Living well with lupus

How do I help my child with lupus successfully transition to adulthood?

The transition from childhood to early adulthood is a challenging period for teenagers—and their parents! You play a vital role in preparing your child to manage their lupus and their life overall, To help your child understand the nature of lupus and how to navigate the health care system, you will need time, patience, and assistance.

Typically, by middle school age your child will be capable of making rational decisions and judgments. This gives you the opportunity to prepare for the impending changes while still having a safety net in place as your child matures.

The Fall 2012 Lupus Now® cover story discusses the challenges of transition in much more detail. While the exact age at which you will begin this process depends somewhat on your child, these are a few of the strategies that experts recommend:

  • Help your child keep a lupus journal to track their health and treatment; for example, incidences of a flare, possible triggers of symptoms, medication side effects, etc.
  • Have your child organize their medications under your supervision and clearly explain what each prescription does and why it is important to be compliant with instructions.
  • Have your child begin to manage various aspects of their health care; for example, making doctor appointments, refilling prescriptions, scheduling lab tests, and so forth. By allowing your maturing child to have a role in the management of their disease they can gain a better sense of the responsibilities of self-care.
  • Ask the doctors to begin to speak to your child directly, rather than channeling information through you. As they get older, children need to feel that their opinion is important in the decision-making process. This helps them experience some degree of control over lupus, as well as realize the impact of their choices.
  • Develop a relationship with a pharmacist or local pharmacy. If your child goes away to college it is likely there will be a transfer of prescriptions during the semester and over summer time. Having a close relationship helps facilitate that process and ensure your child’s prescription are up to date and accounted for.
  • After age 18, teenagers with lupus usually switch to seeing an adult rheumatologist. It is especially important that they have regular medical care when they are away at college. Put your teenager in charge of researching the physicians that are available (which may depend on health insurance and location).

Remember: The more your child understands lupus and the health care system, the more successful they will be at living with a chronic illness in adulthood.

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