Has anyone had tests for Primary Ciliary Dyskenesia?

My little girl has alot of the symptoms of PCD and is probably going to be having a lung biopsy to test. She has been put on Budesonide nebs, which seem to have had an effect on her symptoms (altho it could be sheer coincidence as we havent given it the month that it usually is between attacks!)

Has anyone any experience of PCD?

Would Budesonide help if it were PCD or by her showing signs of reacting well to this drug tend to show an Asthma diagnosis for sure?

Sorry......all a bit confusing!!!!

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  • I'm afraid I don't know much at all about primary ciliary dyskenesia and how it's treated, but I did find a website about it (see below). They have a forum there and they'll know much more about it than we do.

    pcdsupport.org.uk/index.php

  • my Son was tested for PCD and had lots of the symptoms but luckily, he was clear.It's very rare so hopefully your daughter hasn't got it.I think they are still trying to understand Matty's asthma, he is nearly 11 and I don't think we will ever have the answers we seek.Just when I gave in trying to figure it out, I developed the same type of asthma so at least I can explain to the consultants what's going on.

    Good luck

    Kate x

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