Helping your child manage sickle cell disease

From your first appointment through early treatment and beyond, our care team spends time with your family to develop an individualized plan. When devising your child’s comprehensive treatment plan, we’ll keep their individual needs in mind while giving you both the tools you’ll need to be educated about sickle cell disease and care guidelines personalized for them.

We also recognize the importance of teamwork. That’s why we’re part of the Chicagoland Children’s Health Alliance, partnering with Pediatrics at NorthShore University HealthSystem and the University of Chicago Medicine Comer Children’s Hospital in pediatric hematology. Through us, your child has access to even more specialists and programs.

Here are some other ways you can help your child manage sickle cell disease.

Stay hydrated

Good hydration is one of the most important things to prevent common complications of sickle cell disease including pain and stroke. Encourage and remind your child to drink recommended daily amounts of water.

Eat healthy foods

Your child has more particular dietary needs than other children. A healthy diet for your child is low in saturated fats, trans fats, cholesterol, salt and sugars. Good food choices include:

• Fruits and vegetables
• Whole grains (wheat)
• Lean meats (chicken, turkey) plus other sources of protein (fish, beans, eggs and nuts)
• Fat-free or low-fat milk and milk products

Take vitamins

Your child should take regular daily vitamins, especially if they do not regularly eat a well-rounded meal. Your child’s doctor may prescribe daily folic acid to help them produce new red blood cells.

Your child may have low levels of zinc, vitamin D and vitamin A. Check with their physician about whether they need to take supplements.

Control pain

Pain is a common symptom of sickle cell disease. Here are several things that your child can do at home to ease pain associated with sickle cell disease:

• Drink plenty of fluids
• Rest or play quietly
• Take a warm bath
• Place a heating pad or warm, moist towel on sore places
• Massage the places that hurt
• Take pain medications

There are different levels of pain medications. For mild pain, children should take ibuprofen. If the pain worsens or is not relieved by ibuprofen, your child’s doctor may prescribe a pain medication that contains a narcotic.

Sometimes your child’s pain may be unresponsive to home therapy. During those times, call their doctor to see if you should go to the emergency room.

In very severe painful crises, your child may need to be admitted to the hospital for IV (intravenous) therapy. Sometimes your child can be taught to give their own pain medication by pressing a button on the IV. This is called patient-controlled analgesia, or PCA. These treatments usually make home therapy for your child effective again.

Control temperature

Children with sickle cell disease are more likely to have a pain episode when it’s hot (over 80 degrees) or cold (less than 45 degrees) outside. Sudden changes in weather can cause a pain episode. We recommend:

• Dress your child warmly when the weather is cool or if they’re going to be in an air-conditioned room for a long time
• Don’t let your child swim in cold water even if the weather is warm
• Dry your child off quickly after a swim and wrap them in a towel
• Make sure your child is always well hydrated, especially when the weather is warm

Know when to call for help

Call your child’s health care provider and seek immediate care in these situations:

• Fever of 101 degrees or higher
• Severe headache or dizziness
• No movement in face, hands, arms or legs
• Slurred speech or drooling
• Rapid breathing or coughing with chest pain
• Severe pain or swelling in the belly
• Prolonged erection (greater than 1 hour)
• Very pale skin or palms
• Swollen hands or feet

Call your child’s health care provider for advice if any of the following occur:

• Vomiting
• Diarrhea
• Jaundice (skin or eyes look yellow)
• Extreme fatigue
• Pain
• Limps without pain when walking
• Persistent cough
• Refuses to take penicillin
• Has no appetite

Plan for emergencies

It’s important to have a plan for doctor or emergency room visits.

• Ask your child’s doctor and hematologist which emergency department you should use.
• Make sure anyone who regularly cares for your child understands their disease and knows when to seek help for your child.