«Mom, please help me, the wiggle is coming back»

Feb 14, 2023

A mother wins in the social court the assumption of costs for night-time monitoring
Do you know the DIN A 13 tanzcompany? «The DIN A 13 tanzcompany is internationally one of the few dance ensembles whose members are composed of dancers with and without physical disabilities» (www.din-a13.de). This is not about inclusion, it is about art and expressing multifaceted life in movement forms and play.
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
Anastasia Olfert is a Creative Producer at DIN A13 tanzcompany. She takes care of everything related to the management of dance productions.
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.

«Mommy, please help me, the wiggle is coming back» 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. «It is important that the children know their resources, such as strength and resilience, and that they can use them in necessary moments,» says Anastasia Olfert. «We 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.» 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.

Her bright daughter Aurora has invented the word «wiggle» for her epileptic seizures, which occur mostly during sleep, and announces possible seizures to her mother by saying, «Mom, the wiggle is coming again.» Through this word, the child is able to accept the disease and symptoms well.

Aurora was diagnosed with West syndrome / BNS epilepsy at 7 months of age.

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 «flash seizures, nodding seizures, and salaam seizures.»
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. «Not all parents have the resources to be employed as I do, and I am very grateful for that.»

During rehearsals with the DIN A 13 tanzcompany, Aurora is in the middle. Photo: private

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.

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. «Parents 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,» says Anastasia Olfert, looking back on the application process.

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.

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 «the assumption of costs after renewed examination» was confirmed.

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. «If Yoyo is with me, Mom, then I’m not alone, then we can both go to bed and we don’t miss the wiggle,» Aurora said.
Aurora asleep 😊. Photo: private
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 «Active School», a supportive, integrative school, where several children with epilepsy are enrolled and which both are already looking forward to.

When asked where she finds her energy, Anastasia Olfert replies «I 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.»

And when asked how she experiences her daughter’s «wiggle» as a mother, she says » 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.»

 

Thank you very much for the interesting interview!

All the best, Birgit E. Langen