hello,i have 7years old son and last week geneticist dr call me and told your son is pcd 99%.
he hasnot any big problem in chest and ear until now .just he has runy noise and use sinus wash and antibiotics daily. is necessary to start chest Physiotherapy immediately?
are we have different kind of pcd ? hard sickening?mild?
Using the chest physiotherapy can do no harm. I have been using it since I was 10 (it was no available before then) and it really makes a difference in breaking up the mucus in my lungs so that I can cough out!
thank you for replay
The mainstay of treatment for PCD is twice daily chest physiotherapy, to help clear the lungs, this will clear out the secretions and help keep the chances of infections down. Usually a chest physiotherapist will show you the techniques to use.
There is some useful information on the PCD FSG UK website, via this link
pcdsupport.org.uk/what-is-p...
thanks for replying.
i know you are adult could you tell me how old are you? and have you diagnosed late ? i want to know is adult ok with pcd ? thanks
I was diagnosed with PCD at the age of 36 and although I had problems as a child, mainly due to bronchiectasis, I still lived a normal life, interspersed with the odd hospital admission. I worked all my adult life apart from a break when I had my twin daughters. I am now in my 60s.
My 7 year old daughter has PCD and chest physio along with prophylactic antibiotics (Azitromycin every Mon/Weds/Fri) has made a big difference to her lungs. It’s been 10 months since she has had a chest infection which is just amazing! Every day we use a nebuliser with Nebusal 7% followed by chest physio using an Aerobika device which she blows into. This really gets things moving and helps her clear her lungs easily. The Aerobika device also has an attachment which means you can use nebuliser and chest physio together. It takes less time and is useful for the days when my daughter is totally fed up. Is not easy for a 7 year old to understand all of this. If you don’t have access to a physio device other ways to help move mucus is to blow into a glass of water with a tube or straw, activities especially ones that get them jumping e.g. trampoline or skipping, and for my daughter, tickles and a good belly laugh can do the trick! As for the sinuses, my daughter had a severe infection for the last 6 months and because the antibiotics we were using initially were ineffective the infection really took hold. This really affected her quality of life and in turn, the families as we were very restricted with where we could go and what we could do. It’s not easy. Eventually her consultant found the right antibiotic, which was very strong and harsh on her system but after 60days of this it’s seems the infection has finally cleared, all I can say is that if your son gets a sinus infection, it needs to be treated quickly with a strong antibiotic before it takes hold. We also do Neilmed sinus rinse twice daily. Hope this helps. Best of Luck.
hello and tanks for sharing your experience,he was diagnosed 7 days ago.and his specialist told if he hasn’t any cough ,it doesn’t necessary to start physio as soon as .and he has mild pcd!
unfortunately my son is very stubborn and we have alot of problem for twice sinus wash, twice chest physio daily is my nightmare .it s hard to explain for him and he doesn’t accept that. however he have used a lot of antibiotics for two years for his noise ‘s mucos and you know it s impossible to continue for ever.for last month he didn’t use antibiotics although he had yellow mocuos but he dont have any problem such as fever or cough or... until tonight that he has Sore throat and fever and dr asked to test mucos before put him on antibiotics.
your daughter and my son are same age and i hope to find more information about pcd . best wishes for you and your daughter
New to the forum.
Adults with PCD & hearing issues
Our baby has PCD
IVF with ICSI
Having a tough time.