Most parents find out their child has sickle cell disease when they get their newborn screening results. If you’re one of those parents, you may have as many questions as you do emotions. You want to know how to help your child so they won’t experience pain. And how to help them have the future you imagined for them.
UVA Health Children’s Comprehensive Sickle Cell Disease program shares your goals. And we want your child to enjoy a bright and long future with a loving family. Our specialists have decades of experience working with children with sickle cell.
Treating Sickle Cell Disease at UVA Health Children’s
We start seeing most of our patients shortly after birth. The goal is to begin treatment before your child has any symptoms. We also want to prepare your family for the road ahead.
At our first appointment, we’ll walk you through some important steps in caring for your child. This includes:
- Talking about a vaccination schedule
- Developing an emergency plan
- Getting to know you and your family
- Working with a social worker to find community resources
- Talking about medication to prevent infections
- Discussing common sickle cell complications
We’ll also discuss what type of sickle cell disease your child has. And explain what that means for your child and your family.
Medications for Sickle Cell Disease
Many parents are surprised that we start children with sickle cell disease on penicillin. But taking this antibiotic before infections start is important for your child’s health.
Another medication we’ll start while your child is still an infant is hydroxyurea. This medication should reduce the number of pain crises your child has. It may also lower the risk of stroke.
We’ll talk with you about medication to manage your child’s pain. Over-the-counter pain medications are helpful. We’ll also prescribe a stronger pain reliever and talk about when to use it. And, we'll talk about medications your family is comfortable with.
Follow-Up Care
At follow-up visits, we’ll continue to meet with your child and the family. During our visits, we can talk through any fears, concerns, or victories you’ve recently had. We’ll also do lab work to make sure your child's treatment plan is working.
As your child ages, we’ll add more tests. These help prevent common sickle cell disease complications.
Transcranial Doppler Ultrasound
Between the ages of 2-16, we’ll begin doing regular ultrasound checks of your child’s brain. These checks allow us to see your child's blood flow, which can help us predict and prevent strokes.
Kidney Screenings
Starting at age 10, we’ll work with a kidney specialist (nephrologist) to check your child’s kidneys. This includes monitoring their urine for a protein that lets us know their kidney health is in danger. It also may include imaging to see if there are any issues affecting their kidneys.
Eye Checks
Starting at the age of 10, your child should get regular eye health check-ups. The main reason for these checks is to look for retinopathy. Retinopathy affects the eye’s blood flow and can cause blindness.
Lung Function Screenings
Many children with sickle cell disease also develop lung complications, like asthma. Lung issues can lead to lung infections in kids with SCD. We’ll work with our breathing doctors (pulmonologists) to make sure your child’s asthma is well-managed.
Transitioning Care in Adulthood
As your child grows up, we’ll start to transition them to be in control of their own health. Because sickle cell disease is a lifelong condition, self-advocacy is crucial.
They’ll learn to manage their medications and schedule appointments. By the time they’re ready to be seen by our adult sickle cell disease team, they’ll feel confident managing their medical care.
Complete Care for Your Complete Family
If other family members want to be tested for sickle cell trait, we can help with genetic counseling. We also can help you work through your emotions at our Family Stress Clinic.
Resources
Parent’s Guide to Sickle Cell Disease: The Sickle Cell Society
School Guide for Children with Sickle Cell Disease