Worried Mom of 2 yr old boy with PCD

Hi my 2 yr old son has PCD was diagnosed genetically when he was 6 weeks old, he has had growth and weight gain issues as well and has a enteral feeding tube in stomach for extra calories he has had tubes in ears twice that did not work he has hearing loss and needs hearing aid he has sleep apnea and had tonsils and adenoids out already he's had 12 pneumonias since birth and was born with collapsed lung which required intubation for weeks he also had liver problems and hyperbillyrubenima and pulmonary hypertension has any one or their family member had any of these health concerns with PCD diagnosis and can any one offer me support or hope that things will improve for my sons overall health

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  • Hi - sorry to hear that your son has multiple issues in association with PCD.

    I can comment on the tubes.... they don't tend to work with kids with PCD ... but the hearing loss may just be a temporary thing until he gets bigger. Many kids with PCD outgrow the hearing issues - or at least only have problems when they have a chest infection.

    As for the pneumonia..... all you can do is make sure that you do physiotherapy twice a day every day ... even if you think his chest sounds clear. Any change in symptoms (e.g. more coughs, wheezy, waking up more in the night, temperature etc) then get his sputum tested and start antibiotics asap.

    I assume that you have had a good look at our website pcdsupport.org.uk

    Wishing you all the best.

    Fiona

  • i can tell you that the ear issues should get somewhat better as he hits age 6-7, as the changing body makes the eustachian tubes angle downward better; this helps the mucus drain from the middle ears better. Get him the hearing aids (and tubes) in the meantime, to help him cope better. Tubes may not last long in us PCDers, but speaking as someone who had to grow up before tubes existed, having a tube in there would have saved me from a heck of a lot of ruptured eardrums and a reparative surgery to build me a new eardrum from a vein in my arm when I was 8. It's hell, having a middle ear infection that can't drain anywhere, waiting for the infection pressure to build up enough to rupture the eardrum---it HURTS!! So tubes can ease that up for him, at least.

    I quit breathing on them when I was born, and had to be resuscitated, though I then got by with just oxygen and suctioning. Failure to thrive, difficulty feeding, hospitalizations for dehydration/vomiting/GERD/ and T & A surgery at 10 months, like your son. They didn't get me hearing aids til years later, but I needed them. I currently have pulmonary hypertension, but no idea if I had it as a baby. But we DO tend to have a very rough time through infancy and early childhood, and then things often gradually get better---sometimes even a stretch of years in our teens where we're doing maintenance stuff, and have few infections. So there is hope.

    Treat what you can now---do the airway clearance activities without fail at LEAST twice a day---the more you clear the junk out of his nose, ears, and lungs, the healthier he is likely to be. And while he's still so small, he can't do much of that on his own, so you have to help him. But as he gets a bit bigger and CAN do more, start encouraging him to be as active as possible, because exercise is the very best form of airway clearance there is for us---anything that makes him cough up the junk is good---even if that's pillow fights at bedtime!

  • Thank you so much for the reply, it's nice to know there is hope for him

  • There's always hope! Even when we are older---I'm 62, now, and just had a lovely Cinderella period of almost 5 years where I didn't have to go in hospital and get IV antibiotics---unheard-of, especially in someone on oxygen 24/7, like me. But it happened, and I'm on the upswing again, after a trip to the hospital and home IVs. Feeling better than I have in ages. You just never know with PCD, you really don't. But a bit of advice---hard to keep from wanting to "make everything better" for your child, but try hard to treat him as much like a normal kid as possible---because he IS, first and foremost, a kid, like any other, and he doesn't want to feel any more different than is absolutely necessary. Let him do the things that give you a heart attack---because they're good for his soul. Taking care of his body does him no good, if he isn't allowed to be a regular kid when he is feeling well enough to. So let him!

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