the night of the first seizure and what if Yagmur has a severe seizure during the night and I didn’t notice?”
NightWatch ensured that things went much better. Now Azur gets up when NightWatch alerts her. Her daughter sleeps in her own room again. She still checks on her at night out of habit, but she is sleeping much better, feels safer, stronger and confident again.
About the use of NightWatch, she says: “The sounds of the base station could be described a bit more clearly in a video, as I found it a bit difficult to interpret from the manual.”
Tip from Arzu in dealing with epilepsy
“A mother with a sick child is always afraid, but parents must be strong for their children. If the parents can manage a situation, the children can manage it better too.”
“It is a pity that NightWatch is still relatively unknown. They need to advertise more! I hadn’t heard of NightWatch before and without the doctor’s recommendation I would never have known about it.”
“All parents should be entitled to have a NightWatch system.”
“Parents need to stay strong! You have to try to stay strong yourself, and then the rest will come naturally. In the beginning, I thought I could not manage it all, but now I am doing much better and with NightWatch I am doing even better!”