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A guide for parents and caregivers: Preparing your child for adult care.

There comes a time when your child with sickle cell disease (SCD) turns 18 years old. That usually means the SCD CareTeam changes from a team that cares for children to one that takes care of adults. You and your child’s responsibilities will change. This transition can be hard for everyone involved. And the transition takes time. Planning for it well ahead of time can help.

It's natural for children to gradually become more independent. The same should be true for children living with SCD. When your child is young, they rely on you to manage their SCD. You make and go to clinic visits. You give your child the right medication at the right time. And you order a medication refill before it runs out. You are the main advocate. As your child grows into teenage years, they will take a more active role in their care.

It's important for your child to start getting ready for the transition to adult care when they are young. Being ready helps make for a successful transition. Getting ready means you, your child and the SCD CareTeam are all actively involved as responsibilities gradually shift.

Here are some tips for transition:

  • Find an adult doctor who knows about SCD. Local SCD organizations can help find one.
  • Talk to the SCD CareTeam about things your child can confidently do and things they are worried about doing.
  • Encourage your child to join a support group for young people with SCD.

Before transition to adult care, review these things your child should know and keep track of:

  • Medical history
    • The type of SCD your child has
    • When they were in the hospital and why
    • The number of emergency room visits and why they had to go
    • Blood type
  • The names and doses of medications and what they are for
  • The phone number for the pharmacy they use
  • How to refill medications
  • How to help prevent a pain episode and other possible complications
  • What medication and dose works best for a pain crisis
  • When the next appointment is
  • Who they can call if they are overwhelmed, need help or have questions

Your CVS Specialty CareTeam is also here to help. Call your CareTeam for support and information on how to transition to adult care.

This information is not a substitute for medical advice or treatment. Talk to your doctor or health care provider about your medical condition and prior to starting any new treatment. CVS Specialty assumes no liability whatsoever for the information provided or for any diagnosis or treatment made as a result.