Flensburg Files Holiday Moments: A Boy With PANDAS

IMGP5665

During the holiday season, The Flensburg Files has been posting some memorable holiday moments on its facebook page, as a way of showing holiday spirit, as well as the true meaning of Christmas, which is showing how much we love and care about the other person(s)- family, friend or neighbor alike. This article in the series hits home for the author, as a close friend and former classmate, who also sang together in a barbershop quartet in high school, and his family are facing a rare enemy that is affecting one of their own. This is their story…..

When one thinks of a panda, we look at the furry black and white bear, who live in Asia and feast on bamboos, shoots and leaves. In fact, Lynne Truss started her book on the use of commas and punctuations with this anecdote:

A panda walks into a café. He orders a sandwich, eats it, then draws a gun and proceeds to fire it at the other patrons.

“Why?” asks the confused, surviving waiter amidst the carnage, as the panda makes towards the exit. The panda produces a badly punctuated wildlife manual and tosses it over his shoulder.

“Well, I’m a panda,” he says. “Look it up.”

The waiter turns to the relevant entry in the manual and, sure enough, finds an explanation. “Panda. Large black-and-white bear-like mammal, native to China. Eats, shoots and leaves.

Jamison Nestegard is nine years old and the youngest of three children belonging to the parents, Sid and Rebecca.

Jamison has P.A.N.D.A.S, but not the furry bears that you can keep as pets- especially in a town, like Jackson, Minnesota, which has its really cold and snowy winters. P.A.N.D.A.S love warm and humid regions.  The P.A.N.D.A.S we’re talking about here is a serious disorder that starts with a physical illness in a form of strep bacteria and later affects the nervous system.

The full meaning of P.A.N.D.A.S is Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococci. It was discovered by  Dr. Susan Swedo, Dr. Henrietta Leonard, and Dr. Judith Rapoport in the 1990s and is characterized by the body’s own antibodies to streptococci which attack the basal ganglion cells of the brain. In short, the body’s own autoimmune system cannot respond to strep bacteria resulting in its build-up in the brain, causing several psychological abnormalities, such as obessive compulsive disorder (short, OCD), tics, anxiety, enuresis or urinary frequency, sleep disorders, behavioral regression, aggressiveness, hyperactivity, hallucinations, eating disorders, wide pupils, increased sensory responses, deterioration of fine motor skills, short term memory loss, and gastro-intestinal complaints.  Patients with P.A.N.D.A.S have at least 75% of these symptoms, yet research revealed that most patients with P.A.N.D.A.S have all of the above-mentioned symptoms.  Symptoms usually begin between the ages of 5-7, but can begin as early as 3 years of age, yet as the bacteria builds in the brain, the symptoms progress over time. According to the P.A.N.D.A.S Network, the disorder affects one in every 200 children in the US alone.

According to Rebecca in an interview with the Files, Jamison’s symptoms started at the age of six and started from there. “Jamison’s case started with tics and progressed from there.” She added “His symptoms dramatically increased over the next few months.  His latest list of symptoms include tics, OCD, anxiety, sleep disorders, wide pupils, increased sensory responses, deterioration of fine motor skills, short term memory loss, aggressiveness, gastro-intestinal complaints, and behavioral regressions (severe separation anxiety, baby talk, etc.).”  After visits to countless physicians and specialists in the last two years, Jamison was diagnosed with P.A.N.D.A.S last month. Yet the discovery of the disorder came by chance. The reason: “We saw behavioral therapists, counselors, pediatricians, neurologists, psychiatrists, and occupational therapists. He was seen in offices, E.R.s, extensive outpatient programs, and even hospitalized. No one had an answer or offered a direction to go in.”  The discovery of P.A.N.D.A.S came through an employee working for the county human services via colleague who had received an e-mail about this debilitating disorder. After reading the information, it was revealed that Jamison had all but one of the symptoms of P.A.N.D.A.S. Research later led to a specialist in Chicago, who, after a visit, confirmed the diagnosis after undergoing tests for the disorder. Miroslav Kovacevic, MD FAAP is the practitioner who has been working with the disorder for almost half of the 40+ year career and has received numerous accolades for his research and discoveries. His research has identified the symptoms and possible causes of P.A.N.D.A.S, as well as possible treatments.

Currently, Jamison is undergoing treatment for P.A.N.D.A.S with his mother at his side in Chicago, while her husband Sid and the rest of the family are working on a fundraiser and have already set up a fund to collect money for the treatment. According to Rebecca, for one treatment alone, it costs $13,000! P.A.N.D.A.S is a relatively new disorder but one full of controversy as many specialists in the fields of medicine refuse to recognize the disorder. Health care providers in Minnesota and the region have never heard of P.A.N.D.A.S. Even insurance companies will not cover the costs of any of the treatment. This includes that of the Nestegard family.

Fortunately, the family is not alone. As tightly knit as the community of Jackson is, let alone the southern half of Minnesota where the author was born and raised, friends and family members as well as those who have a direct connection with P.A.N.D.A.S have come together to understand the disorder, address it to the public and give Sid and Rebecca some much-needed support so that they can help Jamison overcome the disorder. With the identification of the disorder already confirmed, the goal is for the public to understand the gravity of P.A.N.D.A.S and encourage parents, whose child has symptoms similar to Jamison’s, to come forward and share their stories and provide them with whatever treatment is available, no matter where or how.

Already in place are a few groups that advocate for the diagnosis and treatment of P.A.N.D.A.S. They include the P.A.N.D.A.S. Parent Support group, P.A.N.D.A.S. Network, and  Parents/Caregivers of Children With P.A.N.D.A.S. All of these groups are from the Chicago area.  A Midwest P.A.N.D.A.S. Conference was launched in 2015 at the Washington University in St. Louis, where parents, caregivers and physicians convene to share ideas and information on the symptoms and causes of this rare disorder. Other P.A.N.D.A.S groups exist in the US but only rarely, according to information in the interview. In Europe, there exists no such organization to date, nor has it been confirmed as a disorder or even disease by the World Health Organization.  Because of its rarity, the plan is to bring Jamison’s experience to the forefront to provide awareness and options available. “The more attention we draw to the disorder the more likely we are to pass through legislation providing insurance coverage for patients and support for their families,” Rebecca stated in the interview.  Already launched is a blog bearing the same name, she has been keeping a diary with information and hardships dealing with Jamison and his fight with P.A.N.D.A.S. A link to the blog can be found here. Letter campaigns to schools, pediatricians and legislature will follow. Blood drives are being considered as “….the treatment uses IV immunoglobulin (IV), which is made from plasma through blood donations,” Rebecca states. With Jamison as an ambassador, it is hoped that with each drive and speech, the attention pertaining to P.A.N.D.A.S will come to the forefront also through the media outlets, including TVshows and documentaries and even social media.

As for Jamison’s cause, a fund-raiser is being established for him, which is scheduled to take place on:

18th December, 2016 at Riverside Elementary in Jackson, Minnesota from 9:30-12:30 (map enclosed here)

In addition, a fund has been set up where you can donate money and resources to help with the expenses with P.A.N.D.A.S. You can donate your money to Bank Midwest. The address: 509 3rd St, P.O. Box 49, Jackson Minnesota, 56143 Please make your checks payable to The Jamison Nestegard Benefit Fund.

A GoFund Me account has also been set up to help pay for the expenses involved with the treatment and other costs associated with it. To donate, you can click here.

Family is the core of one’s life, the source where the individual grows up with love. When threatened by such a debilitating disorder, like P.A.N.D.A.S, the family finds the causes and treatment, so that the individual can have a fulfilling life, no matter what the cost or the distance. When there is a will to live, there is a way to have a fulfilling life. With Jamison living a life as he is living- with close family and friends, Sid and Rebecca, as well as the rest of the family and friends are doing all what they can to ensure that he can live to tell others of his experiences. And this is an example of how we should devote our time for our loved ones, especially for the holidays.

An excerpt of the diary of Jamison’s experience with P.A.N.D.A.S can be found in the wordpress version of the Files, which you can access here and subscribe to follow. It is also hoped that when read on the opposite side of the Atlantic that many Europeans and people in other regions are willing to step forward to help.

 

FF new logo1

Americans in Germany 2: Hometown Locals

Left to right: Jason D. Smith, Amanda (Draine) Sutton, Kristin (Svoboda) Krahmer, Brian Krahmer. Photo taken by Birgit Smith in 2014 in Jena.

There is an idiomatic expression that best describes a well-travelled and open-minded person:  Being a hometown person is good, travelling around is better, being abroad gives you the best.   During the author’s time in Germany, one of the observations that is definitely noticeable in the past decade is that the world is getting much smaller. It has nothing to do with the increase of goods from Germany that can be bought in the US and vice versa, but more to do with meeting people from your college town or even your hometown. During a trip to Flensburg in 2010, the author encountered a person, whose daughter went to high school in Windom, Minnesota as an exchange student! Located 40 km northeast of Worthington, which has an exchange program with Crailsheim, as well as 110 km west of New Ulm, a predominantly German city, it would be considered unusual to have a German visit a small town of 4500 inhabitants for a full year, a third as many as the two aforementioned communities.

However, what would be a reaction of the readers when they found out that four people from an even smaller community- namely Jackson, located 30 km south of Windom- are living in Germany. And all of them have an age difference of only four years?  This is what Jason Smith, Brian Krahmer, Kristin Krahmer (née Svoboda) and Amanda Sutton (née Draine) are doing.  Since 2014, the four people have been living in Germany, and albeit they live far apart, they have one thing in common: Germany is considered home to them. In this series on Americans living in Germany, the Files’ Steve Schorr asked the four people individually about their motives behind moving to Germany and comparing life there to that of their hometown. This will be divided up into two parts due to length and content. This is part I, with part II to follow.  Before moving to the questions, a brief profile of the four people:

Jason D. Smith-  Jason has lived in Germany the longest, having resided there since 1999. He graduated from Jackson High School in 1996. After three years at Concordia College in Moorhead, Minnesota, he came to Germany as a foreign exchange student at the Friedrich-Schiller-University in Jena and since graduating in 2001, has been teaching English at various institutions in and around Jena and Erfurt, with the exception of a two-year stint in Bayreuth at the university. He’s currently pursuing his teaching license to teach English, Social Studies and History at a German high school (Gymnasium) and is expected to obtain his 1st state exam in 2016 and his 2nd by 2018. Since 2010 he is also a writer and photographer of two blogs: The Flensburg Files and The Bridgehunter’s Chronicles. With the exception of two years in Bayreuth and another two in Erfurt, Jason has been living in Jena with his wife Birgit and their seven year old daughter, Clara.

Brian and Kristin Krahmer- Brian and Kristin are the adventurous type when it comes to travelling, having lived in six different American states before moving to Germany in 2014. Kristin graduated from high school in 1996, Brian three years earlier. Married since 2000 (the same time as Jason and Birgit), the couple have done many jobs in the areas including some self-employment opportunities as carpenter, while Kristin acquired a profession as a massage therapist and Brian has 20+ years’ experience as a software developer. Since coming to Germany in 2014, they have lived in two different places in Bavaria: in Pegnitz (between Bayreuth and Nuremberg) and in their current town of Markt Rettenbach, located between Ulm and Munich near the city of Memmingen. They have a 10-year old daughter, Alexis.

Amanda (Draine) Sutton- Amanda graduated from high school, together with Jason and Kristin, in 1996 and since earned a Bachelor’s of Science in Environmental Health in 2007 and a Master’s in Radiological Health Sciences in 2009.  Both degrees were earned at Colorado State University.  After college, she spent one year working on the Hanford Site with Washington Closure Hanford as a Radiological Engineer in Washington state, followed by approximately two years working with SENES/ARCADIS as a Health Physicist out of their Denver office in Colorado before she started her family.  Her husband Andrew completed his PhD in Computer Science in 2011, also from Colorado State University.  Andrew has held post-docs in the Computer Science Departments at University of Adelaide, Colorado State University, Friedrich-Schiller-Universität Jena, and Hasso Plattner Institut/Universität Potsdam.  Amanda has lived in Minnesota, Illinois, Wyoming, Colorado, and Washington.  Since meeting Andrew, who grew up in New Mexico, they have also lived in Adelaide, South Australia and Jena, Germany.  They currently reside in Potsdam, Germany with their two children, Camden who will be three years old in November, and Daphne who is two months old.

PARTS I & II OF THE INTERVIEW YOU WILL FIND IN THE WEBSITE VERSION OF THE FLENSBURG FILES, WHICH YOU CAN CLICK HERE.

 

FF new logo

 

Bergen, Minnesota

Welcome to Bergen

After a brief hiatus due to non-column related commitments, we are now back on track to start you on the tour of the German-named villages in Minnesota. We’ll start off with the first town on the list, which is more of a village than a town, but in any case it is worth a visit if one wants to take a small one mile detour off US Hwy. 71 going from Jackson north to Windom in southern Minnesota. Bergen is one of the smallest villages in Jackson County, yet it does have a unique history that is worth noting to the tourist. The village was founded by Norwegian immigrants in 1895 and became the center of dairy commerce in its own locality with the opening of the cremery in 1897. This meant that farmers in the northern and eastern part of the county could bring in their milk for processing and sale.  While it was in business for only 40 some years, the village became popular with the Bergen General Store, which started the same time as the cremery. It provided food and clothing to nearby farmers, and it later included a gas station and a post office. It was and still is to this day the only store in the village with a store-front window. It is still in business today as it now sells antiques and collectible items, something that would entice someone to turn off the main highway and stop in for a few minutes. After that, one can go across the county road going through the village heading north into Bergen Bar and Grill, a small tavern and restaurant that is a popular place for the 30+ inhabitants and nearby farmers to this day. While I have not been in there because it was closed at the time of my visit on a cold but blue December afternoon, one could imagine a nice meal with a glass of Grain Belt beer while sitting outside, talking to some friends, watching the cars pass by and having a nice view of the village and its small but noticeable stream meandering its way past the village to the south, Elm Creek. That is- when it is in the summer time.

The Bergen Store: Photo taken in Dec. 2010

About a couple kilometers to the west of Bergen is the Bethany Lutheran Church, which can be seen from the highway looking west. While the brick building has existed since the late 1920s, the congregation was one of three in the locality that had existed since 1867, but eventually consolidated into one by 1920. The church still serves the village of Bergen and all points to the east to this day and provides one with a picturesque view of the landscape; especially along Elm Creek. Bergen is one of those forgotten villages that is tucked away in the valley where no one can see it. This is partly due to the fact that the main highway, US 71 was rerouted more than 60 years ago and what serves the village now are two county roads. However, follow the signs and head a couple kilometers down hill and you’ll see a village that is still intact and anchored with businesses one may never hear about unless you are told about it by some locals or you figure it out for yourself. In either case, this Norwegian town is one place that is worth a stop, even if it’s for a few minutes’ rest.

Bethany Lutheran Church: Photo taken in Dec., 2010

This leads to the first of many Richard Halliburton Geography Guessing Quizzes. A couple weeks ago, I posted a true and false question which stated: There is only one other Bergen in the world and that is the one in Norway.

The neighborhood of Bergen: Photo taken in Dec., 2010

If you answered false, you are right. There are 13 countries in the world where Bergen exists, apart from the most popular of them in Norway, which is the second largest city behind Oslo, with a population of 260,000 inhabitants. One can find a Bergen in Poland, Czech Republic, Canada, Belgium, Austria, Australia, New Zealand, The Netherlands, and Canada, just to name some of the countries mentioned here. Interesting enough, one can find as many as 16 towns in Germany carrying the name Bergen. This includes five in Bavaria, two in Saxony and Lower Saxony respectively, and one near Frankfurt on the Main  in Hesse. The last one was the scene of the battle of Bergen, which took place between the French under Marshall de Contades and the Allies (British and the Kingdoms of Prussia and Brunswick) under Herzog Ferdinand on 13 April, 1759. Unfortunately, the Allies lost the war to the French but there would be many more battles to come as it was part of the 7-Year War between the French and the Allies. Bergen later merged with Enkheim and is now part of the city of Frankfurt with its main feature worth seeing being the Marktstrasse- with its typical old-fashion buildings- and the city hall. The Nazi Concentration Camp Bergen-Belsen, where Anne Frank died shortly before the British liberated the camp in 1945, was located near Bergen in the district of Celle in Lower Saxony. The largest of the 16 towns known in Germany is the one on the island of Rügen in Mecklenburg Pommerania. With the population of 23,000 inhabitants, it is one of the oldest in the state, dating as far back as 1232 when the Slavic tribes settled in the town on the island. After being conquered by the Danes, the Swedes, and the Prussians, Bergen became part of the German empire under Kaiser Wilhelm I when it unified in 1871, and despite being part of the German Democratic Republic during the Cold War, it is now part of Germany since 1990, together with the rest of the former East Germany. Much of its architecture dating back to 1200s exist today and it is one of the major stops enroute between Binz and Stralsund; especially thanks to the Stresalsund Bridge, which opened in 2004 to relieve the traffic congestion along the dam, located nearby.

Elm Creek south of Bergen: Photo taken in Dec., 2010

Bergen is one of the most popular used names for a town in the world. However, these towns vary in their history and population and they are worth visiting when you get a chance. While there is a theory that stated that Bergen is associated with the Norwegian or even Scandinavian culture and their influence, based on the historic background and in the case of Germany and the Benelux Region (Belgium, Luxembourg, and the Netherlands), the geographical location to their northern neighbors, more research is needed to confirm that the Scandinavians had their influence on the region, even though some of that is proven already; especially with the one in Minnesota.

RICHARD HALLIBURTON GUESSING QUIZ ON THE NEXT VILLAGE TO VISIT ON THE TOUR: NEW TRIER

Question 2. Which country sought to conquer the city of Trier (in Germany) many times and eventually suceeded? Please include the year it happened!

a. Poland

b. France

c. Denmark

d. Spain

e. None of the above