Child with Chronis Disease or Illness
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Child with Chronis Disease or Illness
| Mon, 07-16-2007 - 2:59pm |
Does anyone who visits this board deal with a teen with a chronic illness? Our daughter was diagnosed with Cystic Fibrosis at the age of 15 years (3 years ago) and it's been a challenge to get her to take her medications, treatments, etc. that will only improve and prolong her life.
How do other families handle the need to have their teens on medication, treatment, etc.? Is the fact that she was diagnosed so late the reason why it's so hard to have her understand the importance of it? Any help would be appreciated.

My heart goes out to your DD and your family. I don't have any advice to offer but I do understand to some extent how frustrating it is to see your child dealing with a chronic disease and not take care of herself. My DD is 17 and she has had various health problems since the age of 4. One health problem after the next, some related, others not but she has always been difficult and stubborn when it came to taking medication. So much so that at the age of 7, after a surgery and a week long stay at the hospital, the only thing keeping her from coming home was to take one dose of liquid tylenol and she refused for over 4 hours! DH and I and the dr were pulling our hair out!! At the age of 12 she was diagnosed with chronic gastritis and for 5 years we have struggled with her to take care of herself. I find that my DD goes through stages. She does well for about 3 months but then gets tired of always having to watch what she eats and taking her meds so she rebels by stopping her meds and eating whatever she wants only to make herself sick again for several weeks while her body once again adjusts to the meds and proper diet. Its a vicious cycle and one that angers me because it's not necessary. Right now my DD is staying at a university dorm for a summer program and I am a nervous wreck worrying about whether she is taking her meds and taking care of herself but I have done all I can to prepare her for this trip and I guess that's all I can do. I'm sorry I wasn't more help but just know that you are not alone.
So sorry to hear your dd was diagnosed w/CF.
My ds20 thyroid went crazy when he was 14. He was on a daily pill for hyperthyroidism. Now, he has to have a pill every day for hypo thyroidism. Those 1st couple of years it was hard. He HATED taking that pill. I mean, it was just a PILL for gosh sakes! I really stayed on top of him during the hyper-part because it could be very dangerous health-wise if he didn't take it. By the time he got to the hypo- part, he had gotten used to a pill a day, but by then, he was moving out on his own. He had trouble remembering it, but soon learned just how crappy he felt when he forgot, so now I think he does pretty well.
I would imagine that your dd is just soooo very frustrated and angry and everything else that she is "different"...being "different" appears to be a fate worse than death for a teen. My guess is intellectually, she knows she has to take her meds and why, but part of her is probably still denying that she has to take it. Kinda like if she doesn't take the meds, then she's not sick. I know, it makes no sense, and I'm strictly guessing here, but that would be my arm-chair psychological guess. :) (That and a buck might buy you a cup of coffee!!)
I really don't know what to tell you other than to just stay on top of the meds and treatments for now. Hopefully as she enters young adulthood (19 or up) she will begin to take responsibility for her health.
{{{hugs to you both}}}
This must be so frustrating to deal with! I don't have any great words of wisdom but here are a couple of thoughts. Does she have a good rapport with any of the doctor's staff that might be able to talk to her, or are there any older girls with CF who could share their experience? You'd have to do it very carefully so she didn't think you were ganging up on her but sometimes hearing from someone other than a parent can make a huge difference.
My DS has asthma (not really comparable, I realize) but he is VERY compliant now that he trusts our new doctor and has seen that staying on top of all his meds makes a difference in his physical performance in sports. His issue now is wanting a quick fix for everything and wanting to take stronger drugs because some website suggested it! It sounds like the connection with daily feeling well isn't quite as obvious for your DD but if her noncompliance keeps her from participating with friends, I'm guessing at some point everything will click. Are her friends supportive - any way they can be enlisted in a gentle way?
I've tried to send the message to my teens that life has bumps, that everyone has "stuff" they have to deal with, and that there is always someone that has it worse. Not sure how successful I've been . . . Good luck.
Its frusterating for a child to be different than their peers especially when it comes to health. They don't want to be limited because of their illness. Its frusterating for the parent to watch their children be limited. My son, Everett, was diagnosed with a heart murmur when he was in the third grade. He has had 2 ablation surgeries and this fall he will have open heart surgery. Its terrifying and its even harder for my husband because he is a doctor so he knows all the ground rules. Good luck with your daughter's CF, that is a cruel disease. Everyone else good luck too.
Kate
I can't imagine the fear and worry that comes from having your child go through open heart surgery.
I wish the very best for you and your family. And hope that you'll stick around. The ladies (and guys) here can be a tremendous help during troubling times.
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