Posted 9/1/2007 3:04 PM (GMT -6)
I can't offer much, but I'm going to try my best, to help you.
CF isn't the end of the world, the end of the line for your child or anything like that. People with CF are living a lot lot LOT longer now than they used too, and with treatments improving all the time, it is guessed that today's generation of children with CF will be in there 60's. The life expectancy average has just been increased too 35, which may seem like a small step, but that's an extra 4 years. I have friends already in there 40's and still going strong without transplant. I know of one person in there 60's, without transplant. When I was born my life expectancy was 5, then 12. I've beaten both of them, and am now 21 and still going extremely strong!
The main plan for now, is diagnose childen straight away, start treatment straight away, and try to keep away infections until 15-16. That way children will go through school, as normal as other kids. Treatment will still be a lot, physio, nebs and medication and weigth gain shakes, but less IV antibiotics and nebulised antibiotics.
I personally have the problem of having muscle problems too deal with as well, meaning I can't do any real excercise, except core stability and chest physio. One thing is for certain though it's usually the most active children who go longer without an infection. Make sure your child is as active as possible. I also highly recommend trumpet/cornet or any big wind instrument like that. I reckon my lung function is still higher than even my nurse's, because of playing trumpet growing up. Back then my lung function was 120%, 20% more than what is considered average for age height gender and weight.
I know you will want to guard your child, and that's good and everything. At the same time your child growing up, will need normality. Never hold your child back unless it's going to be detrimental on his health.
That's all the advice I have for now, keep posting with your questions, and I will do my best to answer them!
Co-moderator in the: Cystic Fibrosis Forums
Woe to the child which when kissed on the forehead tastes salty. She is bewitched and soon must die.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ciprofloxacin, Ursodeoxycholic Acid, Saline neb/PEP system, Piriton, Mirtazapine, Diazepam.
Had a Port-a-cath fitted on chest wall since Nov 05