Need Information

[anonymous]

Hi i have a baby cousin who is only 29 days old my uncle was told she had it from only a couple days old i was just wondering i kno its not better or anything but what do you think is better as in getting cf at a young age or developing it later? im thinking since she had it right off the bat her body can cope to it more and not effect her as severe but then i thought well its a gene thing so dont all pple who have it have It from birth ? that and i would also like any links to information and exercises to do with her to help her lungs when she is over the house im only 16 so if it involes like driving or anything i cant do it thank you very much for your time i just wanna help my uncle and his wife give there baby the best life possible

Thanks and srry about the mis spellings and stuff i type fast and dont look back

--Ryan--

 

[anonymous]

DS was diagnosed a few days after he was born. We feel fortunate that he was diagnosed so early before there was any major damage to his lungs. We've met other people who kept taking their kids to the doctor because of lung infections, constipation, sinus issues, ear infections, failure to thrive and weren't diagnosed right away. In our case, we hit the ground running with CPT, medications and treatment.

 

[anonymous]

A friend of mines daughter wasn't diagnosed until she was 5. By then she had clubbing of her fingers. Doctors just thought she was tiny and had asthma. By the time she was 14 she was waiting for a lung transplant and unfortunately died before lungs were available.

 

[julie]

Just some clairification here, you do not "develop" CF. You are born with it or without it, but it is not something your body can develop or "catch"/acquire (like AIDS, Herpes, Cancer...) so you are correct in the fact that it is genetic and all people who do have it, have it from birth. The confusion can lie in the fact that sometimes people don't get diagnosed immediately, for some it takes months, some it takes years or even decades.

As far as her lungs, have your uncle show you how they do chest physical therapy on her. If your uncle doesn't know, get him on this site so some parents of infants (I have a husband with CF so am not familiar with the infant care) can educate him and help him.

I will look for some links to information on chest pt and post what I find here.

 

[anonymous]

Minneapolis Children's Hospital has a good Chest Physiotherapy Handout that can be downloaded in PDF form. They printed off copies for us when DS was diagnosed as a newborn. Good diagrams, easy to understand instructions.