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Cystic Fibrosis

Mild case for 18 year old

08/10/2007

Question:

My 18 year old daughter was diagnosed with a mild case of CF when she was 15 years old. Needless to say, this has been a shock to her. She is reluctant to do the treatments as she indicates that she doesn`t "feel sick". Any words of advice regarding how to instill in her the importance of the treatments? She will head off to college in the fall and we`re fearful that all treatments will fall by the wayside.

Answer:

This is a very difficult problem, even for parents of those who feel ill. It is hard to convince well, already "invincible", teens that they need to be future thinking. Try to emphasize that the fact that she feels well is a wonderful thing, but that the only way that she can continue to feel that way indefinitely is to do therapies now. Her ability to do the work she will be training to do in college, to have a family, and to see her children and grandchildren grow older will be to stay healthy, which depends on her care over the next years. Damage from CF is slow and cumulative, and once done, is not reversible. People often don't feel ill until they've lost 30-50% of their lung function, which is often too late to really slow the disease process.

I would try to identify, with her doctors, which treatments are most vital - giving a young person an overwhelming number of chores is probably  most likely to assure that none of them will be done. Negotiate with her and her docs which are critical, and try to start there. Another barrier is likely to be her worries about acceptance from others at college. She won't want people there to see her as different or ill. But, those that try to hide their needs are most likely to not do their care. Making sure that she at least acknowledges her CF and care needs to her roommates will help with her comfort doing those care chores.

Try not to become too adversarial. She won't be perfect (and may even do none of her therapies), but fighting will lessen your influence. Make sure she establishes an independent relationship with her CF docs - seeing them alone during clinic visits, calling them herself for refills or care needs, and that she is at least knowledgeable of all her meds and treatments. Talk with her about her college schedule, and see if there are ways that you or her docs can help her see ways to do the critical treatments without negatively affecting her college social life and relationships. Keep talking with her in a non-critical way - try to keep the communication lines wide open and just keep working at it. Her doctors and nurses at the CF center will certainly have been through this before, so make sure that you continue to work with them.

Good luck!!

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Response by:

John S Heintz, MD John S Heintz, MD
Former Clinical Assistant Professor of Pediatrics
College of Medicine
The Ohio State University