symptoms of pulmonary stenosis

[PATTY]

My daughter was diagnosed with pulmonary stenosis when she was one month old.  She is now 15 months old.  It was mild at first then it got into the moderate stage and now it s in the severe stage and she is scheduled for a sedated echo on Dec 29th.  The dr told us that in the mild and moderate stages there are no symptoms and now that s she is in the severe stage, she still displays no symptoms, however, we just thought of something.  She does sleep alot.  She takes a two hr nap in the am and a three hour nap in the afternoon and sometimes after dinner she ll take a nap and then we put her to bed at eight and she sleeps til eight the next am.  Sometimes while she is playing, she ll lay down on the floor for a couple of minutes like she is resting.  So my husband and I are wondering if this is a symptom of this disease.  And I know that any time anesthesia is concerned there is always that danger present. Is there cause for concern here cuz she might have William's Syndrome?  I read somewhere that anesthesia is very dangerous for folks with William's Syndrome.  She has not been diagnosed with the syndrome yet but we were just wondering.  Thanks for listening and answering us.

[nine]

My daughter was born with a congential heart defect, she had patent ductus which corrected itself, then she had a septal defect and pulmonary stenois. She was also a premiee. She had open heart surgery when she was two and seemed to be doing really well. She is 11 now and was getting a little tired, her stomach has been hurting, she has a headache on and off, and sometimes when she's sleeping she coughs. We took her down and everything was looked good two years ago, but this year the new doctor is seeing a change which concerns him. He told me that her EKG one of the reading was at 475 and is should be at 450, he says that we need to see why this is happening. Her pulmonary valve is also leaking down where her septal defect was repaired, and the left side of her heart is starting to enlarge. I was told there was a  chance that she could need more heart  surgery when she had her first one done.  What do you think our chances are of getting by without anymore sugery. I don't think that this looks good for us and that it is possible we could end up with more sugery. At this point the doctor will not advice us until he talks to the other cardilogist. She is going up for a treadmill stress test, we have told her this is for her own good and that we must work with the doctors if we are to help her!
Nina

[Nina Morgan]

My daughter was born with a congential heart defect, she had patent ductus which corrected itself, then she had a septal defect and pulmonary stenois. She was also a premiee. She had open heart surgery when she was two and seemed to be doing really well. She is 11 now and was getting a little tired, her stomach has been hurting, she has a headache on and off, and sometimes when she's sleeping she coughs. We took her down and everything was looked good two years ago, but this year the new doctor is seeing a change which concerns him. He told me that her EKG one of the reading was at 475 and is should be at 450, he says that we need to see why this is happening. Her pulmonary valve is also leaking down where her septal defect was repaired, and the left side of her heart is starting to enlarge. I was told there was a  chance that she could need more heart  surgery when she had her first one done.  What do you think our chances are of getting by without anymore sugery. I don't think that this looks good for us and that it is possible we could end up with more sugery. At this point the doctor will not advice us until he talks to the other cardilogist. She is going up for a treadmill stress test, we have told her this is for her own good and that we must work with the doctors if we are to help her!
Nina

[Teresa]

My son (age 5) has had a heart murmur since birth.  Recently we found out that he will need surgery because he has an obstruction (narrowing) in his left kidney.  The procedure is called pyeloplasty.  The surgeon recommended that he has an echocardiogram on his murmur to see whether it was innocent or not.  The results came back showing mild supravalular pumonic stenosis.  All other areas of the heart apparently were unremarkable.  Is this a worry?  What exactly is this?  Does it by chance have anything to do with his other narrowing problem? Or are these two completely unrelated and just something that happens.

[Teresa]

My son (age 5) has had a heart murmur since birth.  Recently we found out that he will need surgery because he has an obstruction (narrowing) in his left kidney.  The procedure is called pyeloplasty.  The surgeon recommended that he has an echocardiogram on his murmur to see whether it was innocent or not.  The results came back showing mild supravalular pumonic stenosis.  All other areas of the heart apparently were unremarkable.  Is this a worry?  What exactly is this?  Does it by chance have anything to do with his other narrowing problem? Or are these two completely unrelated and just something that happens.

[Teresa]

My son (age 5) has had a heart murmur since birth.  Recently we found out that he will need surgery because he has an obstruction (narrowing) in his left kidney.  The procedure is called pyeloplasty.  The surgeon recommended that he has an echocardiogram on his murmur to see whether it was innocent or not.  The results came back showing mild supravalular pumonic stenosis.  All other areas of the heart apparently were unremarkable.  Is this a worry?  What exactly is this?  Does it by chance have anything to do with his other narrowing problem? Or are these two completely unrelated and just something that happens.

[CCF CARDIO MD JMF]

Dear Patty,

I would not worry about Williams syndrome at this point.  As far as the pulmonic stenosis, this causes an increase in pressures to the right side of the heart and therefore to the lungs and may cause your daughter to fatigue easily.  

The echo should help to delineate this further.