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
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Swer
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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 .
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.
Thanks JD this is so positive and I have noticed with my older child that she is a lot happier in herself when she is doing a lot of activates. and her breathing improves hugely. That may be also why in winter she is especially miserable.
Need to do some research on the vest - have never heard of it
Well done to you - you sound so motivated and positive, your reply has really helped
Yeah, the more activities the better. Swimming is one of the best activities she could do!
As for the vibrating vest, I'm not sure on it's availability in the UK. It's a US product and its very expensive. If you're really interested, here's some info on one of the more popular models:
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.
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.
Hey Swer, how are they getting on with managing it. I also live in Cork and see Dr Plant at CUH. He's very good, although I find I see more of his registrars than him!
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