{"id":46809,"date":"2023-12-22T15:28:43","date_gmt":"2023-12-22T14:28:43","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/dont-annoy-me-about-the-epilepsy-mom\/"},"modified":"2023-12-22T15:28:43","modified_gmt":"2023-12-22T14:28:43","slug":"dont-annoy-me-about-the-epilepsy-mom","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/en-us\/dont-annoy-me-about-the-epilepsy-mom\/","title":{"rendered":"Don’t annoy me about the epilepsy, mom!"},"content":{"rendered":"

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MERRY CHRISTMAS\u2026. we will not give up<\/strong>\ud83d\ude0a<\/strong><\/p>\n

…there are times when children, and also those affected by epilepsy, do not want to know anything about their illness. They don’t want to know anything about their parents and are, as they say in Bavaria and Austria, “Zwiderwurzn”. (you say [\u02c8t\u0361svi\u02d0d\u0250\u02ccv\u028a\u0281t\u0361sn\u0329] ). And then you have them put on a NightWatch every evening before they go to sleep (\u201ceven if it looks pretty chic for a health product\u201d \ud83d\ude09). Well – congratulations! (but please: don\u2019t give up!)<\/p>\n

But now it’s Christmas time, time for some peaceful and joyful hours, time to relax a bit and say THANK YOU, hopefully. The following story is from me for all committed people in the field of epilepsy (female, male, diverse, etc.) such as those affected by epilepsy, parents, carers, doctors, researchers, health insurance companies, medical device manufacturers, bosses, employees, pharmaceutical companies, advice centers, volunteers, foundations, friends, etc.: You are wonderful and great – thanks to you, help and support, progress happens every day and sometimes small and big miracles happen (which we all need).<\/p>\n

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Unfortunately, especially in the field of epilepsy, we continue to experience stigmatization, fear, negativity, ignorance, sometimes also arrogance and incomprehensible decisions, which – unfortunately, sometimes as a consequence can and have already led to probably avoidable suffering – and we experience this especially when it comes to the topic of SUDEP and also when it comes to the topic of participation.<\/p>\n

As the manufacturer of the NightWatch epilepsy seizure detection system, which is very well accepted by users, we support the networking of players in the health sector, digitalization and simplification of processes as well as various activities that enable people to speak freely and openly about all the possibilities and risks of the disease and those affected (epilepsy sufferers and carers) and educate about all the opportunities, risks and possibilities \u2013 because that should be normal these days.<\/p>\n

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Image: Charit\u00e9 Berlin \u2013 view from the hospital room, 2022<\/p>\n

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Today in my focus: Kerstin, a mom who, out of concern and her professional expertise, is looking for solutions, networking and progress. As a mother of four children (patchwork) and professionally active as Senior Marketing & PR Manager at SHD System-Haus-Dresden GmbH, she is committed to ensuring that the knowledge of epilepsy clinics and competence centers is better networked.<\/p>\n

The question that drives her is: Why doesn’t a doctor have better treatment options? \u201cPatient records at the doctor are often in paper form. There is an urgent need for digital data exchange between the competence centers. Data analysis provides information, for example, for the development of early warning systems. Selection options, for example for drug therapies, would enable doctors to provide targeted and significantly better treatment.\u201d<\/p>\n

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With the company SHD, she produced the film \u201cEpilepsy – better care through digital data analysis and networking of special centers\u201d in the summer of 2023 as part of the 120th-anniversary celebration of the VDK (Association of Hospital Directors), in which, among other things, she highlighted the commitment of the Team of Prof. Dr Angela Kaindl, director of the children’s clinic\/neuropediatrics department at the Charit\u00e9 University Hospital, will present research, therapy, prevention and support for epilepsy and report on the SUDEP prevention program at the Charit\u00e9. An emotional focus of the film is the experience and commitment of Dr Iris Killinger, co-founder of the Oskar Killinger Foundation from Hamburg. The tragic SUDEP death of her 14-year-old son Oskar justifies the strong commitment and the very visible campaign for the foundation’s goal: stopSUDEP!<\/p>\n

Here is the link to the video: https:\/\/www.youtube.com\/watch?v=Oi5Lp17MJKQ<\/a><\/span><\/p>\n

Starting next year, Kerstin will engage as a stopSUDEP ambassador, and she is planning campaigns on the topics of stopFREIFALL and stopNOTFALL to contribute her experience and knowledge to the further development of education and prevention in the field of epilepsy.<\/p>\n

Kerstin and her family’s lives have also changed entirely since the diagnosis of epilepsy. You try to integrate the illness into your life and make life as \u201cnormal\u201d as possible. When the son is 11 years old and is trying out the new route to school, he suddenly stops as if out of nowhere and only comes to again after a period of absence, and this several times in a row. \u201cAnd then he just walked across the street,\u201d says Kerstin. \u201cThat shocked me the most, but I didn\u2019t understand what was going on at the time.\u201d<\/p>\n

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\u201cAt first I didn\u2019t know, is this puberty, is this normal? The doctors were also at a loss. After half a year of continuous and fruitless visits to the doctor without a clear diagnosis, we got a bed in the Kleinwachau Epilepsy Center, and the diagnosis was made there: epilepsy.<\/p>\n

At the Kleinwachau Epilepsy Center, the family found an excellent specialist in Nils Holert, a specialist in child and adolescent medicine, specializing in neuropediatrics, head of child and adolescent epileptology in Kleinwachau, whom they, and especially their son, trust 100% and who has been good to them ever since accompanied. Despite seizure-suppressing medication (ASM), seizures occur every day in the form of absence seizures. He is, therefore, refractory to treatment, which annoys the son and worries the parents (editor’s note: seizures can continue to occur in around 30% of those affected by epilepsy despite ASM). In addition to absence seizures, two severe tonic-clonic seizures (formerly: grand mal) also occurred in 2022, which led to changes in medication (permanently three medications at the same time), and these have an impact on the son and the mother’s concern.<\/p>\n

 <\/p>\n

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Hospital stay at Christmas time with guardian angel gnome<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=”1″ _builder_version=”4.20.2″ _module_preset=”default” global_colors_info=”{}”][et_pb_row _builder_version=”4.23.2″ _module_preset=”default” global_colors_info=”{}”][et_pb_column type=”4_4″ _builder_version=”4.23.2″ _module_preset=”default” global_colors_info=”{}”][et_pb_text _builder_version=”4.23.2″ _module_preset=”default” global_colors_info=”{}”]<\/p>\n

The son is a good and very committed student who was a school and class representative and is now concentrating on his school leaving certificate. For him, life is \u201calmost\u201d normal, with good days and bad days. \u201cLiving with the constant risk of a seizure is not easy, especially for adolescents and young adults: no driving license, limited career choices, limited water sports and being able to live a self-determined life in your own home, to name just a few examples.\u201d Some jobs are not allowed for those affected by epilepsy, such as a pilot. You may only think about the fact that you want to become one when you find out that you will never be allowed to become one.<\/p>\n

Sports activities are often only recommended to a very limited extent for those affected by epilepsy, which means major restrictions for those affected themselves. \u201cSkiing \u2013 downhill skiing \u2013 is generally not recommended. However, we found a ski area where there are mostly gondolas and drag lifts – in Austria – here we spent a few days safely partly with a ski instructor, to the delight of the whole family.”<\/p>\n

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Skiing in Saalbach-Hinterglemm<\/p>\n

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\u201cAs there was seen a lot of seizures at night in the long-term EEG and do to the unpredictability of those seizures at night, the wearable NightWatch is now being used to detect seizures and so that everyone can sleep better again. After long and exhausting correspondence with the health insurance company and the medical service, this is now my big deal joy that NightWatch was approved for at least a 3-month trial,\u201d says Kerstin. \u201eA big thank you to the lady at the health care insurance company who listened to me and understood my worries\u201c.<\/p>\n

The reason for the initially restrictive attitude of the health insurance company: double care. At the beginning of the illness, the family had been approved for a motion sensor, but it did not work satisfactorily. \u201cIt takes too much effort to get good, effective care. A child or young adult doesn\u2019t wear that for fun,\u201d Kerstin told the health insurance company. Only after several interventions – from the doctor, from the family and also from us as manufacturer – did anything happen, but that was almost six months after the application was submitted. \u201cIt all takes far too long \u2013 people have needs at the moment when doctors and patients\/relatives are talking to each other \u2013 and what do you do in the meantime? This is about a deadly risk \u2013 it\u2019s really about my son\u2019s life!\u201d<\/p>\n

Yes, it seems that it will still take a lot of effort before there is a security of supply with, for example, aids for people with epilepsy who have seizures despite medication. With this in mind, together with those committed to the field of epilepsy, we will continue to get on your nerves with good intentions – so that something changes.<\/p>\n

We wish everyone a peaceful and blessed Christmas and a happy new year.<\/p>\n

Yours sincerely, Lilli Langen from Team NightWatch<\/p>\n

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