My 16year old son was diagnosed with PCD 3 weeks ago. He is finding it extremely hard to accep it. In fact he says he just doesn't want to. I understand his frustration and although this situation could be much worse as we had originally feared CF but it's not that much of a consolation to him. He doesn't want to accept that this is going to be his daily routine for the rest of his life.
Can anyone advise me on how I can help him. I think some counselling is the next step but he is very reluctant. I think time will help but I feel useless right now. Neither of us ever expected this and it's a lot to take on. Can anyone help?
Caroline
Co. kildare Ireland
Written by
Caz3283
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Hi Caroline - I am sorry your son is struggling. I would suggest he has a look at our website and learn as much about Pcd as he can (checking out the case study videos too as they will show real people living with pcd). I would also speak to the consultant that diagnosed him to get him appropriate support ASAP. Of course we are happy to talk to him too if that would help or you. Just email me chair@pcdsupport.org.uk
Thank you very much Fiona for your reply. I really appreciate this advice and will certainly encourage him to do the same. I will be back in touch I'm sure.
When I was finally diagnosed with PCD at age 36, I initially thought to myself, that this was a whole new thing to be dealing with. But then when I thought about it, I realised that actually nothing had changed, I had been born with PCD so had never actually known any different. The only thing that was different was I now had a name for what I had gone through all my life, but more importantly I had strategies and treatments for helping me deal with my symptoms, thus making me feel more in control and generally better than I had been previously, before my diagnosis.
It may be worth trying to explain to your son, he is still the same person, nothing is actually worse, he hasn't just acquired PCD, it's something he's always had. I appreciate this is not always easy with a 16 year old, as in their eyes parents do not always know best!
Thank you very much for your advice, I really appreciate all the feedback here, it's a huge help.
I will certainly act on your advice as that's a great way to approach it. He was born with it and it's just taken till now to know it and treatment now can help with what he had struggled with before helping him to lead a perfectly normal life.
I will be encouraging him to think like this and hopefully it will help.
I was diagnosed at 34 and was very resistant to being told to take 2 puffers, do physio twice a day and take strong antibiotics when ill, when previously I'd struggled on low dose antibiotics from my GP.
Until then I'd just had a chesty cough, always infected, and hadn't realised for a long time that most people didn't ever cough up phlegm! I'd been unwell a lot, but again I hadn't known any different and not compared myself with others.
It was only after I'd been in the Brompton for a week on intravenous antibiotics that I realised how well I could feel, and was then more motivated to stay well.
It did take a long time for me, as a sane adult (!) to adjust to taking more medication and taking time to do physio.
Also It's not a pleasant condition to talk about to your peers, particularly as a teenager. I now tell people its a genetic condition that means I have to clear my lungs with physio whereas their bodies help them do it automatically, I don't go into sputum etc!
If your son can spend time with medics who can explain the condition and how to manage it, and make it appear a bit less odd and unusual, I'm sure he'll get used to the diagnosis and what he can do for himself. In the meantime he will be more aware of how he is feeling and now knows there is something that can be done.
I find seeing a good physiotherapist is always encouraging.
He'll work it out in his own way, none of us like to be told we have to start doing things we don't want to at any age, I certainly didn't! Took me a year probably to get stuck in to the new regime once I'd realised it worked!
Well done for getting the diagnosis, that's a good start!
Thank you so much. I can totally understand what you have described as my son would have felt that way too. Never thought he was really that different and didn't compare either. We just thought it was a wet cough but nothing too serious.
You're right, time will definitely be the only thing to help right now as it must be difficult enough at any age to be given this diagnosis But especially at his delicate age in life.
I will continue to encourage him to research and follow groups like this as its been a great help to me so far in just 24 hours.
Hi Caroline, I'm sorry to hear your son is struggling. It has to be so hard for both of you but he now has a diagnosis so he will start on the correct treatment for him. A few of us have set up a closed group on Facebook called PCD support group Ireland if you both want to join. At present it is a small group of parents of young children and adults with PCD but it may help you both.
Thank you very much for your reply and advice. I have signed up to the group on FB and will encourage my son to do the same. You're absolutely right, while I'm glad we have had a diagnosis and can understand now why he had been showing symptoms, it is a little harder for him to accept. He expected a course of antibiotics to clear the cough but unfortunately this wasn't to be. Time, I hope, will help him accept and forums like this will be a great outlet for him also
Hi Caroline, my daughter Erin was diagnosed in May and she started antibiotics 3 times a week. It took a couple of weeks to kick in but it definitely improved her cough and snuffles. Hopefully your son will see an improvement soon.
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