Hi Larasmommy,
You might be comforted to know that my daughter is successfully and reasonably healthily 10 years ahead of you.
At 5 my daughter was admitted with pneumonia which did not improve as soon as it should have. It took a week for them to find the right med. Suspicious, staff arranged a check up to discover she had a small area of collapsed lung. Then followed many tests, which turned up borderline sweat tests and a WRONG diagnosis of immotile cilia syndrome which i disputed and was later agreed to be wrong. SO GO WITH YOUR GUT MOMMY FEELINGS.
Over the next few years the only significant characteristic was chest infections. She has been hospitalised three times since 1996 which is insignificant compared to other CF'ers.
Finally, a sputum test showed up a particular bug which is only found in CF kids. Because NZ was so behind in DNA testing she had blood sent to the USA which was negative because of the rare gene.
Finally in 2004, further testing showed the R75Q and a positive diagnosis.
After much research, experimenting and discussions with docs, I have come to the conclusion that I make sure she eats well - lots of carbohydrates and extra fat and salt (as for most CF) - all my kids play sport and I encouraged that from an early age so that she has grown up to think sport in your life is normal - keeps the lungs healthy. It has become obvious that if the diet and the excercise get behind, she gets tired and sick so I have done my best to include her now in information and she knows herself what keeps her well.
If there is no pancreatic damage count your blessings. My docs are very optimistic and I really dont think about it much - Im just aware of when she sounds chesty and get the antibiotics started quickly, go for a swim and a bit of physio.
She has done everything she has wanted to do - trampolining, soccer etc and is actually studying Physical Education at school as a subject.
Please feel free to email me: scotteekiwi@yahoo.com.au
Ellen
You might be comforted to know that my daughter is successfully and reasonably healthily 10 years ahead of you.
At 5 my daughter was admitted with pneumonia which did not improve as soon as it should have. It took a week for them to find the right med. Suspicious, staff arranged a check up to discover she had a small area of collapsed lung. Then followed many tests, which turned up borderline sweat tests and a WRONG diagnosis of immotile cilia syndrome which i disputed and was later agreed to be wrong. SO GO WITH YOUR GUT MOMMY FEELINGS.
Over the next few years the only significant characteristic was chest infections. She has been hospitalised three times since 1996 which is insignificant compared to other CF'ers.
Finally, a sputum test showed up a particular bug which is only found in CF kids. Because NZ was so behind in DNA testing she had blood sent to the USA which was negative because of the rare gene.
Finally in 2004, further testing showed the R75Q and a positive diagnosis.
After much research, experimenting and discussions with docs, I have come to the conclusion that I make sure she eats well - lots of carbohydrates and extra fat and salt (as for most CF) - all my kids play sport and I encouraged that from an early age so that she has grown up to think sport in your life is normal - keeps the lungs healthy. It has become obvious that if the diet and the excercise get behind, she gets tired and sick so I have done my best to include her now in information and she knows herself what keeps her well.
If there is no pancreatic damage count your blessings. My docs are very optimistic and I really dont think about it much - Im just aware of when she sounds chesty and get the antibiotics started quickly, go for a swim and a bit of physio.
She has done everything she has wanted to do - trampolining, soccer etc and is actually studying Physical Education at school as a subject.
Please feel free to email me: scotteekiwi@yahoo.com.au
Ellen