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  #1  
Old 02-09-2008, 01:20 AM
amyp226 amyp226 is offline
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Join Date: Feb 2008
Location: Teton Valley, Idaho
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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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  #2  
Old 02-09-2008, 01:34 AM
nickbar nickbar is offline
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It may be necessary to know the extent of any internal hemangiomas. I live in the NW and might be able to help you contact Doctors. Would Portland Or be too far to travel. Oregon Heath Science University Hospital has a team with extensive experience in managing hemangiomas, and one of the team members is a researcher in PHACES association. I can give you the information to contact them if you would like. You can also contact Dr. Metry from this site on ask the expert as she is the PHACES expert.

I am the Admin. Director for VBF, and as well I manage a support group (on msn) http://groups.msn.com/vascularbirthm...on=get_threads I would also like to point you to a PHACES support group with other experienced parents and they may be able to guide your thru all the necessary steps. YOu have to apply to join both groups (basically you have the mention why you want to join so they know you are a real person with need in the subject area) The PHACES group is private and only members can read messages. The group I manage is a generic vb support group and is public, but I do have to approve members based on knowing they are a family dealing with vascular birthmarks and related.

Feel free to contact me anytime.
Corinne
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  #3  
Old 02-09-2008, 01:46 AM
quinnysmom quinnysmom is offline
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Location: sault ste marie, ontario Canada
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Hello

My name is Jen and I am mom to Quinn 21 Months who has PHACES. I run the PHACES support group and the PHACES families website
http://groups.msn.com/PhacesAssociationSupportGroup

Please come to this group and join, I will approve it right away.

My email is jenniferduncan@phacesassociation.com

These tests are very necessary and needed to rule in or out PHACES. It is very important that all children be evaluated for this disorder which can run from very mild to severe. ALl cases are different but it is very necessary to know what you are dealing with. We have many families whose children are at the very mild end and are having very normal lives.

Please feel free to contact me and I will help you in any way that I can.

Jen
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Old 02-09-2008, 04:11 AM
amyp226 amyp226 is offline
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Wow Corinne and Jen, thanks for the quick responses, I will sign up for those groups right away and see about getting an evaluation appointment for Natalie. I could get to Portland, but Salt Lake and Denver are closer, direct flights or a shorter drive, it seems there are providers in both of those cities (we just moved out here from San Francisco, would have been a lot more convenient if we were still in the Bay Area!) I'm going to see if I can put up some pix of Natalie's birth marks . . .







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  #5  
Old 02-09-2008, 04:12 AM
amyp226 amyp226 is offline
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The raised bumps/possible hemangiomas are the bump on her chin below her lip and the one on her neck.

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  #6  
Old 02-09-2008, 04:25 AM
quinnysmom quinnysmom is offline
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She is a DOLL! Beautiful little girl.

I just approved your membership for the PHACES group so you are good to go.

I wanted to mention to you that many of the PHACES kids were thought to have port wine stains ion the beginning because segmental hemangiomas do tend to have that appearance in the beginning. Sometimes only a CAT or MRI will tell the difference. This was the case with my son.

You will read stories of some of the children that may be upsetting but please know that most of those are extreme or severe cases. Many of our kids do have mild cases with little to no complications aside from the hemangioma and many children do not have serious hemangioma complications.

Hugs to you and your beautiful little baby.

Jen
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  #7  
Old 02-09-2008, 04:35 AM
amyp226 amyp226 is offline
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Thank you Jen. I was just over on the PHACE site and was reading but can't seem to yet find the "post reply" button . . . Some of the stories had me crying, such precious little ones. I am now convinced I need to get to Denver or Salt Lake and have everything checked out.
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Old 02-09-2008, 04:44 AM
elysmom elysmom is offline
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Join Date: Dec 2007
Location: Chicago
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Hi Amy,
This is Cristina mother to 19 month old Elyse. She also has PHACES. I just wanted to welcome you and tell you how beautiful your baby girl is. Love the last picture.

Good luck!

p.s
In each entry in the PHACES board.. you can click the "reply" button inside the box. The area is light purple. sorry I wish I could explain it better.

Cristina
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