« Parents must be strong for their children »

Diagnosis Epilepsy

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 shook heavily. Arzu looked at her daughter and thought she was joking because she was moaning so much. She turned on the light and was shocked. She saw that her daughter’s eyes were rolling away and she couldn’t breathe. She was completely cramped and shaking. She suddenly became frightened and reacted instinctively. Fortunately, Arzu her mother was also with her and together they put 10-year-old Yagmur in the shower until she came to. In retrospect, she doesn’t know if her daughter has had seizures before because she always slept in a different room.

Father Musa, mother Arzu, daughter Yagmuar Tuana and son Toprak

Experience with epilepsy

She entrusted her daughter to the treatment of Dr. Bosch in Fürth and felt very well looked after there. They experienced the classic diagnosis and treatment process: first awake EEG (epileptic waves visible), then sleep-deprivation EEG (epileptic waves more extreme) plus MRI with an indication that the epilepsy is « benign ». That is, according to the current state of 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 grow over her epilepsy, it is possible that it is related to the shadow. This question can only be answered in a few years.

She has been medicated with Ospolot 50mg; she takes 100mg in the morning and 100mg in the evening. The wake EEG was done again after the medication adjustment and it looked good, but the sleep EEG showed no change. The epileptic waves are still visible and the nocturnal epileptic seizures are also still present.

LifeChange due to epilepsy diagnosis

Yagmur loved bathing, 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. Due to epilepsy, the mother could not sleep well, so Dr. Bosch recommended and prescribed a NightWatch epilepsy monitoring system.

Application for aid for epilepsy

Arzu contacted her health insurance company, AOK Bayern. Unfortunately, AOK Bayern initially rejected NightWatch, as there was not yet an official medical device number for Germany. In February the application for reimbursement was submitted and at the end of August, it was approved, as AOK Bayern assigned an internal medical device number to NightWatch. She was very happy and relieved about this. Buying NightWatch herself would not have been possible for her at this time.

Everyday life and sleep with epilepsy

Until she got NightWatch, Arzu was almost always awake until 3-4 am. She hardly got any sleep and this period was very hard. She always asked herself the question, « What if she hadn’t woken up on the night of the first seizure and what if her daughter had a severe seizure during the night that she wouldn’t notice? »

With NightWatch things went much better. Now she gets up when NightWatch alerts her. Her daughter sleeps in her own room again. She still checks in at night out of habit, but she sleeps much better, feels safer and feels strong and confident again.

On the use of NightWatch, she says: « The sounds of the base station could be described a bit more clearly in a video, as she found it a bit difficult to get this out of the instructions. »

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 handle a situation, the children can handle it better too. »

« It is a pity that NightWatch is still far too little known and has no name yet. They need to advertise more! I didn’t know about NightWatch yet and without the doctor’s recommendation I probably wouldn’t have known about it either. »

« There should be a right for all parents to get 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 couldn’t handle it all, but now I’m doing much better and with NightWatch I’m doing even better! »

This interview was conducted by Birgit-Elisabeth Langen from NightWatch.