Hi all,
I’m really hoping to hear from any parents whose children were diagnosed with cystic fibrosis (especially if not picked up at birth), just to get a sense of what led to the diagnosis and what symptoms you saw.
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 really struggles to keep up with other kids his age when playing. His tummy is often bloated, and his poos have always been bulky and extremely smelly (but never constipated). He’s had sinus problems since birth, plus his tonsils and adenoids were removed due to sleep apnoea. He also has a dust mite allergy. Also his nasal passages are always inflamed.
On top of all that, he’s always really sweaty, even when it’s not warm and he drinks huge amounts of water every day. It’s something we’ve just adapted to, but now I’m wondering if it’s all connected.
Today, the nurse called to book him in for a sweat test, and I’m feeling quite anxious. I’ve had a niggling feeling for a long time that something more was going on, and now I’m just worried but also a bit relieved that we might finally get some answers.
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 a huge help to not feel so alone while we wait.
Thank you so much 💐