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PCD Family Support Group (UK)
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Cough medicine

Hi everyone.

My son is 3 years old and has situs inversus. When he was tested for pcd at 3 months old the results came back that he had some sticky patches and cilia on the slow end of normal however not enough to be classed as pcd.

He has not had a chest infection yet and generally his nose runs clear. But it runs like a tap and his cough sounds horrible and productive.

He does have a constant cough and runny nose but when he has the cold the poor wee soul really suffers and struggles to clear it. The tixylix and other cough medicines just don't do anything. He could be doing with some mucous cough medicine but everything in the pharmacy is age 12 and over.

Firstly is there any recommendations for over the counter cough mixtures to help him.

Secondly is there any other remedies that would help. I don't have any special physio as he technically doesn't have pcd. He is an active boy though and does a lot of running about.

Thirdly is there such a thing as a mild case of PCD and is it worth getting tested again?

We live in Scotland so it's not easy to get to a special centre.

I feel so sorry for him and hate to think that any long lasting damage is being done.

Thanks in advance

5 Replies

Hiya... I would recommend that you try and get him seen by Dr. Anne Devenney at Glasgow Children's hospital. She can arrange for you to see a physio too. I would definitely ask for him to be tested again. Where do you live in Scotland?

As for cough medicines... I know they don't work in PCD kids. Lots of running around, trampolining, blowing bubbles and making sure that he coughs everything up (and out if possible) will be good for him. you also need to try and get him to blow his nose.

happy to discuss more if you want to call me tomorrow on our helpline 0300 111 0122. If not in then leave a message.

1 like

Hi, I sympathise with you and understand. My son was tested for PCD and had very similar results, his cilia were slow beating etc and covered in mucous. He suffered for over 3 years with recurrent bronchitis/croup (every other week). We were referred to the most wonderful respiratory specialist in the Evelina Hospital. He carried out a large number of tests all of which pointed to no underlying disease. Whilst reassuring, it has been a long journey! Immediately and in his first clinic he put my son on antibiotics for just short of a year. His health benefitted hugely from this treatment. It now turns out he appears to have had a persistent infection in the lungs - although the cause is unknown. He also treated him properly for Asthma. I found videoing the cough and keeping a diary incredibly helpful for the Drs and diagnosis. I found the preventer inhaler very good as well, for a long time he wasn't responding to Ventolin but now he has improved and the infection has cleared up this is having an effect. I would say don't give up if you feel there is something going on - ask to be referred to a respiratory specialist as they have the experience to help. I'm sorry I can't offer much more advice, but I can really understand your worry.

1 like

I realize that I am not a doctor but 49 with situs inversus and dextrocardia that was finally diagnosed at 40 with PCD. I saw a specialist at 13 in England who just said that I had a chronic cough, a bit of asthma and would grow out of it. I have a fair amount of damage to my lungs now and only in the last 1 1/2 have learned more about this disease and what I can do to help manage the condition. Everything Fiona says is so true. Exercise is fantastic for bringing up mucus. I just came back from 3 days camping at the beach ( now live on Vancouver Island) and boogie boarding the ocean is also great. I use a nebulizer daily too. I hope you can get to see another specialist soon who can give more advice.

But when I look back to my childhood in England I had so many sweets and dairy including the milk we were given at school in those little bottles because my parents wanted to make sure I had enough calcium. Now I try my best to avoid both as sugar as in does tend to cause inflammation and dairy tends to trigger my body to make more mucus. If you can reduce those for a month I think you will see a difference. I realize there may only be true for my body but it maybe something you wish to try.


Thanks for the replies. I've made an appointment with the gp to get referred to Dr Devenney and will let you know how that goes. It's interesting about dairy because he naturally does not really like it. He does however like sweets!!


And I never thought of recording the cough. I will definitely do that!


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