When most people think about sickle cell disease in children, intense pain comes to mind. But for kids living with the condition, it’s much more. School, play, checkups, prevention, and new treatments all matter.
Our pediatric hematology/oncology experts share are seven things parents should know about helping children with this disease stay healthy and thrive.
1. Symptoms can change daily.
Understanding sickle cell symptoms in children starts with knowing that the condition looks different for every child. Symptoms can also change from day to day. Your child may feel fine one day and struggle the next.
While pain crises are common, they are not the only concern. Watch for changes in how your child feels, and follow the care plan provided by your team.
2. Routine care matters even when your child feels well.
Preventative visits allow your care team to:
Check overall health and monitor for potential complications.
Recommend age-appropriate health screenings.
Discuss medicines, school adjustments, and daily activities.
Think of sickle cell care as more than responding when something goes wrong. Preventive care can help children stay healthier in the first place.
3. Know which symptoms need immediate attention.
For a child with sickle cell disease, certain symptoms may require urgent medical attention. Fever in sickle cell disease is especially important because sickle cell disease can make it harder for the body to fight certain serious infections.
Seek emergency care if your child develops a fever of 101°F or greater. Severe or sudden pain may also be a sign of a pain crisis and should be addressed based on the plan provided by your child's care team.
Parents should also know the signs of splenic sequestration, a serious complication that happens when blood becomes trapped in the spleen. Your child's hematology team can teach you what to watch for and when to seek immediate care.
If you're ever unsure about your child's symptoms, contact their care team for guidance.
At Connecticut Children's, our sickle cell team involves social work, psychologists, neuropsychologists, Child Life specialists, nursing and nurse practitioners all working together with patients and families to navigate life with sickle cell disease.
Donna Buruchov, MD and Kate Stevens, APRN, Sickle Cell Clinical Experts,
Connecticut Children's
4. Hydration matters every day.
Understanding the link between hydration and sickle cell disease is essential for daily care. Not drinking enough fluids causes red blood cells to sickle more easily, which raises the risk of a pain crisis. Help your child stay hydrated with these daily habits:
Encourage drinking water throughout the day, not just when feeling thirsty.
Provide extra fluids in hot weather, during sports, or when your child is sick.
Send a reusable water bottle to school, practice, and daily outings.
Ask your child's care team how much fluid is right for your child's daily goals.
5. School, sports and activities are still possible.
Having a chronic condition does not mean sitting out from active events. Most children can participate in school, sports, and activities with basic precautions:
Practice good hydration by encouraging extra water intake and frequent rest breaks.
Avoid extreme heat or cold temperatures.
Inform teachers, school nurses, coaches, and caregivers about your child's action plan.
Talk with your care team to determine which activities are best and whether any adjustments are needed.
6. Treatment options continue to advance.
There are more ways to manage sickle cell disease today than there were in the past. Depending on a child's individual needs, treatment may include medications to help prevent complications, blood transfusions or other specialized therapies.
And treatment continues to evolve at Connecticut Children’s. Patients and their families will meet extensively with their healthcare team in discussing what treatments are right for them.
Not every treatment is right for every child. Your pediatric hematologist can help your family understand the available options and what may be appropriate based on your child's health and type of sickle cell disease.
7. You have team support.
Living with a long-term condition involves managing school, sports, emotional health, insurance, and growing independence. You do not have to handle this journey alone.
That's why specialized pediatric sickle cell care is a team effort.
At Connecticut Children's, our pediatric hematology/oncology team partners with you through every stage of childhood and the teen years.
Our sickle cell team involves social work, psychologists, neuropsychologists, Child Life specialists, nursing and nurse practitioners all working together with patients and families to navigate life with sickle cell disease.
Together, we help your child navigate challenges and keep doing what matters to them.
