PCD Management Advice

Hi

Not sure that there is much else you can do but it would be useful to see the docs in Southampton as they may have some ideas.

Have you had a good look at our website? You might get some ideas there .... pcdsupport.org.uk

Good luck and sorry don't have any great ideas for you.

Fiona

Chairman of the group and mum to two boys with PCD (now aged 18 and 20)

That's really nice to hear!! Thanks

Hi my daughter has PCD. She is 10 and has the same tx but also a nose watering can . It is great for clearing the nose and is not more medication but salt solution. It is easy to do once you get used to it. Was provided but can get from Amazon for £10 . Yogi nose buddy .

Hello there,

Since you asked in my topic, here's my story, I hope it will help you. I'm 23 and I was diagnosed at a relatively young age. I have PCD with Situs Inversus & Dextrocardia. (making it Kartagener's Syndrome) My younger brother was also diagnosed with PCD.

My life has been fairly normal apart from the constant hospital admissions due to lung infections, chronic sinusitis and productive cough. PCD is manageable if the individual makes an effort to stay healthy. For as long as I could remember, I've been doing physio/treatment twice a day. For physio, the most notable ones I've tried are clapping, the IPV and the vest. And in regards to treatment, I've honestly lost count at the number of drugs I've tried. (numerous inhalers, turboinhalers, nebulizers) 

The thing is, everyone is different, you have to see what works for your kids and go with it. I know which treatment works for me and I know which don't. Just because one treatment works for me, doesnt mean it'll work for everyone. Its trial and error. In my opinion, the two most important things when it comes to managing PCD are physio and physical activity. 

When it comes to physio, clapping and the IPV (Intrapulmonary Percussive Ventilatory) worked extremely well. The clapping for when i was younger and the IPV was excellent during my teenage years. I currently do the saline solution nebulizer with the Therapep.

As mentioned in a previous reply, the sinus rinses with salt solution is a great method to clear the sinuses. 

Above all, have your kids stay active. Despite my lung capacity being around 40-50% of a healthy persons' lung capacity, I've never let it stop be from doing things I wanted to do. Since the age of 4, I played ice hockey every winter and baseball every summer. I only stopped doing so at the age of 20 when I graduated and became a full time Radiographer. At that point, I picked up boxing and started going to the gym 4-5 times a week. Any form of cardio/physical activity is great for the lungs. 

Sorry about the long read. All this to say, yes PCD is very manageable and yes, your kids will be able to live a very normal life. You just have to put the time and work in it. 

If you ever have any questions, do not hesitate to contact me. 

JD

My grandmother who I suspected had PCD lived till 77 years of age. She was on oxygen therapy, antibiotic, and puffers. She slept sitting up in her chair because she had was a postural cough when she lied flat in her bed and developed Cor-pulmonale (right side heart failure) . Grandma didn't not do chest physiotherapy, used no nasal rinses and did very little exercise. The only reason she suffered these symptoms was due to the lack of knowledge in the medical community. 

Knowledge is power and determination is a goal. Strength comes from knowledge and hard work means you reach your goals. Work hard and you will get your results.

Hope this little bit a information helps.

Hi. I have two PCDers. A 12 year old girl and a 4 year old boy. We were diagnosed 4 years ago when my boy was 3 days old. 

I was given neilmed nasal rinse by the ent specialist Dr Rae two years ago. I found it has made all the difference in helping keep their nose clear. It takes s bit of getting used to but the benefits are worth it. 

Our consultant Dr Williamson says that nasal rinsing also helps keep infections st bau by clearing the bugs that live in the nose.