I'm not a CF patient or parent, but I do know a lot about the disease; it was actually a book about a child with CF that started me on my path to medical school. The book was called "Alex: The Life of a Child" by Frank Deford, and it was written about 30 years ago. CF research has come a LONG way since then, and the outlook is getting brighter every day. Certainly within your daughter's lifetime there will be new gene therapy efforts underway, as well as new medications to help improve quality of life.
There are some people on this board who were diagnosed in their 20's. Imagine that! So, just like with any chronic illness, it varies tremendously among people. I hope your daughter does indeed have a "mild" case of it. Do you live near a major CF treatment center? If not, I would suggest you consult one, as it has been shown that people who undergo treatment at a major CF center have much better outcomes. The Cystic Fibrosis Foundation is a great resource to start with.
I actually just joined so that I could reply to your post.
I am 20 years old, and have Cystic Fibrosis, and also have Diabetes and Asthma (diagnosed at ages 14 and 6, respectively), which are complications. I was diagnosed at birth, but my case is also classified as "mild".
I lead a fairly normal life--I go to college and live at school, have a social life, have a boyfriend, etc. I also really enjoy dance, and it is a good form of exercise, so I can clear mucus.
Right now I'm on quite a few medications--but that is normal for any person with CF. These include inhalers, insulin, antibiotics, pancreatic enzymes, prilosec (to help with digestion), vitamins, and some nebulizers that help break down mucus. I also use a vest twice a day to help clear mucus, although my parents did chest PT until I was 16. Twice a year I receive IV antibiotics.
I think that my best advice would be to make sure that your daughter does all her treatments and medications faithfully, but otherwise to help her live as normal a life as possible. Try and treat your daughter in much the same way you would treat a child who wears glasses--follow your doctor's advice for what is best for your child, but make sure your daughter knows that she is just a little different--not "sick" or "weird". It's best if both you and she understand CF as much as you can, and that both of you are frank and clear when explaining it to others. The more comfortable you are explaining CF to others, I've found, the more comfortable you become with CF itself.
"Normalizing" regimen is also important. Make it part of a routine so that it's easier to remember (I like to take all my pills, including antibiotics and other nondigestive meds, at meal times, with my enzymes so I remember them). During nebulizers or chest PT, your daughter can do other things as well, such as watch TV, do homework, or do other things. That way she might not feel like she is missing out as much. For instance, if she decides to do her homework while on her nebulizer, she won't be missing more time than she would have anyway to play with friends.
It's important for CF patients to get exercise--but it doesn't necessarily mean they have to go on a treadmill every day. Have your daughter do something that she likes and is fun for her--sports, swimming, dance (my personal favorite), etc. Not only does that not single her out as "different," it is an exercise regimen she is more likely to stick with as she grows older.
As far as nutrition goes, there are also ways to make eating more fun and more fattening at the same time. For instance, drinking whole milk instead of skim or 1% already adds more fat and calories to a diet without significantly changing it. Adding peanut butter to favorite snacks also can really help with caloric intake. Eating can become very frustrating when you have CF, since you constantly have to eat more than is normal and very often it leads to diarrhea. The key is to make eating fun, rather than making it a duty. Find foods your daughter likes and then try to find ways to make them higher in fat and calories (adding nuts to yogurt, for instance).
I'm not sure if you have other children, but if you do, it is important in the midst of all of this not to forget them. I have one older sister without CF, and it was very hard on her growing up. Lots of times younger children don't understand the needs of a sibling with CF and grow resentful of the extra attention they receive. It's important to make sure they know they are loved just as much as your child with CF.
I'm sorry that I am so long winded, and I hope you weren't overwhelmed by this. Please email me if you want to discuss this more or if you have any questions. My email is OZb11kmf@aol.com. Good luck!
What a excellent source of information you posted here. I can tell, you have learned well about your disease. I can actually learn some great tips from you.
This is the thing I would like to ask you most...at what age did your parents fully explain your disease to you? Or did you ask questions...why am I taking medications, why am I always going to the doctor?
Kate, also, there are some more serious questions I have to ask you and will be emailing you for this.
Oh btw, I have consented to first time ever doing research on my twins. Come week after next, Sunday, they will enter the hospital and do a few tests. A bone scan will be done. A glucose tolerance, for diabetes. Also, a 24 hr urine test. This will be combined with their clinic appt. Atleast, my boys will benefit from knowing if they have diabetes (which runs strongly on my husbands side) a double handed stroke for them which is very sad to say the least. I will know for sure how much their pancreas is affected by this horrible disease.
From a parent to ALL CF'ers and parents...I have to hand it to you...a long hard road you've had, but, please keep struggling to keep going. I wish their was a cure that could be found not today, not tomorrow....BUT AT THIS "VERY MOMENT" AND THIS IS JUST NOT SOON ENOUGH!!.
Kathy, mom to 9 yr twins with CF.
If a cure is found, you would hear this twins mom "ACROSS AMERICA" YESSSSSSSSSSSSSSSS!!!!!!
Thank you so much for the time you spent responding to my post. You have giving me some wonderful advise. My daughter seems to be adjusting to our new schedule of enzymes, nebulizers and chest PT twice a day, but I know it is hard on her younger, 6-year-old sister.
God has given me two amazing daughters and I know we are going to learn how to have a wonderful life despite this diagnosis. It just has been quite a shock to deal with the emotions of the diagnosis, learning about CF and learing how to use a nebulizer and do chest PT!
Thank You again for you time responding.
I am a CF mom of a 15.5 year old son. In the past 2 years we have gone through many changes, and I am happy to say that he is doing better than ever.
What I'd like to share is that there are several natural supplements that can enhance your daughter's well being and supplement deficiencies that are known to exist in CF. These deficiencies are the catalyst for many of the secondary complications that occur in CF, such as the pulmonary, pancreatic, and liver fibrosing, and the affinity for bacterial colonization in the lungs. It is these secondary complications that rule the morbity factor among CFs.
I would like to mention that I am not promoting anything. I am not a salesperson of any kind. Simply a CF mom who has worked very hard to understand the underlying causes of the pathology of CF. I have written a research paper on a potential lung regiment for CF which replaces certain deficiencies in the lungs and systemically, that could greatly improve the general health of CF patients. The key seems to be "the earlier the better". Any time replacement of deficiencies can occur as soon as possible there is a much better chance of avoiding the secondary complications that arise from CF pathology.
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Post Edited By Moderator (~Jennifer~) : 9/17/2005 4:43:20 PM (GMT-6)