Over the past few years, after talking to the experts (doctors, physiotherapists, nurses and other PCDers) regarding PCD and its care, I have garnered some tips for my two PCDers 🙂
Offically, we are five years into our PCD journey. We are still learning, and any other tips and ideas we get will be added on to this list :
1. Physiotherapy – this is THE most important thing. Consultants, doctors, professors, veteran PCDers, nurses – all of them stress this.
There are many ways to get the twice daily dose of physio. I won’t pretend it’s easy, but it’s definitely worth it. Adjuncts, blowing games, tickling, trampolining – all of this counts.
Crying…because they’re filling their lungs to bawl their eyes out – counts as physiotherapy. I am not recommending MAKING the kid cry – but hey, if they’re already crying anyway, make a session of it … remind them to HUFF and cough up and spit out.
Of course I would rather they laugh than cry – I met a lady who was diagnosed at age 25. She gave me the best tip ever – laughter therapy! Her words – a good laughing session with my friends is the best physio. I like the sound of that 🙂
Include other kids and make a mini competition out of the physio session. I have purchased several toys that allow blowing games. Things like flutes, whistles, harmonicas, straws, bubbles, pipes, ping pong balls, even just a huge tub of water with a bit of dish-soap in it – there is no end of ideas you could incorporate into your care regime. Strangely, U4 feels left out of the physio sessions – so I involve him too! He can huff like a pro now, and even though he has no need for chest physio, I figure it can’t harm him, and the competing element allows for more blowing for U5, who does need it! Win-win!
Lots of physical activity – U5 runs about all over the house, bouncing off the furniture and the walls like a mini-tornado – and we let him. Also, any opportunity to get in a walk, we take it. Of course, we could be doing more – and that’s something to aim for. More physical activities.
Swimming! This is not only fun for the kids but makes them expand their chest as well, which helps expand their lungs and allows them to shift the secretions. U3 was learning to be a rookie lifeguard, and just the number of laps she had to do made ME feel tired by watching… Need to start that up again, for sure.
Team sports – like basketball and swimming tag teams. I noticed that having someone to compete against boosted performance, which is always a good thing. Look for local clubs and join up. Your local council website usually is a good place to start looking.
Trampolining is always fun, no matter your age. My brother bought us a huge trampoline when he heard how it helps with physio (Thank you!). Of course, you must be sensible and safe – one person on at a time, etc – BUT a ten minute jumping session is enough as one physio session. Remind the kids to ‘huff, cough and evacuate!’
The flutter/acepella device is what we use everyday.
The routine should ideally take 10-12 minutes for U3 (ten cycles of 10 puffs, five huffs and three coughs followed by spitting out the secretions into a tissue). U5 does 5 cycles. We stopped having ‘special’ physio cartoons or toys because I found that physio took much longer because of the kids being distracted.
Using fun vocabulary helps immensely. This tip was from a physiotherapist. For example, while teaching the kids to huff, tell them to imagine how they would feel if an elephant sat on their tummy. (All the air will be squashed out of them!) U5 tells U3 not to ‘fat’ her cheeks while blowing the acapella – he means that she should not blow them out like balloons while puffing on the acapella. (This one always makes me laugh!)
A lot of information is available on the PCD family support group website. http://www.pcdsupport.org.uk
Singing! There is a recommendation for a singing CD on the Pcd website. , which I bought. This is actually great fun when all the family joins in – you could play the CD in the car or at home and have a good laugh while doing the singing exercises. Everyone could do with learning how to breathe properly…
Buy here : https://rbhcharity.org/product/singing-for-breathing-cd/
2. Have a PCD care pack always ready to go. U5 has a little backpack and U3 has a pretty floral vanity case. We try to take these everywhere we go. There’s nothing worse than needing a tissue and not having one! We have learnt this the hard way. I have been known to use a scrunched up till receipt as a tissue… (Once, I had nothing but a piece of tinfoil…don’t even ask.)
The fact that all this paraphernalia is stored in pretty or ‘cool’ tins and bags helps the kids take ownership of their care items and eventually (I’m hoping) their care regime.
Our care packs contain:
tissues (always needed to clean noses or cough up into discreetly)
nappy sacks to put used tissues into
hand sanitiser to clean hands and kill germs after any activity that needs it, e.g. Blowing noses or touching dirt (boys – noise with dirt on it…)
a small adjunct for physiotherapy on the go, in case we left the house without getting Morning physio in or if they feel bunged up and need a short session of blowing cycles
a saline nasal spray, to ease blocked noses while out and about
paracetamol in age-appropriate doses (tablets for U3 and sachets for U5)
a small mirror to check for stray ‘bogeys’…
3. Saline nasal rinses. This has been one of the best recommendations made to us by the ENT doctor. We do the rinse once a day, and it has made a huge difference in how clear their sinuses and nasal passages stay over the day. I would recommend EVERY PCDer to do this if they aren’t already, even the little ones. U5 started when he was 3, and I know of a kid who started when he was 2! The perks are plain to see – clear noses, less sinus-related headaches and less chest infections too. The germs that reside at the top of the nasal passages are cleared out daily. Of course, as with everything, cleanliness and hygiene are of the utmost importance. Information can be found here :
4. Have a good relationship with your pharmacist. In case you ever need any medication out of hours or urgently, they should be able to get it to you. Explain the situation to them so that they too are aware of your requirements.
5. Good posture will help immensely with allowing the lungs to fill to maximum capacity possible.
6. Change toothbrushes frequently as they do harbour germs.
7. Lastly, talk with the kids. Having PCD is not the easiest thing, but it is part of them and they don’t know any other ‘normal’. Everything related to their condition – be it physio or taking medications – should be incorporated into their daily schedule so that when they have to take over their own care eventually, it will be second nature to them.
This isn’t an exhaustive list, and we will be adding to it if we think of anything else. Leave us a comment if YOU have any tips for US 🙂
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