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diagnosis of cystic fibrosis Lock Rss

my beautiful baby boy (10 wks now) has just been diagnosed with cystic fibrosis 5 wks ago. We are devastated and upset and stressed and crushed. Dont know what to expect or how deal with it all. Any mums with babies with CF please help. How do you get all their meds down each day? Think he may have reflux as well, screams and cries and squirms in pain. Did you send your children to childcare? How paranoid do you get about colds/flu? Do they get better with antibiotics or does it mean hospital stays each time? Dont know if l am going to be too protective. Do want him to do normal things but worried about damaging his lungs????
Hi Di, sorry I dont know much about it. I just wanted to send you guys a GBH. I am guessing you have already googled this condition and talked to the specialist. Hopefully you might get some answers to your questions here on this forum. Take care. xx

We went through the testing process with our little boy as his newborn blood test came back positive but fortunately for us, he is just a carrier, i can only imagine how hard this is for you all. I don't know much but i was in Victoria, Aus and the genetic councilors at the Monash were really good at answering all our questions. I'm sure you have been through something similar but maybe if you still have questions you may be able to find something similar you can contact. Or perhaps there is an online support group with other parents further through the journey?

My neice has CF, she will be 10 in July. For the most part she has a pretty normal routine, she went to kindy and obviously is now at school. She probably has a hospital stay at least twice a year, mostly her illnesses are dealt with by antibiotics. Now she is older her hospital stays are actually shorter as she does 1 week in hospital and 1 week hospital in the home. She is actually doing hospital at home this week after going in last week and getting a permanent port put into her chest. She has a number of other unrelated developmental issues which makes her more of a special case, but even with that she really is just like any other kid.

i have an almost 3yo who was dx with cf through the newborn screening. i would be happy to chat regularly with you, cos i have struggled to find any good chat sites for us cf mums.
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