Special Programs Support Children with Chronic Disorders

Children diagnosed with chronic disorders such as asthma, diabetes, or celiac disease often feel like they are alone or different. Children’s National is working with these kids and their families to assure them they are not alone, and to help them lead fulfilling lives. Here are just a few of our programs, funded by donor support, that give kids the tools, skills, and confidence to manage their care: -- Brainy Camps: These programs ensure that kids with chronic disorders can experience summer camp and learn from their peers. -- Celiac Support Group: Children and teens with celiac provide peer-to-peer support in these groups. -- Children’s School Services Nurse Case Management Program: Children's National strengthens the role of the school nurse to help students of all ages manage their chronic disorders at school. See below for information about each of these programs. Brainy Camps_2Brainy Camps for Summer Fun Every child should have the quintessential experience of going to summer camp. It’s a time of independence from parents, and a time to create memories and build friends that last a lifetime. Brainy Camps give kids with chronic health disorders this experience. Brainy Camps first opened its doors in 1994 to 23 campers with epilepsy, and the program now reaches 400 campers with a range of chronic diseases, like neurofibromatosis and diabetes. The camps are about much more than swimming, running, and playing. They are an opportunity for kids to be themselves around other kids—and adult counselors—dealing with the same condition and challenges. They teach children how to control their disease by building confidence and management skills. Teens grow, develop, connect, and take on leadership roles at Brainy Camps. A Letter From a Camper’s Mom: My son with neurofibromatosis (NF) went to Camp New Friends. He was not your average 14-year-old at the time. He was very angry, and wondered why he was born different from everyone else. Why he can’t walk, run, and play the same as everyone else. When it was time for him to come home, I couldn’t wait to see my little boy get off the plane that day. But instead I saw a young man walk off that plane with his head held high and a smile on his face. He was excited to tell us about his adventures at camp, and a girl who he had asked to go with him to the dance. His NF didn’t seem to bother him anymore. He said that while at camp he talked with other kids, met new friends, and learned a lot about NF. Camp New Friends is a place where my son can go and no one treats him differently because of his NF. It’s a place where kids can go and just be kids and they don’t need to worry about anything except
having fun and making friends. CeliacHave Your Cake and Eat it Too The Celiac Disease Program at Children’s National offers a complete range of services for children, including medical care, nutrition education, and counseling. This program was launched in the spring of 2013, with generous financial support from Blair and Stephen Raber, whose daughter was diagnosed with celiac and treated at Children’s National. The celiac support group brings together kids who have this condition in common, offering the unique benefit of peer support. The groups enable kids to give each other tips and strategies, which can be more effective than learning from adults. Sessions may include coaching in reading nutrition labels, detecting sources of gluten, or handling school parties where other children eat food they can’t have. The program was featured in The Washington Post -- read "Skipping Birthday Cakes and Other Treats, When You're a Kid with Celiac Disease." SONY DSCHealing More than Cuts and Scrapes School nurses are on the front lines of helping families manage the overall well-being of their children. Studies show that school is a natural setting for children, and it’s where kids are more comfortable talking about their health needs and care. An increasing number of students enter schools with chronic health conditions that require management during the school day. Children’s National is strengthening this role through its Children’s School Services Nurse Case Management Program. This program uses a holistic approach by treating the child, family, school, and medical center as a unit, committed to meeting the child’s immediate and long-term health needs. On some days this may mean making sure that individual health plans for chronic conditions like asthma or diabetes are up to date and on file. Other times it entails coordinating a child’s tube feeding so that it does not disrupt classroom time. With the help of the sophisticated database at Children’s National, physician, emergency room, and hospital visits are cross-referenced with the child’s school information. This coordination alerts nurse case managers and school nurses to be prepared to make the appropriate follow-up with the family should a child receive care anywhere within the Children’s system. Ultimately, parents can be assured that their child’s health is in good hands.

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