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Posted 4/25/2006 2:55 AM (GMT 0)
Hello to all and I hope everyone is well. I am the proud mother of 2 wonderful children, my almost 12 year old erin with cf and my son Barrett 16 months without. Trying for my third.lol. Erin was always a sick child and then we almost lost her 3 years ago. That is when we found out. Forgive if i don't know everything yet about cf we are all still learning. Erin just did a month in CHOP and we just went back today to clinic. She will not do her meds she told the docs that she did not care what they said to leave her be.. We don't know what to do anymore. I try so hard to teach her that she can't let the cf take control of her that she needs to take control of the cf. She is very much her own person and like me very strong willed and that is where her and i butt heads. Off this for 1 sec to the young lady that is afraid to tell her friends erin's friends the handful that she has stand by her,visit her when she is in and nag her to do her meds. Back to erin now all we want is for her to come to terms with her cf. I have said many times that I could never walk a day in her shoes that I won't ever say that I even for 1 second understand how she feels or what goes through her mind. I wish she had a friend with cf that she could talk too.  I wish I had a friend with cf so maybe for even a min could hear what it is like because she won't talk to us or a doc. well i guess that is all for now thanks to all that read this and good luck to everyone . Remember hold them close and love them forever tongue
Posted 4/25/2006 3:00 AM (GMT 0)
Many of us CFers go through stages where we don't take our meds, that we think we know better, etc. I've been there. For awhile I didn't take my enzymes, didn't do physio or my meds. Sometimes you just have to use tough love to get through to someone. Its either her health, or she will get worse and die. There's no two ways about it. She needs to understand how much doing her treatments, etc is important. I'm assuming that you go to a CF clinic. Have you thought about putting her into counseling? The CF team should have a counselor on hand for these types of things. Remember - she is the child and you are the parent.:)
Posted 4/25/2006 3:09 AM (GMT 0)
chaser, we have and nothing, you should have heard her today with all of them, her whole team was in there and that failed so just her and her doc that failed. we have tried everything under the sun. i sometimes think that she gets so scared that she tried to run from it. i remember when we came home the first time after we found out, i did'nt tell her yet that she could die and she looked it up, then came into my room at 2 am and said mom why did'nt you tell me that i was going to die i lost it we both did. she did great for the first 2 years and then this past year it has been real hard. oh and thank you for answering my post

Posted 4/25/2006 12:12 PM (GMT 0)
I know majority of us who were diagnosed at an early age were thankful that our parents told us all the ins and outs of CF, rather then looking it up on the internet or having an outside party tell us. Does she know that she may not necessarily be a casebook statistic? That many CFers live to be in their 30s, 40s, 50s and even 60s? It might help her to know that its not all dome and gloom, and that she shouldn't believe everything she reads on the internet. CFers can live normal (or at least somewhat normal lifes), somewhat healthy lives. I was diagnosed at 6 weeks of age, and I'm 24 now with very minimum lung involvement. It might help if you were to let her join a CF forum like you are on - then she could chat with CFers her age, and realize that she's not the only one going through this.

Here is a link to a really good forum site that has a childrens chat sections, as well as a teenage and young adults section:

http://forums.cysticfibrosis.com/index.cfm

The both of you should definitly check it out. I would imagine most of her "rebellion" is from the simple fact that this is all new and scary to her. All I can say for now is continue to stress just how important it is for her to do her treatments. She's worried about dieing young? - well she'll die young if she doesn't do treatments and take her meds. She needs to understand that. That being said - lets hope that its only a stage that she's going through like many of us do.

I hope this has helped.
Posted 4/25/2006 1:56 PM (GMT 0)
 Hi my name is Neely i'm 21 with C.F i was diag late to but i was only 5 so it wasn't so late. i know i was really healthy (for a CFer) at the age of 12 i stopped doing every thing to i had convinced myself it was all to hard and no one could have such a horrible time consuming tablet swalling neb sucking ilness i thought i was right the Dr didn't know it was my body i knew what would and wouldn't work i had many Dr's, Phycs, social workers and nurses intervien, in a sence it made things harder. they knew what they read not how i felt they thaught they did but only i did. Any ways Eventually i got sicker and had a long admission it didn't help either but i did finally meet people in my situation! and in worse situations sicker than i but with CF it kind of scared me to watch some one my age breathing with an oxygan tank and wheezin in there breath like a old dying man, I was so wrong and luckly snapped out of it really quickly, i know it is hard with cross infections for CFer's to "hang out" but it can do us alot of good to see there are more people like us and worse than us. If she wants a CF friend put her on the computer and reading about us (her peers) i would be more than happy to chat to her as a friend rather than a medical lecture it might make all the differance it might not but i know since i came on these sites and read about more people like me it made all the differance. to how i think about my illness and treatments. any questions there are alot of people here willing to help i also know a site full of personal stories and feelings of CF's all over the world all ages. if your intrested.

 

 

hope i can help in some way / or some one here can point you in the right direction / like we arn't difficalt enuff we make more problems for our self!! typical CF!!

 

 

Neely :)

 

Posted 4/25/2006 3:38 PM (GMT 0)

neely,

thank you so much for talking to me i would love to hook her up with you maybe even do u think you would talk to her over the phone. she relates well with people older then her because in a sence she is older. erin has seen and been through alot in her short life things that happened to her even before the cf, so she has grown up alot faster then most. thank you so much

jaime

Posted 4/25/2006 3:42 PM (GMT 0)

Hello i'm on line still so i got your reply, yeah i will talk to her no worries i would love to be able to help her out if you have msn could you get hold of me on [email protected] else i'll be in the healing well chat room for the next half hr.

Neely

Posted 4/25/2006 7:02 PM (GMT 0)
Hello,

 

        i must have missed you. I'm loggin off now it's getting late here I would be more than happy to talk to your daughter as a friend who can hopefully influence her in the rite direction, i left my e-mail in the last post so if you would like get hold of me thru that and if your daughter and you have any q's or just want to talk i'll be more than happy to reply and do what i can to help you out :)

 

Neely x x

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