Hi all,
I’m really hoping to hear from any parents whose children were diagnosed with cystic fibrosis (especially if it wasn’t picked up at birth), just to get a sense of what led to the diagnosis and what symptoms you noticed.
My son is 5 and has had ongoing health issues since he was a baby. He’s had frequent chest infections since around 6 months old and has been hospitalised three times in the last year. We’ve been told it might be asthma, but because they can’t properly test until age 7, nothing is confirmed yet.
He has a constant cough, gets breathless easily, and struggles to keep up with other kids his age. His tummy is often bloated, and his poos have always been bulky and extremely smelly, though he’s never been constipated. He’s had persistent sinus infections since birth, with inflamed nostrils almost constantly, and has had his tonsils and adenoids removed due to sleep apnoea. He also has a dust mite allergy.
He’s always really sweaty, especially at night, and drinks huge amounts of water. His skin also tastes salty, which I honestly never thought much of until now.
Today, the nurse called to book him in for a sweat test, and I’m absolutely terrified. He seems to tick so many boxes, and I can’t stop thinking about it. I’ve had a gut feeling for a while that something more was going on, and now it feels like all the pieces are coming together, albeit in the scariest way.
If anyone has been through this, especially with a diagnosis that came a bit later, I’d really appreciate hearing what symptoms your child had and how things unfolded. It would be such a help to not feel so alone while we wait.
Thank you so much.