Detention Leads to Juvenile Arthritis Diagnosis for 11 Year Old


Most eleven year old boys love physical education class, but Caleb Hestad refused to do his push-ups, and received both detention and a diagnosis of Juvenile Idiopathic Arthritis (JIA). August is Juvenile Arthritis Awareness Month and an opportunity to bring attention to the stories of children like Caleb who face the daily challenges of arthritis management and treatment.

According to the Arthritis Foundation, there are six different types of juvenile arthritis, depending on the number of joints affected. Caleb was diagnosed with polyarticular arthritis, which means it affects five or more joints (ankles, knees, wrists, and fingers) in his body. According to Mayo Clinic, there are four common signs of juvenile arthritis:

  • Pain – While the child might not complain of joint pain, he or she may limp— especially first thing in the morning or after a nap.
  • Swelling – Joint swelling is common and is often first noticed in larger joints such as the knee.
  • Stiffness – The child may appear clumsier than usual, particularly in the morning or after naps.
  • Fever, swollen lymph nodes and rash – In some cases, high fever, swollen lymph nodes or a rash on the trunk may occur and is usually worse in the evenings.

Caleb’s pain from trying to do push-ups left his mother, Lori Hestad, wondering if Caleb had somehow broken his wrist. X-rays helped diagnose Caleb and his treatment plan primarily focuses on managing pain and inflammation. Every six months Caleb has routine doctor visits with specialists at Mayo clinic to assess his treatment regimen and prognosis using MRIs and x-rays to monitor bone development and detect joint damage.

Flare ups of increased symptoms and inflammation can last a day or many months. Those diagnosed with JIA are also at higher risk of developing uveitis, an inflammation of the middle layer of the eye that, if left untreated, may result in cataracts, glaucoma and even blindness. Caleb and his parents keep watch for this condition, and he is examined regularly by an ophthalmologist.

Medications, diet, and exercise all play a key role in keeping Caleb healthy. His complex medication regiment includes weekly injections to help relieve symptoms and suppress the immune system to prevent an attack on his joints. Eventually the plan is to wean him off his one medications one at a time and then monitor for flare ups. He could possibly be off all medications in a few years.

Medications, diet, and exercise all play a key role in keeping Caleb healthy. His complex medication regiment includes weekly injections to help relieve symptoms and suppress the immune system to prevent an attack on his joints. The plan is to eventually wean him off his medications one at a time and monitor for flare ups. He could possibly be off all medications in a few years.

“The medications were probably the hardest to adjust to,” his mother stated. “Sometimes the medication makes him thrown up. At first he was annoyed with the shots, but now he takes it all in stride.”

Beyond medication, Caleb’s diet plays a significant role in avoiding flare ups. While there is no cure for arthritis, diet can have a positive or negative impact on symptoms. High fats, sugar and process foods all cause inflammation. The Arthritis Foundation is a great resource for arthritis-friendly diet tips.

Hestad explained, “We eat lots of chicken and fish and avoid red meats, as they tend to increase inflammation. We also avoid sugar and sweets, and Caleb especially likes the pineapple anti-inflammatory shakes.”

Caleb is now 15 and stays active playing hockey. Exercise is beneficial for those with a JIA diagnosis to keep the joints flexible and to maintaining a healthy weight.

“Sometimes I worry about him being in such a contact sport, but we follow his lead. We monitor flare ups and treat them as they happen. Getting him to slow down when he has a flare up can be challenging,” Hestad explained and laughed as she added, “His play station comes in handy. Don’t all kids need a break from physical activity at times?”

In the next few years as Caleb gets older, he will continue with routine doctor appointments, ophthalmology appointments, medications and eating right to help keep symptoms at bay.

Hestad is encouraged by Caleb’s progress, “They must have the right combination of treatment going as he hasn’t had any flare ups in two years.”

Like all teenagers, he does not want people to treat him any differently because of his diagnosis. Hestad used to be bothered when people would say “kids don’t get arthritis”, but now she uses it as an opportunity to educate.

Despite Pressures Nursing Home Caregivers Shine

With the world pandemic of the coronavirus, the nation’s nursing homes have been experiencing the pressure of protecting their residents from isolation and infection. The close living quarters of a nursing home means a high risk of spread for this respiratory virus. The New York Times indicates that over 40% of the US coronavirus deaths are linked to nursing homes: a significant cause for concern for those who live in a nursing home or have a loved one residing there.

Nursing homes have taken many precautions to prevent this coronavirus from entering their facilities, and the Centers for Medicare and Medicaid (CMS) has created a toolkit featuring their innovative solutions. One of the first recommended guidelines is to restrict all visitors and volunteers and to cancel all group activities. While effective for decreasing the risk of spread, the resulting isolation may impact mental health and contribute to a decline in overall health.

This impact spreads beyond the resident to the families, loved ones, healthcare providers and the nursing home staff as a whole. Nancy McDonald, RN, CPHQ, daughter of a nursing home resident and director of quality improvement for the South Dakota Foundation for Medical Care (SDFMC), recognizes the value of a caring staff.

“Just seeing the compassion shown to my father gives me peace. When I cannot be there, he is treated with respect and love and for that I am truly grateful!”

Right: McDonald’s father is led outside for his first family visit in months holding the hand of a nursing home caregiver.

In her positions with SDFMC, McDonald has seen the benefits of partnerships and collaborative efforts to support nursing home care. As a partner of the Great Plains Quality Innovation Network, SDFMC is involved in the current quality improvement initiatives identified by the Centers for Medicare & Medicaid Services. In addition, SDFMC supported almost 60 South Dakota nursing homes in the implementation of Music & Memory®, a program focused on helping those with physical and cognitive challenges to find renewed meaning and connection in their lives through the gift of personalized music.

Activities, such as Music & Memory, are often the daily highlight for residents and staff by providing a time to engage, socialize, communicate, and laugh. The limitations imposed by the COVID-19 guidelines has led nursing home activity directors to seek creative solutions. The Life Care Centers of America has pulled together a collective list of activities to help keep their residents active, social and healthy. Below is a brief list of potential activities:

  • Room service cards to allow the resident to choose their activity
  • Art/coloring contests
  • Pen pal program
  • Traveling beauty cart (if they look good, they feel good)
  • Name the baby photo, name the wedding photo, scrapbook displays
  • Rolling activity carts
  • Virtual tours of national museums online

Beyond activities, the fluctuating number of cases also impacts visitation methods and hours. For those unable to visit in-person, I-pads are being used to connect via social media or live streaming options. Leading Age states that facilities can apply to purchase up to $3,000 of adaptive communicative technologies for their residents using Civil Money Penalty (CMP) Reinvestment funds.

During nice weather, many facilities have scheduled visitation for families and loved ones in the facility’s outside spaces and courtyards. Many remain in their rooms and interactions with caregivers and other staff members are lifelines.

McDonald reflected, “The shear impact of the coronavirus pandemic on the long-term care industry, staff, residents and loved ones is immeasurable. Also immeasurable is the impact of the true love and compassion caregivers express on a daily basis!”

In her view, caregivers are angels and deserve her full gratitude for their presence in her father’s life. “Thank you for showing up! Thank you for caring! Thank you for taking the time! Thank you for keeping him busy! Thank you for keeping him safe! Thank you for being there! Thank you for connecting with us! Thank you for holding his hand! “

Impact of Music & Memory Spans a Decade

Elderly gentleman enjoying music on headphones

For the past ten years, Music & Memory has been using personalized music to help individuals with a wide range of cognitive and physical conditions to engage with the world, ease pain, and reclaim their humanity. 

As the national program continues to promote the power of music, they recognized the South Dakota Foundation for Medical Care (SDFMC) Music & Memory staff for implementing the program in 57 facilities across the state. 

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Thriving and Surviving Cancer Program to Expand in Western South Dakota

The South Dakota Foundation for Medical Care (SDFMC) was recently awarded a South Dakota Department of Health Cancer Coalition grant focusing on the Better Choices, Better Health® (BCBH) SD Cancer: Thriving & Surviving program. 

The program will serve those with a cancer diagnosis and their caregivers residing in the designated 13-county target area of western South Dakota from January 1 through December 31, 2020.  Participants will learn ways to improve quality of life and cope with the effects of cancer treatment through tools and resources shared over a six-week course.  

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CMS Announces Quality Award

Hand Together above an office table

On November, 8, 2019, the Centers for Medicare & Medicaid Services (CMS) awarded a five-year contract to Great Plains Quality Innovation Network to serve as a Quality Innovation Network – Quality Improvement Organization (QIN-QIO) under the recently launched 12th Statement of Work.

 QIN-QIOs serving under the 12th Statement of Work will provide targeted assistance to nursing homes and communities in small and rural areas, those serving the most vulnerable populations and those in need of customized quality improvement. Through this body of work, CMS is focusing on results, protecting taxpayer dollars, and most importantly, ensuring the safety and quality of care delivered to every beneficiary.

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