Any Pre-Teens/Teens Living with CF?

[JocFraz]

I am a kindergarten teacher and the extremely proud mommy of a little girl with CF. She is 3 and a half. She is doing very well. She had a rough start when she was born and she takes enzymes but so far (knock on wood) no lung issues. Are there any pre teens or teens out there living with CF who can give me an idea of what their daily life is like? I mean, Olivia is only little right now, but I try to look ahead to the future. I want her to have fun and be independent, but I can also see myself being a big nag. I don't want to be on her case every minute, chasing after her with the nebulizer. What do you find helps and what do you find bugs you? Thanks :0)

 

[anonymous]

It is difficult to find a position between being a nagging parent, and ensuring that your child does what is best for her health. I say this not as a parent of a CFer but as a spouse who has had struggles of this nature with my husband and MANY a conversation with his monther about what it was like growing up. It was drilled into my husband from the day of his diagnosis (at 18 months back in 1982), how important it is do do his chest physiotherapy and take oral antibiotics. TOBI didn't come out until he was in his later teens, but had it been avilable from day one it would have just been a habbit for him. For the most part his mom said he was pretty compliant with his treatment but she did have to get on his case around the 14+ age when kids, regardless if they have CF or not, want to do their own thing. He resented her on occasion, but ultimately he sees the greater purpose his mom was trying to show him, and now that he is older he can see that what she did really assisted him. We were 19 when we first met (6 years ago now) and he wasn't doing any treatments, not seeing any CF doctor regularly and didn't live at home anymore so his parents could encourage him to do so-but that was it. He and I fell hard for eachother, and it became very important to me for him to see a CF doctor at least twice a year if not more and for him to do ALL treatments they prescribed. I met a lot of resistance for the first year the I was really pushing for this but I wasn't about to back off. He and I came to a middle ground where I wouldn't "nag" him to do his treatments, but simply ask him if he had done them yet and give him a big congrats and thank you if he did, or ask him if there was something I could do that would allow him to have time to do his treatments. We came to a middle ground after a little over a year of struggles.

So now that my life story is over.... the main point I am trying to make is that if it is routine from day one you will most likely not have too many problems with treatments in the future. Although I have head from many people on this site (Emily, and I believe coll but I can't be sure) that those teen years can be a sturggle anyway. As she gets older you will be able to have adult discussions with her about talking to you when she feels like you are nagging, and you can explain to her the importance of the treatments.

Julie (wife to Mark 24 w/CF)

 

[anonymous]

Hi, My name is Crista and I have a 15 year old son with CF. His name is Matt, and just like you he is my heart and soul. I was reading your letter and I just started crying. It seems like it was just yesturday I was exactly were you are at now. Matt had a lot of digesting problems and still does in his younger years while his lungs were not a problem till recently. I remember chasing him around with the neublizer. strapping him down in the high chair just so he would take some of the treatment. He is with me right now reading this together and he would like to tell you for himself what you could expect she might feel like, act like. Wuw.......I have never written in one of these things before, but I thought I would start off with someone I could help. I try and live as normal as anyone else , but there are limits. I have three brothers and they all look up too me. I have had people (grown men) tell me that they look up to me too. I am currently in 9th grade. I play hockey and baseball. I believe nothing is impossible unless u think it is. I'll admit I am rebellious , but hey all teenagers are. No one has ever not wanted to be my friend because I have CF, I have loads of friends and I have a girlfriend. I have never been shy about telling people that I had CF. I have recently had a feeding tube placed, when they came to me with the idea to put it in I absolutly didn't want it.......but now since they put it in i like it it has help me gain weight I think its kinda cool. I have plans for the future and I keep my spirits high, I will be getting my permit in a couple months and I will start working. I am excited for what the future has in store for me.

 

[Liza]

Hi, I just wanted to say that I have two teen girls w/CF. One is a senior in HS, graduating in exactly one month from tomorrow. She turned 18 earlier this month and wasn't diagnosed until age 3, just one week before our second daughter was born. Our second daughter is 14, a freshman in HS and a freshman HS cheerleader. Both of my girls had mostly GI issues in the beginning. Anna, the oldest didn't have to do regular neb treatments until she was about 9yrs. old, Rachel 11 yrs. old. While Anna isn't very physically active, no sports or anything like that (mostly her preferrance, she started out in dance and gymnastics), Rachel loves her cheer classes and cheerleading and all things boys. Go figure, she's the typical teenage girl. Anna got her license right on time, well almost... she had to wait a few months because of drivers ed. She tries her best not to let CF get in her way, although she is not very open about it. Perhaps because we are military and have moved around quite a bit. She has told a limited number of close friends. We leave that up to her. She does however wear the CF awareness bracelet her nurse gave her. Rachel too is quiet about who she tells and wears a CF awareness bracelet too. Only one friend knew she was in the hospital earlier this month. That's the way she wanted it. Again, is it because we have moved so much and those close ties with people you grow up with aren't there I'm not sure, but probably. One does her treatments better than the other, the other takes her meds. more religiously than the one. Typical teens I think. We are just glad that neither have decided to just stop, as I've heard some simply have had enough and are tired of having CF and taking their meds and treatments. Don't get me wrong, we have to nag more often than we like. The true test will come next fall when Anna leaves for college. Maybe I should say stays for college. We're due to move again soon after graduation and she's decided to come back to go to college with many of her friends. There has been a rough year here and there but during those times we lived to get through the day and prayed. Anna had a tough time with weight during her early teen years but we managed to get through it. She refused to have a feeding tube and we let her decide. She also refused getting a port-a-cath until they couldn't get a picc line in (during one of those tough years two years ago), she didn't have a choice there and had one placed. After a second visit to the surgeon that placed it in the wrong place and he refused to move it she sought out a second opinion from her pediatrician. He gladly sent her to someone else that said "no problem", he was glad to move it, just and inch or so. She was a changed person, happy again, she could wear a bikini in the summer and look forward to Prom.

When they were little and needed to do a neb treatment, I have to say I was very lucky. They did it. PT, they sat for that too. As she grows it will become routine and there won't be too much nagging.

Liza
(mom of 2teen girls w/CF)