{"id":34811,"date":"2023-02-14T13:59:39","date_gmt":"2023-02-14T12:59:39","guid":{"rendered":"https:\/\/nightwatchepilepsy.com\/?p=34811"},"modified":"2023-02-16T12:27:13","modified_gmt":"2023-02-16T11:27:13","slug":"mom-please-help-me","status":"publish","type":"post","link":"https:\/\/nightwatchepilepsy.com\/es\/mom-please-help-me\/","title":{"rendered":"\u00abMom, please help me, the wiggle is coming back\u00bb"},"content":{"rendered":"

[et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb saved_tabs=\u00bball\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]A mother wins in the social court the assumption of costs for night-time monitoring<\/strong>
\n<\/strong>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Do you know the DIN A 13 tanzcompany? \u00abThe DIN A 13 tanzcompany is internationally one of the few dance ensembles whose members are composed of dancers with and without physical disabilities\u00bb (www.din-a13.de<\/a>). This is not about inclusion, it is about art and expressing multifaceted life in movement forms and play.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2023\/02\/NightWatch_please-help-me_3.jpeg\u00bb title_text=\u00bbNightWatch_please-help-me_3″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Education program of the DIN A 13 tanzcompany M.A.D.E. Mixed-evening dance education with Anastasia Olfert (in the blue shirt), Photo: private<\/em>[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb||||false|false\u00bb custom_padding=\u00bb0px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Anastasia Olfert is a Creative Producer at DIN A13 tanzcompany. She takes care of everything related to the management of dance productions.[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ custom_padding_last_edited=\u00bbon|tablet\u00bb _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#f7f9fd\u00bb custom_padding_tablet=\u00bb0px|20px|0px|20px|false|false\u00bb custom_padding_phone=\u00bb0px|20px|0px|20px|false|false\u00bb saved_tabs=\u00bball\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.19.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Her daughter, Aurora Jose, 5,5 years old, is learning about dance and movement in the tanzcompany, in a relaxed and chilled-out atmosphere, that her body is sending her the right signals and she is learning to listen to those signals.<\/p>\n

\u00abMommy, please help me, the wiggle is coming back\u00bb is a phrase Anastasia hears from her daughter when the girl notices during the day that a seizure might be coming on or that something is changing in her body or her perception. Beyond the limits of the physical, mom and daughter try to find alternatives besides the necessary classic drug treatment and seizure monitoring with NightWatch, which increase the quality of life and also bring joy and motivation. \u00abIt is important that the children know their resources, such as strength and resilience, and that they can use them in necessary moments,\u00bb says Anastasia Olfert. \u00abWe learn that through breathing exercises, dance, movement, accessing physicality, and we also have tonis with relaxation journeys and we do wellness from time to time.\u00bb The medications often make her daughter tired and dizzy, and through the joy of movement and the rhythm of dance, her daughter is able to shake off that drowsiness.<\/p>\n

Her bright daughter Aurora has invented the word \u00abwiggle\u00bb for her epileptic seizures, which occur mostly during sleep, and announces possible seizures to her mother by saying, \u00abMom, the wiggle is coming again.\u00bb Through this word, the child is able to accept the disease and symptoms well.<\/p>\n

Aurora was diagnosed with West syndrome \/ BNS epilepsy at 7 months of age.[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb saved_tabs=\u00bball\u00bb locked=\u00bboff\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row column_structure=\u00bb1_4,3_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#eef7ea\u00bb custom_margin=\u00bb||||false|false\u00bb custom_padding=\u00bb||||false|false\u00bb border_radii=\u00bbon|10px|10px|10px|10px\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_4″ _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/\/2021\/10\/info.svg\u00bb title_text=\u00bbinfo\u00bb align_tablet=\u00bb\u00bb align_phone=\u00bbcenter\u00bb align_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb width=\u00bb49.8%\u00bb min_height=\u00bb62.7px\u00bb custom_padding=\u00bb40px|||29px|false|false\u00bb custom_padding_tablet=\u00bb|0px||29px||\u00bb custom_padding_phone=\u00bb|||0px|false|false\u00bb custom_padding_last_edited=\u00bbon|phone\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][et_pb_column type=\u00bb3_4″ _builder_version=\u00bb4.16″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text content_tablet=\u00bb<\/p>\n

Around 50-70% of the children eventually grow out of their seizures. This is most likely to happen in children who respond well to medication, have relatively few seizures or when there is no evidence of an underlying neurological problem.<\/span><\/p>\n

\u00bb content_phone=\u00bb\u00bb content_last_edited=\u00bbon|phone\u00bb _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb width=\u00bb96.9%\u00bb min_height=\u00bb36px\u00bb custom_margin=\u00bb10px||26px|-154px||\u00bb custom_margin_tablet=\u00bb10px||26px|-154px||\u00bb custom_margin_phone=\u00bb0px|10px|0px|10px|false|false\u00bb custom_margin_last_edited=\u00bbon|phone\u00bb custom_padding=\u00bb|||0px||\u00bb global_colors_info=\u00bb{}\u00bb]Author’s note: according to the ILAE, West syndrome has been recognized as a childhood epileptic syndrome since its first appearance (1841) (ICD-10 classification: G40. 4, other generalized epilepsy and epileptic syndromes) and is considered a paradigm of an epileptic syndrome leading to neurological deterioration (epileptic encephalopathy) and has been the subject of numerous studies aimed at understanding the complex relationships between an epileptic disorder and neurodevelopment. BNS refers to \u00abflash seizures, nodding seizures, and salaam seizures.\u00bb<\/em>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.19.4″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#f7f9fd\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row column_structure=\u00bb1_2,1_2″ _builder_version=\u00bb4.19.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.19.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]West syndrome is considered difficult to resistant to therapy, meaning seizures occur despite medication. Fortunately, Aurora became seizure-free for 1.5 years right away with the first medication. At two and a half years, the seizures returned, and all seizures came from sleep. Aurora is a stomach sleeper and seized into her pillow. The prognosis of West syndrome is associated with reduced life expectancy and, accordingly, increased psychological burden and stress on caregivers accompanies it. The mother is employed and the daughter sleeps in her own room. Due to the child’s condition and type of epileptic seizures, the mother is afraid that something will happen during sleep. The mother’s occupation with an impaired child is possible because Anastasia Olfert has a family support network. Her parents help take care of Aurora or accompany her to the hospital, among other things. \u00abNot all parents have the resources to be employed as I do, and I am very grateful for that.\u00bb[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00bb1_2″ _builder_version=\u00bb4.19.4″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2023\/02\/NightWatch_please-help-me_2.jpeg\u00bb title_text=\u00bbNightWatch_please-help-me_2″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb custom_margin=\u00bb-25px||||false|false\u00bb custom_padding=\u00bb||||false|false\u00bb hover_enabled=\u00bb0″ global_colors_info=\u00bb{}\u00bb sticky_enabled=\u00bb0″]<\/p>\n

During rehearsals with the DIN A 13 tanzcompany, Aurora is in the middle. Photo: private<\/span><\/i><\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]In June 2021, the attending physician at the SPZ Cologne prescribed NightWatch. Mrs Olfert had tried NightWatch before (carrying position on the arm and then on the leg due to BNS epilepsy) and was very satisfied. Mother and child slept well because they could rely on an aid with high sensitivity. The doctor recommended NightWatch because of its multimodality and mobility. Measurement of heart rate, movement and body position is more appropriate for the child’s seizure types. The physician justified this in her favourable letter to the health insurance company.<\/p>\n

The HEK rejected the application for NightWatch and recommended Epicare. The objection of the mother with a renewed justification from the physician was repeatedly rejected by the health insurance. There was no call from the health insurance company or any personal contact, the requests were formally rejected without further justification. \u00abParents have to justify themselves all the time when they have a need for their sick child and a need for support, while we already have a lot to do with the care and support and the necessary occupation. No one ever spoke to me, there was no face-to-face conversation and no room was given for individuality. That goes very much to the mind,\u00bb says Anastasia Olfert, looking back on the application process.<\/p>\n

Ms Olfert then became a member of the Social Association VdK Germany, a lawyer was assigned to her and the VdK took over the proceedings before the Cologne Social Court. The preparation for the procedure was a lot of work, all hospitalizations, doctor visits, findings, prescriptions etc. had to be proven from birth. An expert opinion was requested from a renowned epileptologist and submitted to the court.<\/p>\n

The social court granted the mother’s application in January 2023 and the HEK has now approved the application for reimbursement of NightWatch. From the side of the HEK came a letter in which \u00abthe assumption of costs after renewed examination\u00bb was confirmed.[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb background_color=\u00bb#f7f9fd\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]When Anastasia sleeps with her grandparents or, as recently, with a friend, NightWatch goes with her, of course. But what’s even more important to Aurora is that Yoyo, the NightWatch stuffed animal, goes along. \u00abIf Yoyo is with me, Mom, then I’m not alone, then we can both go to bed and we don’t miss the wiggle,\u00bb Aurora said.[\/et_pb_text][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_image src=\u00bbhttps:\/\/nightwatchepilepsy.com\/wp-content\/uploads\/2023\/02\/NightWatch_please-help-me.jpeg\u00bb title_text=\u00bbNightWatch_please-help-me\u00bb _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][\/et_pb_image][\/et_pb_column][\/et_pb_row][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb0px||||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]Aurora asleep <\/em>\ud83d\ude0a. Photo: private<\/em>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section fb_built=\u00bb1″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_row _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb custom_padding=\u00bb||0px||false|false\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_column type=\u00bb4_4″ _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb][et_pb_text _builder_version=\u00bb4.19.5″ _module_preset=\u00bbdefault\u00bb global_colors_info=\u00bb{}\u00bb]In the near future, Mrs Olfert would like to do a mother-child-cure with her daughter and FAMOSES refresher training again. She likes the contact and exchange among like-minded people. From August 2023, Aurora will go to school (1st grade). They have found the \u00abActive School\u00bb, a supportive, integrative school, where several children with epilepsy are enrolled and which both are already looking forward to.<\/p>\n

When asked where she finds her energy, Anastasia Olfert replies \u00abI get the energy from my parents’ house and from my work with people who feel that they have different needs and that it is natural to have different needs. I look after myself, I also had a good social worker and get support from Family Respite Services, who also already know well how to deal with NightWatch.\u00bb<\/p>\n

And when asked how she experiences her daughter’s \u00abwiggle\u00bb as a mother, she says \u00bb When one body seizes, the other (the watcher, caregiver) seizes too. The parents have to be fine for the kids to be fine. A year ago I had a prolapse, and that’s when I realized I couldn’t go any further, I had no strength left. With the help of physiotherapy and osteopathy, I overcame the pain without surgery. A lot of things often just take time and patience. Of course, you have to do something to make things work out, and for that, it’s important that you know your resources and can fall back on them.\u00bb<\/p>\n

 <\/p>\n

Thank you very much for the interesting interview!<\/em><\/p>\n

All the best, Birgit E. Langen<\/em>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"

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