View Full Version : Frustrated with CF

07-12-2003, 06:09 AM
Hello Everyone!I have two children with cystic fibrosis. One is 5 and the other is 3. The 5 year old was just in the hospital due to mucus plugs and now is starting to have troubles with doing his meds, Iv meds, tests, everything. Infact its getting to the point he is fighting by kicking and hitting and refusing to do anything that is related to helping him with his CF. We knew he had cf 5 days after birth so hes been having lots of troubles since the beginning. This is like his 40th admission to the hospital and serveral surgerys. The youngest son is 3 and we knew before he was born that he had Cf. Hes only had like 10 admission though. And is doing really well taking his meds and treatments. My question is how can I help reassure my 5year old that everything is gonna be ok and make him stop fighting his meds. Hes on IV home antibotics currently and he is giving me so much troubles with the meds and everything. And some of the things he says when we have to draw his blood and things is horrible. Was wondering if anyone might have any ideas about how I can help him cope with things. I have tried conseling for him and that didn't seem to work just made him more upset. The doctors tell me that its prefectly normal for him to have all these feelings that he does and to just try and keep him calm and talk things thru. He believes that if I would just stop giving him his meds and stop taking him to the doctors that everything will go away. He also is very upset that his little brother almost takes the same meds as him but doesn't have to go to the hospital as much as him and this makes my 5 year old very very upset that hes getting all the horrible stuff he says. If you have any good ideas as to how to help me help him in anyway. Please drop me an email at [email protected] thanks Kinn

07-12-2003, 02:37 PM
It is not easy for anyone to deal with CF, let alone a 5 year old. The only thing I could think of is to make med time really special. Like when he has to do his IV med (mine take 1/2 hour) do a fun activity that he can only do during this time whether its a favorite video, snack, or family game. Try to do something so that when he has to be hooked up to the medicine he can say to himself (or you could say to him) "I know I have to do these stinky meds, but at least I get to play my favorite game with mom. I find when I am sick knowing something fun ahead of me gets me through. I was older when I got my first IV and I got really depressed. I remember knowing that I was going to a movie that afternoon or having an ice cream cone in the evening really let me look forward to something exciting all day amnd I would say to myself "If I can just get through all this I will be alright when I get to a movie.As for thinking all of it will go away. I used to think that too, but I was in my teens (I was diagnosed late) I used to say I lived for over 13 years without doing any treatments or meds so its not like I am going to suddenly die! Eventually I realized how ,uch better I felt when I did my treatments and I realized I liked my parents better when I did the treatments without being asked rather than having my poor parents nag me 12 times a day by saying "have you done your vest yet??" Sorry I wasn't a huge help, but maybe some of the parents to CFers will have more advice.

07-12-2003, 07:31 PM
Thanks we bought a second computer and we sometimes play games together while he takes his meds and treatments that seems to work sometimes and things just in general hes fussy about everything lately.

07-13-2003, 02:11 PM
I also have a five year old son with CF. Sean hasn't had nearly as many admissions as your son, but he also has expressed a lot of anger and frustration about CF recently. A few months ago he actually asked his daddy, "Why did God make me with CF." And I don't think a week goes by that he doesn't tell us that he "doesn't like CF." So far he does well with his enzymes, medicines, etc., but he will frequently fight us about his "vest" treatment. I think part of it is his age. Before this year, he basically accepted his treatments as a "normal" part of his day. However, five is a big year. They are no longer babies. Sean, himself, is an active, inquisitive little boy. I think he is able to think more for himself - he knows that his friends and sisters don't have CF and I think he thinks he feels angry and different. I actually posted on this board a month ago ("CF Pen Pal") asking if anyone is interested in having Sean "write" to them and have them write back. He now has two pen pals and I think it has helped alot. If you think it might help your son, I am sure Sean would like another "pal" - someone that he can talk to about CF, as well as normal five year old things.When it is time for Sean's treatments, we try to give him some power by giving him choices. We let him choose what activity he wants to do during his treatments. For his birthday last month, we actually bought him a Play Station 2 that is ONLY to be used during treatments. He loves that game and it helps him have something to which look forward. If that doesn't work, I then give him two more choices. I tell him that he can either do his treatments and not like them and be sad and grumpy or that he can do his treatments and find a way to like them and be happy. I tell him that it is his choice, but I certainly hope he chooses to be happy. I know that sounds a little extreeme, but I don't want his treatments to ever be an option. In everyone's life and especially his, there are always things that we don't want to do, but have to do. I do emphasize with him and let him know that I know it isn't easy doing treatments, and I tell him that is why we give him choices. Sean also occasionally has thrown big fits about his treatments. I treat it the same way that I do with any other fit. I either put him in a time-out or take away a privilege (ie. one of his toys, etc.). And then, on other days when he is doing his treatments nicely, I try to sit down with him and spend some time with him, or at least praise him and tell him he is doing a good job.Sean also has been getting angry about non-CF things (cleaning his room, etc.). I have been trying to figure out if it is repressed anger because of his CF or if it is just a "stage." I do know from talking to friends of children who don't have CF, that all their five-year-olds also are having "power" and "anger" issues, as well. With CF, Sean just has one more thing to be angry about. The only reason I mention this is because I think mostly it is an age thing. Our sons are becoming their own people and with that they are going to have their own thoughts and ideas. With that, they are going to question things. In your son's mind, it makes sense to him that maybe if he stops all this medicine business, maybe it will just all go away. I think you are doing the right thing. I would continue to talk him through his treatments and enforce to him that this is something he has to do. Try to give him reasonable choices so that he feels that he has some power. I wish you and your son lots of luck. I hope I have helped a little.Katrina - mother of Sean (5) w/cf, Carolyn (almost 4) w/o cf, and Allison (almost 2) w/o [email protected]

07-14-2003, 02:50 AM
Thank you you have gave some good advice .. I actaully did read your post and was considering writing you about the pen pal thing. It might do him some good to know others with Cf his age and things. He has a cousin that has CF thats 9 and of course he has his little brother that has CF also so they kinda all depend on one another alot. I see the three of them playing together and talking all the time. Of course he loves to do treatments and things when his cousin is staying with us and the three boys go to the treatment room together. And taking meds and dinner time and things like that is like SUPER cause hes got them taking before I even get his drink on the table for him <img src="i/expressions/face-icon-small-wink.gif" border="0">. I did notice this last hospital visit that a little girl was playing with him and told him that she had diabetes and she looked at him and said why are you here ? and he said cause I was coughing and coughing and my mom brought me here and something about this roses thing &lt; lol &gt; I had to laugh. But it makes me understand he still doesn't understand yet whats going on with him and I just gotta keep trying. I will try and sit sometime with Jeremy and have him write your son a letter if you want send me a note to my email and I will have Jeremy write your son back if you want. Thanks KinnMother of Jeremy &lt;age5&gt; with cf , and Johnny &lt;age3&gt; with cf.

07-15-2003, 10:47 AM
Any age is difficult when dealing with being "different" in the eyes of others. I dont have much advice except for a line from the movie "Forrest Gump". Right after Forrest got braces on his legs, he got his foot stuck while walking through town with his Mom. After a very attention getting effort to free his foot, Forrest's mom looked at everyone who was staring. She asked if no one ever saw a little boy with braces on his legs before. As Forrest & his Mom walked away, she said to Forrest ...Dont ever let people think they are better than you. If God had wanted everyone to be the same, he would have put braces on everyone's legs. I realize its not quite the same, but that line stands out in my mind. Who are others or sometimes ourselves to judge what is "normal" or right. I hope this is food for thought at least! <img src="i/expressions/face-icon-small-wink.gif" border="0">

07-15-2003, 12:02 PM
I absolutely LOVE that movie (Forrest Gump), but I do not remember that line! So very well said...I have had many difficulties in my life dealing with being "different" in having CF. I have actually just recently come to terms with that and have finally decided to share my story. Growing up, many people never even knew that I had CF and Diabetes. I was too shy to explain why I coughed all the time. I was afraid to take my medication in front of other people. Little things as this have affected me in a negative way.But now, things are different. I am learning to stand up for myself and let people know that, sure, I cough a lot...but I can still do things like everybody else. I have to take many "time outs" in my activities to check my sugar, take a pill, etc., but people get used to that. It has become a part of who I am.Please read my story...it is not quite done yet, but will be completed shortly. You will see some of the problems I have gone through in "fear" of being different. I think all kids need to learn to stand up and say, "I am different in some ways, but so what??!! I am proud of who I am. I will not let having CF affect me negatively."http://geocities.com/steph65roses Thank you and best of health,Stephanie