Question about PWS - Vascular Birthmarks Foundation Forum
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Old 06-27-2014, 02:14 PM
Dknight Dknight is offline
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Join Date: Jun 2014
Posts: 1
Default Question about PWS

I have a question that I wonder if anyone has any feedback and want to make sure I am asking the correct questions of the doctor.

My 6 year old daughter has a PWS on the lower left part of her face including some of her neck and ear. She has had no other issues since birth associated with the PWS. We see a fantastic pediatric dermatologist at our local children's hospital and the pulse dye laser has work beautifully on her. Now that the background is out of the way she is currently being worked up by her pediatrician for blood in her urine. She does not have an infection and all of her labs have came back normal. She had a renal ultrasound on Wednesday and we got the results back today. She was clear for kidney stones, but both kidneys are enlarged and dilated, she also has a cyst in her right kidney. We are seeing a nephrologist on Monday for further testing and evaluation. My question is could this be related to the PWS? Is there anything specific I should be asking the doctor to help rule that out or to rule it in? I don't think it is related, but I just want to be sure. I don't want to be the panicky pushy mom but I do want to be well informed and ask the best questions I can to get her treated properly.
Thanks !!

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Old 06-27-2014, 09:27 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

Hi and welcome!

I wouldn't know if the two things are related, but if your physician thinks so, be sure to ask for additional resources for information. But I can't think of even another parent that has had a similar problem.

Let us know what happens tomorrow!

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