Infancy and the toddler years bring fun and exploration, but can also be a challenge. Here’s what parents should know about caring for your infant or toddler with sickle cell disease.
Sickle Cell Disease Specifics
During the infant and toddler years, parents should:
- Get to know your child’s sickle cell team: doctor, nurse, social worker, psychologist
- Know what to expect for routine visits (every few months) and sick visits (emergency room and hospital)
- Get educational materials and an Identification Card from your sickle cell staff
- Know important phone numbers and who to call for concerns
- Be sure to have:
- Thermometer – have one on hand anywhere your child spends time
- Pedialyte – used for extra hydration in times of vomiting or diarrhea
- Humidifier – useful if your child has nasal congestion
Sickle Cell Medical Concerns
- Fever – every episode of fever of 101 degrees Fahrenheit (38.4 Celsius) needs medical evaluation immediately. Do not wait. With temperatures of 99-100 Fahrenheit, call for advice. Do not give Tylenol, Motrin or other medicines to reduce a fever – call for advice.
- Problems with the spleen (splenic sequestration) – symptoms include: paleness, fussiness, irritability, increased sleeping, rapid breathing, enlarged abdomen. Prompt medical evaluation is necessary.
- Dactylitis (Hand/Foot Syndrome) – symptoms include: swelling and discomfort in hands or feet. This condition may be treated at home if it is not accompanied by a fever. Call for advice.
Call to be seen right away if:
- Fever – 101F (38.4C) or higher
- Color – very pale
- Behavior – isn't acting like usual self; won't wake up
- Stomach – vomits/has diarrhea more than once
- Color – jaundice (eyes or skin look yellow)
- Hands/Feet – swelling, tenderness, pain
- Nose – runny or stuffy nose
- Chest – cough without fever or chest pain
Medications/Doses
- Penicillin –Extremely important in preventing serious infection in children with sickle cell disease. Dose is 125 mg given twice daily. Comes in liquid: 125 mg or 250 mg per teaspoon, which may have different flavors, or 250 mg tablets. Liquid needs to be kept in the refrigerator and must be refilled at the pharmacy about every 10 days. Tablets can be broken or crushed and taken with food. DO NOT put liquid penicillin in a baby’s bottle, because it will stick to the inside of the bottle and not get ingested by the baby. Talk with the sickle cell nurse if your child doesn’t take penicillin well.
- Folic Acid – B vitamin that helps your body to make healthy red blood cells. Many packaged and prepared foods, such as cereal and bread have added extra folic acid, so extra folic acid in tablet form may not be necessary, depending on your child’s diet and type of sickle cell disease.
- Tylenol/Acetaminophen – may be used for treatment of pain. Do not give for fever unless directed by a sickle cell doctor or nurse.
- Motrin/Advil/Ibuprofen – may be used for treatment of pain. Do not give for fever unless directed by a sickle cell doctor or nurse.
Immunizations
- Children should receive all of the routine immunizations from their primary pediatrician.
- Prevnar and Pneumovax – both help to fight infections from bacteria that can cause pneumonia, blood infections and meningitis (infection in the spinal column). Prevnar is given to all newborns. Pneumovax is given at age two for children with sickle cell disease.
- Children should receive a flu shot every year after six months of age.
Screenings/Special Tests
- Hemoglobin electrophoresis (“sickle cell test”) - needed to confirm sickle cell disease, usually by two months of age. May be conducted again at 1–2 years of age in some cases to tell the difference between certain disease types. We can also help to arrange testing for family members.
- Complete blood count (CBC) and Reticulocyte count (“Retic”) – done at all well and sick visits. Each patient will establish a baseline level that is important to know.
- Liver and kidney function tests are done every year after age one.
- Oxygen saturation (O2 Sat) – measurement of oxygen in tissue. Checked with a sensor on the finger as part of routine vital signs in the clinic and in the emergency room or hospital when sick. Baseline level when feeling well is important to know.
Notify the Sickle Cell Program staff if your child:
- Has any special procedure or surgery planned and will need to be put to sleep (“general anesthesia”). Special lab tests and other arrangements will need to be made 1–2 weeks before the procedure.
- Will be traveling. We will give you a travel letter to use in case medical care is needed.
Other
- For information about developmental and social milestones at this age, visit Children’s Child Health Library.
- Choosing a child care facility may be particularly challenging for families dealing with sickle cell disease. Children’s Sickle Cell Program staff can help parents communicate with daycare staff about their child’s unique issues.
- For helpful tips on how to manage your toddler’s behavior, see Helpful Links.
- For more news and information about sickle cell disease, see Helpful Links.
The contents of Children’s Hospital of Pittsburgh of UPMC’s Web site are for informational and educational purposes only. Children’s does not give specific medical advice on its Web site. The content of this Web site is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because information contained on this Web site. The links provided on this web page are for reference purposes only. Children’s does not manage or expressly endorse the contents of third party websites.
