Teenage daughter with CF.........Help!!!! - Cystic Fibrosis Message Board

Proud mom · 05-31-2002, 06:39 PM

I'm hoping someone can give me some advice on how to handle a teen with CF. She is almost 13, diagnosed at age 2. We have done physio, enzymes, special diet consistently......(every single day, without missing), since diagnosis. Recently, we have insisted she use PEp mask, once a day instead of percussion therapy. Although she was introduced to PEP over 3 yrs. ago, and has used intermittently, she is fighting it all the way. She also does not take an active roll in maintaining her health. Forgets pills without reminders, has very poor appetite, stalls physio, etc..
In all other aspects of life, she does well, Is an excellent student, a wonderful dancer, and has friends.
Somehow, I need to find ways to get her on board...to fight this disease. Her weight is slowly declining along with her lung function. Please advise!

DownhereinGeorgia · 06-05-2002, 12:46 AM

My name is Ron and I was diagnosed with CF when I was 3 days old. You need to let her know that what she has is a life long battle that won't go away. Tell her that what she does now will affect how she feels in the future. I know from personal experience that the teenage years can be extremely hard and frustrating for someone with CF. Normal kids don't have to go through what we do (the daily routine of treatments, friends and family with CF passing away, being in the hospital on a regular basis)and though she may want to be more like her friends, you have to stress to her to put her health first. She has to learn to be more active in maintaining her health. Tell her that as she gets older things will get harder, so it's best to get into a good habit of taking care of herself now. You should definitely countinue to encourage exercise. Exercise should be one of the top priorities for someone with CF in my opinion. My sister had CF. She danced too from the time she was 4 until she was 15. When she was in her early 20's her health worsened. The one thing that she stressed to me at that time was to "never stop exercising" She passed away in 1993, she was 23. I was 16 at the time and I took what she said to heart. I'm 25 now and my health comes before everything else. I'm about 6'tall and keep my weight between 173-177lbs. I workout really hard 4-5 times a week and try not to miss days. I haven't been in the hospital in 7 years and (God willing) I hope I won't ever have to go back in. I still have my bad days, and times that I get really sick. But I know that if I didn't exercise, eat right, and do my treatments, it would be much, much worse. So I keep what my sister said in mind and keep pushing myself. I hope my reply helps.

Proud mom · 06-05-2002, 06:13 PM

Dear DownhereinGeorgia.....

Thanks so much for sharing your experiences. I will keep encouraging my daughter to put her health first.
Sometimes, it is so difficult to get through to her, because she is at the age where she feels like I'm just being a nag. I've suggested that she try out some of the CF chat rooms so that she could talk to other kids in the same situation. Maybe then she would feel like someone really understood what she was going through. Unfortunately, she doesn't want any part of it at this time. We have also given her an incentive to gain weight. For every 5 lbs. she gains, I buy her a new outfit. (Gaining weight is a real chore). Can you share with me any hints your parents may have used to help you, in terms of independant care? Thanks again!

sudupus · 03-01-2005, 12:19 PM

Dear DownhereinGeorgia,
I was doing some research on the web for a paper I am doing in college and I came across your story. I too, am the mother of a daughter with CF. My daughter, Emily is 18. When she was around 13, she went through many of the same things that you are going through with your daughter; not doing her treatments the right way,not taking her meds, and NOT wanting to talk about her CF in any way. I have to say, keep being a nag because the health of you child is at stake. At her age, she really needs to be taking care of herself because of how fast her lungs are developing and changing. She needs to realize, just as Ron told you back in June of 2002, this is a life long battle. The better she is at working to take care of herself, the longer she lives. Is she on the The Vest Airway Clearance System? I ask because Emily was put on the Vest a couple of years ago and it is working out great for her. I know that she IS doing her treatments because I can hear her doing them.
DO NOT give up, not that you are going to. I am on my daughter all the time about doing her treatments, taking ALL of her meds, eating right, and getting excerise. She was in the hospital for 10 days last June for a "tune-up". She hated being there and says that she does not want to go back. Since then, she HAS been taking better care of herself, Thank God, but there are times when I still have to remind her.
As far as any weight gain ideas go, all I can say is talk to the nutritionist at the clinic you go to. My daughter does not have that problem, in fact, at times, she has been overweight.
Good luck and God Bless.

AFredette · 03-01-2005, 05:29 PM

I am a mother of a 16 month old girl with CF who was diagnosed at two months. I am having a hard time getting her to eat her meals. She is easily distracted and loses interest.Thankfully she loves her Pediasure! I find it difficult to let myself relax about the fact that she's probably going through a stage, and that she's getting enough nutrition from the Pediasure. Any tips on feeding a finicky eater?