Sickle Cell Guide
Sickle cell disease is a genetic disorder that affects the hemoglobin in the red blood cells. Hemoglobin is protein that carries oxygen to different parts of the body. The three most common types of sickle cell disease are hemoglobin SS disease (also called sickle cell anemia), hemoglobin SC disease and sickle beta thalassemia.
Teachers and school nurses need to help a student with sickle cell disease function as effectively as possible. Take a proactive approach by knowing what to do if a child with sickle cell disease becomes ill at school.
As a parent, you are your child's number one advocate. It's very important that you know about the laws for children with disabilities.
An important law is the Individuals with Disabilities Act PL 101-476 (IDEA) which states the rights of children with disabilities and of their parents. A basic part of the law is the right of parents to help decide about their child's education. IDEA says:
- States must provide a free appropriate public education to all students (ages 3-21) who are disabled.
- Children must be assessed for their disabilities, strengths and needs.
Another important law to keep in mind is PL93-112, the Rehabilitation Act. Section 504 was designed to end discrimination on the basis of a physical or mental disability in any program getting federal financial aid as well as public schools. Some children with health problems may not need or be eligible for services under IDEA but may need special help or modifications under Section 504. Some examples of modifications may include: Shortened school day/week, special equipment, modified academic coursework, etc.
Key Special Education Terms
Individualized Education Plan(IEP): A plan created by you and your child's educators. Your child's needs are reviewed, and a plan is created to meet these needs.
Student Support Team: A group of teachers that can be called together in any Georgia school. You have a right to call for a team meeting when you are worried about your child's learning needs.
Other Health Impaired: A service to children with certain health problems. To be considered, a child must have decreased strength due to illness. When children are struggling because of illness, this plan calls for classroom or schoolwork changes.
Hospital/Homebound Services: A plan for children in kindergarten through 12th grade who have missed school at least 10 days due to illness and who may miss more. A teacher is sent by the school system to your home for at least three hours a week.
Related Services: This service includes many types of help for children with special needs. It includes programs for the hearing impaired, children in need of certain therapies and special transportation needs. It also includes resources or special equipment for children with disabilities. Your child's IEP will tell you which services are need.
Advocacy Services: For more information or help getting these services for your child, call Georgia Advocacy at 800.537.2329.
What Parents Can Do
- Become active in your child's school. Get to know the teacher and school staff and maintain open communication.
- Be very clear about what you want for your child. Tell teachers about your child's illness. Let teachers know how to meet your child's school needs. Tell them what you know about your child's physical problems, such as a hard time carrying books or problems keeping up in gym when sickle cell problems occur. Also tell school staff the signs of sickle cell difficulties, such as fatigue, fever and jaundice.
- Keep in mind that if your child needs to be in the hospital, he may use the hospital's school program. You can help by bringing your child's homework to the hospital's schoolteachers so that your child may continue to receive school credit. Being a part of the hospital's school program also helps to decrease the pressure on your child by helping him keep up with his schoolmates.
- Ask school staff to share their observations of your child with you.
- Keep a good relationship with the school staff.
- Attend all meetings that are held, such as parent/teacher conferences and Individualized Education Plan (IEP) meetings, etc. Bring a friend or family member with you who also knows your child. Take notes and don't be afraid to ask for time to think about a certain decision.
- Keep track of your child's progress. Is the plan you agreed on working? Do any changes need to be made? Check in with the teacher often to see how things are going. Keep a notebook to give and receive information.
- It is important for you to understand your child's illness. The disease may cause depression, withdrawal, sleeping too much or not enough, acting out or changes in eating patterns in your child. If any of these things happen, it would help to speak to a mental health professional for your child and possibly for the entire family. It is important to seek help to deal with the pressures involved with a child with sickle cell disease.
- Be aware of the needs of any other children you may have. They may feel guilty, anxious, angry or depressed. A sibling may feel guilty because he is healthy. They may feel lonely and withdrawn because the child with sickle cell disease is getting a lot of attention, especially during periods of pain crises or when in the hospital.
Tips for Teachers
Children with sickle cell disease are faced with a number of school-related issues. The guidelines below can help the student with sickle cell disease succeed in school.
Sickle cell disease may cause many health problems such as:
- Pain crises
- Acute chest syndrome
- Anemia
- Fevers
- Strokes
- Jaundice
- Infections, leg ulcers, delayed growth, frequent urination, dehydration, operations (splenectomy, gallstone removal, etc.), kidney problems and other health issues may arise as well.
Since patients with sickle cell disease look healthy, it is often not seen as a serious illness (i. e., no obvious signs of illness such as hair loss or a wheel chair). Actually, children with sickle cell disease may be in very serious pain. Pain crises are common and cause frequent stays in the hospital. These crises may cause serious problems, which could lead to a stroke and other serious conditions. For these reasons, it is important to help a student with sickle cell disease. Here are some tips:
- Sickle cell disease may affect learning in some, but not all children. If there is concern about a child's learning, discuss this with the parents and physicians as early as possible. If a child has had a history of strokes, it may be necessary for the child to receive psychological testing to establish the child's ability to learn.
- Children with sickle cell disease may be absent a lot due to clinic visits, pain crises or other health problems. Make class work and homework assignments available to the parents to keep the student from falling behind. If the child is in the hospital, communicate with the hospital's teachers and give them the class work. If necessary, help the parent arrange tutoring for your student.
- Keep in mind that children with sickle cell disease tire more easily than other children. This is important for the physical education teacher to understand. These children should be given the time to rest when needed. Physical activity is an important part of good health, so it is best to include them even if they are hesitant. If a parent prefers that a child be excused from any activity, permission should be granted.