MY Daughter was Diagnoised at 17

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berrysgirl

New member
Hi IM Debra and my Daughter was diagnoised 3 weeks ago at 17 she is devastated. She does not want to talk about it she thinks the treaments are crazy. Please give me advice what can I do to help her? She has 2 rare mutations
<img src="i/expressions/face-icon-small-sad.gif" border="0">[E=Text]tipppietoe@aol.com
 
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supermanfan

New member
I'm sorry to hear that. I'm sure it is very hard to be diagnosed with a genetic disease, with no cure, at that age. I think the kids that are diagnosed at birth, deal with it differently because it has simply always been a part of them, and they don't know anything else. I was diagnosed at age 7, and I remember being upset at my parents for putting me in the hospital when I felt ok... I complained that I wasn't sick, and they kept trying to tell me I was. Ovbiously as I became older, and educated about my diseasse, my treatments just became part of my day to day routine.

Age 17 is a time of becoming a young adult, to get ready to go out on your own. I can only imagine what it must be like to be diagnosed at that age... but you can learn a lot from people here on this site, and also get support. Maybe one day you can have your daughter come here for support and information as well.

Best wishes <img src="i/expressions/rose.gif" border="0">
 
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cdale613

New member
Hi Debra,

Please make sure that your daugher understands that her diagnosis is not a death sentence, and is necessary to keep her as health as possible. Now that she is diagnosed, she can receive the specialty care and treatments that will enable her to achieve all of her goals and dreams. There are many CF specific treatments to help her, and hopefully, more on the way. The treatments she will be prescribed are managable, and will interefere with her daily life far less than a serious sickness caused by ignoring treatment.

Obviously, since she has lived to 17 without any real treatment, she is a mild case. She may have had episodes of feeling lousy that went undertreated or mis-diagnosed - now that she has been correctly diagnosed, she can be treated correctly and should feel a lot better. Most of her treatments will focus on prevention and minimization of inflamation and infection - she will have a lot of days where she will think to herself "I feel fine, why do I have to spend all this time taking my meds, etc." Please stress the importance of maintaining lung health - once serious deterioration occurs, there is only so much treatments can do to bring it back.

Please do not feel that her diagnosis puts limits on her. Encourage her to go to college, work, play, exercise, and do virtually everything she ever wanted to do before her dx. Of course, if some of these desires included smoking, drinking excessively, and other generally unhealthy behaviors, please make sure she understands that because of her CF, these activities could be extremely harmful - moreso for her than others. She will probably have a lot of trouble adapting to life with cf - just remember - she doesn't have to like it, or even be accepting of it... however, she does have to take care of herself and comply with her treatments... not doing so will hurt her in the long run. And remember... we're all in it for the long run.

Chris

25 w/cf
 
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EmilysMom

New member
Hi Debra,
17 is a tough age to be diagnosed. Teenage years are tough enough without throwing CF into the mix! My daughter can be helpful...have Debra either e-mail her (Emily65roses@yahoo.com) or IM her on AIM Emily65roses.
It helps to have other young people to talk to.
For you....this is a good place to talk to other parents, ask questions, get answers, or just vent. Welcome !
 
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anonymous

New member
Hi Debra,
I'm sorry to hear about your daughter's diagnosis. I kind of understand what your daughter is going through; I was diagnosed 8 months ago (march of this year) at age 20 and everything just seemed like a blur. I didn't want to talk about it either and didn't want to tell friends or know how to tell them or anything. Looking back I think I was depressed for a couple months because it was just SO overwhelming and unexpected.
I still don't talk to my parents much about CF, mainly because my dad is still in denial ("those tests don't mean anything... they're just numbers...") and I don't really want to deal with that. Also, I just didn't want to talk to my mom about it because I know she feels guilty for me having CF and it ends up being kind of smothering. I guess I'm just starting to rely more on my friends than parents for that stuff... but I talk with them about it occasionally. Once I really started opening up to my boyfriend and another close friend of mine at school it helped a lot. I think I just got so angry/upset about CF that i HAD to talk about it was really helpful to do so.
Treatments <i>are</i> crazy. You go from a normal routine to having to wake up way earlier to do tons of treatments, and when you want to go to bed because you're exhausted you have to take the time to do treatments first... it sucks adjusting to!
I've learned to accept my CF a lot better than I had when I was first diagnosed. Treatments are more of a habit now & I'm pretty much used to them (they still are annoying and somewhat of an inconvenience at times). Basically all that to say that it takes time to deal with a new diagnosis at such a late and crucial age. If you or your daughter have any questions or would like to email or chat, feel free to contact me: Debra_Castell@baylor.edu; AIM: BaylorCrew07

Debra
20 w/cf
 
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Emily65Roses

New member
My mom is smart. Before I even got to her reply I was thinking "Oh I should post my email and tell her to have her daughter contact me." Hah and there it is. So yeah, what my mom said. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
Just wondering what are your daughter's mutations. Did they tell you since the mutations are rare she has a milder case of CF? Thanks, Joan
 
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EmilysMom

New member
Emily's mutations are DeltaF508 from me (the most common one) and from Dad it's 1898+1G>A (I think). I have heard over the years that the severity of the CF can depend on the mutations but there are so many combinations, I have troubble seeing how that can be unless you are carrying double Delta F508. But be sure to ask her doctors
 
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berrysgirl

New member
Thank you so much TINA has 3 meds for acid on her stomach and she doesnt understand why she should take them when her stomach doesnt hurt. Its so new to me its hard to explain. She was in the hospital about four years ago with pancreatitus The Doctors said it was caused by Depakote that she takes for epilepsy. I think now it may have been this but who knows. Thank you Debra mom of Tina
 
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berrysgirl

New member
Thank you I am trying to get that into her head but she is so stuborn I hope it will sink in soon. I am doing my best it is hard because she is not a little kid anymore. Thank you for the Great advice
Debra mom of Tina
 
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berrysgirl

New member
Thank you very much Tina is in denial so I am trying to give her some time before I tell her about this but as soon as she starts to come around I will let her know Thank you so much Debra mom of Tina
 
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berrysgirl

New member
Thank you so much Debra I think it would be great for tina to talk to you but I have to give her a little time to accept this Thank you all the advice is great Debra mom of Tina
 
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berrysgirl

New member
I will tell her to contact you but I have to give her a little time everone on her has given me so much hope for her future Thanks Debra mom of Tina<img src="i/expressions/angel_ani.gif" border="0">
 
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berrysgirl

New member
I dont have them right now my Xhusband does as soon as he gives them back I will let you know. They said they dont know as much because they are rare mutations. I feel like I am not getting all the answers I deserve. Thank you Debra mom of Tina
 
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berrysgirl

New member
I will get them and post them he said they are very rare sorry I dont have the paper right now my EX husband does but as soon as I do I will post them Thanks for your Support Debra mom of Tina
 
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JazzysMom

New member
Basically the easiesst way to explain the antacid needs as well as the other meds since she went so long without a dx is this. Just because her body was able to do "OK" for so long does not mean its the best thing for her body. She might not feel "pain" in her stomach & ??? the need, but the idea is not to get to that point. I have found thru denial, trial & error, & self doctoring that just because I can/cant doesnt mean I should/shouldnt. Its very hard to worry about the long term affects when you are young. If I had some forsight, I would have been much more pro active in my care instead of so negligent. I was fortunate to have fairly minimal hospitalizations etc over the years. I was able to have a great pregnancy & give birth to a healthy girl, but I have paid for the neglect over the years. Would it have stopped the progression...No. Could it have slowed it down.....probably. Wisdom is learned. Experience sometimes is the best teacher. Unfortunately with CF we cant really play with the time required to learn from experience. To be diagnosed as a baby is a blessing in disguise because you learn the routine & dont know another way of life. To be given a dx later especially as a teen is very difficult. She doesnt want to be "different". She has much control over how "different" she is versus someone in a wheelchair or with CP or other illnesses that are "apparent" from observation. Keep up the good work on finding the balance of pushing the importance of her care without being too pushy! Good Luck!
 
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berrysgirl

New member
Thank you so much Melissa you just dont know how much it means to me that all of you are here. Thank you Debra Tinas mom
 
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