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Original poster

Pulmonary Stenosis

5 replies

Calmomiletea · 17/12/2024 01:50

Is there anyone on here whose child has PS and is symptomatic with tiredness? I'm wondering, if they are, what severity they have?

My 4 year old was diagnosed at birth with mild, then discharged aged 2. But he has been abnormally tired for a year and I'm wondering if this could be the cause. I'm waiting to hear back from cardiology. Bloods came back clear, paediatrician couldn't see any issues, but decided to refer him.

OP posts:
Original poster
Calmomiletea · 17/12/2024 18:35

Anyone?

OP posts:
KC1234 · 17/12/2024 21:23

Hey, it’s a little different but my daughter was born with a heart defect which required surgery as a baby. She now has mild stenosis as a result of the surgery. Her cardiologist always asks about symptoms but then said that if the stenosis worsened we probably would t know about it, it would just be picked up on the scan.
That’s reassuring that you have been discharged from cardiology - does that mean they don’t anticipate that they’ll ever need to intervene?? We were told our daughter may not need intervention, but could require a balloon / stent procedure in future.
do you have any cardiac specialist nurses you can contact? X

Original poster
Calmomiletea · 18/12/2024 00:54

KC1234 · 17/12/2024 21:23

Hey, it’s a little different but my daughter was born with a heart defect which required surgery as a baby. She now has mild stenosis as a result of the surgery. Her cardiologist always asks about symptoms but then said that if the stenosis worsened we probably would t know about it, it would just be picked up on the scan.
That’s reassuring that you have been discharged from cardiology - does that mean they don’t anticipate that they’ll ever need to intervene?? We were told our daughter may not need intervention, but could require a balloon / stent procedure in future.
do you have any cardiac specialist nurses you can contact? X

Thanks for your reply. I am really concerned. His tiredness is not normal and now that it's been going on for over a year, I am really concerned that he should have been seen to long ago for it. I've read that in some children it goes away, but in others it can get worse. I can't believe I was only told yesterday that this is what he had, that it wasn't just a heart murmur. But my Dr wrote me off, said how he is sounds normal to her. So frustrating.

OP posts:
Crispybug · 19/12/2024 21:31

Hi @Calmomiletea my child was born with heart defects (including pulmonary stenosis) and has had surgery. Apart from the tiredness is there anything else worrying? How about growth, appetite and any breathlessness? I hope it doesn't take too long for an appointment, I can understand that you are worried. Do you still have the details for the cardiac nurses?

Treesnbirds · 19/12/2024 21:50

Calmomiletea · 17/12/2024 01:50

Is there anyone on here whose child has PS and is symptomatic with tiredness? I'm wondering, if they are, what severity they have?

My 4 year old was diagnosed at birth with mild, then discharged aged 2. But he has been abnormally tired for a year and I'm wondering if this could be the cause. I'm waiting to hear back from cardiology. Bloods came back clear, paediatrician couldn't see any issues, but decided to refer him.

I'm sorry I don't really know anything about this, but I would say trust your instincts and push to be seen again if you can. Sending strength to you. ♥️

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