Individual Education Plan or 504 Plan for Children with Sickle Cell Disease: Modifications and Accommodations to consider

There are several characteristics that set Sickle Cell Disease apart when it comes to education. Teachers, schools and parents alike need to be aware of there recommendations, if they want these children to attain their full potential.

Unexpected absences: The school should make allowance for a higher number of school interruptions for health reasons (medically excused tardy, absent, or early dismissal days).

Decreased stamina and strenght: Adjustment to physiocal education expectations and grades to reflect decreased stamina, energy and endurance. If the school grounds are extensive, some students may need to use a wheeled backpack, keep heavy books in the classroom, have more time to pass between classes, or other accommodations to allow for stamina and strenght differences if class-to-class transitions are physically demanding.

Temperature extremes can trigger sickle cell pain crises: Bus pick-up in front of home on cold winter days;alternative plan for recess or outdoor physical education on days when the weather is extreme. Protection from prolonged exposure to very cold or very hot temperatures as well as protection from extreme temperature changes like running into cold weather from a warmroom or jumping into a cold pool.

Dehydration can trigger sickle cell pain crises: Water bottle at deskwith free access to water for drinking at school. Ensure that the child likes the taste of the water and is actually drinking it. If not, provide an alternative beverage for the child to ensure adequate hydration.

Increased metabolism due to higher red cell turnover causes more hunger: Ensure that the child is not hungry and do take any complaints of hunger seriously. Provide quick, healthy , snacks in locker or from teacher or school nurse to sustain energy.

High fluid intake and more urination: Provide more frequent excused bathroom breaks. In addition to haveing to drink a lot, children with sickle cell disease are not very efficient at concentrating urine, so are less capable of holding urine. Some may not be able to hold it at all and have to go when they need to go.

There may be medications to take: This is especially true of medications for pain, called ‘as needed’ medications. These children should always be taken seriously when they complain of pain. Pain is one of the hallmarks of sickle cell disease and is unpredictable, and severe. Ensure that pain medicines are always available for the child in case of pain.

Allow for school nurse visit and nurse management if child complains of pain. Create a nursing care plan with the child’s parents and school nurse so that that school and family agree about when to call the parents, and when to call 911.

FAST response is necessary for good health: Teachers, lunchroom and playground supervisors, as well as nurses should be educated to recognize and know what to do in case of warning signsof stroke and of an acute painful episode including  acute chest pain.

Attention, organization, short term working memory, learning and speed of processing can be directly affected by sickle cell disease: For some individuals, they may requirerelated services from Learning Disabilities/ADHD specialists, speech-language therapists, occupational or physical therapists, DAPE and AT.

Self-regulation of mood and impulsivity, self esteem, social skills and self-advocacy: these can be directly affected by sickle cell disease: SCD affects brain functions eitrher overtly through strokes of covertly through silent strokes or poor neurocognitive functions. The degree varies and in some extremes children may need psychologists, counsellors or special educators.

This addendum was originally produced by Karen Wills of Psychological Services, Children’s Hospitals and Clinics of Minnesota and is published here with her permission.

About the Author:

Pediatrician, Tropical Pediatrician, Sickle Cell Disease Advocate,Anti-obesity warrior, Youth Mentor, Early Adopter and ardent Born-Again Christian. He believes in helping people achieve their dreams through free exchange of information. He is married with children. He has been the chairman of SCDAM since 2008.

M Osita Nwaneri – who has written posts on Sickle Cell Disease Advocates of Minnesota.


Filed under SCD PLANE, Sickle Cell Disease

  • Karen Wills

    Here is an updated pain management plan for school nurses, it has to be adapted to each individual child and approved by a doctor, but this might be a place to start some school-to-hospital communication:
    Pain management plan Ten basic steps for when a student feels sickle cell pain:

    1. Drink a lot (water, juice, milk, soup, jello, ice, sherbet) & eat healthy snacks (protein).

    2. Distract him/herself (concentrate hard on work, play, prayer, or breathing).

    3. Rest in a quiet spot; relax on his/her own; use relaxation strategies.

    4. Tell Parent (at home) or a teacher, coach, playground or lunchroom assistant (at school). All school staff should send the student to the school nurse if he/she complains of pain at school.

    5. Parent or school nurse checks for a fever; then calls the Hematology Clinic (and nurse calls Parent, if the student is at school). IF THERE IS A FEVER DO NOT GIVE PAIN MEDICATION (TYLENOL OR IBUPROFEN); CALL THE CLINIC IMMEDIATELY.
    Parent should call the Clinic to help decide if unsure about sending the student to school.

    6. After talking to Hematology Clinic, if there is no fever, school nurse (or Parent) provides Tylenol or Ibuprofen, warmth (heating pad set on low; hot water), massage, rest. The student should return to class ASAP. If he/she must stay home, it should be fairly boring — never more entertaining or enjoyable than going to school would have been.

    7. If pain persists more than 2 hours, then nurse or Parent can give a narcotic analgesic. This medicine might make the student groggy. He/She might need to nap in the nurse’s office, then return to class later. If he/she is groggy she should be in school anyway, but Parent or nurse should notify the teacher, so the student is not required to take tests that day. The student should have time for re-teaching of class work taught on days when he/she is groggy or in pain. Note that medication can also help him/her be more alert, and learn better, when it controls distracting pain. Some students take hydroxyurea (a medicine that reduces the number and severity of sickle pain crises). Hydroxyurea may improve their alertness and learning due to better blood circulation. It does not cause problems with alertness or learning.

    8. If pain persists, call Hematology Clinic again; the student might have to come in to the Clinic or the Emergency Department (E.D.). At the Clinic or E.D., The student might get IV fluids, medicines, or (as a last resort, respecting family’s religion), a blood transfusion. If pain improves, the student might be sent home.

    9. Sometimes the student might need to be hospitalized (this is usually just for a few days). The student should return to school as soon as possible. There should be a plan in place for making up any work that is missed, or waiving some work. Pain and medications may make it impossible for the student to complete work during the absence.

  • Karen Wills

    Also, check out the PACER new fact sheets on how to work with schools and health care systems, for kids with chronic health conditions. The link is

  • Daryll Wilcher Jr.

    Those are good suggestions but sometimes there’s no exceptions for having the pain meds that u need.