Advice on Dextrocardia standard checks

[DextroBaby]

Hello, and thanks in advance for any assistance.

A long time ago now, we were lucky enough to have a little girl with Dextrocardia situs solitus and no other issues (thankfully). She had many round of tests after birth, and a PCD test at about 2 years due to recurring chest infections and pneumonia (not 100% sure but unlikely for PCD).

However, said baby is now a teen of 15 and I guess I'm aware that as bodies grow and change, I don't know whether she should have another scan, a lung function, genetic blood test? I just have no idea whether I should be doing anything to help her with lifetime care of this or where to start.

All advice welcome.

[C9RPY]

Hi

I have dextrocardia with situs inversus.

They checked me for PCD (7 years after dextrocardia diagnosis) and confirmed I have PCD

For me, the NHS care / maintenance aspect is all focused on the PCD. I'm guessing it's because there's nothing that can or needs to be done for the dextrocardia. It all works fine, just in an unusual orientation!

I have regular hospital scans / tests to check lungs / chest, show me how to clear using physio & breathing techniques, and just to see how I'm coping generally

Does your daughter have any signs of PCD? Chesty cough / runny or blocked nose / hearing issues / fatigue etc

If so, it might be worth getting her retested? The PCD aspect needs constant medical supervision, so it's important to rule it in or out if you're not 100% sure

[DextroBaby in reply to C9RPY]

Thank you for replying, she doesn't have recurring chest infections now, but it's just so long since we had anything checked over, I am fretting a little.

She is generally very tired but it could be a teen thing, and selectively hard of hearing , but I couldn't say either seem directly related.

[C9RPY in reply to DextroBaby]

My hearing was mostly OK at 15, and I never really had any chest infections. Like you say it could just be normal teenager stuff.

There are a few specialist hospitals that cater for PCD I think. My one is the Royal Brompton in London.

Depending where you live, it may be worth contacting your nearest one, and asking for a new PCD test

It will either put your mind at ease or help your daughter get access to PCD care

[DextroBaby]

I think I will reach out to the GP, are the PCD nasal brush tests still a bit brutal?