Hi, everyone! I'm new to this website and hoping for some advice. My stepdaughter is 13. She was diagnosed as an infant and hasn't been hospitalized for about 10 years. She is extremely healthy....does not take any enzymes, in fact, is on the chubby side. She's had more respiratory issues like sinus infections, etc. Her physicians want her to do gent/albuterol twice a day, on one month and off one month. She is also supposed to do some type of therapy once a day like vest or flutter.
My problem is that Elaina and her mom (whom she lives with) have never been around a really sick CF kid. Elaina does not do her therapy or treatments regularly and her mom does not try to get her to do them consistently. Elaina says her mom does not remind her. Her mom says she does remind her sometimes but basically thinks she's old enough to remember on her own. This would be true if she'd had consistent treatment all her life. They don't take it seriously because she's never been really ill. They have no idea what it's like to have to do treatments/therapies multiple times every day just to keep living. Elaina's mom never hesitates to tell people that her child has a "terminal illness" though.
Elaina does not go to the CF clinic unless my husband and I take her. Her mom put off her last follow up which should have been around July. Elaina's mom now says she doesn't like the people at the clinic and will not take her. When we take her, the clinic staff wants to talk with her mom because she lives with her full time. Her father and I have tried to tell Elaina (as has the clinic staff) that she needs to do these things to stay healthy even though she doesn't feel sick.
Elaina's even missed a bunch of school because she hasn't felt well. Her mom lets her stay home at the drop of a hat because she "has CF" but won't take her to appointments. Her grades are slipping as well.
Does anyone have any suggestions on how I can get this teen to value her health and do what she needs to do?
Thanks,
Renee
My problem is that Elaina and her mom (whom she lives with) have never been around a really sick CF kid. Elaina does not do her therapy or treatments regularly and her mom does not try to get her to do them consistently. Elaina says her mom does not remind her. Her mom says she does remind her sometimes but basically thinks she's old enough to remember on her own. This would be true if she'd had consistent treatment all her life. They don't take it seriously because she's never been really ill. They have no idea what it's like to have to do treatments/therapies multiple times every day just to keep living. Elaina's mom never hesitates to tell people that her child has a "terminal illness" though.
Elaina does not go to the CF clinic unless my husband and I take her. Her mom put off her last follow up which should have been around July. Elaina's mom now says she doesn't like the people at the clinic and will not take her. When we take her, the clinic staff wants to talk with her mom because she lives with her full time. Her father and I have tried to tell Elaina (as has the clinic staff) that she needs to do these things to stay healthy even though she doesn't feel sick.
Elaina's even missed a bunch of school because she hasn't felt well. Her mom lets her stay home at the drop of a hat because she "has CF" but won't take her to appointments. Her grades are slipping as well.
Does anyone have any suggestions on how I can get this teen to value her health and do what she needs to do?
Thanks,
Renee