Help! : I’m not going to lie to you all... - PCD Family Suppor...

PCD Family Support Group (UK)
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Help!

Janey92
Janey92

I’m not going to lie to you all I am bloody struggling by it has been a very very hard couple of years with my son with episodes of apnea, having to deliver cpr at 6 weeks old ,hospital trips ,mucus (so much mucus!) respiratory infections various specialists etc we finally got to a point we narrowed it down to either pcd or cystic fibrosis he was booked in for a camera and swabs in the respiratory tract testing for reflux and a ciliary brushing however the specialist couldn’t make it after all to do the ciliary brushing they ruled out reflux and found several bacterial infections and oedema fluid in his tubes to his lungs but not in his lungs anyway our respiratory doctor has now decided to not bother reorganising the brushing or testing for pcd 🤬 and my son has had antibiotics 4 times in the last 6 weeks ! It’s ridiculous and I am beyond exhausted he is very textbook pcd going by online info !

Anyway so my question is what symptoms did you or your little ones have and any other relevant information please so I can gather evidence/connections with our so to give to the doctor to push him to wanting to test again

Thanks in advance xxx

1 Reply
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fionac66
fionac66Administrator

Hi Janey

Sorry to hear that you are struggling to get a diagnosis.

Have you seen our video on what is PCD? The symptoms are all listed on the video ... mostly that the child is normally born with breathing issues, has a constant runny nose and a chesty cough which doesn't go away. pcdsupport.org.uk/what-is-pcd/

Which hospital are you seen at? You can get a referral to the specialist centre via your GP if required - although you may have to travel to them.

The PCD diagnostic service is an NHS funded service so there is no cost to your respiratory consultant or your local hospital - so I would push for a test to at least rule it out.

Happy to answer any specific questions if you want to email me chair@pcdsupport.org.uk

Fiona

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