Color Blind(31)

“Based on what you’ve told me, it seems her symptoms have become progressively worse since she came in last week. I’d like to prescribe a prescription-strength nonsteroidal anti-inflammatory drug, or NSAID, and a biologic DMARD.”



“A what?” I asked. All of these words were beginning to make my head spin. How in the hell was I supposed to relay this information to everyone else? I wouldn’t be able to remember how to pronounce everything.



“DMARD stands for disease modifying anti-rheumatic drug. The biologic DMARDs contain a TNF-alpha factor which helps treat people with AS. Basically, it’s used to help slow, and sometimes halt, the progression of symptoms associated with the disease.” He began taking out his prescription pad. “She’ll take this once per week, but I must warn you it may take weeks or months until you see some improvement.”



“Weeks or months!?” I was outraged.



“Yes, it may take that long. Of course, she may begin to see relief sooner and there may be some complications with taking this type of drug. I’m going to prescribe methotrexate. Side effects can include a sore mouth and upset stomach. It’s critical if she begins to experience stomach or bowel problems, you report them immediately.”



“Why? What would that mean?”



“She is at risk of developing Crohn’s disease, and we would want to treat it right away. Another thing I want you to watch for is psoriasis, or dry, rough patches of skin. It usually appears on the elbows, shins and other parts of the body.”



“What if these medications don’t work?”



“If the NSAID and DMARD prescriptions don’t work, we’ll begin a more aggressive treatment, but I’d like to hold off on that until we see how she responds to these first.”



He tore the prescription from the tablet and handed it to me. “I’ll ask Janice print out some information about the disease and symptoms so you have a better understanding of it. The pharmacy will go over the medications when you order them and they’ll be able to address any questions or concerns. In the meantime, I’m also going to recommend you to a pediatric rheumatologist. His name is Dr. Robert Newton.”



“Is she going to be okay?”



“The disease is completely manageable as long as you’re treating it. The most important thing is to get her in with Dr. Newton so he can do additional testing and continue her treatment plan.”



I left the doctor’s office speechless. When I reached the car, I began frantically reading the literature I’d received at the office visit, trying to make sense of everything. Motivated to become educated about Nevaeh’s condition, I studied the information before me. It was all too much for me to take in.



I called Lorraine on my way home and attempted to articulate everything the doctor had told me about Nevaeh’s disease.



“I don’t understand. So it’s genetic? Has anyone in your family ever had it?” Lorraine asked.



“No. I’ve never even heard of anything like this.”



“You know what that means? Troy must’ve been a carrier for the gene. I wonder if he even knows it.”



“That’s a good point! I never thought about Troy, but it’s easy to do when you’re the only parent raising a child; sometimes you forget about the loser who gave her to you.”



“I know I’d like to forget about him. I’m so glad you don’t deal with him anymore. Could you imagine dealing with him and trying to take care of Nevaeh right now? I’m pretty sure you’d end up in a ward somewhere.”



“For sure. I’m on the service road now and I should be home in a few minutes. When I get there, I don’t want us to talk about Nevaeh’s condition in front of her. I’ll explain it to her later, but I don’t want her to hear any negativity.”



“Mum’s the word.”



When I came home, Nevaeh was sitting in my bed, coloring a picture.



“Look, Momma,” she said as she held up the picture. “I colored this just for you.”



“Oh, thank you!” I said as I took the picture from her. “It’s beautiful.”



“What did the doctor say, momma?”



Lorraine and I sat on the bed with her. “I talked to him and he gave me a good explanation of your symptoms. You have inflammation in your body, which is what’s causing all the swelling. Dr. Herber said you need to see a specialist, but in the meantime, he prescribed you some medicine that will help you feel better.”



“I don’t have to take a shot, do I?”