PCD maybe my second daughter has it ?

[Stuart74]

My eldest daughter is 13 and has PCD, her sister is 7 and got tested at 4 for PCD but came back negative. But since turned 7 in Dec 2018 has had 4 separate coughs and has one presently.Can Lexi get PCD as she grows up ? Can her cillia hairs stop working at anytime ?

Thanks in Advance

Stuart

[fionac66]

Hi Stuart

No you can't get PCD as you grow up ... you are born with it but if you are concerned I would get here checked out with your doctor to get your concerns squashed. The cilia can stop working due to external factors such as infection or smoke but normally if these things are removed then they start to work again.

Where was your daughter tested? Which test was done?

Good luck

Fiona

[Stuart74 in reply to fionac66]

Hi Fiona ,

Lexi was tested a few years ago at Leicester and it was the nasal autopsy.

Kacey who has PCD is now 13 and was diagnosed at 5 again at Leicester.

Just worrying that Lexi is getting more coughs as she gets older. She gets her fair share that's for sure.

[fionac66 in reply to Stuart74]

Hi Stuart - probably worth talking to the PCD Team that look after Kacey - you can tell them that I suggested it was a good idea!! Fiona (Chair of PCD Support Group!!).

[Stuart74 in reply to fionac66]

I will mention it to DR Bhatt at QMC at Nottingham and see what he suggests.

Thanks for the replies.

Stuart

[BessH]

Hi Stuart - are you in Nottingham? I live inNottingham and have a 9 year old daughter with PCD who really wants to know or speak to another girl with it.

Lucy

[fcfilice]

Hi Stuart74

I have had a family member have the same symptoms you described with your 7 year old with a milder case of PCD. I don't understand why but in my family one member started getting sicker as she aged into her late 40's and getting worst and worst over the years. Myself I had symptoms from the start in life and have bronchietasis but with good chest physio my lung disease is progressing slowly. My other family member who developed lung and sinus disease later in life does not perform chest physio or sinus rinses. Her lung disease developed later but is progressing at a much quicker rate. She has more lung infection then me requires more hospital visits then me with IV antibiotics and coughs up blood in the phelm versus myself no blood in phelm yet and oxygen close to normal. I have one barrier I have trouble some days walking up stairs or hills but I can run short distances most days. Anyhow if you come across any information about genetic of PCD please let me know.