Anyone similar ? : Hi , my daughter is... - PCD Family Suppor...

PCD Family Support Group (UK)

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Anyone similar ?

Susan1983
Susan1983

Hi , my daughter is 12 has had a wet cough (the amount of stuff she coughs up is unreal)and repeated chest infections since she was 18 months old , always snotty have been on various antibiotics almost constantly for the last 3 years ! Her doctor had referred her for testing for pcd and is starting her on physio and inhaled antibiotic nebulisers now as she continuously has a infection that just won’t clear , she has been tested for cf which was negative. Can I just ask as he said it was not very common to not of had breathing issues at birth and to start so late , although she always had snotty nose and sounded bunged up almost from birth and had her tonsils and adenoids out at 2.5 as they thought that was what causing her breathing problems ! Just wanted to see if anyone had similar symptoms just want her to be well again !! Thanks in advance for any replies !

7 Replies

Hello, I’m sorry to hear about the situation and issues that you have been going through and your story is almost identical to ours. Our daughter is about the same age. She has been in hospital countless times, having many procedures but how are your daughter’s ears? Ours has had problems since birth but seem to be improving now.

I’m glad that you are being referred for a PCD test. We had our diagnosis when she was 2, having physio and using a nebulizer regularly. It is becoming more manageable now.

She has always suffered with ear infections not as often as her chest , was never just a normal ear infection always ended with bleeding and perforated ear drums . She has never had a hearing test but has the telly extremely loud and often asks you to repeat things but has been going on so long we just see this as normal now !as always been seen at hospital and nothing was ever said ! Main priory has always been her chest !

Ours had lots of issues with the ears, had a mastoidectomy in the right ear about 5 years ago. Also had perforated drums and had to sit at the front of the classroom in school.We were fortunate here, her diagnosis was picked up early so we had a very aggressive few years!

Susan1983
Susan1983 in reply to Susan1983

Does sound very similar ! Just feeling so sad that she has been under various consultants since being 18 months and this has just come about now when she has almost every symptom to fit the diagnose ! Just hope not to much damage has been done ! She had a cat scan about 3 years ago and had minimal lung damage so really hoping she will be ok !

That’s good to hear about the scan results. You’re in the UK? Which area? We had a cilia biopsy done in Leicester, when we came back to visit family. This confirmed the clinical diagnosis that we initially had. We now a more specific care plan to help manage her PCD

We were under our local hospital but are now under the care of Southampton

TerryBun
TerryBunAdministrator

If your daughter has now been referred to Southampton General Hospital, she’s In good hands, as it one of the few diagnostic centres in the country that tests for PCD.

I believe I was similar when I was born, didn’t have too much in the way of actual illness in the first couple of years, but was a bit snotty and had a cough, that got a lot worse after I had measles at the age of two. This got worse over time and I was diagnosed with bronchiectasis, had various surgeries, including tonsils and adenoid removal, to try and help with my hearing loss. PCD was not diagnosed until I was thirty six years old and already had children of my own.

I’m sure Southampton General will guide you in the right direction whatever the outcome of your daughter’s testing.

Wishing you all the best.

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