3 month old had nasal brushings yesterday

Hi, my daughter has had nasal brushing yesterday for PCD, she is 3 months old. I'm terrified and can't sleep. We went to a respiratory appointment yesterday expecting to be told there was nothing to worry about but this was all sprung on us. Don't really know what I'm expecting from this post but don't know where to turn. They said it would be three months for diagnosis which seems forever.

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  • Hi - so sorry to hear that you are so upset. I can recall the same happening to us .... Both our boys have PCD and we found out on same day. Now 18 and 20 and doing all the normal things teenagers do. Happy to talk to you if you want to give me a ring - help line 0300 111 0122 (cost of local call from landline) - i am around now/this evening or tomorrow afternoon after 3pm. Look forward to hearing from you. FIona

  • aww bless she so young least if she has PCD you will find out early and they will be able to manage it my little boys 3 in September and been suffering since the day he was born but all my docs said was ahh he was prem he just congested or suspected asthma his heart is on the wrong side that's why they suspect PCD but most people have no heart problems but his heart beat sometimes skips we get his test results back on the 17th june least if she gets diagnosed at 3 months she will get the treatment she needs you won't have to watch her suffer it's heartbreaking but good luck I also hope she don't have it

  • Hi there. It is so hard waiting, especially when you had no idea beforehand that this could be an issue. My baby is 9mths diagnosed at 7mths but the nasal brushings were mentioned after he was born so we knew it might be a reality very early. Our babies brushinga were taken in dublin and sent to southhampton and it took ages to get them back. It's a shock no matter what way you get the news. And there is definitely a grieving process- we have been going through the stages back and forth but I do think we have accepted it now. I can say that I am very very grateful that we were diagnosed so early. PCD is very managable if you follow the maintenance plan which is also very doable. And early diagnosis is very helpful. It's ok to be upset. It's totally understandable. You should take Fiona up on her offer- she is an expert on all this and a very kind person. All the best, Siún

  • We went through this in August last year. Though my girl's heart is in on the right, so we knew what the brushings were going to say. I felt/feel the grief like waves. A huge one knocks you off your feet. Then you feel okay, until the next one knocks you over. Then you're okay, but the waves keep coming... A little farther apart and a little less powerful each time and they don't knock you over anymore. I still have days where it's lapping at my ankles, so to speak.

    I wonder, parents with grown children, is there such a thing as coming to terms with it completely?

    Anyway, you are in a great position that she's so young and you can keep her healthy. And there's never been a better time to be born in terms of medical advances.

  • My daughter was born 7weeks early thats when they noticed she is dextrocardia with situs inversus so her heart liver & stomach are on the opposite side! So she was referred to the royal brompton she had the nasal brushing at around 4 months. I cant remember how long the results took but we started physio straight away even though we didnt have the results but deep down i already knew it would be positive. The first year was hard getting the right medication she was a little behind on things due to always being poorly and being born early. She ended up in hospital at around 6months and then again a few months later. After getting a consultant near us a physiotherapist and district nurse things got alot easier plus the support from the royal brompton. Erin is now 3 and has inhalers and regular anti-biotics and regular physio touch wood hasnt had to stay in hospital since jan 2014!

    Its fine to be upset trust me i still have days where it gets to much but getting an early diagnosis is a good thing although its hard it keeps them healthier starting physio early.

    I want her to have as normal life as possible shes been going to play school and nursery now we go to play groups etc as soon as i think shes getting a cough i get her checked out at the gp's or with the nurse.

    Im still abit ott count her breathing when she sleeps! And constantly trying to remember appointments. Sometimes i feel like crying when it gets over whelming but Erin hopefully doesnt let it get to her so much! Shes 3 and knows what a stethoscope is as shes so used to them haha!

    If you ever need to chat im always about xx

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