I was glad it was summer and Nevaeh was out of school. If she had gotten sick during the school year, she would’ve already missed a couple of weeks. It made me realize that she might miss school during the year, depending on the news I was about to receive. I envisioned going to school, meeting with all of Nevaeh’s teachers and gathering her homework. The two of us would work tediously on her lessons to ensure she wouldn’t fall behind her peers. It would be so time-consuming. How would I work then?
Suddenly, I was pulled out of her thoughts when Dr. Herber entered the room. He was a small man, most likely working a few years past his retirement age. His thinning white hair and wrinkled skin gave him away. He loved children; his demeanor was always patient and kind.
“Ms. Harris?” Dr. Herber extended his hand.
“Hi, Dr. Herber.” I reached out to return the handshake. “Janice called and said you needed to go over Nevaeh’s labs with me.” My heart began to race again.
“Yes, that’s right.” He began to leaf through her chart until he found the blood test results. “Here we go.” He smiled at me, “I thought I’d misplaced her test results.”
He pulled up a stool and sat in front of me, using his lap as a makeshift table. “According to her lab work, it appears her white blood cell count is elevated as well as her CRP, or C-reactive protein. This tells us that inflammation is present. The rest of her labs checked out fine, indicating there is no virus, bacteria or fungi infection present within the blood.”
“That’s good, right?”
“Well so far, yes, but we did some additional testing. Now, I noticed in her patient history you marked a lot of ‘no’s’ regarding the family history section. With the symptoms Nevaeh’s presenting and based on these lab results, I requested additional blood testing for genetic markers which might indicate other possibilities. She tested positive for HLA-B27; it’s a genetic marker that indicates juvenile ankylosing spondylitis.”
“I don’t understand? What does that mean?” I was frightened at the words, although I had no clue as to what they meant, but it sounded terrifying.
“Ankylosing spondylitis is a condition that affects children by presenting signs and symptoms of arthritis. Since Nevaeh tested negative for any pathogenic organisms, it ruled out various types of infections. The only symptoms that seemed to fit were those of arthritis; mainly due to her chief complaint of swollen, stiff knees, ankles, toes, fingers, and back pain. Typically, those are all common ailments of those who have arthritis, which prompted me to request a variety of labs that would indicate arthritic diseases.”
“I still don’t understand. What’s causing the fever? I thought a temperature meant your body was fighting some sort of infection.”
“Not always. Fever can present during a sudden onset of symptoms, including those when the body’s autoimmune system is on the defense. It’s her body’s way of fighting itself. With the highly elevated levels of white blood cells and CRP, it makes perfect sense.”
“How do we fix it and why is she so weak and tired? Does arthritis cause that?”
“Ankylosing spondylitis, or AS, isn’t just arthritis. It can affect other organ systems such as her bowels, skin and eyes. Her lethargy and weakness are occurring because her body’s fighting the disease. It's a hell of a battle for anyone to deal with, especially a little girl as small as her.”
“What do we do now?”
“Now, you’ve been giving her ibuprofen, correct?” he asked, looking through the chart.
“Yes. I’ve been giving it to her as directed on the label, according to her weight and age.”
“Good, the ibuprofen will help reduce the inflammation and ease the pain she’s experiencing, but due to the progressiveness it has taken on Nevaeh, I think we need to ensure she’s physically active. Physical activity will help keep her joints mobile and decrease the stiffening.”
“But she’s been so tired and weak that she doesn’t want to get out of bed. I’ve been carrying her around the house because she doesn’t have the strength or energy to go about the day.”
“Stop, make her get up and walk; it’s good for her. You’re only helping the condition worsen its effects on her. I recommend physical therapy. Another thing you might want to try is hot and cold packs. This will also help ease the inflammation by relaxing the muscles and reducing joint pain.”
“So your answer is to force her to exercise, feed her a strong diet of ibuprofen and give her hot/cold packs?”