Daily Living

Routine Medical Care

• Give your child the medicines that doctors prescribe. Penicillin must be taken twice every day. IMPORTANT. The penicillin must be given each morning and each night. If you forget a dose, don't double or triple the dose. Restart it as soon as possible. If your child goes away on a trip, be sure to take enough penicillin with you. Carry your child's Medication and Treatment Record with you to regular doctor's appointments, visits to the sickle cell treatment center, and emergency hospital visits. DON'T LEAVE HOME WITHOUT IT.
  
• An emergency card can also be given to baby sitters, parents of friends, school personnel, and family members.
  
• Take your child to your regular doctor (pediatrician or family doctor) for childhood shots and regular check-ups.
  
• Carry an emergency card with you and your child to let health care workers and others know that your child has sickle cell disease.
  
• Take your child to a Sickle Cell Treatment Center regularly.
  
• Take your child to other medical and dental specialists, as recommended by your child's regular doctor and sickle cell specialist.

Hospital Stay

• Hospital stays can frighten a child.
  
• Prepare your child by playing hospital.
  
• Take your child to visit the hospital when the child is not sick.
  
• When your child is in the hospital, visit him/her as often as possible.

Dental Care

• Take your child for a dental check-up at least once a year.
  
• Tell the dentist and dental hygienist that your child has sickle cell disease.
  
• If your child needs to have a tooth pulled, major dental work or general anesthesia is needed, ask your dentist to speak with your sickle cell doctor first.
  
• Learn how fluorides, sealants, and diet may help protect your child's teeth.
  
• Learn what you can do at home and what dental programs are offered at your child's school.

Growth and development

• Children with sickle cell anemia may be shorter than their friends of the same age. They also may have delay in puberty (sexual development). Usually, their height and sexual development will eventually be normal.
• A peer support group of other children with sickle cell disease may help your child deal with feelings and questions. Ask your child's doctor about a group in your area.

Nutrition and Diet

Your child should:

• Eat a well balanced diet for the child's age group. There is no special diet for a child with sickle cell disease.
  
• Drink plenty of fluids such as water and juice to avoid dehydration (the loss of too much water).
  
• Drink extra fluids during increased physical activity, when temperatures are warm, and during fevers.
  
• Avoid caffeinated drinks like regular coffee and soda.
  
• During a crisis, it is more important to drink fluids than it is to eat.
  
• Take the vitamin folic acid daily, if advised by your doctor.

Physical Activity

• Children should take an active part in any physical activity that interest them. Let them set their own pace.
  
• Aerobic exercise like running, swimming, walking, and biking are okay. The body loses more fluid during exercise so it is important to drink more fluids.
  
• Swimming in very cold water may trigger a painful crisis in some children. Before the child goes swimming, make sure the water is not too cold. If the water feels cold to the touch, it is probably too cold for swimming. Children should dry off with a towel as soon as they come out of the water.

Weather

Extremes of heat and cold should be avoided. Extreme temperatures may trigger a crisis. Too many clothes in hot weather should be avoided. Warm clothes are needed in cold weather but the child should not be overdressed.

Travel

• Pack a thermometer, emergency (information) card, antibiotics, Tylenol, and make sure your child can get plenty to drink.
  
• Persons with sickle cell disease can have trouble during flights at high altitudes in a non-pressurized airplane. Since commercial airlines are pressurized, flights on these planes are not a problem.

Discipline

Treating a child with sickle cell disease in a normal manner is an important part of helping the child develop a healthy identity. For parents to agree on how to discipline a child is just as important for the child with sickle cell disease as it is for other children.

Pregenency and Sexual Activity

Teenage and adult women with sickle cell disease have many more problems with pregnancy than other women. They can have children, but they need early and regular medical care during pregnancy.

Unplanned pregnancy should be avoided. As soon as you are aware that you are pregnant, please let the doctors at the hematology center know. You should also arrange to have regular visits with an obstetrician as soon as possible once you know you are pregnant.

Women with sickle cell disease can usually have normal sexual activity and can usually have children without serious problems. When your child is ready, ask your child's doctor about:

• risks of and protection against, sexually transmitted diseases such as AIDS.
  
• pregnancy and birth control options.
  
• genetic counseling (risk of having children with sickle cell disease and options).

Your Child in School

Your child can grow and become almost anything he or she wants to be in life. There are people with sickle cell disease who have become doctors, lawyers, teachers, nurses, etc.

Your child should be urged to fully participate in school at an early age. Register your child in pre-school and/or kindergarten at the right age. It is important for you and school staff to understand, however, that your child may miss a lot of school because of sickle cell disease.

It is important to talk to your child's teachers and school nurse about sickle cell related problems your child may have in school. The Sickle Cell Treatment Center staff is available to help the teachers, nurse, principal, and your child's classmates understand sickle cell.

• The School Should Know:
  
  • Your telephone number at home and/or at work so that you can be called if your child becomes ill at school.
    
  • The telephone number of the Sickle Cell Treatment Center.
    
  • Your child may need to use the bathroom more often than other children since children with sickle cell pass more urine (pee) than other children.
    
  • Your child will need to be allowed to drink a lot of fluids.
    
  • Your child may tire more easily in gym class.
    
  • Your child should not be exposed to hot or cold temperatures without proper clothing. For example during a fire drill in cold weather, your child must be allowed to put on a coat, gloves, and a hat to go outside.
    
  • Your child should be sent to the school nurse if he/she does not feel well or looks tired.

• You Should know It is Important to:
  
  • Call the school when your child is absent.
    
  • Arrange for homework to be sent home when your child is absent.
    
  • Urge your child to keep up with school work when he/she is absent or when he/she has mild pain.
    
  • Talk to the school social worker about tutoring and other services that may be available to your child.