Tips for Supporting Students with Sickle Cell Disease

scd-support-for-studentsSOURCE: The Centers for Disease Control (PDF)

Why We Created this Booklet
The purpose of this booklet is to describe sickle cell disease (SCD) and identify roles for teachers, other school staff and parents/caregivers to support students living with SCD. We identify ways SCD may impact a student’s daily life and describe how school staff can make accommodations (i.e., adjustments to the classroom setting or instruction) to meet the needs of children who may experience health problems associated with SCD during the school day. The content covers information on ways SCD might impact education outcomes and information about pain, stroke, and symptoms associated with SCD that school personnel should know. Each student’s experience with SCD is different and the tips discussed should not replace any medical advice a person with SCD receives from their doctor.

You Play An Important Role
School personnel and caregivers play an important role in a student’s health and academic success. For students living with a chronic health condition like SCD, communication between parents and school officials is essential in supporting positive academic outcomes. As a result, we have developed this customizable booklet. We encourage
teachers, students, and caregivers to read all sections and tailor the information that relates specifically to their situation.

      • Section 1: About Sickle Cell Disease
      • Section 2: Tips for Teachers, Nurses, and School Administrators

        • Pain episodes are a common health problem of SCD. Pain may occur anywhere in the body (most commonly in the arms, legs, abdomen and back) and may last a few hours, days, weeks or longer. Pain may ease or get worse over this time or may become so severe that a child needs to be hospitalized. The unpredictable nature of pain associated with SCD may create a sense of uncertainty that may cause unusual behavior. A child who is typically easy-going and attentive in the classroom may become grumpy, uncooperative and unresponsive. Many children with SCD suffer with pain on a daily basis and still behave “normal,” focusing on their school work and engaging in classroom activities. It is important to recognize when a student’s pain is worse than usual or no longer tolerable.

          Best practices: Be responsive to complaints of pain. A student will come to know whether their pain is mild or moderate and will pass, or whether it is necessary to call his or her parents or go to the hospital. If a child has pain during the school day, schools can help by allowing the child time to rest and then returning him or her to class, if possible. Do not encourage the student to simply bear the pain. In clinic or hospital settings, doctors often use a scale of 1-10 to rate pain. Use this type of scale to check in periodically with a student to learn the difference between the student’s usual level of pain and when emergency contacts need to be called.

          Create an individualized care plan for each student with SCD. Care plans should have input from the teacher, school nurse, the student, and his or her family. Plans may include instructions about giving pain medicine, including who is responsible for giving the medicine, and how to decide which medications to give to the student. It is important to refer to the rules of your local school district when developing plans regarding giving medicines to students during the school day. Students with SCD are often prescribed strong medications, including narcotics (e.g., Tylenol with Codeine, Darvocet), anti-inflammatory medications (e.g., Toradol, Advil) or steroids (e.g., Prednisone) to relieve pain. It is not always in the student’s best interest to leave school or be absent due to pain; however, always notify parents if their child’s health status changes during the school day.

        • Children with SCD are at greater risk for certain bacterial infections compared to other children. A fever of 1010 Fahrenheit (380 Celsius) or higher, could mean the child has an infection. Infection is the leading cause of death in young children with SCD, and frequently leads to hospitalization. If fever is accompanied by pain in the ribs or chest, coughing, and difficulty breathing, this may be a sign of acute chest syndrome, a serious medical emergency.

          Best practice: Be alert for signs of fever. Teachers should have access to an individualized care plan for a student with SCD that lays out instructions for what to do if a fever occurs during the school day. Children with SCD and fever should be seen by a doctor to evaluate the child for health problems, such as pneumonia or other infection; so contact the student’s parent(s) immediately.

        • SCD is one of the most common causes of childhood stroke. Strokes are small brain injuries that may impact learning. Between 10% and 20% of children with SCD will have a symptomatic stroke, meaning that the stroke will produce physical changes in the student. Most commonly, a stroke can happen if sickled red blood cells get stuck to walls of blood vessels and clog blood flow to the brain. Signs of stroke include severe headaches, dizziness, visual changes, sudden onset of weakness (not due to pain) in one limb or side of the face, numbness, typically in the face or the limbs, sudden inability to produce speech, or a seizure. More than 25% of children with SCD suffer from a silent stroke by six years of age. Silent strokes do not have the same clear signs of symptomatic strokes, but may be evidenced by changes in a student’s behavior, concentration, or sudden decline in the quality of their schoolwork. Silent strokes are a serious problem that may require consultation with a doctor who specializes in the brain and behavior.

          Best practice: Be aware of signs of stroke. Teachers are in a unique position to identify changes in students’ behavior that may be linked to symptomatic or silent strokes associated with SCD. If a sudden stroke is suspected, parents should be contacted immediately and the child should be rushed to the hospital. Children who have suffered a stroke or whose medical tests indicate that they are at higher risk of stroke may need monthly hospital appointments to receive blood transfusions to prevent strokes. Create plans to help children make up missed school work. If a student with SCD begins to show gradual declines in academic performance, attention, or memory, teachers should contact the student’s parents so that medical attention can be sought if necessary.

    • Section 3: Tips for Parents and Other Caregiver

– Amber Jones (Mother of a child with SCD)

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