Parents of tweens or CF adults, input

[Rebjane]

My daughter is 10 and a half with CF. She is fairly mature for her age, since she has been dealing with CF since birth; she is a good kid, smart and handles CF with grace.

However, she is developing just a slight attitude. I noticed at her last CF appointment(we saw NOT her usual doc), my daughter seemed quite disinterested during the appointment. When the doctor was talking, my daughter was twirling around in the doc's chair, kind of like we are wasting her time? I was a little amused that time, just thinking it was a one time thing.

This week I brought her in to see her usual CF doc(he's been her doc since she was born). They have a good rapport, usually chit chat about school, other stuff. She was giving him attitude(just slightly). She seemed annoyed to get on the table for his assessment. Not really talking to him, when he asked what grade she was in, she just put up 4 fingers. He did say to her she was acting different. As we were leaving, I said I think we are hitting teenage years. Now, he did put her on an antibiotic (the one she hates). So she was annoyed. Her PFt's were slightly down.

I started to talk to her last night; that she was not being nice to the doctor; he is looking out for her best interest. Then I backed off cause I am sure she is annoyed having to be on medicine that she hates.

Advice?

I do plan on having a talk with her about respect before her next CF appointment(in June). She can be pissed about Cf and treatments and medicine but she has to treat her doctor with respect. She can disagree with him but in a respectful way.

Input?

 

[JENNYC]

I think your plan of action sounds great! She can be pissed about CF but she should always treat other the way she would want to be treated. Nip it in the bud mom! Too often I have heard parents letting their kids get away with being rude and chalking it up to CF....they are still kids that need guidance whether they have CF or not. My take on it is...that it is my job to be the mean parent when needed...not the friend to the poor spoiled little kid. I think that my kids actually love and respect me for that and others as well because my kids know what is expected of them and how to treat others. My son is just now hitting those years too and wowzers I can see it is going to be fun!! So I think you ROCK mom!! Love to see moms like you And wish me luck too!

 

[echolaura]

My daughter was diagnosed at five, is almost 20 now, and has always could care less about the whole thing. Since turning 18 she has refused tune ups, gotten lazy about TOBI and then Cayston when TOBI stopped working, and pretty much works on auto pilot as far as her health. She is blessed and lucky to be a g551d and is on Kaly now, but her improvements probably would have been more remarkable if she was choosing to stay "up" on her own healthcare. On the other hand, she doesn't go out of her way to make BAD choices, I know for a fact she would never smoke (anything) or do any kind of drugs, but she has acted out as most teenagers do. What I have read along the way, in my own angst over this, is that staying on top of her, as a parent, and hopefully not PUSHING her away, she will eventually take over in a positive way. Seems most young adults I have listened to in this forum have snapped out of their younger ways by the time they reach 21 or 22. Anyway, in a long and round about way, my daughter has always been like yours. Only at the appointments because she has to be. But keep going anyway. Good luck.

 

[baco623]

Rebjane - I have to tell you what your daughter is doing is completely normal for her age, especially for a preteen with CF. I am a 26 year old female with CF, CFRD and I had a double lung transplant when I was 24. I was completely like your daughter is acting at her age. I really didn't care about my health. Granted I was very healthy growing up especially for having CF but I just wanted to be normal, like every other kid in my class. My parents didn't handle it to well and needless to say we got into a lot of fights which was very counter productive to my physical health and emotional and psychological well being. I was never really allowed to talk about how I felt being a teenager with CF and I kept things bottled up inside which came back to bite me later. Either way my parents instilled in me the absolute need to respect my doctors and all the people trying to take care of me and its important that you relay that same message to your daughter. You have to do everything you can to keep her life as normal as possible.. INCLUDING DISCIPLINING HER!! She is no different than any other child and she needs to be treated the same. Does she have anyone to talk to her age or around her age who also has CF? I didn't have anyone to talk to with CF until I found someone when I was 18. I found once I was able to talk to someone who understood what I was going through there was less reason for me to have an attitude with the people around me. Also does she do any activities that help her get out her energy, anger and frustrations (sport, art, activity) I played softball for 10 years growing up and it was the best thing for me. I was able to get out so much frustration and I got a lot of really good physical exercise which will only help her CF. I would say as far as advice to you, try to be as patient as possible. Let her have her emotions and don't try to convince her out of them. You have to find the balance between letting her go through the ups and downs of CF and not allowing her to be disrespectful. If you ever want to talk more please feel free to private message me, or if you would like I can also e-mail or call you. Also please tell your daughter if she ever wants to talk to someone with CF I would be more than happy to talk to her so she can vent with me. Stay strong and always remember you have to take care of yourself as well, not just your daughter. Sending you lots of love and positive thoughts, xoxo

 

[welshwitch]

I was totally that way, too. I hated CF and did everything I could to avoid it. Doctors represented the disease and I hated going to appointments. I would rather die than do treatments. I would take the pills, but that was it. I was a lucky CF kid in that I avoided hospital stays but that was only luck. It became something later that was too scary to talk about , to think about. I became ashamed of it and hid it from all my friends. It wasn't until my mid twenties that I really started engaging in my health on my own terms.

I'd say what your daughter is going through is COMPLETELY normal. I don't know the best way to deal with it....my parents were really passive about the emotional side of CF. THey made me do everything I needed to do to stay healthy, but they were pretty clueless as to how to handle the emotional part. In retrospect if I had gotten some tools early on to handle it, that would have been great! I think the CF role model idea is fantastic. Perhaps you could set her up with a CF adult email buddy? Heck, I am sure many of us on this site would be glad to do so!

 

[zeeannie]

Totally agree that her behavior is normal. Other parents I know went thru the same kind of thing with their girls (without cf) at ten years old. I think it's the start of the annoying teen stuff. I know my daughter understood the ramifications of her disease and how being compliant (or not) would affect her in the long run. Nonetheless, she's a normal teenage girl in every other way. She's almost seventeen now and finally emerging from "The Fire Swamp" that is unpredictable teenage emotion, fraught with vicious ROUS's, unpredictable fire columns,and hidden quicksand.
(Pardon the weird Princess Bride reference, just watched it again yesterday. The Fire Swamp seems like the perfect metaphor for teenage girl emotions tho, dontcha think?)

 

[Rebjane]

Thank you for your input. My daughter puts up with alot from her CF so I don't want to overreact. She needs to be respectful to adults, however.

I was a terrible preteen. So far she is much better than I was, just want to keep it that way

I do think talking to a someone with CF would be a good idea.