I have 2 children. A girl who just turned 5 and an 18 month old boy with suspected PCD. The consultant is treating them as such. We are trying to get to HSC funding to go to the UK to get tested - living in cork, Ireland. They did the test with the nose brushing on the 2 of them and it came back inconclusive for both so we need to go to Southampton.
I don't really know many people who have children with PCD so my question is about the management of PCD. My children are on Hypertonic saline solution in nebulizer daily, physio, and azithromycin 3 times a week. However, they continue to get bad chest infections and most times it takes 2 or 3 weeks of Augmentin DUO to get them better again. And they always have a really bad runny nose and wet cough. They never leave them.
Is there more I can do? I would love to give them some relief form the nose and cough. I have tried things like vicks plug ins and salin plus. But it doesn't make much of a difference.
Would love some advice. Thanks