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New Member

Date Joined Aug 2008
Total Posts : 1
   Posted 8/11/2008 11:34 AM (GMT -7)   
tongue  Hi everyone!!!!   My daughter is 10 and she has Cystic Fibrosis.  She was diagnosed at the age of three.   She is doing extremely well.  She plays soccer and is a cheerleader.  She loves to swim and jump on her trampoline.  I think her being so active helps her so much.   She has been hospitalized four times in seven years.  The first time was after she was diagnosed so they could start all her meds.  The second time was for sinus polyp removal.  The third time was due to severe stomach pain.  And the last time was removal of her tonsils and adenoids.   When she was diagnosed, it was an extreme shock to us and the worst day of our lives.  We have two other children and we had NO idea we were carriers.   But, now we take each day at a time and Sydney is such a blessing.  She gives me comfort without even knowing it.  She always has a smile and she gives everything 110%.  I would love to talk to any of you about this horrible disease and how it effects you.  If I can help you, I will be glad to try.   I look forward to meeting you.  Thanks so much!!!!

New Member

Date Joined Aug 2008
Total Posts : 8
   Posted 8/12/2008 6:56 PM (GMT -7)   

Hi sydsmom,

My daughter Katie is 1 yo. She was dx'd w/ CF @ 5wks of age. We had no idea that we were carriers. That day of diagnosis is one I'll never forget either. Her newborn screening test came back high for Cf, but the doc told me she was a carrier. She was having constant feedings but not being satisfied, almost constant crying and stomach pain with feeds, poor weight gain.  She tasted salty. I'm a pediatric nurse and I knew something was wrong,but they kept telling me it was colic, breast milk allergy, etc. At our 2 week check up, I pushed for a referral to the Cf clinic. we did bloodwork and DNA analysis and got the confirmation. I had 2 friends die of Cf (in their 30's), so devastated was a good word.

Now, after a year, we have adjusted and have our own "normal". We are pros at giving enzymes and nebulizers and chest percussion. Doing CPT with a 1yo is like wrestling an octopus! That your daughter is 10 and doing well gives me SO much hope and encouragement! I would also like to know how other CF moms handle things with their kids. Thanks!

New Member

Date Joined Aug 2008
Total Posts : 2
   Posted 8/13/2008 9:57 PM (GMT -7)   
Hey Sydsmom,

Wow, it sounds exactly like my own experience with CF. I was diagnosed at the age of 12 however (pretty late). The reason was because I was so active and a competitive swimmer. That's exactly what kept me healthy and gave me a head start (sort of) with the disease.

My advice to you is to keep your daughter as active as possible. Exercise is so important in people with CF lives. The older I get the harder it is for me to get around but I keep a very active lifestyle and exercise is a very important part of my daily life.

Also don't be afraid to challenge your daughter. Just because she has CF doesn't mean her life should be any different than someone w/out CF. My parents never made me (and still don't!) feel like I had a disability. It has helped me tremendously with being independent and having a very full life.

I could go on forever about living with CF but I'll leave it at that for now. If you have questions keep posting we all need the support here!

--auggie in philadelphia.

New Member

Date Joined Aug 2008
Total Posts : 8
   Posted 8/14/2008 9:14 PM (GMT -7)   
Thanks, auggie! I know I have 5yrs yet until school, but I worry about how we're going to fit in school, extracurricular activities, homework, breathing treaments, etc all into one 24 hr still be able to get some sleep!
Thanks for the supportive words!

Forum Moderator

Date Joined Feb 2007
Total Posts : 1050
   Posted 8/15/2008 4:08 AM (GMT -7)   
Hi there sydsmom, welcome too healingwell.

It's great too hear about parents and there children with CF. Welcome aboard, and hope you can find something here that may help you. You sound like you have a lot of knowledge too pass on too:)
Best wishes
Gem roll
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus

New Member

Date Joined Aug 2008
Total Posts : 7
   Posted 8/17/2008 4:44 PM (GMT -7)   
Hi!! I also am a brand new member. I just joined today. I'm glad to hear that your daughter at least is now receiving treatment. I agree with a previous poster that exercise is critical for cystic fibrosis. I am a 21 year old who was diagnosed 6 hours after birth due to a perforated bowel (I'm not sure on the spelling there, sorry) but I have to give my parents credit. They always pushed me to be active. I was in band and I would run and play just like any normal person. I'm currently a senior in college and am going for secondary education. I know it's going to be tough, but I've been told that I can do anything as long as I put my health first.

I did go through a very hard period as a teenager when I wanted to be out doing things like other teenagers, but instead I had to do my vest and inhaled nebs. One of the hardest and best things my parents did was let me handle my own therapy and when I refused to do it, they stepped back. They told me I should but they never forced me. I ended up getting quite sick my senior year of high school and realizing that I better start doing my therapy. It did, however, take that to make me realize it. My parents told me recently that it was the hardest thing they ever had to do but my doctor had advised them that I needed to start taking over my own health care otherwise I would never do it as an adult. I think they were quite right because I now understand that it is my responsibility.

I think personally it is a hard transition to go from being a kid and teenager with CF to an adult with CF as the workplace and college setting present some new problems. It sounds like, however, that your preparing your daughter to also feel like she can do anything even though she has this disease, and in my opinion that is worth more than anything. Encourage her in everything she does. If you have any questions feel free to reply and ask. I wish you the best of luck and my prayers are with you.

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