Cilia Biopsy

[Marieduns]

Hi. My son got the cilia biopsy last week to test for PCD. It was very traumatic for him ( and me) the firt time was bad enough but he had to do it again 45 minutes later because they said the cilia were damaged due to a recent infection. We didn’t have to wait again but i dont know if the sample was correct the second time! Has anyone had to do it more that twice? The results wont come back for up to 3 months. I really hope they dont come back as inconclusive

[Mpmc]

Our daughter had to have a similar retake with her first sample. And unfortunately has had to have the process repeated 3 times, as every time it has been an inconclusive result. The structure is fine, but the speed they beat is a little slow. She also took long term antibiotics, on top of her regular prophylaxis, to try and clear her sinuses, but there was still significant mucus and bacterial load when they examined it. I know that didn't help, but we hoped the culrtured regrowths would have given them a definitive answer. Unfortunately it doesn't seem to be that simple. I agree it is a distressing experience for them. Our daughter refuses to even contemplate another, and for the time being, we are hoping genetics can provide the answers. Hopefully you will have a better outcome. Best wishes to you both.

[fionac66]

Hi .... have you seen this video which explains the process of testing? pcdsupport.org.uk/what-is-pcd/

Hope you get some answers soon