8 year old daughter just diagnosed

Hey NewCFMom,

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.

Hi there--

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 [email protected].  Good luck!

Kate

Hi--

Well, having an older sister without CF certainly made me realize at a young age that the two of us were different. I don't remember a specific time when my parents "told" me about CF. I think that what my mother tried to do was tell me different things whenever I was old enough to understand them. But CF was treated as the special thing that I had and did things for--my dad has to wear glasses, so that's what he did, my sister had to go to a speech therapist and had asthma, so that's what she did, and I did things for CF. In short, I don't remember a time when I didn't know I had CF. But it was treated as such a normal thing--for instance, I kind of liked chest PT because it gave me extra attention, I took pills, but then again, my sister took vitamins so it seemed sensible to me that I just took a few more than her, and whenever I coughed up mucus, my mom would have me spit it into a kleenex, then ask my sister if she wanted to spit into the kleenex too. This did a few things--it gave my sister some of the attention that I got, it made me feel that it was not strange to look at my mucus in a kleenex, and the differences in the color of the mucus highlighted the fact that my mucus was different. As early as I can remember, I also remember my mom asking me if I had any questions for the doctor the day before a doctor's appointment, and writing them down, just like she wrote her own questions down.

My case is a little different than most, though--after I was born and initially diagnosed, I didn't have to go into the hospital until I was 14, when I was diagnosed with Diabetes. After that, I didn't get my first set of IV antibiotics until I was 16. So besides pills, PT, the diet, after I was 6, inhalers, and after I was 11, nebulizers, I wasn't all that different in terms of what I did. I always knew, though, that many other CFers were much sicker. I don't know what would have happened had I had frequent hospitalizations as a young person.

As far as the life expectancy, you always tend to "hear about" and "keep in touch" with other people with CF even if you don't actually know them. So when I first heard about someone dying with CF I was about 10 or 11. I took it pretty well, as I remember, because I think at the time I knew I was better off than most CF patients and it seemed kind of removed from me. It wasn't until my freshman year in high school, when a junior at the school died of it, that I started really thinking about that aspect.

Sorry I couldn't help more--I'll ask my parents about it.

Kate

Hi Teri

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 

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.

Please let me now how I can be of support to you.

Sincerely,

Patricia

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Post Edited By Moderator (~Jennifer~) : 9/17/2005 4:43:20 PM (GMT-6)

hi i have jus connected to the internet and reading your letter. i have a daughter who has chronic cf she was diognosed at 3 months old she ended up being on a life support machine her lungs colapsed because she had cysts on them pneumonia and staph aureus septecimia.she had an awful lot of fight in her more than me at the time.she has 2 older sisters and 2 younger brothers she is a vibrant happy little girl and will be 9 at the end of this month.my heart goes out to anyone who has to live with cf in anyway no matter how mild or chronic it maybe, no matter what you just keep going its like auto pilot constant,or am i the only one who feels like this?i guess looking on this page has made me see i not alone.lea goes into hospital for iv treatment every 8 to 12 wks although i have jus started doing them at home i hope that you r feeling optmistic about what is going on although thats not always easy. please let me know how you get on and would love to hear from anyone who perhaps feels like me.

Hi

My name is Krista.  I actually signed up after reading your message.  My son, Logan was diagnosed at 2.  He just turned three.  I was watching a film in Biology class about Gene Disorders.  I immediately came home and called my doctor and requested a sweat test.  He was being treated for asthma but I knew deep down there was something else wrong.  I thank God I didn't miss class that day.  I have read so many cases were children are diagnosed so late.  If I didn't see that film I do not believe he would be diagnosed today.  The doctors have said he has a "mild case". Whatever that means.  He is actually receiving antiboitics at home now because he had a positive throat culture for psuedomonas.  We only spent two days in the hospital.  They say the antiboitics should kill it off and he will be ok.  If anyone can help me with additional info about this, please write me.  Like I said, this is his first major illness associated to the CF.  I read terrible things about liver and lung transplants for young children.  I feel for these families.  I know how hard it is to live with this diease.  Sometimes I feel so afraid and helpless.  I think of the future and what it holds for my son. 

He is growing ok, not too small, but he is giving me a problem eating recently.  I would like to know about the medications other CFers are taking.  Logan is only taking albuterol before his chest therapy twice a day, enzymes and vitamins.  I want to make sure he is getting all the medications he needs, even if insurance won't cover it.  He has the G551D and N1303K mutations.  If anyone or any parent's child has this combo please email me.  I know everyone is different but perhaps the combos are at least a little similar. 

I would also like to know about any groups in North Carolina.  I live in Boone and there is really nothing here and no one I can talk too.  I am pretty much alone in this. I do speak to one lovely lady named Evelyn in PA.  She has given me alot of info and encoragement.

God Bless you all and let's Fight for the Cure!

Thank you for reading this and taking the time to listen to my story. 

Please email me at [email protected].  With any info or just to talk, it is nice to have someone that can relate to you.