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Growing up with PCD

Fiona’s sons both have primary ciliary dyskinesia. She runs the PCD Family Support Group.

Family indoors

I always say Euan was born with a runny nose and a cough. He had bronchiolitis regularly but he was never hospitalised.

No one thought there was anything wrong because he was hitting all the normal developmental milestones.

He was diagnosed with asthma but his inhaler didn’t seem to make much difference. Now I’m pretty confident that he didn’t have asthma - but you always assume the doctor knows best.

His little brother Gregor was less healthy when he was born. He got pneumonia when he was less than 24 hours old and was in hospital for three weeks. He does have asthma – he was always wheezy.

They were just unexplained symptoms we got used to. I just thought ‘that’s the sort of babies we make’.

Both my boys coughed a lot. Their noses were always running, their stomachs would fill up with mucus and they would vomit.  But their development was normal.  They were just unexplained symptoms we got used to. I just thought ‘that’s the sort of babies we make’.

Getting a diagnosis

When Euan started school he would regularly be sick in the early mornings - at school. The school nurse suggested we get him checked again.

I had to be very insistent with our doctor. I asked him to look at Euan as if he’d never seen him before. He said we weren’t using his asthma medicine properly. We made charts and followed his treatment to the letter but after a month there was still no change.

He sent Euan for a chest X-ray just to shut me up.

Our doctor has told me since that he sent Euan for a chest X-ray just to shut me up.

Afterwards he called me to say he had made an appointment with the consultant paediatrician the next day. In the waiting room it suddenly dawned on me that there must be something wrong.

The paediatrician said "this child has chronic lung disease – why hasn’t he been seen before?"

He pointed out Euan’s clubbed fingers and asked "didn’t you notice he had funny fingers?" I said "but both my boys have fingers like that".

At this point I realised that both boys had the same problems. I had to take in Gregor to see him the next day.

It's just a bit more difficult

They both have primary ciliary dyskinesia.

We went through a grieving process for the perfect children we thought we had.

It was devastating at first. We had so little information about PCD that we were really worried that the boys would never do normal things. We went through a grieving process for the perfect children we thought we had.

Actually they both do all the normal things – it’s just a bit more difficult sometimes.

We had to look for information and support ourselves. Now it’s easier to find out more but it can be scary too– there’s a lot of negativity out there.

My advice to parents would be to write down your questions as they come up. There’s no such thing as a stupid question. Some people think "I can’t ask that" - but those are the key things to ask.

We had to make some changes to accommodate the boys’ treatment regime.  They would often be in hospital for 2 or 3 weeks at a time too. I had to give up work to look after them and my husband had to work even harder to support us all.

Growing up with PCD

Family outdoors

When they were younger they had physio twice a day. We had to be quite organised. They used to complain about getting up early and Gregor in particular didn’t like his medicine. We had to use lots of different techniques to get him to take his medication often resorting to one of us holding him whilst other squirted the syringe into his mouth.

As they got bigger they recognised that treatment regime and medicines helped them to live their lives – although we still have to remind them when they’re feeling lazy.

We still worry, but about different things. Euan is at university and has to tell a new set of friends about his condition and manage it himself.  So far, he’s managed well but it never goes away completely - we’ll always be dealing with it in different forms.

I’d really encourage parents to take part in research. It’s the only way that things are going to change.  Educate your friends and family – so that they can help you.  Look for a support group. It’s incredibly helpful to have a chance to talk to people who’ve been through the same things.

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6 December 2016