Pcd and parents

[Olja]

Hello Everyone.

My daughter was diagnosed with PCD half a year ago. Since then, with inhalations and physiotherapy, she is much better. Still, I keep thinking she's sick. I can't accept that she really has PCD. How do other parents live with it ?. She is not yet three years old, and I want us to live normally, but she kept thinking to me that she was ill and that it would be like that for the rest of her life. I would love to hear the experiences of other parents. Thanks to all of you

[fionac66]

Hi - I am Mum to two boys (now adults) with PCD. In our experience the boys had lots of chest infections as children and spent a lot of time having Treatment in and out of hospital. We tried in between to give them as normal life as possible. Sometimes it was hard for us all. Both of them are doing really well as adults.

Wishing you lots of luck.

[Olja in reply to fionac66]

Thanks for your answer. Were they bad before the diagnosis, or is it difficult in childhood even if they have therapy? It was difficult for us before the diagnosis was made, she had crises every month. Are inhalations mandatory for life? Can you recommend me something that works best for their health? Do they have any vitamins or other supplements? Which sport is good? My daughter eats very poorly, especially breakfast. I wish you all the best, to be happy with your sons. Greetings

[fionac66 in reply to Olja]

They both did lots of sport at school. Running and trampolining very good as it shakes their lungs and makes them cough.

Both boys were fussy eaters - we found that doing physio before breakfast made them more hungry.

I would recommend you have a good read of the pcd support website pcd support.org.uk for ideas on how to make physio easier.

I gave my children multivitamins to make sure they had all the vitamins when they were small. They both eat healthily now.

[Morrison10]

Hi, I was born in 1935, but not diagnosed with PCD until I was 33. I lived during war in industrial Birmingham, going to bed every night in cold damp air raid shelter. Had mumps when should have been evacuated. Baby brother born before me died few months old, but my parents never talked about it. Walked to school on own every day carrying gas mask and bucket to pick up shrapnel past prisoners of war clearing up debris from bombing. I was fortunate to pass exam to go to grammar school first year they were free, could join in most activities, but had three months in bed first winter there with pleurisy and pneumonia, treated with koalin polticies. Had regular “colds” and when about age 25 had pleurisy treated with first antibiotics, worked like magic. I worked full time until had my two daughters, then returned to work when they were in teens. Had regular hospital appointments, but not with PCD specialists until very recently. Used to ride scooter or small motorbike to hospital because of traffic and difficulties of parking, and managed to lead normal life, travelling abroad all over, both holiday and business. Wanted to scuba dive, but couldn’t do deep sea, but found reef in very shallow waters in Grand Cayman. There’s always way round issues! Life has been more difficult recently, need iv antibiotics, daughter was going to take me to hospital for initial set up last autumn but she badly fractured her leg and ankle few days before, and cannot yet drive. My other daughter has advanced MS, doesn’t live locally, neither got partners or children. Most of my friends now sadly dead or don’t drive.Have done own iv antibiotics at home six times whilst husband alive. Hospital are adamant that cannot be set up at home although I’m willing to take risk. Keep own oral antibiotics, decide when to take, and keep full records going back many years. Nebulise twice daily, and do postural drainage afterwards, and pay for respiratory physio twice a week, big help. Although NHS regulations for PCD specify physio, I have never had it until I started paying two years ago. Know that patients in London get home visits, but it’s another example of north south divide. My best wishes for you and your daughter, Jean

[Morrison10]

See my post above, did in hurry!

[Minehead123 in reply to Morrison10]

You sound an amazing woman Jean. You put me to shame.I worked up until 4 years ago but had to stop due to my husband's ill health. Sadly died in 2021. I was told grief

stays in the lung and haven't felt right since. Have an amazing consultant and physiotherapist and have been

to the gym and online exercises. Found it helped being

In the presence of other people in a similar situation.

I find it hard to become motivated......maybe I'm still going

through grief. I found your history so fascinating. You

Must be a very strong woman! ...Best wishes Chris

[Morrison10 in reply to Minehead123]

Thanks, sorry to hear your husband died in 2021, yes it’s difficult, glad you’re able to go gym and socialise bit. Because I’m now very vulnerable don’t go into any public places, boring but necessary. Best wishes, Jeanx

[Kay2021]

Hello, I'm totally new to this group but reading through all your stories.

I have an 18 month old girl who had PCD with Situs Inverus. This was picked up on our 20 week scan and her diagnosis was confirmed at 6 months old.

We also have a 5 year old who hasn't been tested but also displays no symptoms and has never had antibiotics so presuming she's not got it.

We have got in a pattern of doing percussion physio twice a day and are visiting the Brompton Monday to learn the PEP and hypertonic Saline therapy. We now watch 'Waffle Doggie' (drives me insane but means she sits still for 20 minutes) and do physio to this.

I'm not going to lie I have days when it gets me down as I worry so much about her and wish I could carry it for her, however feel so lucky she has had an early diagnosis as means can do everything we can from a young age to help prevent long term damage.

How are you coping with the Physio?

speak soon

Sam x