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*Usm123 can I ask you a question about PVS?*

Rachel SonnierRachel Sonnier member
edited November 2013 in Special Needs
I saw you mention on a previous post that your child has pulmonary vein stenosis. I was just wondering if you knew of any good resources on this topic, or have any useful info to share?

My daughter is being sent to a cardiologist to be checked out for this in two weeks, as she has a strong family history of aortic stenosis, as well as pulmonary stenosis, in her birth family. The only info that I have is that her birth father and her two biological half sister all have this, and one of the sisters had to have a valve replacement. I don't know much about it other that what I googled. She currently appears to be healthy and is only presenting with a murmur, but her ped is concerned because of the family history and wants to be followed by a cardiologist.

Is there a wide range in severity with these types of issues, and what are the treatment options if treatment is necessary?
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Re: *Usm123 can I ask you a question about PVS?*

  • Rachel SonnierRachel Sonnier member
    She does have some rapid breathing, but she is a newborn, so I think that is probably normal. The apt will be on dec 3rd. She seems to feed pretty well from a bottle and is gaining weight. She has trouble with her suck, swallow breathe pattern and tends to pant quite a bit during feedings, and doesn't exactly latch onto the bottle, but she is eating till full. I am wondering if that is just par for the course for her age and bottle feeding. I have never bottle fed an infant this young, so I am not 100% sure what she is supposed to be doing. She has not had any color change except when undressed and cold.
    My DS had feeding issues, but it was due to his low tone and he did not gain weight as quickly as she is, so I tend to think she is doing well.
    Thank you so much for the info! :-)
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