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Old 02-09-2008, 01:20 AM
amyp226 amyp226 is offline
Junior Member
Join Date: Feb 2008
Location: Teton Valley, Idaho
Posts: 4
Default New Baby/PHACE/Necessary Tests?

Hello, our new baby Natalie is one month old today and has port wine stains/ possible hemangiomas. Before our one week appt we saw a geneticist from Denver who thought the raised bump on her chin might be a hemangioma and we should just keep an eye on it to see if it got bigger, then we might need an MRI and other tests to check for PHACE syndrome.

Last week we took Natalie to the doc for a cold and our local doc found possible hemangiomas/bumps under her tongue and in her throat. She consulted with the Denver doc again who said we should come down to Denver for sedated MRI/MRA, cardiac evaluation, eye exam, etc.

Our local doc is concerned with the bumps in the throat causing problems with breathing and eating if they get larger, which I understand. But I don't understand why we would need and MRI and all of the other tests if the possible hemangiomas haven't gotten any bigger (they haven't). All the docs have already evaluated her heart and it is fine. No one has seen any signs of brain problems, and wouldn't those have shown up on ultrasound anyway? Her eyes seem fine as well. My doc couldn't explain why we would need MRIs and other tests either.

We're in Teton Valley, Idaho, a very small place across the mountains from Jackson Hole, Wyoming where Natalie's doctors are. We need to go to Salt Lake City (4.5 hours), Boise Idaho (5.5 hours) or Denver (9 hours) to see a specialist. I think seeing a specialist is a good idea, but I don't understand why the whole battery of tests should be ordered and arranged before a specialist even determines if they are necessary.

Should I just do what the doctors say, or does this seem unnecessary to anyone else? The bump on her chin is tiny by the way, about the size of a pen tip.
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